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..............
Wednesday, August 31, 2011
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...
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