NICU Day #59 - Freakin' Frustrated

I am beyond frustrated right now.  If I swore there isn't a sailor alive who could keep up with the string of expletives I'd like to unleash!

I just called Dana to see if Dr. Parry had come in and I just hadn't been called yet.  He was called yesterday but hasn't been able to see Timmy yet.  However, he did call this morning and talked to Dr. Mendez.  She, in turn, called me around 11am to let me know that they had moved Timmy back from a 4.0 ET tube to a 3.5.  He has had the 4.0 in since around the time of the NICU move, one month ago today.  The thinking is that the tube may have been too big, creating irritation in his trachea/vocal cords/etc and causing them to collapse, swell, whatever - obstruct Timmy's upper airway in some fashion - when the tube has been removed.

Dr. Parry has not been in yet today but I'm hoping he'll make it before he leaves for the weekend.  In any case, Dana had plenty of other updates for me.

Let's start with the good.  Timmy is on full breast milk right now and tolerating very well.  Output looks great with minimal residuals.  Victoria, the skin specialist, was in again this morning and came to check Timmy's ostomy bag.  She wasn't impressed with the pedo bag and replaced it with one of the neonatal bags.  Fortunately, I was there the night Melissa went on the hunt for them and put in the order.  I saw that they were in last night and figured that he would get a neonatal bag on the next change, so not mad on that one.  It's not a good idea to have a bag the size of the pedo ostomy bag resting on a small infant - it pretty much covers his entire chest and belly - but our only other option was leaving the ostomy exposed again and we knew the bags were getting ordered (I actually heard the call go in) so it wasn't going to be on very long.

Dr. Cosantino was also in today.  She didn't talk to Dana, apparently, but did leave a note stating that the surgery for reanastomosing Timmy's intestines should be scheduled "in the near future".  Not sure what her definition of "near future" is, but I'm thinking 3-4 weeks max.  Otherwise, it's not "near" to me.  She was very happy with the ostomy and Timmy's output.  His stools look normal instead of heavily on the liquid side, so we are looking good to hit full feedings tomorrow night on the formula-free breast milk.

On to the maddening stuff.  Respiratory.  I am honestly just so mad right now.  Not sure who to be mad at, I think just the situation in general.  Ever since my water broke, our main concern was that Timmy didn't have enough amniotic fluid to breathe and move around in and that his lungs wouldn't be able to grow or, if they did, that they would be rigid.  Miracle of miracles, he was born breathing on his own and hasn't had a single problem with his lungs.

However, at 18 days, he was intubated due to the surgery for NEC.  The abdominal surgery caused such swelling all around that he had a hard time moving his lungs against it.  I'm sure the pain didn't exactly make him want to breathe deeply either.  I can understand that.

We were all sure that he would be off the ventilator in no time, once the swelling went down and Timmy wasn't battling the edema.  He had a very hard time getting rid of the fluid and required Lasix for it clear up until last week (4-5 weeks post-op).  He has since been tried for extubation 3-4 times and was extubated and reintubated today to replace the large ET tube with a smaller one.  Dr. Mendez and Jim, one of the respiratory therapists (whom Dana had speak with me to try to explain the procedure they used - honestly it mostly missed its mark) did a "Leak Cast or ET Tube Evaluation" (per Jim) and Dr. Mendez noted that the leak around the 4.0 tube wasn't as big as Dr. Parry thinks it should be, so Dr. Parry said that he wanted the tube replaced to see if we can allow Timmy's airway to heal itself and, hopefully, allow my little guy to finally be able to breathe on his own again.

At this point, Jim mentioned the possible necessity of a tracheotomy.  Seriously?!  The thought crossed my mind yesterday, "What do we do now?  Timmy's lungs are fine so we could pull the tube there but he needs it to keep his upper airway open, but having the tube in his trachea is what's also causing the problem, so how do we get around that..."  I don't even want to think about it.  I have seen other babies in the NICU with trachs and it may not be such a big deal but I am livid at the thought that Timmy, my post-PPROM miracle with perfect lungs, could end up needing a hole put into his neck so he can breathe just because someone used too big a tube!!!

I'm also mad at myself because a number of people have commented on the size of the tube in relation to Timmy's size and the response was always, "That's what he needs."  Well maybe he didn't!  I wish I had questioned but it's one of those things that I don't know enough about to question and went with.  It makes me want to go to medical school so badly.  How old is too old?  What's another 8-12 years of schooling after a decade off and another half million in debt?  With ObamaCare, we'll be sitting pretty in no time!  (Please sense the dripping sarcasm, mingled with some serious anger here.)  But I really would love some more medical knowledge right about now.  Praying Dr. Parry comes in soon and has something good to say.