Keira Got a G-tube For Her 1st Birthday.

She turned 1 on the 19th and had the surgery the next day. Isn't that what every little baby wishes for? ;)   Well, her parents did because she had not gained weight in 6 months and was slowly falling off the charts in weight. She was in danger of aspirating on her food/formula and was almost always having seizures while eating. She would eat just enough to keep her body satisfied. The minute she had enough she refused to eat. This was all documented on the Video EEG done at  Children's Hospital Boston. We were fortunate enough to have had the surgery moved and done even sooner in Maine. He did a Mitochondrial biopsy at the same time. Now, we are trying to get 960 calories a day into her body to plump her up. This will be done with a continuous 24 hour feed going into her stomach.  They say it won't be like this forever and we can work up to bolusing meals or just doing the continuous feeds at night, but for now, she has to have a cute little back pack follow her around.  She does not have the strength yet to actually wear the backpack, but hopefully when she is fully recovered she will.  If not, I will be following her around with the bag while she is awake. I also imagine her dragging it when I am not looking.

Her recovery in the hospital was uneventful and the Doctors commented to her frequently, "Don't you know you just had major surgery?" :)   She did have her painful moments that I had to rock her through, but I think the worst part for her was not being able to get on the floor and play. The feeding tube is long and sticks out of her stomach at this point. (for the g-tube unsavy people like me) I had no idea what it would look like, but for now we plug the feeding bag (that sort of sounds like she's a horse lol) into a tube that come about 3 feet out of her body. We also give her the medicine that way through a port. On Wednesday the big reveal happens. We still do not know what it looks like under her bandages.  She smells like Vanilla Pediasure because we can't give her a bath.

Once we got home we did have to troubleshoot medication and she did throw up quite a bit the first night.  They were giving us Depakene in the hospital, which dissolved well in water, but Depakote does not.  So we tried to feed her the Depakote sprinkles and it set off a reaction of throwing up 4 times, with the last being at 5am.  I crushed up her Depakote as well as I could with a herb crushing bowl and gave her some (not quite sure how much though) through the medicine port.  If we could not get the medicine in we would have to bring her to the ER and THAT was not happening!! (unless I think I am dying I seriously will not go there) In the meantime, the Neurologist on call called in Depakene in liquid form for her to take from now on. It's not exactly "the same", but it is controlling her seizures along with the Zonisamide.  She threw up yesterday when an unnamed person (not me) carried her up to her room by her stomach.  We are slowly titrating her up to the 40 calories per hour that they want her to be on so she does not throw up. Once she is tolerating that we will do little bites of food for taste. Little bites do not cause seizures and we want those taste buds to develop.

Here are some pictures of pre-surgery, post-op and recovery.  We barely have to give her Tylenol now.  She never cries and does not seem to be in pain.  She does get tired quickly, but we are 4 days out and I expect that to get better.

Pre-surgery on Wednesday with Nanie

 Post-Op

Starting to take off her No-No in recovery

 Playing in her hospital room a few hours after surgery

 She finally crashed

But woke up and found a cord to play with

 Puffy face the next morning.(Thursday) Apparently, it is from all the fluid they give them in surgery.

 Taking a nap with the G-tube finally hooked up on Friday

Finally at home again on Friday, sleeping in her car seat. Must have felt comfy in there. It was her first good nap in a while.  She still has 2 inches and 14 pounds before she outgrows it. :)

 At home the next day playing. Do you see the tube taped to her back so she can't get to it? :)

The tube goes all the way to this cute little back pack that has the pump and the bag with the Pediasure in it. The pump only lasts 4 hours without charging it.

 Tube to back pack picture

 Playing with a cord that is not a feeding tube to give us a break from telling her not to touch the other one. Hey, you have to pick and choose your battles. :)

 Just Playing

 Keira this morning. (Sunday Oct 24th)

playing with her favorite toy. Our Sweet Angel.