*no promises that this all flows. It's all still a strange clouded nightmare in my head"
As I posted before Tuesday was Eli's swallow study. The lady in charge was in a bad mood and screwed up the test. I was torn between what to do. Part of me said she's the medical professional and ultimately knows what she's talking about, and part of me said I knew she did it wrong and that I should push. With some advice from nurses and friends, and my own gut instinct I pushed. I called the surgeon. She called the hospital. I spoke directly to the head of radiology, and to the speech path multiple times on Wednesday. I was told how radiation COULD harm my child, and how the lady who ran the test was AMAZING, yada yada yada. I was also told I COULD have the test redone free of charge if that's what I really wanted. I spoke with the speech path who was there for the testing and she suggested rerunning correctly. So I chose to have that done.
It was schedualed for Thursday morning. Eli and I got to the hospital and I was told repeatedly about how the results were accurate from Tuesday, and how radiation COULD harm my child MAYBE. I was told all these credentials of how amazing the radiology doc was and basically how I knew nothing. I told her repeatedly the test was wrong, my child is constantly getting fluid in his lungs and has pneumonia every 6ish weeks and that this kind of wear and tear on the lungs was GUARANTEED a bad thing. I know my son and I know this process. So against my will she began the test.
The tests was set up exactly as I requested, the correct way a swallow study was supposed to be run. The speech path was there and her suggested were listened to as well. Within a few swallows the mood of the rooom changed, and magically from thin air more people came flooding in to hover over the screen. Right there in front of everyone's eyes was a problem, a BIG one.
The aspirating was not in the swallow. He was swallowing beautifully. The problem is in the esophagus. The muscles along it aren't working like they are supposed to. It's called a motility problem. The food is stacking up at the top of the stomach and then after 8 to 10 swallows it's got nowhere to go because it isn't draining into the stomach fast enough and obviously he has to breath. So he takes a breathe and the food overflows into the lungs. Food is supposed to go down the throat, down the esophagus, and immediately empty into the stomach. This is done by muscles along the way. His aren't working properly. You can't make them work properly. No range of motion, no exercises, no meds, no surgeries, no practice, no nothing. These are muscles that we don't have 1 single drop of control over.
So the rush was on. Doctors were called, orders were written, faxed, verbally given over the phone. Doctors picked whose in charge, who will take each piece of the puzzle. The GI doc gets the esophagus itself, the neurologist gets the nerves and muscles, the surgeon gets the feeds and the gtube, and a brand new specialist who will be immediately added gets the motility issue itself. There is only 1 motility specialist and he is of course in Kansas City. Everything will be put together and Eli's care will be transferred to him.
In the mean time Eli is NPO. This means NOTHING by mouth. No nursing, no foods, no meds, no bottles, no NOTHING. The last normal thing about my son has ended. I can't hold my son and have that time. That non-medical time. It's all cold and sterile and medical and I hate it. I want my baby. I smell of milk. He has had the comfort and nurishment for the last 6 1/2 months and in 1 hr it was all taken away from Eli and I.
As I got into the van in the parking garage after his test I lost it and broke down in tears. I called a friend and they talk me thru leaving the parking garage. Within an hour or so a knock was at my door, and my household was taken over by an amazing friend. I laid in my room, sleeping and crying. I was pushed to go to my knitting last night and I did, mostly I was "there".
It's all a blur. I'm angry, I'm sad, I'm scared, I'm just done. I feel as though I'm being buried alive in a glass box and I can see everything but I can't do a damn thing about it.
My tiny little man cries and there is nothing I can do to make it better for him, or for myself for that matter. I don't know what happens now, what happens next. I have no idea. Right now I'm just trying to make it thru each hour.
If it wasn't for the amazing friends and family and nurses and doctors in our life I have no idea how I would be doing this at all.
I have but 1 request. Please don't tell me how strong I am, please don't tell me I'm a super mom. Please just tell me it's ok to be scared, and it's ok to be weak right now, and it's ok to lean HARD on the strong people around me. Right now I need someone else to be strong and super, because I can't do it.
And to the knock on my door, THANK YOU. You have been the rock, and without you.... There are no words to say how thankful my family is for you and your family. SMOOOOCHES! :)