Fussy, fussy, David. No one knows why he was so irritable today. He wasn’t screaming upset, just fussy and didn’t want to sleep. I think most of the day was spent trying to comfort him and figure out the reason behind the cries. There was no clear cut reason for the fussiness – no drugs except Keppra were weaned yesterday, so it didn’t seem withdrawal related. Keppra itself can cause fussiness, so it’s removal should have made him less fussy. Also, he was back to needing the high flow and still had some retractions this morning, so that was another step back for him. Due to all of this, David had none of his meds weaned today, got an xray to examine his chest and abdomen, and even had his feeds paused for a bit to see if that was the culprit.
After pausing his feeds for a couple hours, and it not seeming to affect his attitude, they were resumed. The x-ray showed that the upper lobe of his left lung was a little hazy. Therefore, his right lung has not collapsed again at least. David will continue to get his respiratory treatments every 4 hours between 8 AM and 8 PM. Yesterday the sump to his tummy came out. This relieves pressure in his stomach, so there was also some thought that maybe it needs to be put back in. I don’t know if they saw a buildup of air in the stomach on the xray or not, but he did not get a new sump.
Otherwise, David had an expressionless face for a wagon ride, but he didn’t fuss at all during it so he must have enjoyed it. Well, maybe he fussed once when Adam was trying to adjust his nasal cannula and ended up just messing with him. He saw many friends who clapped and cheered for him as he made his laps. Today he did 1.5 laps around the unit. After his ride, he had music therapy, which he absolutely loved. He had so many smiles while she played (and helped him play) music. Today, she thought he graduated to the ukulele, and he really did seem to enjoy that.
After music, he finally took a nap. Kind of. He still woke up every half hour and needed some consoling, but he also finally got some rest. Much to my displeasure, David did seem to calm quicker when he was granted some screen time. Tomorrow, I hope David has a better, more restful day. I don’t think anyone wants to see him have another cranky day. Otherwise, there will likely be more conversations tomorrow about what his next steps will be if he stalls out and has trouble moving forward. Some days though, are just grumpy days with no progress, so hopefully that’s what today was, and tonight he’ll sleep well so he can get back on track in the morning.
Oh shoot, I’m sorry that you had a bugger of a day David. But am so glad that you had a good time with music 🎶 I have a ukulele too! You probably are playing better than I am👍🏻 What did you say??? You were sad that you didn’t get to walk Fern today? I will look at the pictures and see….ask your mom or dad to put up a picture of Fern by your bed so you can see her easily. I pray that you have a good sleep tonight and of you and Fern snuggled up 💤 God’s blessings upon you sweet David 🙏🏻