The reality of what Micah went through in April hits me sometimes like a brick. Today was one of those days. A friend on Facebook posted a link to an article about a boy named James in Albany NY who is in the hospital recovering from septic shock. This little 3yr old boy has had a leg and an arm amputated. His kidneys still aren't working. And he has brain damage. He's been in the hospital for 7 weeks. He has months of inpatient rehab in front of him when he's stable enough to be discharged from the hospital.
When Micah was at Children's last week for his CT scan, the nurse who pre-op'd him was remarking about how amazing it is that Micah looks so great after going through his Toxic Shock experience last month told me of a boy she knows who lost all four limbs to Toxic Shock.
So who am I to complain about Micah's eating regressing about a year? Or that we're still dealing with an issue around his g-tube site? We're blessed to have him HOME and ALIVE.
(On a separate note, I've been wondering if Micah's pesky extra chromosome helped save his life through his Toxic Shock experience. Kids with Down syndrome have a higher survival rate when facing leukemia. Any chance it helped him combat a toxic infection?)
Not to say that life has been a cake walk since he came home. Honestly, I'm tired. I am in desperate need of a major vent. But I find it difficult to vent right now because I feel guilty. There are so many others in more challenging situations than mine. We're all home... together. And I'm not sitting here worrying about my husband's safety in Afghanistan or Iraq. There are many out there who are. And there are many others who have lost loved ones in the military, both recently and long ago. So this weekend, in particular, I'd like to just simply say, "Thank you," to those families.
And I ask that you would please pray for the Deere family in Albany NY.
(If you're wondering about Micah's CT scan results... so am I. There's some sort of thickening on one side, but it doesn't appear to be a major abscess. Micah's GI doc wants him to see an Infectious Disease doc. We'd like to avoid needing to move his g-tube site, which would be a surgery and another war wound on his belly. And given all of the g-tube concerns, I'm postponing the sleep study until July... or August.)
Saturday, May 29, 2010
Saturday, May 22, 2010
Micah medical update
Ugh. Yes, there's more to write. It's exhausting to think about putting it all together in one place, which is why I haven't tried before now.
INFECTION:
Micah was NOT sleeping well the week after he came home. By Friday 5/7, I couldn't take it anymore and took him to the pediatrician. We decided the lack of sleep was likely due to a) a urinary tract infection (UTI) and/or b) withdrawal symptoms from the heavy-duty sedatives he was on while in the hospital for so long. A CBC (complete blood count) revealed that Micah did, indeed, have an infection brewing again. After running blood cultures, she gave Micah a shot of rocephin to treat for a UTI. The next morning his CBC showed a much lower white cell count so the rocephin was doing its job. He got another shot of rocephin then started 8 days of augmentin (in case you're curious, the blood cultures all came back negative a few days later, so it was not a systemic infection he was fighting)
We also changed his MIC-KEY button (Micah's feeding port), per the recommendation from his pediatrician who felt that should have happened in the hospital due to the fact that staph can reside on plastic. Whether it was due to the button change or the antibiotics, Micah's tube site looked great for about a week (it doesn't usually look "clear", but it's never looked super bad, i.e. pussy). His tube site is now red and streaky again (he finished antibiotics on Monday and the tube site started looking questionable on Thursday).
He had another CBC done today and it looked fine. But with the tube site looking red again, the pediatrician consulted with Micah's GI doc about the possibility of an abscess below the skin. If there's an infection down under the skin, it wouldn't ooze or be noticable as a valid port of entry for the staph that almost killed him. But if there's an abscess there, it could be (and likely was) a ticking time bomb.
So... how do we find out if there's something buried there under his skin? A sedated CT scan is the answer from GI. The first opening is Tuesday morning, and after the nurse at the pediatrician's office got that all scheduled for us, I realized that this is the morning of Nathan's last day of school and he has a program that morning that I'd rather not miss. So now we wait until Monday when the scheduling office is open again. Micah is still a "cardiac kid," so I don't know what all will be involved in sedating him for a CT scan. Guess I'll find out soon.
EATING:
Micah has not eaten well since he came home. There was some concern that maybe he had thrush since he had been on almost every antibiotic known to the medical community during the month of April (and again in May with the rocephin and augmentin). But he has had major difficulties swallowing. He'll open his mouth for a bite of stage 2 baby food (which is the only food he allows in his mouth, and in very small quantities to start with), but then he'll appear to gag on it and not take any more. So... I wanted to make sure that he didn't have any damage due to his extended period of intubation (and the fact that the intubation did not go well in the first place and was done emergently).
We visited Micah's ENT on Wednesday to see if there was something going on inside there. Throat looks fine. Micah still has enormous tonsils, which are blocking roughly 80% of his airway. The ENT wants to do a formal sleep study to check for apnea before we address a swallow study to check for issues with eating. I believe he used the phrase, "You have the luxury of a feeding tube to keep him nourished." I SWEAR, IF I HEAR THAT PHRASE FROM A DOCTOR EVER AGAIN, I MIGHT HAVE TO DECK THAT DOC! I'll postpone the feeding rant posting for another day. But suffice it to say, there is nothing luxurious about having a child with a feeding tube.
I'll keep you posted when the sleep study is scheduled. Can you imagine Micah having a bunch of electrodes glued to his head and him falling asleep that way? I've heard that some clinics will allow the child to fall asleep BEFORE attempting to attach the monitoring stuff. Does anyone out there have sleep study experience? Please share in comments below.
The other thing that happened at the ENT's office is that the doc had to put Micah under a microscope to remove some wax buildup that was blocking the doc's view of Micah's eardrums. Good thing he did that. From Micah's left ear this doc pulled out a large scab. It was gross!
That was Wednesday. Micah slept through the night that night. And he ate an entire 4oz container of stage 2 bananas for dinner on Thursday. Coincidence? Unlikely. I didn't put two and two together. That was the brilliant mind of Micah's SLP (speech and language pathologist) - who Micah blew off today by taking a nap instead of working with her. That gave us time to chat about all of Micah's feeding stuff. She thought maybe Micah was having some irritation in that ear and by having the scab removed, his ear might feel better and that would make swallowing easier.
Unfortunately, consuming said bananas might be why he woke up crying FOUR times last night. This child is anything but a controlled experiment.
CARDIOLOGY:
Yes, it's been a medical week for us here. Micah saw his cardiologist yesterday for his 6-month checkup (oh, how I long to hear the, "See you in a year!" comment that most AV Canal repairs get after one year). But I'm not complaining... this was the best news of our week. Micah has mild leakage in his mitral valve and his tricuspid valve. His mitral regurg used to be mild-to-moderate, so this is actually an improvement. He is on enalapril and that has helped shrink the size of his heart and reduce the leakage. It appears that he'll be on enalapril for a long time (maybe a lifetime?). But the cardiologist does not think Micah will need another surgery to repair the valves. Praise the Lord!
I confess that I was worried about this appointment. Micah had an echo done in the hospital after he got out of the PICU. I requested it because I knew he had this upcoming appointment with his cardiologist and given the chance, I'll have the echo done while he is still on mild sedatives in a hospital bed, thank you very much. Micah wouldn't even let the cardiologist's nurse get his blood pressure on Thursday. I cannot imagine having to suffer through the torture of an echo on Thursday! Anyway... I was worried because his heart took a major beating when he was in toxic shock last month. His blood pressures were dangerously low (almost non-existent for a short period of time when he was being intubated). And his heart was working hard to get blood to his organs. It wouldn't have surprised me to hear that his heart had been damaged. But it wasn't!
Please pray for answers to Micah's eating issues, sleeping issues, and most importantly, that there would be some sort of resolution to his tube site redness (ideally, that it would not involve having to go in and surgically remove an abscess, but we'll take that if it means he'll be more comfortable and we can have peace about no recurrent infections in our little man).
On a separate note, we have the T21 Traveling Afghan. Pictures to follow!
INFECTION:
Micah was NOT sleeping well the week after he came home. By Friday 5/7, I couldn't take it anymore and took him to the pediatrician. We decided the lack of sleep was likely due to a) a urinary tract infection (UTI) and/or b) withdrawal symptoms from the heavy-duty sedatives he was on while in the hospital for so long. A CBC (complete blood count) revealed that Micah did, indeed, have an infection brewing again. After running blood cultures, she gave Micah a shot of rocephin to treat for a UTI. The next morning his CBC showed a much lower white cell count so the rocephin was doing its job. He got another shot of rocephin then started 8 days of augmentin (in case you're curious, the blood cultures all came back negative a few days later, so it was not a systemic infection he was fighting)
We also changed his MIC-KEY button (Micah's feeding port), per the recommendation from his pediatrician who felt that should have happened in the hospital due to the fact that staph can reside on plastic. Whether it was due to the button change or the antibiotics, Micah's tube site looked great for about a week (it doesn't usually look "clear", but it's never looked super bad, i.e. pussy). His tube site is now red and streaky again (he finished antibiotics on Monday and the tube site started looking questionable on Thursday).
He had another CBC done today and it looked fine. But with the tube site looking red again, the pediatrician consulted with Micah's GI doc about the possibility of an abscess below the skin. If there's an infection down under the skin, it wouldn't ooze or be noticable as a valid port of entry for the staph that almost killed him. But if there's an abscess there, it could be (and likely was) a ticking time bomb.
So... how do we find out if there's something buried there under his skin? A sedated CT scan is the answer from GI. The first opening is Tuesday morning, and after the nurse at the pediatrician's office got that all scheduled for us, I realized that this is the morning of Nathan's last day of school and he has a program that morning that I'd rather not miss. So now we wait until Monday when the scheduling office is open again. Micah is still a "cardiac kid," so I don't know what all will be involved in sedating him for a CT scan. Guess I'll find out soon.
EATING:
Micah has not eaten well since he came home. There was some concern that maybe he had thrush since he had been on almost every antibiotic known to the medical community during the month of April (and again in May with the rocephin and augmentin). But he has had major difficulties swallowing. He'll open his mouth for a bite of stage 2 baby food (which is the only food he allows in his mouth, and in very small quantities to start with), but then he'll appear to gag on it and not take any more. So... I wanted to make sure that he didn't have any damage due to his extended period of intubation (and the fact that the intubation did not go well in the first place and was done emergently).
We visited Micah's ENT on Wednesday to see if there was something going on inside there. Throat looks fine. Micah still has enormous tonsils, which are blocking roughly 80% of his airway. The ENT wants to do a formal sleep study to check for apnea before we address a swallow study to check for issues with eating. I believe he used the phrase, "You have the luxury of a feeding tube to keep him nourished." I SWEAR, IF I HEAR THAT PHRASE FROM A DOCTOR EVER AGAIN, I MIGHT HAVE TO DECK THAT DOC! I'll postpone the feeding rant posting for another day. But suffice it to say, there is nothing luxurious about having a child with a feeding tube.
I'll keep you posted when the sleep study is scheduled. Can you imagine Micah having a bunch of electrodes glued to his head and him falling asleep that way? I've heard that some clinics will allow the child to fall asleep BEFORE attempting to attach the monitoring stuff. Does anyone out there have sleep study experience? Please share in comments below.
The other thing that happened at the ENT's office is that the doc had to put Micah under a microscope to remove some wax buildup that was blocking the doc's view of Micah's eardrums. Good thing he did that. From Micah's left ear this doc pulled out a large scab. It was gross!
That was Wednesday. Micah slept through the night that night. And he ate an entire 4oz container of stage 2 bananas for dinner on Thursday. Coincidence? Unlikely. I didn't put two and two together. That was the brilliant mind of Micah's SLP (speech and language pathologist) - who Micah blew off today by taking a nap instead of working with her. That gave us time to chat about all of Micah's feeding stuff. She thought maybe Micah was having some irritation in that ear and by having the scab removed, his ear might feel better and that would make swallowing easier.
Unfortunately, consuming said bananas might be why he woke up crying FOUR times last night. This child is anything but a controlled experiment.
CARDIOLOGY:
Yes, it's been a medical week for us here. Micah saw his cardiologist yesterday for his 6-month checkup (oh, how I long to hear the, "See you in a year!" comment that most AV Canal repairs get after one year). But I'm not complaining... this was the best news of our week. Micah has mild leakage in his mitral valve and his tricuspid valve. His mitral regurg used to be mild-to-moderate, so this is actually an improvement. He is on enalapril and that has helped shrink the size of his heart and reduce the leakage. It appears that he'll be on enalapril for a long time (maybe a lifetime?). But the cardiologist does not think Micah will need another surgery to repair the valves. Praise the Lord!
I confess that I was worried about this appointment. Micah had an echo done in the hospital after he got out of the PICU. I requested it because I knew he had this upcoming appointment with his cardiologist and given the chance, I'll have the echo done while he is still on mild sedatives in a hospital bed, thank you very much. Micah wouldn't even let the cardiologist's nurse get his blood pressure on Thursday. I cannot imagine having to suffer through the torture of an echo on Thursday! Anyway... I was worried because his heart took a major beating when he was in toxic shock last month. His blood pressures were dangerously low (almost non-existent for a short period of time when he was being intubated). And his heart was working hard to get blood to his organs. It wouldn't have surprised me to hear that his heart had been damaged. But it wasn't!
Please pray for answers to Micah's eating issues, sleeping issues, and most importantly, that there would be some sort of resolution to his tube site redness (ideally, that it would not involve having to go in and surgically remove an abscess, but we'll take that if it means he'll be more comfortable and we can have peace about no recurrent infections in our little man).
On a separate note, we have the T21 Traveling Afghan. Pictures to follow!
Tuesday, May 11, 2010
Self-advocate talk and random photos
(If you subscribed to my blog on Feedburner and receive emails, I'm sorry that they're looking odd lately. If you click on the blog title in the email, it will link you to the blog and you can read it in the appropriate format.)
Our local Down syndrome parent group had a speaker tonight. She's 30 years old and has Down syndrome. She lives independently with a roommate (who also has Down syndrome), she does her own menu planning, cooking and shopping, she balances her own checkbook, she has two jobs, and she speaks very well. What an awesome encouragement to all of us parents in the day-to-day grind of therapies, IEP's, etc.! Lori's mom came with her, but mostly just to answer questions we had (and she ran powerpoint for Lori).
It was wonderful to be there with Micah. Our last gathering was a pizza party and Micah got sick the next day. This group pulled together and gave generously to us while Micah was sick. We're so blessed! This was Micah's highlight of the night:
Our local Down syndrome parent group had a speaker tonight. She's 30 years old and has Down syndrome. She lives independently with a roommate (who also has Down syndrome), she does her own menu planning, cooking and shopping, she balances her own checkbook, she has two jobs, and she speaks very well. What an awesome encouragement to all of us parents in the day-to-day grind of therapies, IEP's, etc.! Lori's mom came with her, but mostly just to answer questions we had (and she ran powerpoint for Lori).
It was wonderful to be there with Micah. Our last gathering was a pizza party and Micah got sick the next day. This group pulled together and gave generously to us while Micah was sick. We're so blessed! This was Micah's highlight of the night:
(Have I mentioned he hasn't been sleeping well?)
Saying "farewell" to our faithful childcare providers!
More photos, just for kicks.
Doesn't everyone sit like this when watching a video?
We had a fun trip to Chuck E. Cheese on Saturday with the H family. Our boys LOVE these girls!
(I could not figure out how to take this picture without Mark's head looking enormous)
Monday, May 10, 2010
Monday Micah update
Sorry for the lack of creativity. I will do a Mother's Day post soon... maybe. I also need to post pictures of our vacation in early April. Micah got sick 48 hours after we arrived home on Saturday the 10th, spent the whole week sick, then ended up in the ER that Saturday (you know the rest).
Since coming home from the hospital on Sunday May 2nd, Micah has not been sleeping well. After five days of that, I took him to the pediatrician on Friday. We both guessed UTI (urinary tract infection) or withdrawal from the methadone he received in the hospital (ironically to reduce withdrawal symptoms from the other meds he was on during the first week). The only way to accurately diagnose the UTI would be to put in a catheter (which would cause major irritation, which he clearly was already experiencing).
So, she opted to run some blood cultures (results still not back) and check a CBC. The CBC (complete blood count) indicated a bacterial infection so she gave him a shot of rocephin on Friday and again on Saturday. He's still not sleeping through the night, but this weekend was better than last week so we hope we're on the right track.
She also pointed out that bacteria can live on plastic so it would be a good idea to replace his MIC-KEY button (his feeding tube). I had asked about replacing the button when Micah was in the hospital but was told it wasn't important. Hm. Anyway, we changed his button on Saturday and the area around his tube site looks better today than it has in months. Hm.
Micah is on an 8-day course of an antibiotic to treat for staph and the UTI, just in case. I should have stopped his Miralax last Friday after the rocephin shot (you mommies of constipated little ones know EXACTLY what I mean here).
He's still only taking a very abbreviated nap and not sleeping through the night. Please pray that he gets more comfortable soon. Please also pray that he would get his strength back. He used to beat Matthew up the stairs and he still can't climb them all the way. His countenance is still off a bit too. And he's had a couple of purple experiences (he's oxygenating fine, so it's more of a temperature regulation problem). But we're blessed to have him home!
Since coming home from the hospital on Sunday May 2nd, Micah has not been sleeping well. After five days of that, I took him to the pediatrician on Friday. We both guessed UTI (urinary tract infection) or withdrawal from the methadone he received in the hospital (ironically to reduce withdrawal symptoms from the other meds he was on during the first week). The only way to accurately diagnose the UTI would be to put in a catheter (which would cause major irritation, which he clearly was already experiencing).
So, she opted to run some blood cultures (results still not back) and check a CBC. The CBC (complete blood count) indicated a bacterial infection so she gave him a shot of rocephin on Friday and again on Saturday. He's still not sleeping through the night, but this weekend was better than last week so we hope we're on the right track.
She also pointed out that bacteria can live on plastic so it would be a good idea to replace his MIC-KEY button (his feeding tube). I had asked about replacing the button when Micah was in the hospital but was told it wasn't important. Hm. Anyway, we changed his button on Saturday and the area around his tube site looks better today than it has in months. Hm.
Micah is on an 8-day course of an antibiotic to treat for staph and the UTI, just in case. I should have stopped his Miralax last Friday after the rocephin shot (you mommies of constipated little ones know EXACTLY what I mean here).
He's still only taking a very abbreviated nap and not sleeping through the night. Please pray that he gets more comfortable soon. Please also pray that he would get his strength back. He used to beat Matthew up the stairs and he still can't climb them all the way. His countenance is still off a bit too. And he's had a couple of purple experiences (he's oxygenating fine, so it's more of a temperature regulation problem). But we're blessed to have him home!
Wednesday, May 5, 2010
Happy Heart Day, Micah!
I had glorious intentions of sending a fun photo card of Micah to all of his medical friends at CHW who cared for him during his heart surgery and the weeks following. But the past three weeks have completely obliterated my ability to accomplish that goal. I might still do it and send them late.
Last year I gave a summary of Micah's heart repair day (May 5, 2008... Micah's 4-month birthday). I won't re-hash that again this year. Two weeks ago I thought Micah would still be in the hospital on this anniversary date. Two and a half weeks ago there was a possibility that Micah wouldn't make it to this anniversary date.
I'm convinced God has HUGE plans for our little warrior. He's survived so much. He's strong and courageous. And sweet as can be.
Happy Heart Day, sweet boy. I love you!
Last year I gave a summary of Micah's heart repair day (May 5, 2008... Micah's 4-month birthday). I won't re-hash that again this year. Two weeks ago I thought Micah would still be in the hospital on this anniversary date. Two and a half weeks ago there was a possibility that Micah wouldn't make it to this anniversary date.
I'm convinced God has HUGE plans for our little warrior. He's survived so much. He's strong and courageous. And sweet as can be.
Happy Heart Day, sweet boy. I love you!
Monday, May 3, 2010
Pictures from discharge day
It was a beautiful day to go home!
Bye-bye, nurses, docs and RT's. Thanks for all you've done for me!
Happy to be in the car
About 5 minutes later
Home with Oma
What is this kid doing to me?
(Nathan was very excited to see Micah)
Sunday, May 2, 2010
Saturday, May 1, 2010
Saturday Micah pictures
Check it out. The cheese face has returned!
Thanks to all who sent artwork. Micah has loved looking at his wall.
Micah and I went on a few stolls today. Here are some pics of Micah with two of his PICU nurses. Cally cried when she saw him today. She was on the PICU team that was sent to the ER when Micah was critical.
I was lovin' the snuggle time with cheesy boy.
We're taking our boy home tomorrow!!!
Mom update: Mom's ankle is healing well but it's going to be a long journey. She is to be non-weight-bearing for 6 total weeks. She was "released" from the rehab center today and is staying at our house for a week before flying back to Illinois. We set up a bed in the office on the 1st floor of our house for her as we have no 1st-floor bedroom. It's not a very private arrangement... there are no doors to the office. It's open to the foyer and the playroom. Good thing she's an early riser...
Thanks again for the prayers, everyone.
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