Small changes again today. First, after 43 days, David’s art (artery) line was removed. This was in his left femur, and close to the groin – he was starting to get it dirty every day from his diaper and he started to get a sore near it. It was time for it to come out. It has caused clots to form that have made his left foot difficult to feel pulses and cooler, although that has started to get better recently. Perhaps with the art line gone, those clots will start to dissolve as well. The biggest thing that the art line gave us though was a constant read on blood pressure. They will now use a blood pressure cuff to measure it hourly, but it is hard to find a limb on his body that doesn’t have clots in it. Clots affect the read, and they would prefer he have an arm and a leg to read from, but for now, they just have his one arm.
David was also allowed to just be on RAM during the day today to see how that went. He did have some tachypneic (shallow breathing) episodes – especially when agitated, along with some bradycardia (lower heart rate), but tolerated it for the most part. The plan then is to have him on SCUBA overnight and then check the x-ray again in the morning and see how his lungs look.
Music therapy accompanied OT today, and he seemed to tolerate both all right. He played emoji Bingo this afternoon. Now that he’s working on gripping more, he held the pen to cross the pictures off during Bingo. He did so well with that task, and won a prize for his siblings to do to decorate his room. I tried to work with him doing the same things OT did yesterday and exposing him to different textures and trying to get him to reach towards different objects. Afterwards we had some story time. Throughout the day, David also seemed to enjoy looking at his mobile. He’s definitely starting to do more baby things.
That is so awesome to read your last sentence! You have got to be just bursting with joy at his progress. Thank you for taking the time to update us all so regularly, I for one really appreciate hearing what’s going on with David and I’m sure beyond a shadow of a doubt that other people are very grateful as well 💙 Thank you gracious God for all of the blessings Sleep well little David, you put in a busy day today and I’m a little suspicious you might have a very busy day again tomorrow!!! Sweet dreams🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Wonderful to hear daily progress. Small positive steps forward, go David!
Looks like he’s going to start writing out his own prescriptions with that pen in hand. It is certainly a wonderful thing to hear you say he’s doing more baby things!
Great to see him holding that pen! Wait til he finds out what else he can do with it 😉 (Sounds like Eli and Anna might be doing some artwork too, decorating his room?) … Those OT exercises sound really engaging for David, along with the reading and music, and the mobile and aquarium. His days are getting more interesting! And just being able to spend that kind of time together must be so good for both of you, just to feel close again, after all the time the machines and lines were in the way? Hope that his lungs look good tomorrow and that the clot situation gets better, or that the one arm keeps working for BP checks. We’ll keep praying for David’s care and healing… slow and steady! ❤️
I see he still has that little sock on his hand … little stinker 💕 praying for a good day with little steps forward.