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!!
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