What A Day! I Could Just Scream!
Well A did good overnight considering his tube was hanging in there by a thread. He was up at about 7:30am and Joyce left at 8am. He ended up going back to sleep at about 8:30am until just after 10am. I had talked to his GI doctor this morning and she told me that she would call me when she got into work and let me know what time to bring A in to have his tube changed. So around 9am she calls and tells me that she talked to radiology and they said that it could be today or tomorrow that they would do it. She said she stressed how important it is for him because that is his only means of feeding and that it should be done today.
Anyhow I was a little frustrated when getting off of the phone with her. I just cannot believe how the hospital doesn’t see putting a tube in to be an emergency. Well to my surprise they called and after a bit of a fuss they said to have him there for 12pm sharp. So I pack A up and head out to Mac. I am there about 11:45 so as not to be late and guess what time they call us in?!? 1:15pm!! Does that seem like 12pm sharp? Nope doesn’t to me either!
So finally we get into the room and the doctor decides that he is going to put a size 8.5 tube in and A has always had a 5. So almost double. After discussing it with him a little bit I agree to do it. So in goes the new tube. I can tell by the way he is talking to the nurse and looking at the screen that something isn’t right. So I lean over and peek. After seeing this done plenty of times I can tell exactly what I am looking at. I say that there looks to be some of the dye going into the stomach and that A can’t have anything in his stomach. And besides if the tube is turned up to face the stomach it is kind of pointless anyways. So after a bit of manipulating of the tube he says it is fine. Clean up and off we go.
I go upstairs to see his GI doctor who is absolutely wonderful by the way! I thought that A’s tube was infected so she wanted to peak at it, but said that it was okay. So after talking to her a bit about things A and I headed up to the NICU. And yay to our surprise Danielle was on! I got two pictures of her and Julie with A. Julie was A’s OT in the NICU and did great with him.
So after some visiting there I went to see A’s favorite neonatologist but he wasn’t in his office so I just left to go and start A’s feed up. After doing my normal routine with the feed bag and pump I start it up. And I hear this huge POP and see that the feeding tube has come right out of his extension tube. To make things worse formula is coming out of it like crazy! So I clamp his extension and then checked it again. Opened it up and more formula starts coming out along with bile. I freaked!
So back upstairs I go to GI. They send me to radiology AGAIN!! Ahhh by this point it is 4pm! I am sitting in the waiting area with A and hear a nurse say “oh here they are” and I looked up. And to my shock it was the same nurse as a time before when A had his tube changed. She was an absolute ***** last time to me (my dad can vouch this) and made me feel like crap! Right away she is questioning me and telling me that I am not doing this/that right! I told her after about one minute of her rambling that I didn’t want to deal with her so she could send someone else. The other nurse was wonderful.
Back into the radiology room we go. And in walks the ***** with the doctor. He checks the tube and says that it is fine. Then of course she starts telling me that I need to get someone to show me how to use the pump and blah blah blah. Give me a break!!! A has been on the feeding pump since coming home, I think I know how to use it! So then she wants me to start the feed so they can see what happens. So I connect it and start it. She comes over, points to his pump and says, “you aren’t even running it, it’s on hold!” Duh!!! It said hold because IT WAS running and if you WANT to hold it THEN you push it! So basically, it just proved to me that this was yet ANOTHER thing she didn’t know a thing about. If you don’t know something then don’t pretend you do! I thought I was going to cry, and it really wasn’t fair that she was treating me like a bag of **** when I do everything I can for this child.
ANYWAYS!!!!!!! Enough of that. I went to grandma and grandpas after the appointment and we ordered pizza. I picked up daddy and then we ate dinner and came home. Joyce is here again tonight. I am starting to get a cold yet again. So off to bed I go…
Just a few pictures of A tonight at grandma and grandpa’s. He loves this little toy and you can see him really trying. And yes he is holding it!!!