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!
Suspense by Rachel Dylan
5 weeks ago