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The big ol' G-tube surgery post (Tues 8-10-10)

This will probably be long & boring but if I don't write it down I'll forget. :) Tuesday morning (8-3) I turned off Raya's formula at 7am and turned off her fluids at 11 when she crawled too far away from the backpack and ripped the tube out of her nose. We got some last minute grocery shopping & cleaning done and then packed our bag & headed for the hospital. Then we turned around 3 miles down the road because I realized I had forgotten my pajama pants. Then we got back on the road. :) We stopped on the way & brought lunch to Donny at work:

We made it to the hospital at 1pm on the dot and checked in. They took us into the GI pre-op area and Raya got weighed & measured and put our stuff in our room. Raya got bored pretty quickly so I took her to the very well-stocked playroom. She was in heaven, especially because there were no big kids there to take away the cool toys she found. :) We ended up being in pre-op for a whole extra hour because apparently I was the only one that got the memo about having a different surgeon and he was busy so we had to wait for him.

When it was finally time to go, I had to get one last picture of her perfect belly before we let her get it pierced. :)

They let me carry her into the room and then I took her clothes with me and went to the waiting room. They're really smart there & they wait until the kid is already asleep before they put the IV in. The procedure didn't take very long. The put in her G tube and did some tissue biopsies to test for a few more things that could be causing the vomiting and then she went to recovery. Once she was starting to wake up, they let me come in and hold her.

We had to wait for a long time to go up to our room because they couldn't find a crib for her. They finally found one and got her up to her room around 6:15. We got settled in and then had a visit from Auntie Brooke, who was sweet enough to bring me some dinner & snacks.

Raya cracks me up in this picture. Her hand stayed like that for several hours. She was very groggy. :)

This picture was about 6 hours after surgery. She spiked a fever pretty much as soon as we got her up to her room and had a stuffy nose so they swabbed her to see if she had anything contagious like RSV, flu or pneumonia. Just when she thought she was done having things shoved up her nose. :) This picture was right before she got her next dose of morphine (hence the way that she's not moving) and right after we changed her decompression tube to one that the nurses liked. Apparently they didn't like the one the surgeon put in.

After they found out that she had a fever, they had to move her out of the room we were in because of the risk to the boy she was sharing with. He had already been there for a week and I chatted with his mom a few times over the week. They put us in with an 11 day old baby boy that also had a fever but had swabbed negative for the same things she was negative for.

We settled down for the night in our new room & then the surgeon came on rounds at 7:00 the next morning. I really appreciated that, ha ha. She woke up and was happy until she started trying to move. I reminded the nurse that she needed her pain meds and then she was comfortable but had that glazed look in her eyes the rest of the day:

Her heart rate was really high most of the time so they left the monitor on her toe, which was kind of annoying. When she'd start feeling good & move around a lot in the crib, it would throw off the sensor & make it look like her O2 sats were dropping way down & set off alarms.
Donny came over Wednesday afternoon and Raya was really happy to see him. She sat on his lap for a while & played with the toy they brought her from the playroom. (She was on isolation because of the fever so she couldn't go out of her room.)

After the nurse came & gave her another dose of morphine, she started being really funny. She got that glazed over look again and sat on Donny's lap just playing with his nose and squeezing his neck flesh. Her expression never changed the whole time. Her fever was on its way back up then too so she just wasn't feeling good.

By the evening she was feeling a lot better and was sitting up playing and her fever went down a little. We were ready for another good night's sleep but it wasn't to be. Someone had the brilliant idea to lay new linoleum flooring in the room next door all night long. They started at 10:30 that night. Then the baby in the room with us needed labs done so he was crying for a long time and they were in & out getting vitals on both babies all night. It wasn't the best night's sleep.

That night they also switched her from Pedialyte to formula. Her IV was questionable at that point too so the night nurse was afraid to give her morpine in it because she was afraid it would leak out and burn her, so she switched her to tylenol w/codeine through her G tube instead. I wasn't too happy about it because I knew once she had a few hours of formula she'd start throwing up again & would probably throw up the tylenol. Sure enough, they increased her to 70ml/hour (more than she was on before surgery) and she woke me up vomiting at 5:30 Thursday morning. After that they decided her IV needed to come out because it wasn't in good enough anyway:

She threw up again right after the nurse took her IV out and I knew we were in for a long day at that point. They turned her feeding pump back on at 70ml/hour and she threw up again 2.5 hours later right after she had gotten 2 of her meds. They were only giving her hydrocodone for pain at that point & she could only get it every 4 hours.
She woke up at 10:00 and didn't move a muscle or even smile. She just laid there shaking and clenching her fists. When I watched her heart rate go from the 130s to the 190s in about 5 minutes, I called the nurse and reminded her it was time for pain meds. Her temperature was back up to 101.5 too so they waited a little while for the pain meds to work before they started the feed.
They were feeding her really slowly all day, which wasn't totally necessary. If they would have listened to me... Anyway, all day long she pretty much looked like this:

She has her tongue out a lot of the time for reasons unknown, but it's usually still wet so when I realized that her tongue was completely dry and that her lips were cracked & bleeding, I told the nurse she was getting dehydrated. They watched her all day and I started to suspect that we wouldn't be going home that day after all. I was glad I had asked Donny to bring me a couple of extra shirts the day before and grateful for the junk food Brooke had brought me. :)
Bless her little heart, she just didn't feel good at all on Thursday. Her temperature was going up & down every hour and her heart rate was still in the 160s or 170s. She started falling asleep sitting up:

By evening, she was feeling pretty good and was even standing up:

But that didn't last long. We noticed that her G tube was leaking profusely that evening, she threw up an entire feed, and then her fever jumped back up to 101. As soon as she threw up, they decided they'd better put in another IV. Anyone who has ever had to start an IV or take blood from her has had a hard time getting a good vein, so it took about half an hour and was very traumatic for her. Not exactly pleasant for me either, but I have to say that I'm grateful for my farm upbringing because I'm pretty calloused to inflicting pain on innocent little creatures when it's necessary. If it's gotta be done, it's gotta be done.

Friday morning they gave her zofran to help keep her from throwing up and gave her a short break towards the end of her overnight feed. Because of how much her G tube was leaking, they had to send her down for a G tube study that afternoon to make sure that formula wasn't leaking into her abdominal cavity. Luckily it wasn't but it was definitely leaking back out around the outside of the tube. The surgeon told me that it was because the tubes only come in 2 sizes and the smallest size was still too big for her, so the only solution is to pack extra gauze under it to keep it tighter in her stomach. When it heals, we can switch to the other kind of tube that's adjustable.
They still couldn't isolate a cause for her elevated white cell counts & fevers so we were stuck on isolation. Bummer.

Friday afternoon her fever went down for a while and she had a nice nap with me:

Poor kid thought she was done with socks on her hands too. :) We didn't dare leave them off once the IV went back in her head though because it was such a difficult one to start & we didn't want to have to do it again. Donny came to visit again after work & brought me some delicious dinner.

He stayed until visiting hours were over and then she and I watched reruns of whatever was on TLC and HGTV until she fell asleep at 9:45. Unfortunately that only lasted for 15 minutes until the PCT came to get her vitals again. That's the most annoying thing about the hospital.

Saturday morning started out pretty much the same as the previous 2 days so I assumed we'd be staying another night or 2. They drew blood & got a urine sample so they could do more labs to try & pinpoint the cause of her elevated white cell counts & fever. It was pretty much 40 minutes of Raya screaming. Finally in the afternoon they came & said that so far the labs looked good and there wasn't really any reason to keep her there. She was happy:

And so was I:

We finally hit the road at 5:00 and headed home!


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