Yesterday morning we had to take Elias to the Emergency Room. We have been watching some developing symptoms that would come and go despite being seen twice by doctors. we had already committed to calling his surgeon this morning anyway, but things got very bad overnight Sunday. On Monday morning his temperature was 100.7 and his G-tube site was very hard, raised and very ugly looking. This was very new within the last 8 hours so we knew we did not have a choice, we had to go to the ER.
Turns out Elias has an infection in his belly. The balloon that holds the G-tube in place was broken and while that was not the reason for the infection it caused the tube to be mobile and was constantly in poor placement. A contributing factor is that Elias rolls in his bed constantly, and while we keep a constant eye on it not allowing it to become tangle where his humidity tubing gets underneath and pulls the G-tube up (and eventually out) not all of his nurses are as vigilant as night. We know this because we walk in and find him tangled, so it is pretty much proof positive, especially when they say, “oh he was tangled?” Elias was very miserable, uncomfortable and in some measurable amount of pain. I actually ran into his surgeon after I parked the car walking back into the hospital. I gave him a heads up on why we were there. It was almost the fastest ER visit ever. The surgeons were “officially” paged to the ER for Elias and they appeared instantly since they already knew we were there, but you know protocol has to be followed. They checked him out determined the problem, changed the G-tube out, prescribed medications and said if we were comfortable taking him home they were good as long as we followed up the next day with a phone call report. All this in about 3 hours….This is when the lack of multidisciplinary care and coordination at our hospital comes into play. Proving to us that our decision to take Elias to the FA Comprehensive Clinic is the right one. The ER doctors drew blood labs upon arrival, standard protocol, no big deal. Of course his white blood counts came back high, that makes sense the surgeons said there is an infection in the stomach and 2 antibiotics prescribed. That was of course not good enough for the ER doctors. They ordered chest x-rays and wanted to wait until all the lab work they had drawn had come back. We again had to fight the validity of the chest x-ray and the whole limiting FA patient exposure. He was not in respiratory distress or even having difficulty breathing. They could not provide one concrete clinical reason for the chest x-ray, so it was not completed, but we still had to wait for the labs, even though the surgeons signed off to send us home. Eventually the delay in discharging us turned into them telling us, “Since the lab work is showing signs of infection, we want to be certain the surgeons are still okay with sending you home.” It took four hours for them to finally discharge us, after the surgeons said we could go home. This wasn’t about liability since the surgeons signed on we were their responsibility. It was about the same crap we deal with every time his specialist are brought in on “hospital turf.” It was though the ER doctors were floundering for a way to admit us. When we called his surgeon today we told him about all that transpired and he was not aware of it, and being the attending on call he should have been in the loop if the ER had contacted his team again. So now we are wondering if they really talked to the surgery team again about the labs. He apologized and told us he was going to address it. He also told us the next time he is on call like that and it happens to call his cell phone and he will come down and straighten it out. He agreed that it was ridiculous and unfounded. As we said it helps us to realize that we are about to embark on a much superior scenario with continuity of care by individuals that understand Elias and his disease.
Now that we have a few doses of the medicines in his system now, Elias seems to be doing much better. He is smiling and laughing and willing to play again. So we are happy that this all worked out for the best and our little man is feeling better. We did discuss while he is in for his multiple surgeries in a few weeks, putting in a Mic-Key button style G-tube. This is what Elias had originally, when we had all the leakage issues while in the NICU. We are going to give it another shot because it will be better for him and his mobile nature. We will keep our fingers crossed that it works better this time around.