PICU Day 16 ~ Full Update

~Chilling before the swallow study...hungry & sleepy~

Today was a very busy day with various tests and changes, but it was encouraging to move forward with some things in an attempt to seek answers, as opposed to simply waiting for some other symptom to surface.  The day began at midnight with the Lovenox shot, but Noelle actually settled quite quickly afterwards and was able to sleep until they needed to draw labs at 4:00a.m.  Unfortunately, her central line was no longer pulling back, so they had to stick her separately to obtain what they needed; but of course, it took three times to secure the full amount required for the tests they needed to run.  Thankfully, I was allowed to give her a partial feed with her bottle and distract/console her and then spend some time cuddling as well.

Actually, the consoling is probably more for myself than for her as she recovers quite quickly now that she is feeling so much better.  It still takes a toll on her, but our happy girl bounces back and often has smiles for everyone as soon as they are done messing with her.

~Sleep finally won out~

Through the night, the nurses had been carefully recording all of Noelle's desats for the pulmonology department to review, but she had had only a few and had self recovered quickly.  However, two hours after her early morning bottle, she starting desatting back to back, giving better insight into some of the things I had described previously to the doctors.  While I do not like to see these things happening, I am thankful that it is happening while we are still in the hospital so the medical team can see for themselves what I have seen and suspected for weeks.  7:00a.m. brought the need to obtain a blood gas; but she was so tired that she simply showed some discomfort but did not open her eyes and settled back into a deep sleep after they were done.  

~These echocardiograms are not so bad!!~

The large concern presented here as they discovered that Noelle's CO2 levels were significantly high, but other things were on target so it puzzled the medical staff greatly.  We reviewed things again through morning rounds, and the cardiologist decided to further consult with the GI and pulmonology departments for the various issues we were still experiencing.  The determination was to send her for a full swallow test to be certain she was not aspirating while feeding, as well as to see if they might possibly detect any signs of reflux (this is not the test used for reflux, but they can sometimes see indications).  This test was amazing to watch!  We traveled to a different floor (which is no easy task with a baby on oxygen and monitors...the equipment they can attach to her hospital crib is impressive!!), and entered a radiology room that had a very large machine.  They put Noelle in a little seat behind the machine, and I was allowed to sit a distance away and watch the results on a computer screen.

~Sporting a new headband from Auntie Em~

~Early Morning Bottle~

They put a small amount of dye into her milk and then fed her as she sat in the baby seat, all while the machine took an x-ray video of her progress.  The x-ray video portrayed on my computer screen and literally showed the milk in her mouth, the swallow motion, and the milk coursing through her little body down to her stomach.  It was incredibly enlightening and was fun to watch!!  Thankfully, she passed the swallow test with flying colors, but they did see signs of reflux (for which I was thankful...we have known for months that she is refluxing but were not sure of the severity).  That gave a pretty definitive answer to the desat episodes; and they decided to switch her medication in an attempt to better control the issue.  From there, we traveled back to her room and met the ultrasound technician to perform her echocardiogram, on which we hope to have results back today (we are looking for better function of the right side of her heart as well as lowered pulmonary pressures).  We consulted with the pulmonology department in the afternoon, and they are puzzled by this high CO2 level and are not willing to let her go home with this issue unsolved.  Unfortunately, because it is so unusual, they are trying some different therapies/treatments but are not sure of the cause or the solution for this issue.  Consequently we started some PT chest therapy and albuterol treatments for 24 hours, and they will recheck the blood gas at the end of the day to see if any changes have occurred. We then were informed that although we are still sorting through these final issues, Noelle was stable enough to move to "the floor" (which is really only a few doors down from where we were currently), so we made the transition to the much larger and more private room.  The evening was spent doing laundry (yes, we feel we fully live here now!!), and getting back to Noelle's regular feeding schedule as well as the therapy schedule for the night.  Of course the amount of time that needed to occur between the feeds was different than the therapy, which was different than the shot, which was different than the labs.  So needless to say, it was an eventful night; but thankfully, Noelle seemed to rest very well in between all of the interruptions.  We are hopeful that after getting back to full bottle feeds and the repeat blood gas that we will be cleared to go home and continue care as an outpatient.  We are so thankful for the little things that God allows to happen to encourage us and strengthen us along this path and are excited at the possibility of going home very soon!  Thank you for praying along with us.