Instability

The past 48 hours have been an absolute roller coaster. I would almost argue some of the most uncertain, anxiety inducing days of our stay. I say that not because they were any more difficult than preceding rough days, just way more out of left field. 

The virus that Sutton has contracted is pretty nasty when it occurs in hospitalized kiddos. Twice yesterday his fever spiked to extremely high temperatures, he was vomiting, his heart rate went above 200 for a very extended time frame, his blood pressure bottomed out and his tissue perfusion became very poor with skin mottling (where the skin is very pale and the vasculature shows through like a giant spider web) and a very dusky overall appearance. During the second occurrence yesterday evening they gave him several fluid boluses in an attempt to reduce some of those symptoms I mentioned and it took some time for him to regain even mild stability. Once he was transportable, they moved us down to sit directly in front of the nurses station where the physicians and nurse practitioners reside 24/7 when they aren't with patients. He's the unnerving kid now. His heart rate took several hours after he recovered to come down but, thank God, he has been stable since the move. 

Yesterday evening there was discussion about potential reintubation to help maintain respiratory status if they couldn't stabilize him. Other respiratory support options that are less invasive are not okay right now because of all of his neck surgeries. If he hadn't been as healthy as he was then this could have quickly turned into a disaster. I just think how bad this could have been two or three weeks ago and am so thankful at the timing of all of this. We are grateful that God protected Sutton at his points of most vulnerability and continues to guide us and his care team in making the best decisions for his care.

The preliminary blood cultures have returned and are growing yeast from his PICC line. PICC lines are a high infection risk, so we're not surprised that he got an infection after nearly 5 weeks, but it adds insult to injury. They started a peripheral IV and an anti fungal and pulled the PICC line. 

Today actually marks the day we would have been discharged home from our NICU stay. We spent 32 days there and we are on day 32 here. Bummer. But he does seem to be feeling better today and, thanks to scheduled IV Tylenol and regular use of ibuprofen, he hasn't spiked a fever again since yesterday evening. 

We are back to advancing feeds again and, without any further setbacks, he will be up to goal feeds in 24 hours. Then they can work at his med wean again. He had been on oral meds through his GJ, but was transitioned back to IV after he began to decline Tuesday evening. Once he is at his goal rate for feeds and tolerating oral meds again there will be no more need for IV access. This is good because they had a killer time getting this IV placed (it's in his foot) and if it won't hold up they may need to insert another PICC. So we're hopeful the IV will at least hold out long enough to make these transitions and then it won't be essential. 

Thank you for your continued prayers for his healing and progress.