Hi Everyone, thank so much for the prayers and comments about Jo's progress. He really is getting better every day, and we are confident the love and support he receives and God's healing hands make all the difference. Following Sunday's great day with Jo his buddies and family we had a very tough yesterday. JO IS FINE, but yesterday was a day we relied heavily on our faith in God and friends to make it through.
I'm pretty sure most of you know that Jo is currently fed via feeding tube as he heals. The tube (G Tube) is directly into his stomach and we administer formula and meds multiple times a day through the tube. It is both very common, and safe, and complications are rare. Yesterday Mom noticed that the tube seemed to be out of position, definitely different than in the past. It should always be flush against the skin and in this case it was protruding a couple milometers. The site was generally clean but looked a little irritated. Mom and dad have been trained to look at it, take it in and out, and what signs to look for of potential issues. Slightly protruding and redness in the area means we need to investigate what's going on.
Cutting to the chase, it would need to be reset in place by a doctor. Jo was generally comfortable but if we did any investigating of the area or tube Jo would be in obvious pain. Now comes the tricky part. Jo is uncomfortable, he may have an issue, and we have to get him to a Dr. ASAP. Call 911. Not an emergency but the fire trucks and ambulance arrive. The local hospital is under construction (awesome, ugh). Back to Mary Bridge Children's we go, 26 miles away, in the back of an ambulance. Back to Jo in the car, right after a feed, with no meds to help calm him down (we use the G tube to administer meds).
Jo gets there, and off course gets car sick. We go into the ER and the Dr. looks and says no problem, we will reset and send you on your way. They attempt to do so and, we have a problem. Jo is in pain during normal insertion which should not be the case. It should be simple in and out, with little to no discomfort and since Jo is hurting something else is wrong. Xray with dye to determine where is the fluid going if not the stomach? Xray shows it is still in the stomach (great news) but it is out of position and that is what is causing the pain. A radiologist team will have to re-insert during passive radiation to make sure it is placed properly. While all of this sounds scary and crazy, and it feels that way to Mom and Dad, it is not life threatening or anything to panic about. Worst case scenario would have been surgery again, and we have determined that is not necessary (phew).
We have no been at the hospital 3 hours. At least 2 hours of which have been just sitting and waiting. Wait for the Dr., wait for the xray, what for the radiology team, wait for the Dr. again, wait for the surgeon to review, wait for the room for the procedure, wait for another review....just brutal. Jo is comfortable the entire time, no issues, he is a champ. Dad has to leave Mom because kids are getting home from school. Mom is solo now playing the waiting game.
5 hours later they are done with placement, determine the cause was poor placement when re-inserted earlier in the week. As soon as the Dr. looks at Jo again he can be discharged. 60 minutes no Dr. Nurse has everything ready to go, just need that review, 90 minutes later still no Dr. One more wrinkle in this; we have no transportation ability for Jo, either in his chair, or lying down like this time, we are completely reliant on state run transportation services. He would have to take an ambulance home...If we had the right vehicle it would have been in the chair to the hospital, and home when we were done.
We arrived at the hospital at 1pm we were finally discharged at 715pm. The staff reached out to the cabulance company, transportation should be enroute. 815pm nothing. 9 pm, nothing. According to the staff there was a "miscommunication" and they have only now called, they should be here soon. 1015pm Jo is in the ambulance headed home. Brutal, just brutal. I spared the details of the phone calls and discussions with hospital staff about the ridiculousness of the process. This is still the hospital that saved Jo's life, the experience was horrible, but Jo is now home and resting, in no pain, and doing great!
The most difficult part of this entire experience is reliving the helpless feeling we get at times caring for Jo. We can handle so many things, but the moment something goes wrong we have to get help, and that process can be just as stressful as the issue itself. We prayed alot yesterday, it was the only comfort I could find.
Jojobinks we are so sorry you had such a tough day. Everything is fine now, you are home, resting, and improving. Don't ever fear because God is with you, and we are by your side. You never stop amazing us with your strength and resolve. Rest and recover, we love you to the moon and back sweet angel, YOU'VE GOT THIS!!