David’s cardiologist came and spoke with us first thing this morning. She had spoken to his surgeon since we last spoke yesterday, and since David is progressing, albeit at a snail’s pace (my words, not hers), he doesn’t want to make any decisions about David’s future at this time. He would like to see how he continues to progress. If he ever stalls out or starts going backwards, they will push up those discussions, but I don’t think they will be happening this week or next. Since she sees David outpatient, she would like to have a plan in place of next steps and where he is going, but she said she’ll work on being patient at this point.
David had a fairly sleepy day – I can’t blame him with this dreary weather. He screamed through his echo, and that wore him out for a bit. Then he spent time in his chair, and someone from child family life came and played with him for a bit. Once they left he was done with the chair and wanted to nap – but he was not granted any rest because then it was time for OT combined with music therapy. Today he did not appreciate them, and so his session was a little shorter, and he worked on some modified tummy time and stretching his neck. David mostly slept the rest of the day after this.
We’re hoping to talk with the cardiologist tomorrow to go over the echo results. Every week it usually states it is stable from the prior week, but the gradients change depending on who has done the read. I saw the tricuspid valve regurgitation is now a moderate-severe leak with 3 separate leaks. This is the first time it is not just moderate and more than 2 jets. The pulmonary vein gradient says 5-6 and last time it was graded a 6. It will be interesting to hear what his cardiologist thinks comparing the two. Also, the CT scan is still on the table as something they may request, we’ll have to find out if the echo images were good enough or not.
Speech came by this afternoon right after David had a bath and he was awake and smiley. He showed her how he sometimes chomps on his bear, so now she has a better understanding of where he might be when he’s ready to eat. For now though, he can’t eat anything due to his bloody stools. They continued through the day, but he finally didn’t have a bloody one this evening. He’s had x-rays every 8 hours to monitor, and so far everything has looked reassuring. There are thoughts that the blood could be caused by his daily aspirin. It’s a necessary medication due to his shunt, so they are hesitant to stop that. There’s another thought that maybe his tummy just has a hard time handling his formula that’s used to fortify his milk because this happens every time he starts getting close to fully fortified feeds. We spoke to the nutritionist today, and she may try fortifying it with a different formula that is a little easier on the tummy. Or it could be a milk allergy, but I think she said he’s too young to demonstrate that. I’m not sure how long they will keep him off feeds, but if he’s still off tomorrow, they will want to restart TPN so he can get some nutrition.
As for respiratory support, they did wean his PEEP to 6 today. He seemed to handle it. I think the next step is PEEP of 5 and then high flow. Once he’s on high-flow, I think he may be allowed to move upstairs and out of the ICU. I think that’s the only thing holding him in the ICU at this point. So we’ll see how he continues to monitor his respiratory weans.
As for withdrawal medication weans – it’s even slower than I thought. I thought it was alternating days with the medication weans – one day wean his methodone and the next his ativan. It turns out, the third day is a day of no weans. I thought it went back to the other med. So, today David got no weans, which may have been good to allow his body to adjust.
I got a couple hours of cuddles in with David this afternoon. He was mainly passed out – sound asleep with wide open mouth. A few different nurses came in to see him in his funny sleeping position. David also got to play Bingo today with the Broadway performers.
After all the napping he did today, I hope he sleeps well tonight. Hopefully no party in David’s room tonight.
Such joy during cuddle time just watching every little movement that he makes and feeling every little breath and twitch….those are precious moments 💙 There is so much going on that I’m sure he loves his quiet time snuggled up with Mommy and Daddy. My prayers are for the grieving family, that they are surrounded by love and support and they feel God’s love and that their baby is in the arms of Jesus. I continue to pray for the entire medical team at the hospital. They are so dedicated to their patients and their families. They hold each of their patients and their families in their hearts. I pray for your entire family Jessica. You are all traveling through new territory and can only imagine that you do get exhausted at times. I pray that you will each take some time out of everyday to just breathe and be in the presence to hear God’s voice. Jessica and Adam you are doing a phenomenal job and maintaining as much normalcy as possible for your family. You are a shining example to so many. I pray that you all have a peaceful and restful night and especially for David 💤 Sweet dreams Eli and Anna💤💤
I love seeing David with his blue octopus 💕. My prayers continue for those slow steps forward, each one giving David (and you and Adam) the time to adjust and rest to take the next one.