Although, I suppose the title “This changes everything” is also highly appropriate. We are locked and loaded for tomorrow. All that is left is going into Alyssa’s room in about an hour and giving her her seizure meds (I bumped them back so that we can give her her AM dose at noon tomorrow after things settle down some). I have spent the better part of the last few days on the phone. Some of it maddening but most of it calming. I am so grateful for the people we have been blessed to walk through day to day life with. I have a lot on my mind but not a lot of time to sit here and write so I’m going to try to hit the vital stuff and leave the rest for when I have time over the weekend.
They decided today that instead of sending her home right after they put in the tube that they will keep her until Sunday. I am actually pretty grateful for this. I wanted them to keep her for a day and they were confident we’d be OK going home. However, the doctor decided with it being the weekend it would just make things a ton easier on all of us if we knew we had help when needed. Her pain will be properly managed. We will know that the tube is working properly. We will have extra hands and have all our bases covered. Furthermore, I’ll admit I’m a bit excited because every other time Alyssa was in the hospital she had pneumonia and couldn’t play with the other kids in the playroom. This time she’ll be able to have a blast. Sure, it will be a super spendy couple days, but overall I’m just a bit more relaxed about the whole situation.
I went back and forth with the people who will be delivering her pump, feeding bags, formula, etc for a few hours today. We were trying to get everything lined up so that we knew how to use the pump when we brought it home. Trying to figure out how much formula has to be ordered monthly and establish what our copay is looking like. The irony? Since the formula is now considered a medical treatment and not food since it goes in the tube… well… insurance pays for 80% of it. ha! So, even with all of the other incidentals that come along with tube feeding we will essentially not be altering her food budget. Thank you loop holes! We wound up deciding that they will deliver the stuff to the hospital tomorrow so that they can show us how to use it (even though we cant use it IN the hospital) and that way we won’t come home Sunday and not know what is going on. Sweet.
My roommate is awesome. Seriously. As soon as things calm down I need to go back and fill in. However, I will say this. She’s in our lives for so many wonderful reasons. I adore her. At any rate, this evening she switched out her daughter’s g-tube and I got to watch. What.A.Relief. Totally doable. Essentially the “button” is on the outside and then there is a balloon that is filled with water that holds it in place on the inside. So, you drain the balloon. Slide the old one out. Slide the new one in. Fill the balloon. Voila! Shiny new button. Sure, a bit of tummy acid leaks out, but nothing terrifying!
A few questions that I should answer here so that all the answers are here for everyone because a lot of people are wondering a lot of the same things! Can she still eat by mouth? Will she be able to take the tube out if she gets to where she is eating enough by mouth? The answer to both? YES! The great thing is it doesn’t change anything about her mouth. What it DOES change is that she doesn’t HAVE to eat by mouth! My true true TRUE hope is that eating can be fun! She will be getting all of her calories that she needs and the other stuff will just be a bonus! A couple more questions? Is it painful long term? Will it be catastrophic if she rips it out? Nope and no! It heals much like a piercing so that it can move around but it is healed in the area. The only thing that would make it bad if she pulls it out is if we don’t get one in quick enough. It only takes a matter of 4 to 6 hours to fully close! (which is good at the end when you WANT it to close!) It is important if she does pull it out to get it replaced ASAP. Which leads to another question… what if you are watching her and she rips it out? Don’t panic 😉 If we are close, just put gauze over it and give me a call. If we are far away? The closest hospital can fix it all up! So, no panicking about sitting 😉 As if I’d let you off that easy. Ha.
So, it’s go time. Everything is in place. I am a bit excited at this point. Not that this is something I want, but that this is something I know needs to happen. My mother has a way with words that continually puts my mind at ease. When I told her it was the first time I couldn’t do something she said something to the effect of “It’s not that you can’t, if this was the only way to feed her, you’d keep doing it. It’s that you are saying you realize this is not the best possible option.” From that moment, I felt at peace with so much that had been overwhelming me. It’s true. pinning her down repeatedly during the day to get her to eat is not healthy for anyone. I am excited about the prospect of Neil coming home to his daughter smiling at the table playing with food instead of walking through the door to a frazzled family. It’s going to be a stressful few weeks as she heals, but I’m hoping in a month…. there will be many more smiles at the dinner table 🙂 .
Thank you so much to everyone who has held us up in this time. You will all never know how much your kind words mean to us. How much just knowing that someone outside of you is thinking fondly of your daughter in a time when what she truly needs is positivity. Well, you may never know how often it puts my mind and heart at ease. So, thank you for that 🙂 . I should be able to update from the hospital, but if not I will be sure to do so on Sunday!