Saturday, February 12, 2011

Longest. Week. Ever.

This week was a rough one, never ending. After returning home from our shortened trip we've been having one issue after another. During the day Wednesday I talked several times with the GI department, between the Fellow and the nurse practitioner. Relaying what happened in Boston but also getting prescription orders sorted out. After consulting and polling infectious disease and several of the GI docs on service, they started Wyatt on another antibiotic, Cipro to be exact, for bacterial overgrowth. This was after reviewing the results of the cultures that were taken of his G and J drainage last week while inpatient. Both bugs found showed sensitivities to this antibiotic and we're hoping to swiftly kick them out of his system. His GI doctor also put in an order for a glucometer to test his sugars at home. This was all done just prior to us leaving over the weekend, but we were unable to sort out the insurance battles that the pharmacy was having before our departure. We were assured that we could wait and get it as soon as we returned home, which we did.

During my chat with the Fellow (Wyatt's doctor is out of the country until next week and we've been talking with one of the fellows that has slipped into her spot for the time being) we talked about what happened in Boston, our visit with the doctor, why the test was cancelled, the Fellow's lengthy talk with Dr. F while he was trying to sort everything out, etc. She assured us that cancelling the procedure was the right thing to do for Wyatt. While I knew that was the right decision, the best decision, I was also concerned because our team here was hoping for some sort of direction from that test. We haven't exhausted all options, just yet. I know that, but it feels as if we're cutting it close.

Wednesday evening, while playing with his sisters, Wyatt's drainage bag became snagged on the leg of the piano in our living room. The resistance of the drain bag being snagged quickly yanked his GJ tube right out of his belly, balloon still intact. This was a first for us! It scared him more than it hurt, I believe, he was shaking so much that he was unable to stand. We put a quick phone call into the GI on call that evening and it just so happened to be 'our' fellow, who instructed us to pull it the rest of the way out and place a g-tube in its place. Just until she could attack the IR team in the morning and get us a slot to replace it the next day. She called me back first thing in the morning, just as she said she would, and told us when to arrive. Thursday afternoon, after a lot of struggle (his anatomy is tricky,or so we're told), a new GJ tube was placed. They placed a smaller diameter size because of a back order on his current size, but we were told it shouldn't be a problem...usually.

Thursday evening we were battling with the new GJ tube, already. It was clogging on us and wasn't draining as it typically should. We eventually started preparing his TPN, giving his meds and getting the kids ready for bed. As Bryan began flushing the one lumen on his central line it sprang a leak, dripping saline. We tried our best to hep lock the line, as it dripped out as quickly as it was pushed in. We called the nurse on call for the evening to ask if we should go in now or if we could clamp the line above the leak and wait till morning (the other lumen was working and his TPN was able to run through that). After explaining the type of line and how it was leaking the nurse decided we could wait till morning.

First thing in the morning, after getting Maggie off to school, we made a few calls and were instructed to head to the ER. We spent the entire day in the ER yesterday, waiting to be added on to the end of the day's schedule. Luckily, GJ tubes and PICC lines are both done in IR...and he's sedated, or at the least feeling druggy. They re-wired the PICC easily and started working on the tube, trying to figure out why exactly it wasn't working like it's supposed to. They now had the larger sized tube and were hoping to "re-wire" it over the one that was placed the day before. But as they were looking, the tube they just placed the day before was not laying as they would like. It had curled slightly and they decided it was best to start over with placing the new one. It took a long time and was not easy on any involved. His anatomy wasn't cooperating, in the least. Bryan and I sat in the waiting area watching as the patients and their parents left, one by one, followed by the hospital staff. Leaving only Bryan and I, along with the cleaning staff behind. Left to watch the radiology sign above the entrance to the room that our boy was in, light on and off as they would use the machines. But, eventually, the radiologist came out of the room and explained to us what was going on. Typically, we would be in the room with him during a tube change, just like the day before, but we are not allowed in the room while placing a PICC line, as it's a sterile procedure (or as much as it can be). I hate waiting on the other side of those large, heavy doors.

But all was finished, we waited for our discharge paperwork and we were then on our way out of the hospital for the day. Rushing to Jilly's dress rehearsal for her baton class, hoping to make it before it ended. Grandpa, thankfully, was able to get her to practice on time. We missed it, by minutes.

Longest. Week. Ever.

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1 comment:

  1. Oh sorry that things have been so challenging and difficult. Sadly, we know all too well how weeks like that happen. I am sorry to read that your experience in Boston was not what you hoped it to be. It takes strong and informed parents to stand up for their child...pat yourselves on the back for making the right decision for Wyatt. Just a thought, have you considered doing the manometry testing at CHOP? We are in the midst of making that big decision for our girly, still wrestling with it though.

    Hang in there,