We also did not have as much lung improvement as we had hoped for. We are going to increase his respiratory therapy to try and help him out. We will do smart vest therapy again (same things we did at home) to shake and try to break up the gunk in his lungs. We also are going to use some sort of "cough assist" to try and help him expel his secretions. Part of PCD (primary ciliary dyskinesia) is that he has a much harder time getting the gunk out of his lungs and actually cough it up. Hopefully this will help him out.
We took a nice long wheelchair ride down to Subway so I could eat lunch, and then hit the playroom. He decided to play Just Dance, but by the time they set the game console up he was pretty tired and wanted to take a break. We returned to his room with a movie so he could rest up. He is very weak still and only tolerates being up and about for short periods of time. I think a lot of it now is the fact that he hasn't been able to eat for so long that he is just really weak from that too! Hopefully now that he will be getting some nutrition in him with the tube will help us be able to build up his strength.
Ethan was so happy again at mail time! He received an emoji pillow with some lego mini figs, a Target gift card, money and a handful of cards! He was thrilled and we are finally able to decorate the walls with all of our cards - so thank you so much!
Ethan did really well today! He did respiratory therapy with the smart vest and the cough assist machine. He of course didn't like it, but did it anyway. The cough assist start out with a mask for his face...but of course he completely panicked with that since he is terrified of masks (thinks he is being put to sleep for a procedure). The respiratory therapist then tracked down a mouthpiece that he could just put into his mouth and he handled that much better. He did not like the sensation at all, but at least he stuck it out.
After that respiratory session he earned another walk...and the nurses finally agreed to him getting Starbucks! He has been asking for a week so he was thrilled! Granted his belly only allowed him to have 1/3 of a mini frappuccino, but it was the most he ate in a long time so I was happy. That should help add a little weight to him too! :)
We ended up getting a roommate after all. *SOB* They seem nice, but I feel so horrible trying to keep Ethan quiet all the time so he doesn't bother them. Of course Ethan is moaning and whining that his belly doesn't feel good so I only hope he is peaceful tonight so the other family isn't upset. I also just hate trying to keep Ethan quiet when he is hurting...I know the last thing I am sure he wants to focus on is being quiet when he is in pain or scared. :( Hospitals really need to have private rooms for everyone!
After John finished up work for the day he was able to come out to visit, so we all (Callie and Grandma were visiting as well) were able to go for another nice walk around the hospital. We even went outside for a couple of minutes to feel the fresh air - I have only been outside for no more than 30 minutes in the past ten days - and Ethan hasn't been out at all. It felt wonderful. Tomorrow I hope to take him to the rooftop pavilion. I never have been there, but I think Ethan will really enjoy being outside again. We have a lot of pushing to do with keeping Ethan up and moving tomorrow. He definitely needs to be moving more, feeling better, tolerating food, and have his lung look better before we are allowed to come home. :'( I am really hoping that his energy will be so much better after this formula he has been receiving all day and all night, and that he will be able to get up and around even more tomorrow. I know we have dealt with his lung collapse for years in the past, so I am not terribly concerned about that. We can continue doing his smart vest therapy, oxygen, and everything for that at home. He just needs to get out of the hospital! His school posted class lists today and I hate missing out on all of this stuff! I am hoping that John or someone can swing by and take a picture of his class list for me so he knows who his teacher and classmates will be this year. And we definitely need to be home and doing well so we can attend all the school open houses next week!
Please continue to keep us in your prayers! We are making baby steps, but moving in the right direction thankfully. Please please pray for a peaceful night. He is very restless, whining and talking in his sleep, so our roommates are going to be pretty irritated soon. :(
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