We're coming up on two weeks back in Children's Mercy and a lot has changed in the last couple weeks. In Bruce, in myself, in future plans. But that's life; you can't change it but you can adapt. And I am like a karma-karma-karma-karma-karma chameleon.
Health update :: If you recall back to last month, we thought Bruce, er, we were told by neurologists and gastroenterlogists, he was having a type of reflux that triggered 'seizure-like' episodes. So antacids were prescribed and Bruce got a purple pill a few times a day...and just when I mastered how to give a 4 month-old a pill, plans change. Big time. Last week a new neurologist came on board and met Bruce herself for the first time. She had heard about these episodes and wanted to see for herself. Since Bruce had been admitted I happened to have one captured on video on my new fancy phone and showed her. I'm a face reader and I didn't like what I saw on her face. Her funny resident with a bow tie saw the look too and knew what she was thinking. Her diagnosis, Infantile Spasms. And they are as scary as they sound.
Most babies are born with electricity in their brains that shows up on EEGs when they have Infantile Spasms. Bruce was not born with them so his EEGs have never shown the hypsarrhythmia that detects spasms but they can be triggered by issues in the brain and in Bruce's unique case, his brain abscess is the culprit. This is not something they have seen from brain abscesses but more typically from brain lesions or tumors. So, there was much arguement between all of his doctors that this was an incorrect diagnosis and we shouldn't call it Infantile Spasms but really after much debate, it is what it is.
He's started on a new medication that seems to be helping so far. He is not yet worked up to the dose where they will hopefully go away all together but that takes time. We have some options, medication-wise, to treat them because the goal is to eliminate them all together. And it is a possibility that he will grow out of them as his brain abscess heals. Infantile Spasms are kinda like super seizures...seizures don't hurt or do damage, unless you have one and fall and hurt yourself, but they don't cause brain development issues like spasms do. Bruce is behind physically developmentally but we knew that from all of the time he's spent in a hospital crib. During the second brief time home, we started working with Missouri First Steps and that will definitely continue but as a parent, I need more. And time will tell what, if any, damge has been done from the spasms.
When I was pregnant, I made some life-changing decisions with my unborn child in mind. It was a year ago exactly that my whole world changed and I am so thankful. But pregnancy does that for every woman. It is beautiful. I was a bubbling ball of hormotional momma hormones and willing to change my life plans and make every decision for the heartbeat growing inside of me before I ever made a decision for myself. And now that Bruce is here and I can touch him and hold him and shower him with momma kisses, nothing has changed. I am still making every decision for him as my number one priority.
So much changes for people when they become parents. For those of you who know John's and my history together, it's been trying at best. But we have overcome so much together and now we are raising a baby with needs we never dreamt about. Hell, we are raising a baby with needs no doctor ever dreamt about. An infant diagnosed at 13 days old with Pompe Disease who overcame hypertrophic cardiomyophathy within two months of a new treatment who then caught a common bacteria but then turned into bacterial meningitis and resulted in a brain abscess that is now causing Infantile Spasms? That's like a twisted medical version of the M.A.S.H. game I played as a kid to figure out which sports car I would drive and early 90's heartthrob I would marry. It's certainly not text book. And I drive a Malibu.
Plain and simple, Bruce is a medical miracle. We have a wonderfully unique little boy who is so danged cute. And we're going to make decisions that are out of the box because we have a very out of the box situation and want the best for Bruce, no matter what.
Last week ended with a conference with five of Bruce's many specialist doctors to come up with a plan for little man. I think they've got a good one in place and tomorrow is a new day. This week he will be getting a permanent feeding tube in his belly that will help administer all of his meds and always work on feedings. Also this week I have the numbers of some development programs to enroll him in. Where ever and whatever, it'll be for his best interest!!
Sunday, October 30, 2011
Wednesday, October 19, 2011
It's me again, Margaret....tehehehehee!!
Do I sound like a broken record?? One would think they would go craaaaaazy for as much as we have been through but I don't think I'm too bad.....YET!
Bruce is back in Children's Mercy. His infusion Monday went fantastic but I brought to attention his newest medical mystery....a black tongue. From what I heard, there was some slight panicking on behalf some of the staff but quickly a cause was found and it's from one of the strong antibiotics. Hopefully next week when his 4 months of antibiotic therapy is over, his black tongue will go away. (On a side note, I did make Halloween cupcakes the day I noticed it and they did have black marshmallow fondant but I can assure you, my 5 month old did NOT eat the cupcakes.) I thought it was ironic though.
But the tongue is not why he's back. On Tuesday, he had Special Care Clinic and Infectious Disease appointments. For the last week now little man has been incredibly fussy, which babies do, but as parents you know your child and if something is wrong. With all that Bruce has been through this summer, the docs agreed a ct scan would be helpful to make sure everything with the shunt was alright and nothing was out of place. Fortunately, everything looks ok shunt wise but on the ct scan, they noticed the ventricle is slightly enlarged. Which is concerning. So they admitted him and a bunch of tests have started again.
Right now, we really don't have any answers. The neurologist stopped by today and upped his seizure meds because come to find out, he's chunky. I guess he's been putting on too much weight but as a momma, that's music to my ears. There is nothing wrong with a healthy, well-conditioned baby. We're waiting to hear from neurosurgery if they have any suggestions but last we knew, they weren't too concerned. So, it's literally a waiting game. Bruce is still fussy but the nurses on 5 Sutherland are glad to have him back. Secretly, I think he's happy too to see his ladies.
Back to the 'too many chefs'. Every doctor has their own agenda when it comes to Bruce but the end goal really is to get him healthy. The communication has been lacking some but hopefully our geneticist is going to step up and herd up the free-ranging cats and get everyone on one page. Her theory to Bruce's poor eating habits is from the damage done to his brain from the abscess and suggests maybe a more permanent tube in his stomach for feeds. We were hoping as parents that the antibiotics were the culprit and once he was off them, he'd feel better. It will be interesting to see how next week plays out and how Bruce responds. A g-tube may be necessary but one thing is for sure, we will work with Bruce each and every day to make sure he is learning and growing and doing as best as he possibly can. Soon we meet with a Behavior and Development specialist at CMH and we'll get the ball rolling with as many programs and work as he needs!
When we were riding up the elevator Tuesday to Bruce's first appointment, we ran into his old NICU buddy's grandma. His buddy was born in March, two months premature (his due date was the same as Bruce's) and had a lot of respiratory issues. Finally after 7 months, he was getting to go home!! We were so excited for them and wish them the best of luck on the outside!!! Hopefully one day his momma and I can get the two ornery fellers together for a play date and we can tell them both how many headaches and sleepless nights they gave us....and how proud we are of them for growing big and strong!
Surprisingly, but then really not, we are in our same room we had six and a half weeks ago. It's like they saved it for him. It feels a little too much like home.....but I do enjoy the view of Union Station twinkling in the night lights as I sit here and type!
I started working, YAY!! It's a fantastic opportunity to do some things I really love....organize, data entry, emails and blog! I know, I'm a dork. It's for a Kansas City-based online marketing company, Turn The Page Online Marketing, and I get to do pretty much everything from my computer. And my computer goes with me everywhere - home and hospital - so I have something to focus on in between doctors and nurses popping in and out and while little man snoozes away at night. It's a great company and has some really great people working and I'm soooo excited! While I miss all the guys and farmers and office folks at the coop in Iowa, I'm happy I can do something that allows me to learn a new industry and be with Bruce as much as I am. I'll still spend some time this winter sitting around drinking coffee with all my favorite farmers though....
So that's the latest. I haven't made arrangements to stay at Ronald McDonald house yet because who knows how long this stay will last but if it looks like we'll be here throughout next week, I'll get a room. For now I'll be bunking in Liberty at mamacita's...home cooking beats cafeteria food!
Bruce sends his love and his parents say THANK YOU for the continued support and prayers!!
Bruce is back in Children's Mercy. His infusion Monday went fantastic but I brought to attention his newest medical mystery....a black tongue. From what I heard, there was some slight panicking on behalf some of the staff but quickly a cause was found and it's from one of the strong antibiotics. Hopefully next week when his 4 months of antibiotic therapy is over, his black tongue will go away. (On a side note, I did make Halloween cupcakes the day I noticed it and they did have black marshmallow fondant but I can assure you, my 5 month old did NOT eat the cupcakes.) I thought it was ironic though.
But the tongue is not why he's back. On Tuesday, he had Special Care Clinic and Infectious Disease appointments. For the last week now little man has been incredibly fussy, which babies do, but as parents you know your child and if something is wrong. With all that Bruce has been through this summer, the docs agreed a ct scan would be helpful to make sure everything with the shunt was alright and nothing was out of place. Fortunately, everything looks ok shunt wise but on the ct scan, they noticed the ventricle is slightly enlarged. Which is concerning. So they admitted him and a bunch of tests have started again.
Right now, we really don't have any answers. The neurologist stopped by today and upped his seizure meds because come to find out, he's chunky. I guess he's been putting on too much weight but as a momma, that's music to my ears. There is nothing wrong with a healthy, well-conditioned baby. We're waiting to hear from neurosurgery if they have any suggestions but last we knew, they weren't too concerned. So, it's literally a waiting game. Bruce is still fussy but the nurses on 5 Sutherland are glad to have him back. Secretly, I think he's happy too to see his ladies.
Back to the 'too many chefs'. Every doctor has their own agenda when it comes to Bruce but the end goal really is to get him healthy. The communication has been lacking some but hopefully our geneticist is going to step up and herd up the free-ranging cats and get everyone on one page. Her theory to Bruce's poor eating habits is from the damage done to his brain from the abscess and suggests maybe a more permanent tube in his stomach for feeds. We were hoping as parents that the antibiotics were the culprit and once he was off them, he'd feel better. It will be interesting to see how next week plays out and how Bruce responds. A g-tube may be necessary but one thing is for sure, we will work with Bruce each and every day to make sure he is learning and growing and doing as best as he possibly can. Soon we meet with a Behavior and Development specialist at CMH and we'll get the ball rolling with as many programs and work as he needs!
When we were riding up the elevator Tuesday to Bruce's first appointment, we ran into his old NICU buddy's grandma. His buddy was born in March, two months premature (his due date was the same as Bruce's) and had a lot of respiratory issues. Finally after 7 months, he was getting to go home!! We were so excited for them and wish them the best of luck on the outside!!! Hopefully one day his momma and I can get the two ornery fellers together for a play date and we can tell them both how many headaches and sleepless nights they gave us....and how proud we are of them for growing big and strong!
Surprisingly, but then really not, we are in our same room we had six and a half weeks ago. It's like they saved it for him. It feels a little too much like home.....but I do enjoy the view of Union Station twinkling in the night lights as I sit here and type!
I started working, YAY!! It's a fantastic opportunity to do some things I really love....organize, data entry, emails and blog! I know, I'm a dork. It's for a Kansas City-based online marketing company, Turn The Page Online Marketing, and I get to do pretty much everything from my computer. And my computer goes with me everywhere - home and hospital - so I have something to focus on in between doctors and nurses popping in and out and while little man snoozes away at night. It's a great company and has some really great people working and I'm soooo excited! While I miss all the guys and farmers and office folks at the coop in Iowa, I'm happy I can do something that allows me to learn a new industry and be with Bruce as much as I am. I'll still spend some time this winter sitting around drinking coffee with all my favorite farmers though....
So that's the latest. I haven't made arrangements to stay at Ronald McDonald house yet because who knows how long this stay will last but if it looks like we'll be here throughout next week, I'll get a room. For now I'll be bunking in Liberty at mamacita's...home cooking beats cafeteria food!
Bruce sends his love and his parents say THANK YOU for the continued support and prayers!!
Friday, September 30, 2011
It's so quiet in the middle of the night but I should be sleeping....
Woohoo! It's Fall, a close second favorite to the non-'burn the hair on your toes, it's that hot' days of summer! Momma is happy...and a happy momma means less grumbly comments under her breath and more smiles, less "find something in the fridge yourself to eat because I had a bowl of cereal and you're a big boy" and more crock pot cooking, less laundry on the kitchen table and more festive decorations, and (probably John's favorite) less "knock off your damn snoring or I'll shove your face in a pillow" and more, well, ok that hasn't change too much!
September was here...I think?! It's still been great to be home! Bruce is really growing and his body is healing from this oh-so-crazy summer. Yesterday, he had a MRI and it showed the brain abscess is regressing (great news!) but there is some concerning swelling the neurosurgeon is going to keep an eye on (eh) but the vp shunt is working great! Infectious Diseases has ordered another month of his super strong antibiotics (eh) so the feeding tube is staying put til those are finished but he has been eating fairly well lately! We started some cereal last night and that has been a hit so far. GI gave the go-ahead to start solids but he's to remain on the Nutramigen AA and off breastmilk.
Bruce's seizures started acting up again a couple weeks ago and the neurologist placed him on some stronger anti-seizure meds. When the kid started tapping his left leg and left arm and keeping time, I knew something was up because his father and I have no rhythmm, whatsoever. None. Nadda. But, the meds have helped and we haven't seen any new activity since, except for what we thought were seizures the other night. All of the medications Bruce is on are wicked strong and keep his belly upset, hence the feeding tube. Which really is the handiest tool for giving meds when he's sleeping......no fights. Yet, a catch-22.
But these latest 'seizures' are in fact, not. They are episodes consistent with Sandifer's Syndrome which is when the baby is rolling his head and moving his arms repeatedly in attempt to open his esophagus to let the acid out. I called back down the hospital earlier this week and the neurologist said this was reflux activity and to call GI. Luckily, we had an appointment already after the MRI. I was describing the episodes to the GI doc and he started to go off on an intelligent spill about an Englishman named Sandifer and I kinda burst his bubble when I said I found it on the internet the night before....Momma's head got a little inflated for playing doctor but quickly deflated when he said I had to give Bruce a pill twice a day. Yep, to a 4 month old. Chuckle, chuckle, funny man. But, I will say your joke about Bruce's 'Howitzer' antibiotics compared to normal 'pea-shooter' antibiotics was funny...
There are other ways of giving Prevacid but this is the best way to get the medication through the stomach and into the intestines where it needs to be. Bruce doesn't think so and every time I place the little dissolving chunks on his tongue, I go through the CPR steps in my head. I think I get a new gray hair each time! He's been on the suspended version from the pharmacy for a month or so now and it's not working. Babies typically grow out of reflux and it's something we will have to watch, not that we weren't already. When I found the info online on Sandifer's Syndrome the night before the GI appointment, the article mentioned how rare it was for babies to have this. Less than 1% of reflux babies ever show the symptoms but when the article said 'rare', I knew he had it. This kid does rare to a perfection!
Bruce is over 14 lbs and topped 25 inches a couple days ago! Long and skinny, not surprised. His daddy used to be that way....sorry, love, just checking to see if you're reading or not :) Each day I go to get him out of his crib and I see a change in his face. It's amazing how quickly they grow! We have reached the stage of blowouts, though. It's like a light bulb has gone off in his cute little baby head that says, if I lay like this and I grunt like this, I will make it go up my back like this! And to see momma's face is fun! Yay! And I'll wait til when daddy's not home! And I'll do it only when I'm sitting on momma's lap!
Ok, it probably doesn't play out like that in his head but it sure seems like it!
September was here...I think?! It's still been great to be home! Bruce is really growing and his body is healing from this oh-so-crazy summer. Yesterday, he had a MRI and it showed the brain abscess is regressing (great news!) but there is some concerning swelling the neurosurgeon is going to keep an eye on (eh) but the vp shunt is working great! Infectious Diseases has ordered another month of his super strong antibiotics (eh) so the feeding tube is staying put til those are finished but he has been eating fairly well lately! We started some cereal last night and that has been a hit so far. GI gave the go-ahead to start solids but he's to remain on the Nutramigen AA and off breastmilk.
Bruce's seizures started acting up again a couple weeks ago and the neurologist placed him on some stronger anti-seizure meds. When the kid started tapping his left leg and left arm and keeping time, I knew something was up because his father and I have no rhythmm, whatsoever. None. Nadda. But, the meds have helped and we haven't seen any new activity since, except for what we thought were seizures the other night. All of the medications Bruce is on are wicked strong and keep his belly upset, hence the feeding tube. Which really is the handiest tool for giving meds when he's sleeping......no fights. Yet, a catch-22.
But these latest 'seizures' are in fact, not. They are episodes consistent with Sandifer's Syndrome which is when the baby is rolling his head and moving his arms repeatedly in attempt to open his esophagus to let the acid out. I called back down the hospital earlier this week and the neurologist said this was reflux activity and to call GI. Luckily, we had an appointment already after the MRI. I was describing the episodes to the GI doc and he started to go off on an intelligent spill about an Englishman named Sandifer and I kinda burst his bubble when I said I found it on the internet the night before....Momma's head got a little inflated for playing doctor but quickly deflated when he said I had to give Bruce a pill twice a day. Yep, to a 4 month old. Chuckle, chuckle, funny man. But, I will say your joke about Bruce's 'Howitzer' antibiotics compared to normal 'pea-shooter' antibiotics was funny...
There are other ways of giving Prevacid but this is the best way to get the medication through the stomach and into the intestines where it needs to be. Bruce doesn't think so and every time I place the little dissolving chunks on his tongue, I go through the CPR steps in my head. I think I get a new gray hair each time! He's been on the suspended version from the pharmacy for a month or so now and it's not working. Babies typically grow out of reflux and it's something we will have to watch, not that we weren't already. When I found the info online on Sandifer's Syndrome the night before the GI appointment, the article mentioned how rare it was for babies to have this. Less than 1% of reflux babies ever show the symptoms but when the article said 'rare', I knew he had it. This kid does rare to a perfection!
Bruce is over 14 lbs and topped 25 inches a couple days ago! Long and skinny, not surprised. His daddy used to be that way....sorry, love, just checking to see if you're reading or not :) Each day I go to get him out of his crib and I see a change in his face. It's amazing how quickly they grow! We have reached the stage of blowouts, though. It's like a light bulb has gone off in his cute little baby head that says, if I lay like this and I grunt like this, I will make it go up my back like this! And to see momma's face is fun! Yay! And I'll wait til when daddy's not home! And I'll do it only when I'm sitting on momma's lap!
Ok, it probably doesn't play out like that in his head but it sure seems like it!
We've been able to get out and enjoy the nice weather some lately. We started what hopefully becomes a new fall tradition of apple picking with great grandma and great grandpa!
I think here is grandpa telling Bruce momma better be careful putting the full bag of apples on the stroller like that....
Because not 10 minutes later I nearly toppled the whole rig, baby and all...
Bruce telling daddy the tale of momma's scary stroller driving later that day...
Still acceptable now, but if this is the case in 30 years, we have to talk, son.
Letting it all hang out during an infusion...notice 'I don't care if you take this picture now but it better not be on the internet later' look on his face....
Learning to smack his tongue like silly momma...you're getting there! Kind of...
Bruce's first visit to the neighbor's dairy when they were chopping silage that day! (More ranch pictures to come in the following posts for those of you who care....we don't just talk baby poop and breastmilk here!
A relaxing day at home with mom sticking her camera in my face...again...
And finally, 'ok, I will smile once more if you would kindly remove yourself so I can watch Monday Night Football....'
And there you have it so far, folks! Later today (because it is after 2 am and OH. SO. PEACEFUL), Bruce and I are heading to the Amish shops at Jamesport, MO with some of the lovely ladies in my family for our annual kickoff to the fall season! Daddy has requested that we bring back some baked goodies and a box of gate handles from the farm store down the road...he seriously knows where to find the good deals when it comes to farm supplies...I know this because I have driven all across the countryside for him...and I love it! Still checking to see if you're reading :)
Happy Fall, y'all!!
GOD BLESS!!
Tuesday, September 6, 2011
And now a word from Waylon Jennings...
"So wherever we're going, Lord, it's good to be at home..."
Home. Last Thursday Bruce was discharged at 12:05 pm. Within 10 minutes of signing on the line, we were loaded down like the Clampetts, complete with baby and six weeks of living supplies from our stay at the Ronald McDonald house, and headin' north with the hammer down, breaker-breaker rubber ducky, 10-4 good buddy, we got us a convoy, mashin' down through Wolf Creek Pass -- all of it. We made a quick stop at my mamacitas long enough for her to pack us moreso with her home cooking and tell her grandson to get his butt home, and to stay there. 20 minutes later, I made the realization that we completely bypassed the CMH inpatient pharmacy and forgot to pick up Bruce's EIGHT prescriptions.
And so, at the Holt/Lathrop exit on 1-35, we made a u-turn and headed back for the drugs.
In honor of his round the clock drug regiment, I would now like to inflict upon you the song that has been stuck in my head since Thursday night...(lyrics have been changed):: One, two, three o'clock, four o'clock, MEDS! Five, six, seven o'clock, eight o'clock, MEDS! Nine, ten, eleven o'clock, twelve o'clock, MEDS! We're gonna medicate Bruce around the clock tonight! You are welcome!! :)
Sleep isn't in my repertoire anymore and it's fine by me! Sooner (before later) it will catch up and I probably ought to be lying peacefully in my bed now but sitting here and watching Bruce make the funniest facial expressions while he dreams and listening to his daddy saw logs with a team of professional wood grinding beavers, is my slumber. Home. I can't say it enough!
So far in the last few days I have spent some amazing time with friends and family, eaten the best t-bone ever smoked and mamacita's best-ever banana bread, napped a ridiculous amount of times with my baby next to me, re-inserted the feeding tube in his nose because it wasn't in the right place, added 'maternal apothacarist' to my resume, cleaned and organized for hours without ever making a dent in the mess and mastered the moby wrap while wearing a robe. Yes, it can be done.
This weekend has been the best of my life, ever. I fall more and more in love with Bruce everyday and I enjoy learning and seeing who he is becoming, outside of a hospital crib. He's been doing fantastic. The feedings are going better but we do still have the ng tube in and will for a while and most of the medications should end in a few weeks.
We leave for KC in the morning for his next enzyme replacement therapy and a slew of appointments on Wednesday: Cardiology, Neurosurgery follow-up, Infectious Diseases and the Special Care Clinic. I feel like an anxious ex-con getting ready for a parole hearing, afraid of getting locked up again. Which is probably just the exhaustion setting in because I know Bruce is going to do JUST FINE with his appointments and we'll be home before I know it, back to my robe and snuggling with my son while he sleeps and I watch all the trashy Lifetime and TLC shows...He really is making progress and growing a belly like his daddy's! (But it's a cute belly, John! :)
It's great to see everything so green in northern Missouri! You can laugh all you want that this town has more digits in it's zip code than actual residents but I wouldn't trade it for anywhere. Someday, the beach but that's years down the road...we've got a family and cows to raise first!!
GOD BLESS!!!!
Home. Last Thursday Bruce was discharged at 12:05 pm. Within 10 minutes of signing on the line, we were loaded down like the Clampetts, complete with baby and six weeks of living supplies from our stay at the Ronald McDonald house, and headin' north with the hammer down, breaker-breaker rubber ducky, 10-4 good buddy, we got us a convoy, mashin' down through Wolf Creek Pass -- all of it. We made a quick stop at my mamacitas long enough for her to pack us moreso with her home cooking and tell her grandson to get his butt home, and to stay there. 20 minutes later, I made the realization that we completely bypassed the CMH inpatient pharmacy and forgot to pick up Bruce's EIGHT prescriptions.
And so, at the Holt/Lathrop exit on 1-35, we made a u-turn and headed back for the drugs.
In honor of his round the clock drug regiment, I would now like to inflict upon you the song that has been stuck in my head since Thursday night...(lyrics have been changed):: One, two, three o'clock, four o'clock, MEDS! Five, six, seven o'clock, eight o'clock, MEDS! Nine, ten, eleven o'clock, twelve o'clock, MEDS! We're gonna medicate Bruce around the clock tonight! You are welcome!! :)
Sleep isn't in my repertoire anymore and it's fine by me! Sooner (before later) it will catch up and I probably ought to be lying peacefully in my bed now but sitting here and watching Bruce make the funniest facial expressions while he dreams and listening to his daddy saw logs with a team of professional wood grinding beavers, is my slumber. Home. I can't say it enough!
So far in the last few days I have spent some amazing time with friends and family, eaten the best t-bone ever smoked and mamacita's best-ever banana bread, napped a ridiculous amount of times with my baby next to me, re-inserted the feeding tube in his nose because it wasn't in the right place, added 'maternal apothacarist' to my resume, cleaned and organized for hours without ever making a dent in the mess and mastered the moby wrap while wearing a robe. Yes, it can be done.
This weekend has been the best of my life, ever. I fall more and more in love with Bruce everyday and I enjoy learning and seeing who he is becoming, outside of a hospital crib. He's been doing fantastic. The feedings are going better but we do still have the ng tube in and will for a while and most of the medications should end in a few weeks.
We leave for KC in the morning for his next enzyme replacement therapy and a slew of appointments on Wednesday: Cardiology, Neurosurgery follow-up, Infectious Diseases and the Special Care Clinic. I feel like an anxious ex-con getting ready for a parole hearing, afraid of getting locked up again. Which is probably just the exhaustion setting in because I know Bruce is going to do JUST FINE with his appointments and we'll be home before I know it, back to my robe and snuggling with my son while he sleeps and I watch all the trashy Lifetime and TLC shows...He really is making progress and growing a belly like his daddy's! (But it's a cute belly, John! :)
It's great to see everything so green in northern Missouri! You can laugh all you want that this town has more digits in it's zip code than actual residents but I wouldn't trade it for anywhere. Someday, the beach but that's years down the road...we've got a family and cows to raise first!!
GOD BLESS!!!!
Wednesday, August 31, 2011
Prepared for battle...
The next time I write this blog, I plan to be naked, sitting in a bean bag chair eating cheetos! Ok, not really but we will be home and I more than likely will be in my robe...because who needs clothes when you're home?!
WE'RE GOING HOME. HOME!!! Like, tomorrow!
Six weeks, four days. Whew. I woke up this morning tired but prepared for battle. Bruce hasn't been eating well this past week and a half and it is really the only thing holding him up for discharge. It's not easy to make a three month old drink a bottle he would rather pitch it out the fifth story window and it's not like I can threaten him...'if you don't drink this bottle, no sweet-ease for you, son!' (Sweet-ease :: sugar water for babies you can dip their pacifiers in...aka, 'baby crack'. And as John found out the hard way, it cannot be recreated with Splenda). Besides, those threats wouldn't work in a children's hospital anyways....as soon as moms leave, the nurses let them have whatever they want! For Bruce, it's being held and hanging out at the nurses' station. But back to the battle.
There are several theories why he's not eating. Momma's is that his belly gets pumped full of a variety of meds everyday and quite honestly, his formula is gross. I can't blame the kid and he's been through a lot the last several weeks. Last week they placed a ng tube for his feedings. Bruce gets first chance to take what he can manage out of the bottle before his belly gets upset and he gets cranky, then the rest goes down the hatch in a small tube in his nose. Bruce hates them and that's why there's more tape on his face to hold it in place than one of John's attempts to wrap a Christmas present.
Come to find out, it is very common to send kids home with ng tubes who do have issues eating and getting back on their feet. But our docs weren't having it. We were staying put. This time yesterday, I thought our current attending was a puffed up peacock with too many ruffles in his feathers so I kept my mouth shut and waited patiently for John to leave for the ranch for a couple days so I could do some investigating. With a little help on the inside from one of the patient advocates who was assigned to Bruce's case in the very beginning, back in the nicu days, and I have had the wonderful pleasure of many a deep conversations on life and it's craziness, communication was restored and the docs were finally on the same page as us: We really don't want to live here forever. And compared to taking a baby home with a picc line, a feeding tube is small fish.
But I say that now....just wait til he pulls it out himself and we have to place it back in and he's screaming baby obscenities at me!
So, my battle preparation this morning, complete with warpaint (really just my makeup because I could use all the help I can get), was for nothing now that doctors know we feel confident we can manage with the equipment. And that we are capable of doing it as parents. And if they knew that we are capable of doing it because we both grew up on dairy farms where it was not uncommon to tube feed calves, well then they'd probably take our baby away for comparing him to a calf.
And that's that! We get to be home this weekend for the holiday, the unofficial celebration of the end of summer that Bruce has spent in a hospital! I'm going to use this to signify the end of his crazy fluke illnesses and a fresh start for our future...we will always be familiar with procedures and doctors and hospitals for his lifelong diagnosis but it's nothing our family can't handle....from home!!!
So now for the real battle.....getting Bruce adjusted to no cute night nurses to cuddle with..............
WE'RE GOING HOME. HOME!!! Like, tomorrow!
Six weeks, four days. Whew. I woke up this morning tired but prepared for battle. Bruce hasn't been eating well this past week and a half and it is really the only thing holding him up for discharge. It's not easy to make a three month old drink a bottle he would rather pitch it out the fifth story window and it's not like I can threaten him...'if you don't drink this bottle, no sweet-ease for you, son!' (Sweet-ease :: sugar water for babies you can dip their pacifiers in...aka, 'baby crack'. And as John found out the hard way, it cannot be recreated with Splenda). Besides, those threats wouldn't work in a children's hospital anyways....as soon as moms leave, the nurses let them have whatever they want! For Bruce, it's being held and hanging out at the nurses' station. But back to the battle.
There are several theories why he's not eating. Momma's is that his belly gets pumped full of a variety of meds everyday and quite honestly, his formula is gross. I can't blame the kid and he's been through a lot the last several weeks. Last week they placed a ng tube for his feedings. Bruce gets first chance to take what he can manage out of the bottle before his belly gets upset and he gets cranky, then the rest goes down the hatch in a small tube in his nose. Bruce hates them and that's why there's more tape on his face to hold it in place than one of John's attempts to wrap a Christmas present.
Come to find out, it is very common to send kids home with ng tubes who do have issues eating and getting back on their feet. But our docs weren't having it. We were staying put. This time yesterday, I thought our current attending was a puffed up peacock with too many ruffles in his feathers so I kept my mouth shut and waited patiently for John to leave for the ranch for a couple days so I could do some investigating. With a little help on the inside from one of the patient advocates who was assigned to Bruce's case in the very beginning, back in the nicu days, and I have had the wonderful pleasure of many a deep conversations on life and it's craziness, communication was restored and the docs were finally on the same page as us: We really don't want to live here forever. And compared to taking a baby home with a picc line, a feeding tube is small fish.
But I say that now....just wait til he pulls it out himself and we have to place it back in and he's screaming baby obscenities at me!
So, my battle preparation this morning, complete with warpaint (really just my makeup because I could use all the help I can get), was for nothing now that doctors know we feel confident we can manage with the equipment. And that we are capable of doing it as parents. And if they knew that we are capable of doing it because we both grew up on dairy farms where it was not uncommon to tube feed calves, well then they'd probably take our baby away for comparing him to a calf.
And that's that! We get to be home this weekend for the holiday, the unofficial celebration of the end of summer that Bruce has spent in a hospital! I'm going to use this to signify the end of his crazy fluke illnesses and a fresh start for our future...we will always be familiar with procedures and doctors and hospitals for his lifelong diagnosis but it's nothing our family can't handle....from home!!!
So now for the real battle.....getting Bruce adjusted to no cute night nurses to cuddle with..............
Wednesday, August 24, 2011
a BIG difference!
WOW! What a week! So from the last post it's been a whirlwind but I think things may finally be settling down for us here at the hospital...today marks 5 weeks 3 days that Bruce has been admitted for the meningitis and the complications that came with it. Which is exactly how long he was in the NICU! The kid just turned 3 months old on Saturday and he's already spent 11 weeks so far of his life as a patient of Children'$ Mercy...
Here are things he has no clue about in the big wide world: fresh air, clothes, his Gus dog, days without doctors poking and prodding, cows, and quiet nights without nurses holding him. The list goes on. It's going to be a reality check for him when he hit northern Harrison county and it's quiet...John's going to leave for the ranch and Bruce will take one look at me and decide this party doesn't have enough people and I should call some friends over. He prefers the blondes but has settled for brunettes.
The night before Bruce was due to get the brain shunt, he spiked a mysterious fever so it was postponed. He was pretty miserable from the pressure in his head and something had to be done so his neurosurgeon took out 26 ml from his left ventricle and rescheduled the shunt for this week...the next day, the pressure increased again and more fluid had to come out. This was Saturday and the on-call neuro came in....he walked through our door in his street clothes and looked like he just came from his kids soccer matches. Momma didn't panic too much. About 15 minutes later, our regular neuro called in and asked to speak with us. He said he was booking the operating room for the very next morning for Bruce's shunt because it couldn't wait any longer. As miserable as the little man was, John and I were glad to be getting this surgery so he would just feel better. I was missing my baby.
Sunday morning came and the surgery went great. It was eerily quiet in the recovery room while we waited for the show to get on the road but nice for all the extra attention Bruce was getting from the nurses and doctors. The shunt was placed under the skin on the left topside of his head and the catheter was routed on the inside behind his ear down to his belly. Kinda crazy looking but it has done wonders for his mood and he's like a brand new baby without the pressure. It's something we'll always have to keep an eye on and be cautious of when he's playing and growing but it will give him some wicked awesome stories for the playground one day.
Recovery has been great and no signs of complications from the surgery. His feedings haven't been great so that is a concern and just about the only thing hindering our 'escaping KC' plans...Physical therapy has suggested acid reflux so we're going to try antacids and hope that's all it is. Other than having some spells when he's fussy and not eating, Bruce is smiling and laughing and melting momma's (and all the nurses and female doctors) heart. His eye movements are much better and he's still kicking like a ninja. His neck is getting stronger but it'll be a while before he's sitting on his own but it's ok; we love the HAPPY BABY!!!
P.S. I have a TON of pictures to share but I can't get them off my camera onto this computer so I'll put a slideshow one day of all the hospital craziness and his way too cuteness! (Thanks Millie for letting me steal these!)
Here are things he has no clue about in the big wide world: fresh air, clothes, his Gus dog, days without doctors poking and prodding, cows, and quiet nights without nurses holding him. The list goes on. It's going to be a reality check for him when he hit northern Harrison county and it's quiet...John's going to leave for the ranch and Bruce will take one look at me and decide this party doesn't have enough people and I should call some friends over. He prefers the blondes but has settled for brunettes.
The night before Bruce was due to get the brain shunt, he spiked a mysterious fever so it was postponed. He was pretty miserable from the pressure in his head and something had to be done so his neurosurgeon took out 26 ml from his left ventricle and rescheduled the shunt for this week...the next day, the pressure increased again and more fluid had to come out. This was Saturday and the on-call neuro came in....he walked through our door in his street clothes and looked like he just came from his kids soccer matches. Momma didn't panic too much. About 15 minutes later, our regular neuro called in and asked to speak with us. He said he was booking the operating room for the very next morning for Bruce's shunt because it couldn't wait any longer. As miserable as the little man was, John and I were glad to be getting this surgery so he would just feel better. I was missing my baby.
Sunday morning came and the surgery went great. It was eerily quiet in the recovery room while we waited for the show to get on the road but nice for all the extra attention Bruce was getting from the nurses and doctors. The shunt was placed under the skin on the left topside of his head and the catheter was routed on the inside behind his ear down to his belly. Kinda crazy looking but it has done wonders for his mood and he's like a brand new baby without the pressure. It's something we'll always have to keep an eye on and be cautious of when he's playing and growing but it will give him some wicked awesome stories for the playground one day.
Recovery has been great and no signs of complications from the surgery. His feedings haven't been great so that is a concern and just about the only thing hindering our 'escaping KC' plans...Physical therapy has suggested acid reflux so we're going to try antacids and hope that's all it is. Other than having some spells when he's fussy and not eating, Bruce is smiling and laughing and melting momma's (and all the nurses and female doctors) heart. His eye movements are much better and he's still kicking like a ninja. His neck is getting stronger but it'll be a while before he's sitting on his own but it's ok; we love the HAPPY BABY!!!
P.S. I have a TON of pictures to share but I can't get them off my camera onto this computer so I'll put a slideshow one day of all the hospital craziness and his way too cuteness! (Thanks Millie for letting me steal these!)
Thursday, August 18, 2011
Quick update...
This quick update turned into a longer one...it happens when there is a lot going on with Bruce! I may have temporarily lost my wittiness and my stress level within the hospital is at an all-time peak. I have my fair share of rope burns from hanging on to the end of my rope but the good news is that I'm still hanging on...So have no fear, you will not see me belly flopping off the construction crane next to CMH on the 10 o'clock news.
Ok, so the abscess from the bacterial infection in his brain is regressing. Great news! Bad news? His cerebrospinal fluid is increasing in his brain ventricles because some residual sediment from the infection that won't allow the fluid to reabsorb, as it should. Did you know that a baby can produce up to 700 ml of cerebrospinal fluid in one day? Our bodies make it and reabsorb it constantly but Bruce's body is having fits. No big surprise there. Pressure is building in his head and causing him to have a serious headache; yesterday, the docs did a lumbar puncture to help relieve some of that pressure. They took out 12 ml from his lower spinal column but so far today, little man is still pretty sore and fussy.
Tomorrow, neurosurgery is going to place a reservoir in his brain to be able to aspirate some of the fluid as needed when he gets too much in his system. Eventually, Bruce will "more than 98% sure" (words from the docs themselves) need a brain shunt to help him long term absorb the fluid that isn't absorbed. One major concern with that is infection and Bruce has had more than he needs of that so everyone is extra cautious as when to do the shunt placement. Infectious Diseases has given the go ahead but each neurosurgeon is different and ours would like to wait longer til he feels Bruce is ready...I'm on board with him. So, we do the Ommaya Reservoir in the meantime. Which is not a vacation spot in South Africa, aunt Kacie...
Bruce had another EEG this afternoon which he and momma slept through. Those rooms are too dark and too quiet, which again proves Musgroves can sleep anywhere...The reason for the EEG is that the docs suspect a little more than usual seizure activity going on in his head, which is more than likely from the increased pressure. They've already increased his medication but this will give insight as to what's going on in there for sure.
On the Pompe side, Bruce got his Port-a-cath on Monday and did just fine during the procedure. He is probably one of the littlest guys to ever to receive this appliance...we haven't heard the officials say that he is but there are hospital rumours that he just may be. The port is titanium and is just under his skin on his right chest and is what the enzyme replacement treatments will be administered through every other week. As he grows, Bruce will need different ports but they should last a couple years...hopefully. So as his growth spurts come, he'll get longer jeans and new ports!
We're hanging in there. I could mope and groan and complain but truly, it could be worse. I have to find the humour in all of it and thanks to my sister, I now also think of 'Ommaya Reservoir' as some distant, turbulent war-torn province that is always on CNN news. Bruce has gone through more than a lot of 80 year olds sitting in a nursing home and the kid complains far less than any of them. I'm proud of our little boy but I can't wait til all of this is a (MORE THAN A FEW) page in the baby book!
***Update to the update.....literally within the minute I posted this blog, our neurosurgeon came into the room to discuss tomorrow's plan. Bruce IS getting his shunt at 7:30 am and NOT the reservoir. Lots of risks to consider but he feels the benefits will be better for our little guy...and so once again, we signed another surgery consent form....
Ok, so the abscess from the bacterial infection in his brain is regressing. Great news! Bad news? His cerebrospinal fluid is increasing in his brain ventricles because some residual sediment from the infection that won't allow the fluid to reabsorb, as it should. Did you know that a baby can produce up to 700 ml of cerebrospinal fluid in one day? Our bodies make it and reabsorb it constantly but Bruce's body is having fits. No big surprise there. Pressure is building in his head and causing him to have a serious headache; yesterday, the docs did a lumbar puncture to help relieve some of that pressure. They took out 12 ml from his lower spinal column but so far today, little man is still pretty sore and fussy.
Tomorrow, neurosurgery is going to place a reservoir in his brain to be able to aspirate some of the fluid as needed when he gets too much in his system. Eventually, Bruce will "more than 98% sure" (words from the docs themselves) need a brain shunt to help him long term absorb the fluid that isn't absorbed. One major concern with that is infection and Bruce has had more than he needs of that so everyone is extra cautious as when to do the shunt placement. Infectious Diseases has given the go ahead but each neurosurgeon is different and ours would like to wait longer til he feels Bruce is ready...I'm on board with him. So, we do the Ommaya Reservoir in the meantime. Which is not a vacation spot in South Africa, aunt Kacie...
Bruce had another EEG this afternoon which he and momma slept through. Those rooms are too dark and too quiet, which again proves Musgroves can sleep anywhere...The reason for the EEG is that the docs suspect a little more than usual seizure activity going on in his head, which is more than likely from the increased pressure. They've already increased his medication but this will give insight as to what's going on in there for sure.
On the Pompe side, Bruce got his Port-a-cath on Monday and did just fine during the procedure. He is probably one of the littlest guys to ever to receive this appliance...we haven't heard the officials say that he is but there are hospital rumours that he just may be. The port is titanium and is just under his skin on his right chest and is what the enzyme replacement treatments will be administered through every other week. As he grows, Bruce will need different ports but they should last a couple years...hopefully. So as his growth spurts come, he'll get longer jeans and new ports!
We're hanging in there. I could mope and groan and complain but truly, it could be worse. I have to find the humour in all of it and thanks to my sister, I now also think of 'Ommaya Reservoir' as some distant, turbulent war-torn province that is always on CNN news. Bruce has gone through more than a lot of 80 year olds sitting in a nursing home and the kid complains far less than any of them. I'm proud of our little boy but I can't wait til all of this is a (MORE THAN A FEW) page in the baby book!
***Update to the update.....literally within the minute I posted this blog, our neurosurgeon came into the room to discuss tomorrow's plan. Bruce IS getting his shunt at 7:30 am and NOT the reservoir. Lots of risks to consider but he feels the benefits will be better for our little guy...and so once again, we signed another surgery consent form....
Thursday, August 11, 2011
A Bob Marley and Diet Coke kind of day...
Two of my most memorable milestones from my pregnancy with Bruce: when the baby book said he could hear from inside the womb and when his testicles dropped...I was a proud momma. Of course, I had to celebrate the first with a couple of my favorite sounds in the world: Waylon Jennings and a Dodge diesel engine. To do so, I took the old Dodge work truck with my Waylon Jennings burnt cd permanently stuck in the cd player on a back road cruise to the home office one afternoon last fall. Later that night, I played ocean waves against my belly from my sound machine. The second milestone wasn't so much a celebrated event other than I told the whole world my boy had balls now...
I love all kinds of sounds but my new favorite since little man has been born is the 'Ah, dammit!' noise he makes when he can't get all the sneezes out. Because he's been sick the last several weeks, he is a little behind on developments...he's not quite able to hold his head on his own and rolling is pretty limited to side-to-back although he kicks like a ninja! He has found his ears and does move his hands to mouth but more importantly to momma's heart than all that, he's smiling like a champ and starting the cooing sounds! My eyes still tear up when he looks at me and gives me that toothless grin! This last week has been amazing to see the changes in him since it seems like the brain pressure is down from the abscess and the antibiotics are taking effect. Tomorrow marks 12 weeks of age and for all the boy has been through, I don't think he'll have much trouble hitting more milestones in the future!
Yesterday was a Bob Marley and diet coke kind of day...doctors were in and out, he had a hearing screen he refused to sleep for, an outpatient pulmonology appointment on the other side of the hospital we had to hike to and his NG (feeding) tube was removed. ((I did manage to score a pan of the Pioneer Woman's chocolate chip cookie cinnamon rolls from Aunt Kerrie and some great family visiting including some sisterly bonding I don't get enough of these days!)) I cracked a case of diet coke pretty early in the day and yesterday afternoon, after the medical masses left the room, I turned on some Bob Marley and little man snoozed on my lap. Momma loved that bonding time. Music is HUGE in my life and I love all kinds...I'm hoping Bruce will too! Today's kind of a wild card day and I'm playing Foster the People...see, I'm a cool and trendy mom! HAHA Yes! I did just say that.......
Infectious Disease holds the reins on the going home wagon. Bruce was yet again hot topic of another conference yesterday to discuss the best antibiotic treatments for him since he's such an odd case. From the meeting of the minds, it was decided to up vancomycin iv dose and an oral will begin today. All of his functions are looking great so far so they feel they are on the right path. We're currently awaiting MRI results from this morning to check the regression of the abscess, if any. Bruce may not be a prodigy pianist or a chess club champ (yet) but he has had five MRIs and has never been sedated. I wonder if that comes on a bumper sticker?
Pompe wise, the enzyme replacement therapy went great this week and the Genetics team is truly impressed with how he is responding. They can only recall a few cases of infantile Pompe in the last decade at CMH and Bruce has far exceeded any of their expectations. We're gonna keep on, keeping on with making progress!
John has been whipping out hay bales like no one's business back at the ranch thanks to help from neighbors and my awesome cousin, Dalton. I'm hoping if we build Dalton a house and find him a non-Amish lady friend, he'll make the move to the north and work full time. Or not, but it's a nice thought! John is heading back tonight and we're planning for a nice and relaxing weekend...I'm sure it'll last all of three minutes!
I love all kinds of sounds but my new favorite since little man has been born is the 'Ah, dammit!' noise he makes when he can't get all the sneezes out. Because he's been sick the last several weeks, he is a little behind on developments...he's not quite able to hold his head on his own and rolling is pretty limited to side-to-back although he kicks like a ninja! He has found his ears and does move his hands to mouth but more importantly to momma's heart than all that, he's smiling like a champ and starting the cooing sounds! My eyes still tear up when he looks at me and gives me that toothless grin! This last week has been amazing to see the changes in him since it seems like the brain pressure is down from the abscess and the antibiotics are taking effect. Tomorrow marks 12 weeks of age and for all the boy has been through, I don't think he'll have much trouble hitting more milestones in the future!
Yesterday was a Bob Marley and diet coke kind of day...doctors were in and out, he had a hearing screen he refused to sleep for, an outpatient pulmonology appointment on the other side of the hospital we had to hike to and his NG (feeding) tube was removed. ((I did manage to score a pan of the Pioneer Woman's chocolate chip cookie cinnamon rolls from Aunt Kerrie and some great family visiting including some sisterly bonding I don't get enough of these days!)) I cracked a case of diet coke pretty early in the day and yesterday afternoon, after the medical masses left the room, I turned on some Bob Marley and little man snoozed on my lap. Momma loved that bonding time. Music is HUGE in my life and I love all kinds...I'm hoping Bruce will too! Today's kind of a wild card day and I'm playing Foster the People...see, I'm a cool and trendy mom! HAHA Yes! I did just say that.......
Infectious Disease holds the reins on the going home wagon. Bruce was yet again hot topic of another conference yesterday to discuss the best antibiotic treatments for him since he's such an odd case. From the meeting of the minds, it was decided to up vancomycin iv dose and an oral will begin today. All of his functions are looking great so far so they feel they are on the right path. We're currently awaiting MRI results from this morning to check the regression of the abscess, if any. Bruce may not be a prodigy pianist or a chess club champ (yet) but he has had five MRIs and has never been sedated. I wonder if that comes on a bumper sticker?
Pompe wise, the enzyme replacement therapy went great this week and the Genetics team is truly impressed with how he is responding. They can only recall a few cases of infantile Pompe in the last decade at CMH and Bruce has far exceeded any of their expectations. We're gonna keep on, keeping on with making progress!
John has been whipping out hay bales like no one's business back at the ranch thanks to help from neighbors and my awesome cousin, Dalton. I'm hoping if we build Dalton a house and find him a non-Amish lady friend, he'll make the move to the north and work full time. Or not, but it's a nice thought! John is heading back tonight and we're planning for a nice and relaxing weekend...I'm sure it'll last all of three minutes!
Saturday, August 6, 2011
Finally....A Good Note!!
There has been nothing normal about the last two and a half months with Bruce. His health hasn't been the greatest. He's on old folks medication and gets all kinds of tests and labs drawn each week. John and I know half the medical staff here at CMH and have regular conversations about Bruce's diagnoses and what's next in the plan to get him better.
And if you've only read one of my blogs in the last two and a half months then you know well enough that this has become the norm for us as parents. Rarely do we get to have conversations with positive news and never have we had a conversation like this before. Until Thursday.
The nurse practioner for our cardiologist called our room Thursday evening:
Her: "Bruce's echocardiogram came back normal."
Me: "Ah. Well, you mean normal for Bruce."
Her: "No. Normal."
Me: "Normal, normal?"
Her: "Yes, normal."
Me: "What does 'normal' mean?"
She went on to explain his heart muscles in the left ventricle weren't thick like were when he was born. By this time I was so shocked I blocked out rest of the conversation and it wasn't until the next day we ran into her and our cardiologist in the hallway did it really sink in his heart was normal. Luckily John was there with me to be witness!
Our geneticist, the doctor who in the beginning was the one who suspected Pompe Disease was the culprit of his heart disease, came to our room the next morning and looked almost as excited as we were as parents for the news. The enzyme treatment has made a tremendous difference in Bruce's health and thanks to her and her team who have fought so hard to get the Pompe diagnosis and the treatment ordered, we have seen our first and most important improvement being his heart. Medicine and prayers are powerful.
Bruce can never go without the enzyme treatment every two weeks and as his momma, I will make damn sure that whether it rains 20 inches or snows 20 feet, John will rowing us in a boat or blading roads with the tractor to get where we need to get. I don't think he will mind one bit! I have had days of doubt and in the beginning, I was a hot mess. John has always been a rock. He's never doubted and always kept me strong if I was even remotely worried too much. He's one proud daddy of his son.
Yesterday Bruce had another procedure to help drain his brain abscess. There wasn't as much gunk which can be a good sign but the witty neuro and his team of blondes are keeping close watch. The part of his brain that is being affected is what determines personality and moods and some motor skills. Yesterday morning, Bruce was full of smiles and was making great eye contact and melting his momma's heart. If any brain damage, I don't see it. Time shall tell but this is a strong kid. He's already whipped hypertrophic cardiomyopathy.
That's the latest and greatest health wise. On a sidenote, not all nurses are created equally and I've been getting into gangster movies thanks to Mob Week on AMC. But don't worry, I'm not getting any ideas.....yet. I also have been watching Shark Week on Discovery and I really want to swimming! I might just be getting a little stir crazy in these walls but I'm not about to stuff needle-toting nimwits down the elevator shaft or jump into a feeding frenzy of tiger sharks off the African coast.
PLEASE keep your prayers and good thoughts coming!! They never go unappreciated! Medicine may be working in Bruce's body but it takes more than just that to keep him getting healthy and his momma from tossing malfunctioning oxygen sensors that beep every five minutes out the 5th story window!
And if you've only read one of my blogs in the last two and a half months then you know well enough that this has become the norm for us as parents. Rarely do we get to have conversations with positive news and never have we had a conversation like this before. Until Thursday.
The nurse practioner for our cardiologist called our room Thursday evening:
Her: "Bruce's echocardiogram came back normal."
Me: "Ah. Well, you mean normal for Bruce."
Her: "No. Normal."
Me: "Normal, normal?"
Her: "Yes, normal."
Me: "What does 'normal' mean?"
She went on to explain his heart muscles in the left ventricle weren't thick like were when he was born. By this time I was so shocked I blocked out rest of the conversation and it wasn't until the next day we ran into her and our cardiologist in the hallway did it really sink in his heart was normal. Luckily John was there with me to be witness!
Our geneticist, the doctor who in the beginning was the one who suspected Pompe Disease was the culprit of his heart disease, came to our room the next morning and looked almost as excited as we were as parents for the news. The enzyme treatment has made a tremendous difference in Bruce's health and thanks to her and her team who have fought so hard to get the Pompe diagnosis and the treatment ordered, we have seen our first and most important improvement being his heart. Medicine and prayers are powerful.
Bruce can never go without the enzyme treatment every two weeks and as his momma, I will make damn sure that whether it rains 20 inches or snows 20 feet, John will rowing us in a boat or blading roads with the tractor to get where we need to get. I don't think he will mind one bit! I have had days of doubt and in the beginning, I was a hot mess. John has always been a rock. He's never doubted and always kept me strong if I was even remotely worried too much. He's one proud daddy of his son.
Yesterday Bruce had another procedure to help drain his brain abscess. There wasn't as much gunk which can be a good sign but the witty neuro and his team of blondes are keeping close watch. The part of his brain that is being affected is what determines personality and moods and some motor skills. Yesterday morning, Bruce was full of smiles and was making great eye contact and melting his momma's heart. If any brain damage, I don't see it. Time shall tell but this is a strong kid. He's already whipped hypertrophic cardiomyopathy.
That's the latest and greatest health wise. On a sidenote, not all nurses are created equally and I've been getting into gangster movies thanks to Mob Week on AMC. But don't worry, I'm not getting any ideas.....yet. I also have been watching Shark Week on Discovery and I really want to swimming! I might just be getting a little stir crazy in these walls but I'm not about to stuff needle-toting nimwits down the elevator shaft or jump into a feeding frenzy of tiger sharks off the African coast.
PLEASE keep your prayers and good thoughts coming!! They never go unappreciated! Medicine may be working in Bruce's body but it takes more than just that to keep him getting healthy and his momma from tossing malfunctioning oxygen sensors that beep every five minutes out the 5th story window!
Tuesday, August 2, 2011
Really. We're still here.
If Children's Mercy had an A-List, John and I would be on it. Let me rephrase that. Bruce would be on it. John and I are just the ones who carry his luggage and change his messiest diapers when the nurses sneak out of the room when they smell that smell.
But really, Bruce has caused quite a commotion among the doctors and nurses in this place and just about every department has heard his name and a brief synopsis of his case. And as Bruce's parents, we spend a fair amount of time in hallways and in the cafeteria and just passing by updating all those who are curiously wondering about the latest this mystery child has produced.
And latest would be the brain abscess. We came in for pneumonia, which led to meningitis, which led to seizures, which led to the brain abscess. It has taken three procedures to drain it, so far -- the most recent first thing this morning, and many tests and cultures to determine what caused it. We're making progress, even though it seems like one step forward and a half mile back. The highly intelligent brainac docs tell us that it's common to have to drain these multiple times and eventually it'll subside. On a side note, our current neurosurgeon has one of the greatest & driest sense of humor I've known...it's been refreshing.
A sample of the abscess was sent to the University of Washington last week to see what was causing it. Today we learned the name of it and I can actually pronounce it. John, however, cannot. He said it right the first time and every time since has been a complete different version...I bet he failed as a child playing the telephone game. Bacillus pseudomycoides. Commonly found in soil, but then again so is everything else. We live on a cattle ranch. I make a living selling agronomy products to dirt farmers. I ate a healthy dose of dirt as a kid and I am willing to bet John did too. Bruce, on the other hand, is having an adverse reaction to what's in soil and he's never even seen it before. Let alone swim in a mud puddle or lick the popsicle he dropped on the ground.
The infectious disease doctors have no idea how he got the bacteria into his system. There are several theories and lots of possibilities but there is no way to tell now. We all just hunch, for lack of better medical term. And it sucks. Another medical statement we hear from the docs often. It could have come from anywhere and is actually a common skin contaminant. I probably have some under my fingernails now. But how he got it is in the past and now we need to focus on zapping it out of his system so his head can heal.
Bacillus pseudomycoides is not known to cause brain abscesses and herein lies where the highly intelligent team of docs are confused...why now. Why this time. Why Bruce. He's been on some hefty antibitiotics and now he will be on some different ones. There really is no antibiotic specific for Bruce's case but the team has confidence in this different antibiotic and hope it will do what needs to be done. Again, Bruce is a medical wonder. At 10 weeks of age.
So, that's the latest. We lost track of how many different rooms we have been in when we hit eleven last week. We have learned that when Bruce is feeling good he loooooooves the night life and the ladies. He has spent many an hour out at the nurses' station "just cuddling" while either John and I are away for the night or we're sleeping because that's what diurnal mammals, or parents who are awake during the day, do. That habit will have to change when we get home or John gets to hire a cute nurse to tend to the baby in the wee hours....which ain't happening, let me tell ya.
Moral has been tested but it hasn't been lost. John and I are doing as great as can be expected, maybe even a little better, and we still have not killed each other yet. My mammary glands no longer hate my guts and I am sad to have seen them go. Maybe one day I will get those implants...I plan to unpack the bags underneath my eyes soon with a little rest and relaxation but I'm not too worried about how frumpy I look as long as John looks at me the way he still does. Oooh la la....
Bruce has proven to be a perplexity to raise and I feel a little robbed of some of the mommy time I'm missing out on when he's so cute and cuddly. Soon, he will be a raging ball of testosterone with the capability to walk and drive and form his own opinions that probably will differ from mine...but nonetheless, he is and always will be my handsome and truly amazing little boy whom I undoubtedly love more than anything in the world.
No matter what he's got going on inside...
But really, Bruce has caused quite a commotion among the doctors and nurses in this place and just about every department has heard his name and a brief synopsis of his case. And as Bruce's parents, we spend a fair amount of time in hallways and in the cafeteria and just passing by updating all those who are curiously wondering about the latest this mystery child has produced.
And latest would be the brain abscess. We came in for pneumonia, which led to meningitis, which led to seizures, which led to the brain abscess. It has taken three procedures to drain it, so far -- the most recent first thing this morning, and many tests and cultures to determine what caused it. We're making progress, even though it seems like one step forward and a half mile back. The highly intelligent brainac docs tell us that it's common to have to drain these multiple times and eventually it'll subside. On a side note, our current neurosurgeon has one of the greatest & driest sense of humor I've known...it's been refreshing.
A sample of the abscess was sent to the University of Washington last week to see what was causing it. Today we learned the name of it and I can actually pronounce it. John, however, cannot. He said it right the first time and every time since has been a complete different version...I bet he failed as a child playing the telephone game. Bacillus pseudomycoides. Commonly found in soil, but then again so is everything else. We live on a cattle ranch. I make a living selling agronomy products to dirt farmers. I ate a healthy dose of dirt as a kid and I am willing to bet John did too. Bruce, on the other hand, is having an adverse reaction to what's in soil and he's never even seen it before. Let alone swim in a mud puddle or lick the popsicle he dropped on the ground.
The infectious disease doctors have no idea how he got the bacteria into his system. There are several theories and lots of possibilities but there is no way to tell now. We all just hunch, for lack of better medical term. And it sucks. Another medical statement we hear from the docs often. It could have come from anywhere and is actually a common skin contaminant. I probably have some under my fingernails now. But how he got it is in the past and now we need to focus on zapping it out of his system so his head can heal.
Bacillus pseudomycoides is not known to cause brain abscesses and herein lies where the highly intelligent team of docs are confused...why now. Why this time. Why Bruce. He's been on some hefty antibitiotics and now he will be on some different ones. There really is no antibiotic specific for Bruce's case but the team has confidence in this different antibiotic and hope it will do what needs to be done. Again, Bruce is a medical wonder. At 10 weeks of age.
So, that's the latest. We lost track of how many different rooms we have been in when we hit eleven last week. We have learned that when Bruce is feeling good he loooooooves the night life and the ladies. He has spent many an hour out at the nurses' station "just cuddling" while either John and I are away for the night or we're sleeping because that's what diurnal mammals, or parents who are awake during the day, do. That habit will have to change when we get home or John gets to hire a cute nurse to tend to the baby in the wee hours....which ain't happening, let me tell ya.
Moral has been tested but it hasn't been lost. John and I are doing as great as can be expected, maybe even a little better, and we still have not killed each other yet. My mammary glands no longer hate my guts and I am sad to have seen them go. Maybe one day I will get those implants...I plan to unpack the bags underneath my eyes soon with a little rest and relaxation but I'm not too worried about how frumpy I look as long as John looks at me the way he still does. Oooh la la....
Bruce has proven to be a perplexity to raise and I feel a little robbed of some of the mommy time I'm missing out on when he's so cute and cuddly. Soon, he will be a raging ball of testosterone with the capability to walk and drive and form his own opinions that probably will differ from mine...but nonetheless, he is and always will be my handsome and truly amazing little boy whom I undoubtedly love more than anything in the world.
No matter what he's got going on inside...
Thursday, July 21, 2011
And.....We're back.
Bruce is an amazing little creature. Today marks two months he's been in this world and every day I'm proud to be his momma. With that said, it's been a long two months. Parenthood is life changing, no doubt, but he's brought with him a whole new meaning to late night feedings and diaper changes. A typical day for me as a parent includes a talk with some sort of extremely highly intelligent doctor with more degrees hanging on their wall than I have wallpaper in my house. It's become the norm for us as parents to discuss the insides of our little boy with health care professionals like we're talking about the newest calf crop this spring. It's just natural. Which is unnatural...
I'm on a very humbling path right now in life. As many days as we've spent in Children's Mercy, one has to be. My world, my life, my very existence has spent more days than not swaddled up in a generic hospital blanket hooked up to monitors keeping record of his every breath. He takes it all in stride because it's what he knows right now. It's mine and John's responsibility to make sure that he knows life outside the joint as what it is: full of family, love and cows...and one very confused basset hound who wants to play with the little creature in the car seat rather than just sniffing him!
Last Friday at home at the first sign of a fever, John and I loaded Bruce up and headed for Cameron to see our primary doc. After a quick look, she sent us southbound to Children's Mercy. He was fussy and irritable for him and I didn't get the quick fix I was looking for. I know it doesn't work that way...We got to the ER and they covered the basics: blood cultures and xrays. Bruce was a trooper even though for not feeling good and they sent us home that night with amoxicillin and a diagnosis of a little bit of pneumonia in his upper lungs. I thought we were done there. Progressively over the weekend, little man got fussier and if he could've talked, I think he would have told me he had a headache equivalent to the hangover to the time I swam in the Chariton River fully dressed and lost my cell phone in the bathroom closet...he was miserable. After two long nights of no sleep and one momma at the brink, we made our way back to the ER Sunday morning. More blood tests and xrays showed the pneumonia was clearing up but the spinal tap indicated he had meningitis. No wonder the kid hurt.
They sent us up to the sixth floor and we were settling into our corner suite with a view, twice the size of our NICU room, when Bruce had his first seizure. Within minutes, the rapid response team was sounded and we were swept away to our new room in the PICU. He's never had seizures and within 15 minutes, he had two. All day long, he had three total. More tests were ordered and John and I got our game faces on for another day of consults. They were fairly certain it was bacterial meningitis but the source of where it came from was and is still sketchy because of the amoxicillin doses he had at home that did its job and killed some of the bacteria. Because of the seizures, an EEG and MRI were done with abnormal results. EEG showed constant seizure activity in his brainwaves and his MRI showed a mysterious spot in his front right lobal of his brain that is more than likely result of a mild stroke which is more than likely from the meningitis. The neuro surgeon really couldn't commit to a diagnosis today so that's where we're at now: 'more than likely'. Another spinal tap will show us how he is responding to the antibiotics (Infectious Diseases had a conference today where Bruce was a main topic -- let's hope all those minds agree he's on the right antibiotics) and we also should have an idea from more scans how the drugs are affecting, if at all, the mysterious brain spot.
None of this is related to the Pompe Disease. He can still receive his infusions as scheduled as long as he is feeling good, which is why we were so concerned in the very first place when he spiked a fever. Fevers are no good-a. Our goal is to make sure he's as healthy as can be and we were lucky as well as on the ball to get him where he needed to be so the docs can do their job!
So now, we wait for antibiotics to run their course and get little man back up to eating and being his handsome, old soul self. Each day is an improvement. We'll have more doctor visits to add to our already busy schedule once we get out of here again, but we'll take it all day by day. Like the overgrown white sasquatch, Winter, from Santa Claus is Coming to Town -- it's one foot in front of the other. My little family, the three of us, are all inhabitants of the island of misfit toys...On a side note, John and my blood test results came back. Bruce has both a deletion and a mutation of the chromosome that determines his Pompe Disease. The deletion came from John and the mutation came from momma...see? We're a family of misfits!
I share all of this info for the whole world to read because if I didn't have a way to get this off my chest, I would explode. Every day folks here ask me how I am holding up and if I'm OK. I truly am OK. Of course, I'm tired. That's to be expected I would reckon. But, writing/blogging/updating the world on Bruce's conditions is my way of dealing with Bruce's conditions. And, of course, my amazing family and village of support keep me up and running too. John and I are as best as we ever have been and I find strength everyday. In God, in Bruce, in this big ol' crazy world.
I'm on a very humbling path right now in life. As many days as we've spent in Children's Mercy, one has to be. My world, my life, my very existence has spent more days than not swaddled up in a generic hospital blanket hooked up to monitors keeping record of his every breath. He takes it all in stride because it's what he knows right now. It's mine and John's responsibility to make sure that he knows life outside the joint as what it is: full of family, love and cows...and one very confused basset hound who wants to play with the little creature in the car seat rather than just sniffing him!
Last Friday at home at the first sign of a fever, John and I loaded Bruce up and headed for Cameron to see our primary doc. After a quick look, she sent us southbound to Children's Mercy. He was fussy and irritable for him and I didn't get the quick fix I was looking for. I know it doesn't work that way...We got to the ER and they covered the basics: blood cultures and xrays. Bruce was a trooper even though for not feeling good and they sent us home that night with amoxicillin and a diagnosis of a little bit of pneumonia in his upper lungs. I thought we were done there. Progressively over the weekend, little man got fussier and if he could've talked, I think he would have told me he had a headache equivalent to the hangover to the time I swam in the Chariton River fully dressed and lost my cell phone in the bathroom closet...he was miserable. After two long nights of no sleep and one momma at the brink, we made our way back to the ER Sunday morning. More blood tests and xrays showed the pneumonia was clearing up but the spinal tap indicated he had meningitis. No wonder the kid hurt.
They sent us up to the sixth floor and we were settling into our corner suite with a view, twice the size of our NICU room, when Bruce had his first seizure. Within minutes, the rapid response team was sounded and we were swept away to our new room in the PICU. He's never had seizures and within 15 minutes, he had two. All day long, he had three total. More tests were ordered and John and I got our game faces on for another day of consults. They were fairly certain it was bacterial meningitis but the source of where it came from was and is still sketchy because of the amoxicillin doses he had at home that did its job and killed some of the bacteria. Because of the seizures, an EEG and MRI were done with abnormal results. EEG showed constant seizure activity in his brainwaves and his MRI showed a mysterious spot in his front right lobal of his brain that is more than likely result of a mild stroke which is more than likely from the meningitis. The neuro surgeon really couldn't commit to a diagnosis today so that's where we're at now: 'more than likely'. Another spinal tap will show us how he is responding to the antibiotics (Infectious Diseases had a conference today where Bruce was a main topic -- let's hope all those minds agree he's on the right antibiotics) and we also should have an idea from more scans how the drugs are affecting, if at all, the mysterious brain spot.
None of this is related to the Pompe Disease. He can still receive his infusions as scheduled as long as he is feeling good, which is why we were so concerned in the very first place when he spiked a fever. Fevers are no good-a. Our goal is to make sure he's as healthy as can be and we were lucky as well as on the ball to get him where he needed to be so the docs can do their job!
So now, we wait for antibiotics to run their course and get little man back up to eating and being his handsome, old soul self. Each day is an improvement. We'll have more doctor visits to add to our already busy schedule once we get out of here again, but we'll take it all day by day. Like the overgrown white sasquatch, Winter, from Santa Claus is Coming to Town -- it's one foot in front of the other. My little family, the three of us, are all inhabitants of the island of misfit toys...On a side note, John and my blood test results came back. Bruce has both a deletion and a mutation of the chromosome that determines his Pompe Disease. The deletion came from John and the mutation came from momma...see? We're a family of misfits!
I share all of this info for the whole world to read because if I didn't have a way to get this off my chest, I would explode. Every day folks here ask me how I am holding up and if I'm OK. I truly am OK. Of course, I'm tired. That's to be expected I would reckon. But, writing/blogging/updating the world on Bruce's conditions is my way of dealing with Bruce's conditions. And, of course, my amazing family and village of support keep me up and running too. John and I are as best as we ever have been and I find strength everyday. In God, in Bruce, in this big ol' crazy world.
We're back on the sixth floor where we were Sunday, briefly. We have a corner penthouse complete with a bed for momma, a recliner for daddy, a bathroom with a shower, a tv, mini fridge and a window view of the chopper pad 20 feet away that brought Bruce here when he was 3 days old...it's like we've come full circle!
Saturday, July 9, 2011
The Great CMH Escape...
For a while there, I didn't think they were going to let us out of the joint and keep our baby for ourselves....but they did! But they forgot to send home one of those nurses who kept watch on him 24/7. And fed him. And changed diapers. And gave meds.
When they first even mentioned the word 'discharge' I sent John a text about it and made him swear to keep it on the down low. I didn't want to jinx it. I had this horrible vision in my mind that we would jump through all the discharge hoops and get all excited and then they would find something else to do to the wee one....and you know what? THEY DID! They day we were all set to leave, they decided last minute to do another blood transfusion. Kind of like one for the road. The very nice and polite doctor smartly kept his distance from me when he told us they wanted Bruce to stay one. more. night. for observation. The man was small enough I could have taken him in one tackle...and he knew it. But, everything worked out just fine and the extra day was nice to have to get everything in order. I was a little overwhelmed, but in a good way. One week ago last Thursday, when the nurse FINALLY walked us to our car and made sure Bruce was strapped in tightly in his seat, we closed the doors and I hollered to John, "PUNCH IT, Margaret!!" Of course, he did not punch it and drove us home in a non-racecar/blue hair/road-rage driver manner while I sat in the backseat with my eyes forward in case a random nurse or doctor came running from the elevators looking to stop us. Bruce slept.
The first few days out of the joint we stayed in Liberty at my mom's house just in case we needed to be close. Within 10 minutes of being there, the doctors called. Twice. Luckily, just for some minor medication changes..whew! It was going to take a search team to track me and my baby down...I can pack a diaper bag well enough to hide out in the woods for as long as it takes to throw off the hounds. The first few days it was fun being at home with the kids to help out...wish I could have packed one of them in my diaper bag to bring to the ranch!
We've had a couple doctor appointments since and with exception of a few minor issues, Bruce has checked out just fine. The cardiologist was impressed with his tone and function given his heart condition and we return in one month. Our next infusion is Monday and we look forward to being outpatients then! Within 24 hours of being back in Hatfield, I purchased a giant dry erase calendar for the wall and it's filled up pretty quickly with upcoming appointments...which is just fine by me! As long at the end of the day he's in his crib in our home, I'll drive daily to Timbukto for doc visits! Which is pretty much the same distance from Hatfield to KC :) The wee one has a great team of doctors watching out for him and we're very lucky to have them on our side.
It's fantastic to be home and getting the house back in order...being gone 6 weeks, you knew there had to be a few issues but the ac is blowing cold air again, the Dish guy comes back next week to finish fixing the satellite and a new refrigerator has been ordered and will be delivered the end of the week...compared to what we've been through lately, un-thawed meat in the freezer dripping down into the wires of the fridge was nothing!
Most importantly, Bruce is doing as great as he can be. Fortunately, he loves really stinky formula and has been eating like a champ...which is beyond great! I can't complain about the middle of the night feedings because I love it when he eats like a horse and he's starting to get those cute little wrist fat rolls! Sadly though, his hairline is starting to fill in. I am really going to miss the old man receding hairdo he has...
John is getting caught up at the ranch and VERY happy to have us back in the neighborhood to cut down on his trips up and down 1-35. Out of the whole deal though, he's a much better city driver and I feel comfortable riding with him downtown KC. For the first time ever. All I need to work on now is getting him to quit talking to the other drivers in their cars...they cannot hear you.
It took John four and a half coolers to get all of my milk out of the fridge...he was a trooper hauling those through the hospital to the car because you know people weren't thinking he had beer in there. Or maybe they were. Glad no one stopped him to look inside!! ( I know, I know...again too much information...)
We'll miss our friends and staff at CMH but it's not like we'll never see them again! We will. Often. Before we were discharged, Bruce sent his buddy next door, Lucas - who has been in much longer than us, a giant cow balloon and one that said, "Milk it for all it's worth." If anyone knows how to milk hospitals, it would be Bruce and Lucas! They were the heart breakers of E-Pod.
We have a long road ahead of us and a lot to figure out on how to adjust to this really different lifestyle, but John and I have great support and through the whole ordeal, we didn't kill each other. Er, he didn't kill me...So we still have each other! John is amazing and I'm very blessed to have him! And, of course, a very handsome little man who is changing and growing daily!
No doubt life will be interesting in the coming months and years and I'll keep you all posted!!! Thanks again for thoughts and prayers and hope life is well with all of you!!
John, Sarah & Bruce
When they first even mentioned the word 'discharge' I sent John a text about it and made him swear to keep it on the down low. I didn't want to jinx it. I had this horrible vision in my mind that we would jump through all the discharge hoops and get all excited and then they would find something else to do to the wee one....and you know what? THEY DID! They day we were all set to leave, they decided last minute to do another blood transfusion. Kind of like one for the road. The very nice and polite doctor smartly kept his distance from me when he told us they wanted Bruce to stay one. more. night. for observation. The man was small enough I could have taken him in one tackle...and he knew it. But, everything worked out just fine and the extra day was nice to have to get everything in order. I was a little overwhelmed, but in a good way. One week ago last Thursday, when the nurse FINALLY walked us to our car and made sure Bruce was strapped in tightly in his seat, we closed the doors and I hollered to John, "PUNCH IT, Margaret!!" Of course, he did not punch it and drove us home in a non-racecar/blue hair/road-rage driver manner while I sat in the backseat with my eyes forward in case a random nurse or doctor came running from the elevators looking to stop us. Bruce slept.
The first few days out of the joint we stayed in Liberty at my mom's house just in case we needed to be close. Within 10 minutes of being there, the doctors called. Twice. Luckily, just for some minor medication changes..whew! It was going to take a search team to track me and my baby down...I can pack a diaper bag well enough to hide out in the woods for as long as it takes to throw off the hounds. The first few days it was fun being at home with the kids to help out...wish I could have packed one of them in my diaper bag to bring to the ranch!
We've had a couple doctor appointments since and with exception of a few minor issues, Bruce has checked out just fine. The cardiologist was impressed with his tone and function given his heart condition and we return in one month. Our next infusion is Monday and we look forward to being outpatients then! Within 24 hours of being back in Hatfield, I purchased a giant dry erase calendar for the wall and it's filled up pretty quickly with upcoming appointments...which is just fine by me! As long at the end of the day he's in his crib in our home, I'll drive daily to Timbukto for doc visits! Which is pretty much the same distance from Hatfield to KC :) The wee one has a great team of doctors watching out for him and we're very lucky to have them on our side.
It's fantastic to be home and getting the house back in order...being gone 6 weeks, you knew there had to be a few issues but the ac is blowing cold air again, the Dish guy comes back next week to finish fixing the satellite and a new refrigerator has been ordered and will be delivered the end of the week...compared to what we've been through lately, un-thawed meat in the freezer dripping down into the wires of the fridge was nothing!
Most importantly, Bruce is doing as great as he can be. Fortunately, he loves really stinky formula and has been eating like a champ...which is beyond great! I can't complain about the middle of the night feedings because I love it when he eats like a horse and he's starting to get those cute little wrist fat rolls! Sadly though, his hairline is starting to fill in. I am really going to miss the old man receding hairdo he has...
John is getting caught up at the ranch and VERY happy to have us back in the neighborhood to cut down on his trips up and down 1-35. Out of the whole deal though, he's a much better city driver and I feel comfortable riding with him downtown KC. For the first time ever. All I need to work on now is getting him to quit talking to the other drivers in their cars...they cannot hear you.
It took John four and a half coolers to get all of my milk out of the fridge...he was a trooper hauling those through the hospital to the car because you know people weren't thinking he had beer in there. Or maybe they were. Glad no one stopped him to look inside!! ( I know, I know...again too much information...)
We'll miss our friends and staff at CMH but it's not like we'll never see them again! We will. Often. Before we were discharged, Bruce sent his buddy next door, Lucas - who has been in much longer than us, a giant cow balloon and one that said, "Milk it for all it's worth." If anyone knows how to milk hospitals, it would be Bruce and Lucas! They were the heart breakers of E-Pod.
We have a long road ahead of us and a lot to figure out on how to adjust to this really different lifestyle, but John and I have great support and through the whole ordeal, we didn't kill each other. Er, he didn't kill me...So we still have each other! John is amazing and I'm very blessed to have him! And, of course, a very handsome little man who is changing and growing daily!
No doubt life will be interesting in the coming months and years and I'll keep you all posted!!! Thanks again for thoughts and prayers and hope life is well with all of you!!
John, Sarah & Bruce
Monday, June 20, 2011
Happy One Month, Bruce!
Today is Bruce's one month birthday and I have no doubt that I will be 'that mom' that celebrates each and every month :) I'm blessed to have any months as a momma so it's probably more for me than him right now...until he gets old enough to appreciate special treats on every 20th!
We're still at Children's Mercy. Bruce had his second enzyme treatment on the 14th and all went well. It took a little longer than usual but the nurses in the NICU are not used to giving such treatments and it was a learning experience for them as well. With the new state newborn screenings starting next year, they may be doing it a lot more often so Bruce was their learning curve! Our next treatment is next week and with a little luck, we'll be traveling in to the outpatient clinic at CMH and not in our room at E48.
Speaking of which, life on the E pod in the NICU is getting a little exciting. For several weeks it was just a bunch of boys but now the cutest little girl with the most gorgeous black hair has moved in across the hallway. It used to be pretty quiet but with the new addition, it seems like all the little boys are screaming and saying hello. But not Bruce. Nope, he's letting the amateurs get out of the way before he goes and introduces himself. He's quite the ladies' man!
John has been traveling a lot up and down 1-35 back home to the ranch when the weather allows. It's tough on him, and us down here too, but no doubt the hay needs baled and cows need checking! Soon we'll break free of this joint and we'll be a lot closer for him to check on us when he wants!
No one at CMH has said anything about discharge. What's holding us up are still the ugly diapers. Last week GI was consulted and they ran several tests, one including radioactive dye injected in Bruce so they could look better at his intestines -- so, Bruce truly had radioactive diapers for 24 hours. So far, all of the tests and cultures have come back negative and the doctors are puzzled why he has bloody stools. He's on a special pre-digested formula that smells worse than any outdated can of hominy and I have no worries in my mind that I will never have to fight him to eat his vegetables. Any kid that can take that formula down, as well as his beta-blockers, can eat anything! We hope to be back on breast milk soon because mom has been spending a lot of time at the milking parlor and hopefully not for a lost cause. TMI? Sorry, it's a habit these days...
Sigh. Bruce has his father's hairline. At first, I had hope of it growing in but I really don't think it's going to any time soon...When he wrinkles his face and furrows his brow, he looks like an old man. I really don't feel like I have a one month old but rather an 80 year old. Bruce is truly an old soul and for what he's been through, he'll be as wise as any nursing home resident soon enough! But much cuter...and smaller diapers.
We hope to be home soon, fingers crossed, and I can't wait to share all of the experiences we'll have back on the ranch!
Thank you again to everyone for your thoughts and prayers and well-wishes!!
John, Sarah & Benjamin Button, er, Bruce.
We're still at Children's Mercy. Bruce had his second enzyme treatment on the 14th and all went well. It took a little longer than usual but the nurses in the NICU are not used to giving such treatments and it was a learning experience for them as well. With the new state newborn screenings starting next year, they may be doing it a lot more often so Bruce was their learning curve! Our next treatment is next week and with a little luck, we'll be traveling in to the outpatient clinic at CMH and not in our room at E48.
Speaking of which, life on the E pod in the NICU is getting a little exciting. For several weeks it was just a bunch of boys but now the cutest little girl with the most gorgeous black hair has moved in across the hallway. It used to be pretty quiet but with the new addition, it seems like all the little boys are screaming and saying hello. But not Bruce. Nope, he's letting the amateurs get out of the way before he goes and introduces himself. He's quite the ladies' man!
John has been traveling a lot up and down 1-35 back home to the ranch when the weather allows. It's tough on him, and us down here too, but no doubt the hay needs baled and cows need checking! Soon we'll break free of this joint and we'll be a lot closer for him to check on us when he wants!
No one at CMH has said anything about discharge. What's holding us up are still the ugly diapers. Last week GI was consulted and they ran several tests, one including radioactive dye injected in Bruce so they could look better at his intestines -- so, Bruce truly had radioactive diapers for 24 hours. So far, all of the tests and cultures have come back negative and the doctors are puzzled why he has bloody stools. He's on a special pre-digested formula that smells worse than any outdated can of hominy and I have no worries in my mind that I will never have to fight him to eat his vegetables. Any kid that can take that formula down, as well as his beta-blockers, can eat anything! We hope to be back on breast milk soon because mom has been spending a lot of time at the milking parlor and hopefully not for a lost cause. TMI? Sorry, it's a habit these days...
Sigh. Bruce has his father's hairline. At first, I had hope of it growing in but I really don't think it's going to any time soon...When he wrinkles his face and furrows his brow, he looks like an old man. I really don't feel like I have a one month old but rather an 80 year old. Bruce is truly an old soul and for what he's been through, he'll be as wise as any nursing home resident soon enough! But much cuter...and smaller diapers.
We hope to be home soon, fingers crossed, and I can't wait to share all of the experiences we'll have back on the ranch!
Thank you again to everyone for your thoughts and prayers and well-wishes!!
John, Sarah & Benjamin Button, er, Bruce.
Saturday, June 11, 2011
End of Week 3...
Yesterday, on the 10th, Bruce turned 3 weeks old! To celebrate the Children's Mercy guest server decided to crash and I somehow managed to wipe everything off my computer...it's my work laptop and fortunately all my files were unorganized enough I really didn't mind. But I did lose some of my red dirt music therapy and that's a little depressing...
We've been at CMH for 20 days and for some reason it seems a lot longer...I feel 62, not 26, and I'm starting to look a little rough around the edges. John and Bruce look as handsome as ever. Jerks. There have been rumors of possible discharge for us this coming week but really it depends on cardiology and what they decide. Bruce's heart rate has a tendency to be on the higher side for his heart condition and the docs really want to send us home with the correct beta blocker dosage. I really don't mind because the 5 minute lesson with the stethoscope on what to listen for didn't set in with me and I need more practice...
On the genetics side, our next enzyme treatment is scheduled for Tuesday the 14th and we're looking forward to that! He responded really well clinically to the last one so that was a relief but we will still have to be observant with each and every one. The treatment is FDA approved but it's still pretty new...especially for a 3 week old. The skin biopsy test that will let us know if we can continue with the treatments or not is still several weeks out but luckily we get to continue in the meantime.
On the weekends (when John isn't here, of course), Bruce enjoys having odd bowel functions that mystify the doctors, scare momma, and smell. Last weekend, some ugly diapers resulted in him being taken off feed completely, a few abdominal x-rays, several consults with surgeons, isolation contact which meant mom had to wear gloves and a gown and felt like she was holding baby E.T., and a team of doctors telling us they really had no idea what was going on. Today, he had copious amounts of yellow spit up, another abdominal x-ray that showed a very gassy little boy who had a very gross diaper and more are on the way...I hate to admit it, but Bruce got his father's hairline and his mother's bowels. Not our best features!
John has been able to make it north a few times the last couple weeks to get some hay baled and wrapped...which is a good thing because he was starting to pace the room like a caged tiger and I wasn't sure who was going to get attacked first...ok, it wasn't that bad but he did need to get out and get some sunshine because his farmer's tan was starting to disappear! Thanks to a lot of neighbors up north and one very talented and mechanically-inclined cousin of mine, the ranch is holding up and doing fine!
Tonight, this momma needs out. My mamacita has graciously come to break me out of the joint a couple times for a Target run and some quality brother/sister time at Crown Center, but tonight I need some Stoney LaRue music to chase away some of the 'hospital/my baby scares me with every move he makes/I'm tired of the cafeteria food' blues...John's heading back from the ranch now and we're heading out and leaving Bruce with round the clock nursing care who just happen to be the best baby-sitters in the KC metro area!
Also, a huge thanks to great grandma and grandma & grandpa from the north country for taking us out the other night to the best BBQ joint in Kansas City! I'd share the name with you but the line was long enough and until we're out of KC, we're going back as much as we can! :)
On a side note, I've been listening to Bruce lay in his crib while typing this up and I'm pretty sure his bowels are feeling much better....ah, nothing like motherhood to let all the juicy details out!
THANKS AGAIN to EVERYONE who has called, emailed, posted, texted, pigeon mailed, commented, snail mailed, telegraphed their words of encouragement and prayers and well wishes!!! You have no idea how WONDERFUL they have been. You really don't understand how much they mean until you find yourself in a position like this and I guarantee if any one of you EVER need a shoulder, words, advice, or just someone to listen, I WILL BE THERE!!!
Sarah
(I have pictures to post but my crashed computer says no....)
We've been at CMH for 20 days and for some reason it seems a lot longer...I feel 62, not 26, and I'm starting to look a little rough around the edges. John and Bruce look as handsome as ever. Jerks. There have been rumors of possible discharge for us this coming week but really it depends on cardiology and what they decide. Bruce's heart rate has a tendency to be on the higher side for his heart condition and the docs really want to send us home with the correct beta blocker dosage. I really don't mind because the 5 minute lesson with the stethoscope on what to listen for didn't set in with me and I need more practice...
On the genetics side, our next enzyme treatment is scheduled for Tuesday the 14th and we're looking forward to that! He responded really well clinically to the last one so that was a relief but we will still have to be observant with each and every one. The treatment is FDA approved but it's still pretty new...especially for a 3 week old. The skin biopsy test that will let us know if we can continue with the treatments or not is still several weeks out but luckily we get to continue in the meantime.
On the weekends (when John isn't here, of course), Bruce enjoys having odd bowel functions that mystify the doctors, scare momma, and smell. Last weekend, some ugly diapers resulted in him being taken off feed completely, a few abdominal x-rays, several consults with surgeons, isolation contact which meant mom had to wear gloves and a gown and felt like she was holding baby E.T., and a team of doctors telling us they really had no idea what was going on. Today, he had copious amounts of yellow spit up, another abdominal x-ray that showed a very gassy little boy who had a very gross diaper and more are on the way...I hate to admit it, but Bruce got his father's hairline and his mother's bowels. Not our best features!
John has been able to make it north a few times the last couple weeks to get some hay baled and wrapped...which is a good thing because he was starting to pace the room like a caged tiger and I wasn't sure who was going to get attacked first...ok, it wasn't that bad but he did need to get out and get some sunshine because his farmer's tan was starting to disappear! Thanks to a lot of neighbors up north and one very talented and mechanically-inclined cousin of mine, the ranch is holding up and doing fine!
Tonight, this momma needs out. My mamacita has graciously come to break me out of the joint a couple times for a Target run and some quality brother/sister time at Crown Center, but tonight I need some Stoney LaRue music to chase away some of the 'hospital/my baby scares me with every move he makes/I'm tired of the cafeteria food' blues...John's heading back from the ranch now and we're heading out and leaving Bruce with round the clock nursing care who just happen to be the best baby-sitters in the KC metro area!
Also, a huge thanks to great grandma and grandma & grandpa from the north country for taking us out the other night to the best BBQ joint in Kansas City! I'd share the name with you but the line was long enough and until we're out of KC, we're going back as much as we can! :)
On a side note, I've been listening to Bruce lay in his crib while typing this up and I'm pretty sure his bowels are feeling much better....ah, nothing like motherhood to let all the juicy details out!
THANKS AGAIN to EVERYONE who has called, emailed, posted, texted, pigeon mailed, commented, snail mailed, telegraphed their words of encouragement and prayers and well wishes!!! You have no idea how WONDERFUL they have been. You really don't understand how much they mean until you find yourself in a position like this and I guarantee if any one of you EVER need a shoulder, words, advice, or just someone to listen, I WILL BE THERE!!!
Sarah
(I have pictures to post but my crashed computer says no....)
Friday, June 3, 2011
Update on Bruce
Thank you so much to everyone for your support and we really appreciate all of your prayers and thoughts!
Yesterday we learned what is going on inside our little man. Last week, the day we were admitted to Children's Mercy, we were told he has hypertrophic cardiomyopathy which is a disease of the heart where there is too much muscle. He can't always pump the blood where it needs to go because the heart muscle itself is so strong, it clamps down and won't release the blood to all organs in the body.
A heart transplant was brought up by the doctors but it wasn't an option until we could find out what caused the heart disease. So, A LOT of tests were sent out, mainly genetic and metabolic tests to look for the culprit. Yesterday results came back positive for a genetic disorder called Pompe Disease. It's really complex and we're still learning a lot ourselves but basically his body can't breakdown glycogen and it stores itself in the muscles and cells of his body. This caused the heart disease and means a heart transplant is not an option; the Pompe will only cause another heart to build up with muscle.
To catch Pompe Disease this early is an absolute blessing. It's very rare and symptoms don't always show up until later in life in those who have it and that can be sometimes too late. If Pompe goes untreated, problems with the heart, lungs, and muscles arise and generally are fatal.
The only treatment is enzyme replacement therapy and he will be doing it every 2 weeks for the rest of his life through a permanent IV. There are more tests to be run to make sure that he will respond to this treatment that he needs and those won't come back for six weeks or so. However, because the medical staff at Children's Mercy is AMAZING, rounds of treatment was ordered 'just in case' the test came back positive and only a few hours after John & I learned the results, a treatment was started.
If the results come back that his body won't respond to enzyme replacement therapy, we will do the best to make his life as comfortable as possible. But, to have started treatment this early in his life just may allow him to function and develop normally for any beautiful, strong-willed little boy, as long as his body is willing.
There is no cure for Pompe; only treatment. And a whole lotta prayers! If the enzyme replacement therapy works, his heart should go back to normal but he will always need check-ups to make sure all the vitals are in place.
We love this little guy no matter how much work he has put us through and a whole teams of geneticists and cardiologists and nurses the last several days and we will do whatever it takes to keep him growing strong!! He is eating well and putting on some weight which is a blessing in itself and he's starting to become more active each day. All positive signs!!
This is a great website www.pompe.com for any questions and I'm constantly checking it out to learn all I can. No matter how scary it all is, we still have a wonderful little man in our lives and I thank God daily for my family!!
www.pompe.com
GOD BLESS!!!
John, Sarah & Bruce
Alooooooha!
I've always wanted to create a blog but never found anything engaging to write about...that has changed in the last 14 days!
The purpose of this blog is to capture and share all the amusing and amazing moments that have come and will come in our new life, together as a family. If it weren't for John, the rock in my universe, I never would have survived the last couple weeks...and if it weren't for our beautiful and handsome son, Bruce Jackson, we never would have the strength and laughs and cries and new found hope we have come across....
Thank you to all my family and friends for coming together and celebrating and loving our new bundle of joy who brings to this planet a beautiful, old soul and for being our support system. I may not say the words all the time but I thank God every day!
Sarah
The purpose of this blog is to capture and share all the amusing and amazing moments that have come and will come in our new life, together as a family. If it weren't for John, the rock in my universe, I never would have survived the last couple weeks...and if it weren't for our beautiful and handsome son, Bruce Jackson, we never would have the strength and laughs and cries and new found hope we have come across....
Thank you to all my family and friends for coming together and celebrating and loving our new bundle of joy who brings to this planet a beautiful, old soul and for being our support system. I may not say the words all the time but I thank God every day!
Sarah
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