My Wish List

Wyatt had his first GI doctor appointment yesterday. I have to admit I wasn’t happy to go in the first place which probably had a lot to do with my urge to tell them off. After all, initially we were told that Wyatt doesn’t need a GI doctor because surgery put in the G-tube and they’d follow-up on that and the Pediatrician could take care of feeding adjustments. Well, that apparently was BS because both of them didn’t want to stick with those responsibilities. Therefore, a GI doctor had to be added to our list of specialists. So we got there 5 minutes before the appointment, had to wait 15 minutes in the waiting room despite my request to wait in a separate room due to Wyatt’s risk of illness and infection, this being flu season and all. When we finally got into the room, it took the nurse another 10 minutes to come in to do her vitals, weight, etc which of course made Wyatt turn blue. He’s 14lbs 4oz by the way. Then we again waited for another 10 minutes for the Dietician to do her thing. She ended up saying that while he’s proportionate to his height, she’d like to increase his feeds by a total of 90 extra mL a day. Yeah, that’s not happening. He’s already getting 900mL a day right now and he’s been gaining weight like crazy since he came home. He gained over 1 pound in 3 weeks, then another 1 pound in the next 2 weeks. So let’s not jump the gun here and put more pressure on Mommy with pumping. “Oh, you can just supplement with formula”. No thanks. Yes, he needs to keep gaining weight but let’s not turn him into a sumo wrestler here. If he slows down on gaining weight then I’ll increase his feeds. We have plenty of appointments to go to where they check his weight to keep a good eye on it. Anyway, then after another 15 minutes of waiting the GI doctor finally comes in. Heavy accent, hard to understand which after waiting for that long only rubbed me the wrong way even more. So he proceeds to tell us that we really need to switch Wyatt’s current G-tube to a button within the next month. Wait a minute, surgery told us originally that switching him to a button was optional and they didn’t even want to do that switch in infants. Now we have the GI doctor tell us the opposite. Then he proceeds to say that it is an outpatient procedure requiring sedation. I’m sure the look on my face at that point was not pretty because all along we were told, it’s a simply procedure of just pulling the tube out and putting the button in, it could even be done in office. What the hell is going on? I didn’t say much at that point but I was starting to boil inside. How is anyone supposed to trust any doctor when they all just contradict each other? And then they explained that even when the child eats by mouth only, they like to leave the button in for at least the first 12 months of life just in case. The dietician proceed to tell us that Wyatt had a Nissen done so if he were to get sick, we could use the button to vent him since he can’t vomit and such. Now, I’m really pissed off. When we decided on the Nissen, we were told (and that’s what I read in research as well ) that while it’s more difficult, he would still be able to vomit. I know this sounds gross but it’s an important bodily function. Now the dietician is contradicting that. Apparently it comes back down to us doing our own research and making a decision from there. I’m so tired of this mess. My initial instinct is telling me, no way am I putting him through this so called “simple” procedure. CCHS kids can’t take certain anaesthesia medication because of serious risk factors and it takes them a longer time to recover from any procedure so it’s not a “simple” procedure. Not to mention the risk of infection going to an outpatient center and into surgery. If he doesn’t get the procedure done and the G-tube were to come out, a new one (we have a spare) would have to be placed in the ER vs if the button were to come out, it can be replaced at home. It’s a no win situation either way... That appointment put me over the edge yesterday. The stress is just overwhelming. Me and my husband even got into a fight over everything from nursing to insurance to the Chicago visit to the GI issue. I told him I’m done, I don’t want to take Wyatt to any more appointments or put him through any more tests or procedures. He replied by saying that I can’t be done. That’s the wrong thing to say to me when I’m pissed off. Don’t tell me that I can’t do something because then I will just do it to prove you wrong. Needless to say, I was in a really bad mood. What it came down to in the end is that my husband is working really hard to try to make ends meet and it’s been slow at his work, and my responsibility is to keep things running with Wyatt’s care. We both have our own serious responsibilities to try to keep our family afloat through all this mess but essentially we have been living in separate worlds lately. I can’t go back to work any time soon yet so that’s not helping financially. Looking at the trend in our claims, Wyatt will max out his private insurance by the time he’s one year old and then we’ll be down to only depending on Medicaid. I don’t have to say how crappy that will be. We want to take Wyatt to Chicago to see the specialist but we can’t do that until next year because of paperwork issue and because my husband has no vacation time left. By next year though we have to start over paying our maximum out of pocket expense for insurance to cover the 5 day ICU required for the specialist and that’s just not feasible by February, plus the travel expenses. Not to mention, we don’t know how Wyatt can handle the cold Chicago weather in February and the other kids can’t come with us at that time due to school, so we have to find someone to watch them and take them to school for that week. It’s just not looking good for that trip. I’m trying to see if we can postpone it to summer break instead. By then Wyatt will be due for all those tests again anyway and we may be able to take the whole family and turn it into a little vacation to see some family up there. I don’t know if it’s going to work though simply postponing the appointment because appointments with that specialist are hard to come by. I’m waiting to hear back from their office. I don’t know what we’ll end up doing. Nursing is a continuos controversial issue at our house, too. The official date to switch companies if everything runs smoothly is November 11th. I put the request in to have coverage for afternoons/evenings since that is when I could use the help. The nursing company said we’ll definitely be approved for 8 hours of coverage for sleep. We’re not so sure that’s what we want though. Wyatt sleeps through the night mostly and we’re planning on bringing him into our room upstairs at night. So I don’t know how we can work that out. The nursing company is trying to get 16 hours approved, 8 hours for night probably 11p-7a and 8 hours daytime. If we decline nights, I’m sure we’ll be cut down to 8hours total because I definitely don’t want 16hours covered during the day. I actually like having time to myself with Wyatt and even when all the kids are home, we can manage. We had to manage without nurses for a while now that I’m not sure I can handle them just coming back. It’s really hard having strangers come into your home, take care of your son and we’re supposed to just live our “normal” lives. What if we one day don’t feel like being home when the nurse is scheduled to arrive or if we want to go on a spontaneous day trip? It’s so confusing and so hard to adjust to but we’ll see how it goes with the new nursing company... I’m tired, and not physically like everyone assumes. I’m mentally tired. I’m tired of other people telling me what I need or what Wyatt needs. Wyatt and I need to be left alone, plain and simple. I need doctors to get their facts straight so I don’t have to do all the leg work and research to determine what treatment plan my son should follow. I need them to just let Wyatt be a baby instead of treating him like he’s sick. He’s not sick, he just needs ventilator support. He doesn’t need some fancy titled doctor to tell us when he should sleep, eat and poop. Wyatt is perfectly capable of doing that on his own. And I don’t need to be reminded by all the specialists that Wyatt is special. Yes, he is special but not because of his clinical diagnosis but because of who he is as a person. I don’t need people telling me that I need help taking care of Wyatt. I got it covered. He’s not any more trouble than any other baby. I need people to stop telling me that I need to just get some sleep like it’s some miracle cure. I don’t need sleep, I actually get just as much sleep as I did when my other kids were babies and definitely more than when I was pregnant. I can manage. And I don’t need a day to get out of the house and get away either. I don’t even like being by myself. Here is what I really need and want: I need Wyatt to be left alone so he can be a baby and explore the world on his own terms. I want an insane grocery trip with the whole family. I want and need to know that we can all fit in the car together even with Wyatt’s gear and that we can do normal annoying stuff together. I want to be involved in my older kids school stuff again. I want to be able to help them with homework even if they drive me crazy and argue with me the whole time. I want to have a sit down family dinner again on a daily basis and talk about our one good thing of the day. I want to do a whole family trip to the beach. The beach is my place to relax but I can’t do that by myself. I want to show Wyatt the beach and see if he likes it as much as I do. I want to see him watch the boys play in amazement. I want my family to get off their behinds when we’re home, turn the damn depressing TV off and go out and do stuff together instead of taking turns taking care of Wyatt. He doesn’t require taking turns, he just wants to be involved in everything. I want our one day a week family trip to Grandma and Grandpa’s house back. So what if it takes us an hour to load up for the 3 mile drive. The older kids go over all the time but they don’t even give me my hugs and kisses good-bye anymore. They are all ready and excited to go places with everyone but the one day I actually wanted to spend time with them and simply go to the beach, they whined and complained the whole time. I guess spending time with Mommy on the beach just wasn’t fancy enough. I want to stay home in February and spend time with my sister and mom who are planning to come visit. I don’t want them to just come and watch the kids for us so we can take Wyatt to the specialist in Chicago. What good is all the research and hope for future medical advances if we can’t enjoy life now? I want to be able to look forward to my sister and mom coming to visit since I only see them every few years. I want to have a night-time bed routine with all the kids and then have quality time with my husband where we don’t just talk about Wyatt’s care or financial strains or take shifts sleeping or silently watch TV next to each other... I don’t need help with Wyatt or sleep or a break to myself. I need my family back!!! I need to be able to live life with my family again!!!