Wednesday, December 26, 2012

Back to CHOC.

I just reread my post from last night and it's amazing how things change so quickly with Ryan.  Last night when we put him to bed, we thought he was on the mend because he was sleeping comfortably and finally satting 100 again.  Unfortunately, we were wrong.  At a little bit after midnight, he woke up coughing and took a turn for the worse.  His sats dropped into the 80s and even with turning him up to 2 liters flow we couldn't get them back up.  We tried suctioning him, we gave his nebulizer treatments, I was holding him upright to try to get him to drain some of the mucous in his chest, but nothing helped.  He was stuck at around 88-91% oxygen.  This number is actually within the range of "acceptable" for most NICU babies, but not our little guy with his messed up lungs.  He doesn't have the reserves necessary to tough it out at that lower level, so he always needs to be 92 or higher.  After we tried all the tricks we had, I called the on-call pulmonologist.  By the time 3am hit, he was starting to cough and wheeze even more than before, and we still hadn't received a call back from the doctor, so we decided to just take him in.  Thank God we did because as soon as we were getting him into the car seat, he had such a bad coughing spell he started to desat into the 60s, but he popped back up to 90 on his own.  Driving home from the hospital today I couldn't stop thinking about that moment.  God really was watching out for him because if he hadn't come back out of that desat on his own, I don't know what would've happened.  I can't even think about it.

So, he's at CHOC in the PICU now and Dave is spending the night with him tonight while I stay with Dani.  I was able to stay with him a few hours today while my mom watched Dani, and it's so hard to see your baby so sick.  Even after everything we went through in the NICU, I think these past few days have been some of the most difficult.  I think it's because he has been looking so happy and healthy since he's been home, and now to see his poor face looking so sick and to hear him coughing and wheezing, it's just heartbreaking.  Plus, they constantly have to suction his throat out through his nose, and he does not like it at all (who would?).  But, as hard as this is, we are SO, so blessed that it isn't any worse.  The pulmonologist came by to see him today and answer our questions.  We found out a lot of info about RSV.  Apparently, the symptoms typically peak 3-5 days after the first signs of illness, which makes sense since we first noticed him getting sick around Saturday morning.  RSV is not an infection, it's a virus, so the snot that you suction out will still be clear or white.  The worst part of this particular virus is that the mucous is very thick, like glue.  That's why it affects babies so much more because they don't have the strength/know-how to really cough that stuff up, so it gets stuck in their lungs and they can gag/choke on it.  The only real treatment for it is extra oxygen support, nebulizer meds, and fluids/rest.  Ryan was also put on an antibiotic because his lungs were starting to look a little hazy in the x-ray they took this morning.  It could be an infection in addition to the virus, or it could be the mucous plugs showing up.  Either way, he'll be covered just to be safe.

The biggest blessing to all of this is that they knew he would be high risk for RSV, so he was one of the first patients to get the synagis shot at CHOC.  This gives him antibodies to help fight off RSV, and while it obviously didn't prevent him from getting it, it's definitely helping him to fight through this.  The doctor told us today that if he hadn't had the synagis shots, he most definitely would've been intubated by now.  We are hoping and praying that he will stay stable on the high flow nasal cannula he's on now so that he won't need to be intubated at all.  We are taking it day by day, and they don't have an idea quite yet of when he might be able to come home.  It all depends on him.  They'll let him come home once he gets back down to the same level of oxygen support he was on before, which is .5 liters.  God willing, he will keep fighting with all the strength he has in him and he'll be able to get home sooner rather than later.  Thank you all for checking in and sending thoughts and prayers his way.  We definitely feel them and we know that God is listening and helping him through each day.

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Anonymous said...

Our prayers are with Ryan and you guys. Hope he is well and home soon! Hang in there Jen!
Love, Uncle Tom and Aunt Linda

Anonymous said...

Hadn't checked your site in a few days as we were gone to Traverse City (our daughter Heidi & family live very near Pauline & Joe) for Christmas. So reading your newest blog has been quite a shock, but thankfully you two seem to know just when to get Ryan to CHOC!! Did not realize he was so susceptible to RSV; sounds like he is on the road to recovery. Prayers for all of you and in particular for the docs/nurses who care for him. May 2013 be a much brighter time for all of you. Love, The Tanises

urban flowerpot said...

Ryan (and your whole family) is in my thoughts and prayers. I am so glad he qualified for that Synagis shot.