Today was one of those days that reminded me of the game “Telephone.” You remember, where one person gives a saying and it is passed around a circle then the last person tells what they heard aloud? Usually wrong and error filled. That was apparently being played today at CCHMC among the doctors. Every 10 minutes it seemed the plan was changing. At first it was no big deal, great communication, but the plans started to become ridiculous and down right stupid. Finally, it was decided that ENT was no longer in charge of Elias. He was being transferred to GI because the feeding tube issue was becoming the most concerning and crucial with a demand to create and execute a solution. At 2pm we were working on a plan to pull the existing tube out of the stoma, allow it to close and heal, pass a NG feeding tube into Elias stomach, feed overnight to ensure he was tolerating then home. The caveat to all this was the surgeons had to be able to redo the gastrostomy surgery within a reasonable amount of time. That apparently is asking too much for a child with poor IV access and a dangerously placed feeding tube. Finally at 7pm the GI doctors come and tell us that they had been attempting to work with the surgeons on an acceptable plan, but it wasn’t looking good. So the plan now was to feed him in the G, D, whatever it is-tube that Dr. Putnam (Elias’ GI doctor) was very much against. The inpatient GI attending said there wasn’t any other option and that we had been using it for 13 months a few more weeks wouldn’t hurt. Well Dr. Putnam felt different about that, but he was not there to consult so there you have it. Katharine made the comment, “that’s like driving drunk without getting killed and you say one more time won’t hurt.” A stretch for an analogy, but effective! They still felt that was the best and only option. They were still continuing to work with surgery for a resolution. They started Elias feeds around 9pm at his full rate 35mL per hour. Less than 5 minutes in he was in obvious pain and crying. Feeds stopped, resident called, x-ray ordered. This was the third x-ray of the day for Elias as he had 2 chest x-rays to check for aspiration of contrast from episodes he had last night. No No No, that was the straw that broke the camels back. All day people came in not knowing why they were there and basically just a complete breakdown that we NEVER expected. I halted everything and insisted on the doctor speak to us before anything else went on. It was agreed the day was not ideal and that many things went wrong in communication and it was impacting decisions and Elias’ care. So we regrouped and started over. They still wanted an x-ray of the tube placement. I whipped out my trusty FA book on care management and opened it to the GI section to show them that x-rays of the GI tract should be limited to clinical blockages. Remember FA patients need to limit radiation exposure. I was close to dialing the Bone Marrow on call to help me out, but it proved unnecessary. We told them the tube in was placed under interventional radiation with contrast, which Elias had spit up and potentially aspirated the night before, so checking placement was not necessary. Here was an example of the poor communication & telephone game. They were told the tube had fallen out and just placed in without verification of placement because it was not in use. They also did not know about IR placing the day before or the episode of the contrast in Elias trach. Opps! So after collecting our thoughts and straightening everything out we are back on track. We are starting the feeds at a slower rate and slowly working up to his regular rate. It was too much too soon they hoped.
The next issue was Elias breathing. We had been commenting over the last few days that Elias was belly breathing and it was much more exaggerated. He also looked as if he was working very hard to breathe and his heart rate was much higher than normal, even when he was sleeping. Wednesday & Thursday we bought into the it was residual from the procedure, but at 7pm it was not diminishing. We pushed and ironically had to call ENT in for a consult, the team that relinquished Elias’ care management just 8 hours before. They came in with a little scope and saw inside what we were witnessing outside. Basically, Elias has an area of tracheomalacia where the blind pouch is that the old trach sat in. It is left to kind of flap around creating resistance because the new track is shorter where the old trach supported it and pushed it against the wall of the trachea. The ENT said that he wanted to have another look in the morning after some Atrovent overnight, but he thinks the trach does need to be addressed. It shouldn’t be necessary but Elias might get tired and need a vent to help him until Monday when the pros, Dr Rutter & Dr Wood are back to look and decide. The shorter tube we are using would be fine if it wasn’t for this little flap, but to use a longer tube which would help get it beyond that pouch is risky because they are unable to confirm or deny the placement of the artery pushing against the trach. The longer tube could over time perforate the trachea from the pressure. So we wait until Monday for their look, thoughts and opinions. Elias is breathing fine and is stable that is why they are waiting. The worst they are even remotely expecting as I said is him getting tired, dropping his O2 Sats and needing a vent to help him breath, but that is not likely. It was nice to finally have an answer and that we were not crazy.
Elias is still getting remarkable care. Please do not read into our vents of frustration. It is going to happen, nothing is perfect, and when you have been there for several days things start to get very tiring and frustrating from that. Add in the shoddy communication and it was simply a day for us to grab the reigns again and pull everyone together on the same page. Once that happened things were much better. Just a shame it took until 9:30 pm to get there. Elias is doing well. He is tired and lethargic from the breathing difficulties, but otherwise is in pretty decent spirits. We came upon a revelation today regarding some of Elias favorite characters. Yertle the Turtle from Dr. Seuss, Donald Duck from Disney and Stewie from Family Guy (he laughs whenever he comes on, thank god he’s too young to understand). All three have something in common. They are supporting characters that want to rule the world, be King or steal the focus of attention. Hmmmmmmm! Makes you wonder if that is coincidence or foreshadowing? Just a very tired yet witty observation. I’ll leave you with that thought my friends! Thanks for all the thoughts and prayers.