We are officially a tubie family. The last week has been pretty difficult, but I am so proud of Rachel and how well she has done with the adjustment. I was so worried about how she was going to react, and she has done much better than I expected. We had to be at the hospital by about 6am the day of the surgery. She was all smiles when we got to the hospital, so of course I felt bad because I'm sure she had no idea what she was about to go through.
Here's my smiley sweetie waiting in the kid's playroom at the hospital before her surgery.
For kids Rachel's age, they don't start an IV until they are in the operating room. They usually give an oral medication to make the kids loopy while they wheel them away. An oral medication isn't an option for us since she would spit it out and throw up everywhere. They decided it would be best to wheel her back and use the oxygen mask to knock her out. She was fine while being wheeled away. I felt awful though. I knew she'd freak out for at least a minute when she realized she wasn't in the room with me anymore and they were putting something on her face. I was told that she'd be asleep within 10 seconds once the mask was on her and then wouldn't remember any of it. That was slightly comforting.
The procedure took about an hour. We were brought back to her side quickly since she tends to wake up from surgery a little sooner than what is usual. Her experience this time was much better than the last time she had surgery. She woke up just as we were walking up to her bed. She let out some wimpers, but was comforted by my voice. She didn't like the IV on her hand and wanted it off but and then she kept grabbing her tummy and wanted her tube off too. It took us at least 15 minutes to get her to accept that we couldn't take these things out. I was really proud of her though. She was certainly a trooper. I think it helped that they had her on morphine.
After about an hour in the recovery room, we got moved over to the children's hospital, which is connected to the main hospital. The nurse that was wheeling her to her room told her to say, "beep beep coming through" to anyone we passed in the halls. Rachel loved that and was super cute saying it to everyone. The rooms there are really nice and everyone gets their own room, so we were thankful for the quiet privacy. There was even a pull out chair that I slept in that night.
She stayed awake for the whole day after the surgery, which really surprised me. We even had to give her morphine for pain. She was pretty loopy and we watched her favorite movie, "Milo and Otis" probably 4 times until she finally passed out around 6:30. Her OT made her a "social story" about getting a g-tube. That little book was such a blessing for us to have in the hospital. It really comforted her and helped her understand why she got a feeding tube and why she was feeling pretty icky that night.
The thing about spending the night in the hospital though.... is that they don't really let you sleep much. Well, Rach slept pretty good for most of the night. She was funny when the nurses would come in to take her vitals and adjust the ml's per hour on her feeding pump. She'd say, "yeave me ayone. I syeeping. You go away now, it's bedtime." Or she'd say, "you need to get outta here, I syeeping." I felt the same way and wanted those nurses to let us sleep for more than one hour at a time. Plus, those darn monitor alarms for the pump and her IV were going off at least once per hour. I was like a zombie the next morning, but Rachel was a happy camper.
The nurse in pre-op gave Rach a teddy bear and I had bought her a new Doc McStuffins toy set to play with while in bed. She was attached to the bear and the toys during her stay.
Bob and I were taught how to take care of her feeding tube, supplies, and how to use the feeding pump before we were sent home that afternoon. Rachel was an absolute precious little angel in the hospital until the last hour. She decided she wanted to go home...and oh boy... we knew she was feeling a little better and was ready to get outta there. So it was a little hectic as we were leaving but I was glad we were going home.
We were sent home with a Kangaroo Joey feeding pump and all the supplies needed to plug her in. We're starting with night feeds, so she is slowly fed two cans of pediasure formula. It takes about 7 hours at 65 mls per hour. Oh the good news.... our insurance is covering 100% of the feeding pump, tube supplies, and formula costs!
The first few days home were pretty awful. She was in a lot of pain and cleaning around the button was so hard for both of us. She also had a decompression tube for the first 24 hours. So that tube and a drainage cup was taped to her tummy and she wasn't happy about it. We had a couple of times where the drainage cup would overflow. The most traumatic part for her was when she got up to walk for the first time about 48 hours after her surgery. She walked from the front of the house to the back bedrooms and then her tummy just started draining through the decompression tube and then overflowing the drainage cup. It was like she was throwing up, but it was coming out of her stomach alien style. It got all over her, all over the floor, and really freaked her out. It freaked me out too, and I didn't know whether or not to hook her up to the feeding pump that night. I called the advice line and they paged our GI doctor. She called us back and said to just stop using the decompression tube, do the night feed, then close the button. She got the Bard Button Gastrostomy tube, so we just close the button when she is not being fed.
So after that first 48 hours, things settled down a little bit. I'm not thrilled that her feeding pump alarm goes off every night between 1-2am. I have to get up and flush the tube, give her her medications in the tube, flush it with water again and then disconnect her. She wakes up and screams and kicks me when I disconnect her. I know it hurt her the first several nights, but now I think she just kicks the crap out of me because she doesn't want to be woken up. It's a good thing... it means my baby is feeling better when she starts acting like a stinker.
She's handling the tube pretty well. She is more cautious about how she plays. I think that's a combination of still feeling sore and feeling unsure about this new thing attached to her tummy. She was finally able to take a bath tonight and she was so afraid of getting her "tubie" wet. I had to talk her into it and tell her it was okay.
The best part about the last week is that I'm no longer stressing over how many calories she's taking in. I'm not stressing over the fact that she didn't get her iron supplement since I put it directly into the tube now. It feels so good to know that she is getting good nutrients. And TMI warning... she is finally pooping normally. She previously had extreme constipation, pain, and her life sometimes revolved around "getting a poop out." She doesn't cry every time she poops anymore, and for her, that is a big deal.
It's been a tough week, but we've survived. I have had a lot of emotional ups and downs over this. I've hated the tube. I've loved it. I've wished we never got it. Then I'm glad we have it. Mommy guilt just never stops. I do feel bad that we made the decision to put her through this. I know it was the right choice though. She is finally getting much needed real nutrition and that is a blessing!
