A Little Something Extra

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.


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.


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.


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!


Kris said...

We will be praying for Micah's tube site issue, feeding and sleeping! Thanks for the update Jennie; I've been wondering how everything has been going for you there. I'm so sorry you are still dealing with so many medical issues with Micah, and that there are not clear asnwers. I'm praying for a break for you all! Blessings, Kris

Jonathan said...

Oh, Jennie, this is so much! I'm not sure what to comment except to say we really appreciate the update and continue to pray for Micah.


Jonathan said...

Um, I just misspelled my name. Ugh. ;) Time to trim nails too long for typing!


Andrew said...

so sorry stuff is lingering on after all you have been through. praying for you guys.

RK said...

So much going on!!!

We've done sleep study recently... http://braskabear.blogspot.com/2010/03/mommy-report-wired-and-ready-to-sleep.html and there are a few other posts right around that time too in March. It was a simple thing and Braska didn't mind the electrodes at all. And she went to sleep with no problem. I was really surprised, but glad!

I'm really kind of shocked that with tonsils that large they haven't already planned to remove them. Our feeding therapists are so anxious to try to get Braska's out, and hers aren't even that big. But they swear it makes a ton of difference with the feeding, textures, gagging stuff. Maybe with Micah's other health issues though they don't want to go there yet... ??

(If you get time, check your email from me...I have your background almost ready. Not that you have nothing else to do! ha!)

Sherri said...

All I can say is WOW! You folks must be so sleep deprived. We will continue to pray Is. 33:6 and Psalm 138:8 for you.

Keep on praising Him!

Julie said...

We are praying for your little guy here. Our Keira is close in age and it breaks my heart to think about all he (and you) have had to endure. Healing vibes sent your way.... Julie

my family said...

WOW is all I can say!You all remain in our prayers. How exciting to have the afghan!!

Kelli said...

Feel better soon Micah. Poor kid needs a break! I hope you get the answers you are looking for.

Baby Gabe said...

I totally am with you about having a child with a feeding tube not being easy. I keep hearing, "it's a good thing you have the tube as your safety net"...gah!
Anyway, Gabe has had 2 sleep studies to check his apnea. He wears oxygen at night. Our third sleep study is scheduled for July. The first time he screamed during the hook up and woke up frequently and it was pretty awful. The second one actually went much better. He was on more of a schedule then and by that point, he was use to having oxygen taped to his face at night. They sometimes have to put little elbow restraints on so they don't pull the wires. They also put this nasty glue stuff on their head to hold the electrodes in place and it's really hard to get out of hair. It may be a rough night, but try to work him hard that day to get him really tired that night. And remember that at least you will get some answers from all of it. good luck.

Monica Crumley said...

That was a lot to post! Please be assured of our ongoing prayers for sweet Micah. Great news that his heart won't need more fixing. I'm praying you (and he) get a break soon, too. Looking forward to seeing the Afghan in his hands. We had it about 10 months ago!

Kacey Bode said...

WOW! You sure have a lot going on. We had a sleep study done at the begining of last year, and as a result of that we had Ella's tonsils and adnoids taken out because of obstructive sleep apnea. The surgery went great, and Ella has not had a sinus infection since (every time she got the littlest cold it would go into an infection.) she still has a low O2 level when she sleeps but they aren't worried about that. The sleep study itself was easy, Ella fought with them a little bit, they put the electrodes on the best they could while she was awake and then fixed them when she fell asleep. I really hope everything gets healed/fixed/better!!! Give sweet Micah a kiss for me : )

Angela said...

Wow- so much going on!!! Thanks so much for posting the update. It helps to know specifics of what to pray for. Oh, Jennie- I long for the day when you can go for a few weeks and just chill and not have to worry about another Dr. visit or infection. It will come. I am believing with you for SOONER than later!!

Anonymous said...

I have spent many hours trying to put together the pieces of the puzzle to try to figure out what was causing some problem or another for John. Prayers for little mystery Micah. And prayers for you as you as you sort things out.

Ann Bremer

Andrea @ Unfailingly Loved said...

Praying for you all. Finally had a chance to catch up -- sounds like a lot to take in and manage. As always, you do an amazing job. I hope we can talk this week. Know that you are loved!

Little Liam said...

Oh you guys have been overwhelmed! My gosh I couldn't believe all you have been going through and you still have the patience to write it all down for us to follow along. My thoughts and prayers continue to be with you and little Micah. What a trooper--he deserves a break, you all do! Hang in there and GREAT news on the improved heart!! Small victories can keep you going at times-hold on to the hope!!


Loren Stow said...

Wow - that's a whole lot that you have to deal with.
I know how difficult it must be when you know that something just isn't right and yet you don't know what...
I'm praying for Micah and for your whole family.
PS: I read a quote once that went something like, "moms are only as happy as their unhappiest child." - it's so true!

Kelli said...

Thinking about you Micah!!

Emily said...

Praying for sweet Micah and your amazing family.