November 17, 2023

Today has been a learning day for all of us as we learn how to work with David for his eventual discharge. There’s no clear date as to when that will be, but his main focus for now is learning how to eat orally. The cardiologists said there is nothing as it relates to cardiology holding him in here at this point, it comes down to his feedings and gaining weight now. 

The pulmonology team stopped by yesterday after both Adam and I had left for dinner and time with Eli and Anna, and we were told today that they wanted a full resolution CT scan. That kind of occurred today. The imaging team called and said they could not do a full resolution scan if David was unable to breathe and hold his breath on command. He has certainly come a long way, but that’s definitely a few years off, so they ended up not doing a high resolution scan. He was back in the room very quickly – much quicker than I anticipated. We are still waiting to be briefed on the scan results from the doctors so maybe we’ll have some clarification on the results tomorrow. 

David had a great day with speech therapy today! They came in twice today, and both times he drank 15 ml of milk from the bottle. He did great at his first session and even better at the second session. It’s amazing to see him learning this new skill. After he finishes his bottle, he fills his diaper, and then seems to de-saturate. He ended up getting a bit of oxygen to get him back up to where he needed. They have trouble figuring him out, because he’ll sit at the upper 60s and low 70s, and as soon as he’s given a tiny dose of oxygen, he jumps to 92%. His goal range is between 75-85%, so he goes from being too low without any oxygen to being too high, and then he settles out again once the oxygen is off. He’s going to keep his new cannula so if he does need a tiny amount of oxygen, it’s already set up and ready for him. 

Since he’s learning the bottle, they would like to put the NG tube back in, so that when he finishes a bottle feed, whatever is left in his bottle can be pushed into his stomach from the NG tube. However, once again, getting the tube through his left nostril is proving to be troublesome. There has only been one nurse who has been able to do it successfully, and she was not working today. David needs to stop taking that tube out! 

As for Adam and I, we are learning and practicing how to administer medications for David. We were given syringes and tubes to practice giving medications through a feeding tube today, and then I gave David two medications in his NJ tube. Later we were given some needles and syringes with some vials of saline solution to practice giving medication via an injection. One of David’s medications was changed from IV to an injection today, and he’ll go home on the injection, so it’s a skill we need to learn. We had an orange on hand, so we’ve been practicing giving it to the orange. We also briefly met with a home care coordinator who is working on getting things set up so that we’ll have everything we need available to us at home when we’re discharged – such as a scale, an oxygen saturation monitor, knowing infant CPR, administering medications, etc. 

OT also was by today to get David stretched out. We’re supposed to be working with him on modified tummy time – which is basically holding him to our chests. Hopefully he rests well tonight – he was awake for most of the day and worked hard today. Adam stayed with him last night, and said his oxygen monitor kept beeping throughout the night, and eventually he was given a tiny bit of oxygen and then he quickly was back up where he needed to be. It’s nice having someone with him most of the time now that we’re getting to be more involved. We do have some time away from him in the evening where we come home to spend some time with the other kids before they go to bed. We’re definitely looking forward to the day where we don’t have to divide our time between two places. 

A couple more fun things for David today. He got a new crib mobile which he seems to enjoy watching spin. Also, a volunteer service dog came in for a visit. We didn’t think David would really see the dog, but we sat him into his sitting position and the dog stood up. David seemed to stare at the pup for quite a while. We were amazed that he seemed to enjoy the dog being there. If only his dogs at home were as well behaved.