|B was sleeping when I got there this morning with a stethoscope wrapped around him...|
all the comforts of home!
|Perhaps it's time for new jammies??|
I'm not a first time Mom, I've done two other 2 yr olds, but it's still hard not to react when he's self harming for attention. I am feeling like a rookie at this again! He was bashing yesterday and his Nurse looked in and I calmly confirmed that yes, he was bashing because I had to go refill my water bottle. The hard part is that he doesn't feel pain like you or I, his pain sensors are very different. He's had to deal with a great deal of pain in his little life (not to mention brain injuries and yaddas yaddas) so his pain tolerance is much higher than the average 2 yr old.
This too will pass (oh god I hope this too will pass!!!!!)...
|Big brother hugs!|
The wonderful part of the day was seeing B and his biggest brother Torin shower each other with love. Rylan is running a fever and stayed home with his Dad which gave Torin the opportunity to come to the hospital alone with Momma. B was SO excited to see him and as you can see from the photos, they were both pretty happy to spend the time together. I had more than one person comment on their special relationship and I couldn't agree more.
Colleen (one of B's prior Homecare therapists) stopped by for a visit this morning and then went in search of a play mat for B. I got B out of the crib and on the floor and Torin got down there beside him. What happened next was pure magic! Ohmygoodness we laughed and laughed. B was SO happy and laughing SO hard that he was only sating at 72%. I had to actually lay him down and get him to breathe a bit before I could let him continue! Of course the fact that he was setting off the monitors just made him laugh harder...
The great health news is that B's IV was pulled last night (after it stopped functioning) and he's on his regular formula again. We've switched all the meds back to his g-tube and he's doing well on them. He was a bit leaky today but he was also trying to keep up with his big brother. I've outlined his feeding schedule to titrate his feeds up over the next three days and then we should be able to COME HOME.
|Finally a bath after two weeks for the stinky boy! :)|
He is also down to a 1/2 litre of oxygen which is reassuring but now that he's more active he's having more desats. It's not that big of a deal to have the occasional desat (we all do) but he's taking a bit to 'recover' from them. We did do an hour on 'room air' today when I got to throw the stinky boy in the tub (12 days on IV means 12 days with NO bath) and he did okay but not great. He was visibly working his shoulders after the hour (but sating well) so he's not ready yet and that's okay. If we need to come home on oxygen supports, we'll come home on oxygen supports. I have to stop and remind myself that there were THREE viruses in there and he's going to need three times the amount of support to 'heal'.
|Reprogramming my IV pumps last night...|
We did also get back his latest swabs and he is still positive for the RSV and the Adenovirus so we're still on isolation (which with all the bugs in the hospital isn't a bad thing but if I could take him for a walk life would be nicer!!).
|WAIT! How come you never ask for my 'serious' face Momma??|
|Oh right! It's because I'm a goof ball!!|
As I was having a chat with a friend today I was commenting to her that it takes a week to get back into the swing of hospital living but it takes two weeks to adjust getting back home. Well hopefully as of Tuesday or Wednesday (shh don't tell B) we'll be getting back into the transition home.
|Hangin' onto the crib for comfort?|
From Our Home (Unit 2) To Yours...