ArFID, Autism, Feeding Tube: Reality of Time Spent in a Hospital
July 3 - Grant is feeling better but not eating solids yet. Took our first hospital bath. Still quite unsure how long we will be here. Met with various and there might be some contradiction of care about what to do after he is healthy. There are no clear answers about any of this. And different specials will see this through different lenses."
Nov 29 -
He still doesn't eat today. We would end up in the hospital for 8 days and then another 2 or 3 in Aug.
July 4 -
It's hard to know what or how to share what I understand. They said Friday would be our projected last day and he would go home on a gf\cf formula with his ng feeding tube ( nose). Tomorrow he will see an ot and slp for issues. I think this is exactly what I was trying to avoid and here we are. No idea who I can find to help us getting him eating typically again. He is still throwing away good food, flipping it over and refusing it despite asking for food all day. I am still concerned about things like this and there are no clear answers about who on earth really knows how to help us. So Kennedy Krieger in Baltimore still feels like the next best step unless someone finds the answer locally. I am actively pulling things together for kk to get him out there. His weight is up one pound. According to their scales, he did hit that scary 52 pounds we were desperately trying to avoid. Anyway, he is doing great wearing feeding tube on his face with no issues. He is looking better and getting the calories he needs. I'll update again tomorrow. Happy to have company if you want to visit especially now that Scott has to work this week.
Nov 29 -
Even KKI is not guaranteeing help with this feeding disorder. They will help us with behaviors. I still wonder if his eating issues are another manifestation of his complex behaviors. Of course, that could be simplifing or underestimating a serious anxiety issue or some sort of food trama he might have experienced. The OT and SLP were not helpful. Nothing was all that helpful in the end except the feeding tube which he would later have surgically placed in Aug. I don't mean to underestimate this amazing medical device. I can even admit that on some level, life is much easier when you don't have to meal plan for a child who won't eat what you are making (EVER). He is at his highest weight today and we are very grateful for this. On the other hand, to have no ideas on how to get him to eat again isn't a picnic either.
July 5
Feeding tube fell out and it went back in without sedation. Proud of my lil man. He is really starting to hate it here, but this trip isn't over yet.
Nov 29 -
This was a sugar coated version of my truth. Grant sneezzed about 50 times in a row. Snot started rolling out of his face as I was consoling him in the hosptiial hallway. He was getting agitated. I never seen anyone sneeze like this. Over and over, and then clear mucus drained rapidly from his nose. A resident happened to be walking by and seemed to be just taking it all in like me. And then, there it was. The end of the NG feeding tube. You know, the part that should be draining directly into his stomach. Just feel right out. The reality hit me. Oh gawd, we have to put this thing back in :(
But, we didn't sedate him. They sprayed something up his nose to desentize just that area. I left the room. Dad held him. Typically an adult will have to help swallow one of these things down. According to things I have read online, it's HORRIBLE. He did it really well. He never had that problem again.
When I say, above, that he is starting to hate the hospital....well, that's a short and sweet version. In real life, he is having massive tantrums. He is hard to entertain. He watches his Ipad well for periods, but then freaks out. The nurses bring in those gym mats for when he throws himself on the floor. We are dragging the damn pump with formula around on an IV pole as he tangles himself up and beats the shit out of me and himself. He gets more agitated with each day. By the end of our trip, I can't count how many times he has attempted to rip my hair out and choke me. He starts clearing tables off with one swoop. He even starts telling us "home" and "mommy's car". He doesn't understand why we are in this hospital and he is communicating loud and clear that it's time to go. But, he can't go until they know that his body isn't going to shut down. This is no joke. It is boring and stressful for all of us. We have 3+ tv monitors. The most amazing hospital room I have ever seen and it's not enough. It's not home. He starts pee'ing right on the floor. Behaviors got pretty extreme in that room.
July 6 -
Grant really liked this giant hamster person today. Overall, rough day. Met with LOTS of people to figure out the next steps. We are getting closer to figuring out his next steps. This might be hard year, but maybe worth it all in the end.
Nov 29 -
I can't begin to tell you how busy I was that week in the hospital. I had non-stop "appointments". I would have talked to every single person in that hospital, if they would let me. I told deep details in hopes that one of these people were going to connect me with someone else that would help. I didn't realize then, but I was completely wasting my time and energy. I was so fucking busy I could hardly spend time with Grant. People would come to visit that I would hardly say hello too. I was getting some of the worst sleep in my life and nearly zero time alone. I would keep it all together to share the story and then crab at my husband and he would crab back at me. We were miserable. We demanded help. We told them this g-tube isn't enough. It doesn't solve the problem. They appeared to understand. They said the right things. They gave us their time and energy, but other than the feeding tube...we got no more answers than we had before we entered the ER that one afternoon. In hindsight, I should have told them all to go away. I should have said we were fine. In fact, I remember at the beginning of the week they told us how they would help. By the time we left, they asked me what I was going to do. Like literally, like - what will you do? Because they had no idea.
