We got home yesterday about 4pm.
We go back Thursday, LOL. So goes the life. He's going to the OR to get his stitches out, get his drain replaced and get an airway scope.
Tuesday, August 30, 2011
Sunday, August 28, 2011
Twiddling our thumbs...
We are earnestly, sincerely hoping that at 6:30 tomorrow morning they are going to say, "see you next week! (We already know we have to come back Friday or Tuesday or something).
We've been trying to kill time... and kill time... and kill time. Spent some time in the playroom.
Spent some time in the wagon.
Spent some time roaming the hall floor.
Spent some time throwing balls.
We're all pretty ready to get out of here.
I'll share a little story I put on FB. Never got the picture, but you better believe it was super cute.
There's a probably 5 year old girl on the floor with her stuffed dog. The dog apparently can't come into her room (in her mind) so he's sitting outside. So, the nurse took two of those ugly patient tubs and put them together, cut out an opening and made a dog house! She covered it with the comics from the newspaper. The little girl was SOOO happy!
The mom was just tickled as well. It was the highlight of our day. The girl had a trach and asked if Micah had one too. She was probably here for a capping trial (put a cap on the trach and see how they do, a step before taking the trach out). Boy... she'd talk your ear off. Her voice was very raspy and breathy, but I got most of what she was saying. She literally would talk until she couldn't talk and then gasp for air. Apparently not too used to being capped!
Anyways... if you don't hear from us online after 10am, we're probably on our way home.
We've been trying to kill time... and kill time... and kill time. Spent some time in the playroom.
Spent some time in the wagon.Spent some time roaming the hall floor.
Spent some time throwing balls.
We're all pretty ready to get out of here.
I'll share a little story I put on FB. Never got the picture, but you better believe it was super cute.
There's a probably 5 year old girl on the floor with her stuffed dog. The dog apparently can't come into her room (in her mind) so he's sitting outside. So, the nurse took two of those ugly patient tubs and put them together, cut out an opening and made a dog house! She covered it with the comics from the newspaper. The little girl was SOOO happy!
The mom was just tickled as well. It was the highlight of our day. The girl had a trach and asked if Micah had one too. She was probably here for a capping trial (put a cap on the trach and see how they do, a step before taking the trach out). Boy... she'd talk your ear off. Her voice was very raspy and breathy, but I got most of what she was saying. She literally would talk until she couldn't talk and then gasp for air. Apparently not too used to being capped!
Anyways... if you don't hear from us online after 10am, we're probably on our way home.
Saturday, August 27, 2011
Friday, August 26, 2011
Try me...
So, on rounds this morning they confirmed we're stuck here til Monday, and even after that the question was whether we can go home or stay local. Seriously, if we're stuck here I'm really thinking about going to the zoo! Of course, Micah's super swollen slightly black and blue face might get some looks (I didn't remember his big and floppy hat), that's nothing out of the ordinary.
Seriously, it's like watching a faucet drip. And just as irritating.
The drain is barely even working, so there's a hole in his neck and it's dripping down his clothes. They're bringing in Interventional Radiology to see if they have any ideas. To be fair, Dr. Elluru told us "2-10 days" to expect to be down here. 2-10? Really?!
All this and we have to be back probably the 6th to get the stitches out. I'm guessing not the 5th, since it's Labor Day.
We're still waiting on some of his bloodwork to see if he'll get that 4-5 hour infusion before we leave. I can't imagine we'll get out of here without it, he doesn't have a good track record in IGG land.
The highlight of my evening was chatting on facebook with a handful of moms that have kids with LM's. We decided we could do our own reality tv show, "The real housewives" if you will. :) We'll show them drama! Or, instead of "The Office" We could have "the Doctors Office". The spinoff could be "The Therapy Office". :)
Seriously, it's like watching a faucet drip. And just as irritating.
The drain is barely even working, so there's a hole in his neck and it's dripping down his clothes. They're bringing in Interventional Radiology to see if they have any ideas. To be fair, Dr. Elluru told us "2-10 days" to expect to be down here. 2-10? Really?!
All this and we have to be back probably the 6th to get the stitches out. I'm guessing not the 5th, since it's Labor Day.
We're still waiting on some of his bloodwork to see if he'll get that 4-5 hour infusion before we leave. I can't imagine we'll get out of here without it, he doesn't have a good track record in IGG land.
The highlight of my evening was chatting on facebook with a handful of moms that have kids with LM's. We decided we could do our own reality tv show, "The real housewives" if you will. :) We'll show them drama! Or, instead of "The Office" We could have "the Doctors Office". The spinoff could be "The Therapy Office". :)
Thursday, August 25, 2011
Grumble, complain, whine, moan, etc.
We're here til Monday, folks.
Could you guess who doesn't want to be here til Monday?
This is the best pic we've gotten today (mainly because we haven't had Travis and I in the same room for more than a few minutes).
His eye swelling is going down, but his lower half of his face is still really swollen. It's almost like his mouth is swollen open... the tissue is so tight. I'm hoping that's all it is. He doesn't seem like he can move it. Thank goodness for feeding tubes!
I know it's probably not something most can relate to, but I'm so glad for familiar faces around here. We've got the herd of vascular malformation people which visit at least once a day. Our first night when we were in the PICU we had a night nurse we'd had a few times before... she's nothing short of AMAZING. Today, in walked our favorite PCA (i think it's equivalent to a CNA, sort of.) His name is Jarvis and he's always fun. He was excited to see Micah, and he's a lot more fun than your average PCA. He got Micah a very "boy" blanket for his bed... It's the little things really!
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