Sunday, May 29, 2011

Sadie's hospital admission

A week ago today, we got called and told that there was an open bed at Phoenix Children's Hospital (PCH) for Sadie to come get her feeding tube. (I know, I should have updated before now, but it's been a CRAZY week!!) It's just an NG tube (meaning it goes in her nose down into her tummy), and putting it in literally takes 90 seconds, and we could even do it at home. But when first getting one, PCH likes to admit the child for 2-3 days in order to make sure they get on a good feeding plan, that parents are comfortable with re-insertion and care, and so any additional tests can be done. For example, Sadie was going to have X-rays taken to watch food travel into her tummy to make sure there was nothing blocking it, and another X-ray taken to watch her swallow to see if she is aspirating liquid. They can schedule these as outpatient procedures, but the dr. told us that if we're there anyway, it's easier to just do them.

Last Sunday I did a crazy amount of stuff around the house before leaving for the hospital. I made blackberry jam, paid bills, made 2 loaves of bread, and wrote a letter to the insurance company about Sadie's chillout chair (that's another story for another time), and we got to the hospital around 3:30 in the afternoon. We were told to go through the emergency room, because it was a Sunday, but just tell them we were a direct admit and already were scheduled. We did that and got to our room without much hassle.

Immediate we were seen by doctors and nurses and admit people asking us a million questions, that I tried my best to answer, even though Sadie was screaming. I was by myself with her because Brian knew he'd have to bring us dinner, so instead of coming and going and coming and going, he just stayed home and came once at dinner time. The doctor who saw us didn't really understand why we were there, and told me so. I felt foolish after talking to him and I started second guessing myself. Should we have come? Is this the right thing to do? Is this going to make our lives much more complicated? Are we even supposed to be here? But we finally got it straightened out, and Sadie finally fell asleep, and they finally brought us a bed we could both sleep in together (instead of a crib), and it got better. A little.

The worst part of the whole thing was that we had a roommate. Those rooms are so small as it is, but then they stick two patients in there, and it's miserable. And Sadie tends to scream/cry for the majority of the day, so I felt like I needed to apologize in advance. The other patient was also a baby, but she was only 8 mos old. Her name was Rhyan and she also was having trouble eating and gaining weight. She was on the same medications as Sadie, and got her tube inserted that afternoon soon after we got there. The only difference was that Rhyan was completely normal in every other way. They had been going through the whole ordeal while in the hospital for the last week, while we'd been doing most of it at home over the last couple of months. Rhyan's mom was too cheery and too nice and wanted to give me advice and tell me about her experience more than I wanted. It's hard to be in the hospital, and my baby doesn't sleep enough as it is. So, as you can imagine, I turn into mommy-grumpy-pants and I don't want to be friends with anyone, which is the complete opposite of Rhyan's mom.

Sadie got her tube about 6:30 that evening, and that night she started her first night feed. It was like we had to learn a new language. We do everything in ounces at home, but at the hospital they do it in mLs. So, we had to learn that 30mLs is an ounce, and there's a lot of math involved as well in setting up the machine that delivers her feed because we have to figure out how long we want it to take and multiple and divide by the amount we're giving her (in mLs) and then adjust the settings accordingly. Who says you don't use math in real life?

That first night was a little tough, more on me than Sadie. We have a policy at home that once Sadie's asleep you DON'T wake her up. She doesn't get a diaper change in the middle of the night or anything. I tried to explain that to the nurses, but they insisted on coming in every 4 hours to take her temperature. Sadie didn't fall asleep until 11:30, then her machine kept having an error and beeping, then the lady would come in and play with stuff or take her temperature, and I was so afraid of her waking up...but she never did. At 5:30, though, there was light coming in through the window, so when the nurse lifted the blanket off her head to check her temperature, Sadie saw the light and thought it was time to wake up. I had had a HORRIBLE night's sleep because of all the beeping and worrying she was going to wake up everytime she stirred, so I was not ready to be up at 5:30. It took me a half hour to get her back to sleep, and I was hoping I'd get at least another hour of sleep out of it. But the nurse came in at 6:15ish and told me that when babies are admitted for poor weight gain, or failure to thrive (I hate that label) that they're supposed to be weighed every morning at 6:00am on the same scale. I told her if they want her to thrive, they need to let her sleep and if we wake her up right now, strip her down, and stick her on a scale, there is no way she's going to go back to sleep. And I probably wasn't real nice about it, so she backed off. When Sadie woke up around 7:30, they weighed her then and it was fine.

Most of that day we sat around waiting. Sadie's swallow study was scheduled for 3:00, and I wasn't allowed to give her food after noon. One of my worries was that if she had been "eating" all night, she wouldn't be hungry in the morning, and breakfast was always the one meal I could count on her eating plenty. But she ate breakfast okay and that made me feel better. I didn't think it was a good idea to starve her after noon, but I was told I didn't have a choice. They needed her tummy to empty to do the upper G.I. study (where they watched her eat and it go down into her stomach). My dad came to visit us for a few hours, and actually played with Sadie for a little while so I could sleep for a half hour or so. I was so tired I had a headache...which wasn't helping my grumpiness.

Luckily, they came to get us for the tests at 2:15. And Sadie loved the stroller ride through the hospital! She actually stopped crying for a little bit. They did the first test and saw that everything was going down just fine. But she was so upset about us holding her down and squirting stuff down her throat that the speech therapist and I had to blanket swing her to get her calmed down for the swallow test. After doing that, she was eager to swallow anything we put in her mouth, which was encouraging, because I wasn't sure if she understood hunger and associated it with eating/drinking. But she obviously does. They had her swallow different consistencies, starting with thin (like water), then nectar consistency (think whole milk), and finally honey (more like snot). Then they had me feed her what they called "double honey" on a spoon. We learned that she aspirates thin consistency and nectar consistency (this means some of the liquid is going into her airway instead of it all going down to her tummy), and she might aspirate honey consistency if she is given too much and she gets tired (just like when we do something hard and our muscles get tired, we don't do it as well after a while, that's how it is for Sadie swallowing, after a while her muscles get tired and she doesn't swallow as well). She made it very clear that we were not to give Sadie anything thinner than honey consistency. I asked the speech therapist why this was such a big deal since Sadie had never had fluid in her lungs or pneumonia or anything. She told me that Sadie's lungs were probably absorbing the trace amounts that she was aspirating, but over time this could cause her to develop lung disease. (yikes) After that we went back to our room and hooked Sadie up to the feeding machine and within 10 minutes she was much calmer. I even got her to fall asleep...for like 5 minutes until baby Rhyan started screaming (she was also teething).

That night Brian came and stayed with Sadie. I had an all day inservice for work and needed to go home, shower, and have a good night's sleep. He said she never fell asleep all night. 1. He's not Mommy, 2. she was in a strange place. The next day, he pushed the hospital to let them go home. Sadie needed to sleep, we needed to sleep, it was important that we all got back to normal. I was happy to hear when I was done for the day that I needed to go home, not back to the hospital.

Brian met with the speech therapist and was given a feeding plan for Sadie. We are only allowed to give her an ounce of food or drink (thickened to honey consistency) at a time to help her practice swallowing, but not get her too tired so that she ends up aspirating. The rest of her nutrition comes through the tube over the course of the day, then a slow drip all night. It kind of feels like we're going backward, but I understand that it's important to enforce good eating where everything works together and goes where it's supposed to. And hopefully as she gets stronger and more coordinated, she'll be able to take more at one time. The prediction is that this might take 2-3 years...which would lead us to a more permanent G-tube in her tummy sometime soon.

That night after they got home, our house was full of crap. Brian brought home a bag of stuff that included the pump, extra bags and formula, tubes and random stuff that comes with all that. Then we had 2 deliveries to our door of more stuff. We have over 300 packets of thickener, we have 4 cases of pediasure, we got an ENTIRE box of feeding bags that attach to the pump. We felt like Sadie all of the sudden became high maintenance... because she really did.

That night Sadie slept 13.5 hours. I had to wake her to go to therapy in the morning, otherwise who knows how long she would have slept. She was so tired. The nice thing about the tube is that she didn't even have to wake up to get medicine and to eat...although I didn't really realize that that first morning. We let her sleep as long as she needed to the next couple of nights to catch her up from the hospital, and to catch ourselves up as well. She seems to not be bothered by the tube. We've already had to re-insert it twice (once she threw it up, once it got clogged). She seems to be calmer throughout the day, and we now know that when she's having trouble sleeping it's definitely because her teeth hurt (another molar came through last night). I'm hoping that this will finally be "the thing" that she needs to be happy. It's possible that it hurt to drink and that's why she didn't want to do it. Even though it feels a little like we've taken a step backward, I hope that we are able at this point to start building a strong foundation physically and emotionally for eating so that eventually the tube is completely unnecessary. But for now, we will see it as a blessing and not a hindrance, because it is helping Sadie and all we want is what's best for her.

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