Last weekend, it was respiratory distress and atelectasis, c-diff and conjunctivitis. He went home and t.
hat same night, he was having all the respiratory distress symptoms again plus retching.
Late yesterday, after brainstorming with the CMD doctor, we realized this whole thing could be GI related with an incidental finding of atelectasis and c-diff. Sooooo ... I started to put together a plan
Last night he did horribly again, waking often and mild respiratory distress. This morning I was weighing what to do and how to handle it. I put a call into the GI. While we waited for the call back, I went to Walmart for our weekly groceries.
As I was getting Manny out of the van to go in the house, he was saying, "Owie" and when I picked him up, I heard this POP and saw that his tube was out of place. Normally I can only see the button, but now I could see about 6-8 inches of tube. The balloon for the G tube (which holds it in place) was burst. Because the tube didn't come completely out, I knew I had a couple of hours to get to the ER/Hospital.
I could feel my blood pressure shoot up. I kept reassuring myself that this was fine but I was in SHOCK, not believing that this had truly happened. But at the same time, I said aloud, "Thanks for a clear answer." You see, earlier in the day, I wasn't sure if we should be in the hospital or what ... but now it was PERFECTLY CLEAR.
I put in another call to the GI and a call to the Pediatrician. The Pedi called back first and I told her I knew we'd need to be admitted.
Why? He has a gj tube which must be surgically implanted under general anesthesia and they do it in Interventional Radiology ... they insert dye and then watch it go in. A G tube insertion isn't helpful for him as his stomach is completely shut down (even his stomach acids and saliva have to be vented out normally). So he has to have IV fluids immediately or he will dehydrate. He's on continuous feeds and can have nothing in his mouth or stomach ... so it either has to go in his jtube (which is obviously not there) or his veins. Thus the need to be admitted.
We arrive at the hospital and remember how I said the jtube came almost completely out? It was hanging in there while we got to the hospital. As we were sitting and waiting for admitting, the rest of it just popped out with a sound. And now it's a true emergency as they only have so long before the stoma (hole) closes up completely. So they rushed us through admitting (we were admitted last weekend so not much has changed since then!) and got us to our room.
|Guess who wants to be like Mama? |
I did a quick, "Hi ... his stoma needs to be kept opened" and that's how we met our nurse today. Meanwhile his shirt and pants were SOAKED from all the stomach contents leaking. (So much fun) They put in a temporary "Place holder" to keep it opened and a bunch of gauze to keep the stomach contents from leaking everywhere.
Kaley is going to spend the night with us tonight and help keep him entertained. YAY me!! This means I can actually go to the restroom, take a shower and leave to get food. And with her here, I will remember to EAT too (I usually forget!)
And I should add, he WAS in pain but once the thing popped (10am), his pain went away.
They were able to get the IV in on the first stick (YAY) and one of the blood vials but they needed two. They tried a finger stick for the second one as they only needed a small amount (Bullet). But it failed to give them enough so they gave him a break. Later they came back and did a bigger stick on the finger and it was enough blood. Unfortunately, it clotted and couldn't be used. So they came back with another nurse and she found a vein, went for it but it blew. So 4 sticks and still not all the blood they need. They will send in the IV team later.
Now it's almost 7:30 and uneventful. Getting all set up for the evening routine.
9pm and he starts to cry a LOT. Owie, owie. I check all the usual spots and he doesn't want me to touch his stomach. So I pull up his shirt and this is what I find:
What you're looking at ... the tube thing is called a foley and it's keeping the hole (stoma) opened until Monday when the tube can be reinserted. (They close up fast ... like in hours.) To hold it in place, they have to tape it. And the gauze is to absorb all the things that leak out of his tummy. Well, they used paper tape ... even though it's on his chart as an allergy. But they chanced it. Sure enough, ALLERGIC reaction. (Do you see the slight red just above his diaper, to the right of the tape?) The bottom corner has actually pulled away some of his skin. And the skin is ooozing (I know you can't see that in the picture). Seriously ... after only about 6 hours. There's some on his foot and he's fine but not on his tummy. So they replaced it.
9:15 the IV team came in ... Mani is her name (Pronounced the same). She hugged me when she saw me ... we're becoming friends LOL. She said she didn't recognize the name but when she opened the door, she knew us immediately. She said the staff all were like, "You know her, she's the Barbie looking lady." LOL LOL LOL ... years ago I heard people say that about me but not recently. I feel 100 years old these days.
She got it on the first stick (she always does). I even asked for her at 2 when we arrived but Nooooo, they all had to try it first. (ugh) I will insist harder next time! But she had to use a wrist vein ... she calls them the "Mean veins" because they hurt the most. But she was out of other options of viable veins. But it was quick and it's over.
Oh, and I forgot to mention, Dr. Shamma, the doc from last weekend is our doc again. She had just come from the 8th floor (our usual floor) and she said that she told them she was coming to see Manny. They were all jealous! They were upset they didn't get him. Me too, actually ... but their floor was full except for double rooms and since he tested for c-diff, he has to be in isolation (which is fine with me). But I thought I might be able to slip in and out without them knowing, but word has spread. :)
Now it's 10 and he's sleeping in his bed. He told me he was ready for bed. Asked for a kiss and drifted off watching Baby Einsteins (Thanks Donna Gower! They have been life savers.)
So until tomorrow. Bye from Beth, Kaley and Manny. Hoping for an uneventful night.