Friday, January 13, 2012

Not Ready Yet

Well, this week hasn't gone exactly according to plan. Late last month Hope's trip to Ann Arbor to get her trach out was rescheduled from January 12th to January 9th so bright (well actually really dark) and early on Monday morning we (Hope, Grandma Robinson and Mommy) packed up the car and headed to Ann Arbor. Hope was scheduled to check-in to pre-op at 9am. They took her back into pre-op around 9:45 and then back to the operating room around 10:15. By 11:15 she was in recovery and we met with her ENT dr. He said that he removed a piece of scar tissue from her airway and after he did that her airway looked perfect. He was ready to proceed as planned - cap her trach overnight, observe her and if she did well then on Tuesday morning we would pull her trach out.

A few minutes later we were able to join Hope in the recovery room. She was pretty groggy and was slowly coming out of the anesthesia. The recovery room nurses worked on getting her ready to go to her room in the ICU, but when they called up to the ICU they said they didn't have a room available at the time. They weren't sure when they would have one. Since it was likely going to be a while the nurses got a dvd player and some movies for Hope to watch.

Hope watching a dvd

Since the bronch looked so good the next step was to cap her trach. After a couple of hours of waiting in the recovery area her doctor came by and decided to cap her trach before we got to a room (since it was taking so long). It didn't go well. Once they capped the trach Hope started struggling to breath. She has had her capped for many months at home now and her doctor thought she might have been struggling because her airway was swollen and irritated from the bronch. They took her trach out and looked at her airway with a scope to see if a clot had formed from taking the scar tissue out but the airway looked good. They decided to give her some time and try the capping again later.

Well, 10 hours after arriving in recovery, yes, 10 HOURS - we finally had a room for Hope. Because she was being observed in the ICU we were not allowed to be with her while they settled her in the room, we had to wait in the waiting room. About 10 minutes later we were allowed to go into her room and when we arrived her nurse told us they had tried to cap her and that "she had failed". We were livid! We were not told they were going to try to cap her at that point, we were not allowed to be present and the nurse and respiratory therapist who did the capping did not know about any of Hope's issues (she struggles sometimes with the capping if her head is not positioned well). After getting very irate with the nurse the doctor was called and we tried capping again. This time Hope did well with it and continued to do well the rest of the night.

In the morning we talked to the doctor and he was comfortable proceeding with the trach removal. A short while later several doctors surrounded Hope's bed and removed her trach (this is a non surgical procedure where the trach tube is simply unhooked and removed). Hope immediately began to struggle and panic so the trach was put back in. We believe that this was partly because Hope was not ready to have it out and partly because she felt frightened and agitated in the situation.

In any case, the doctor is not comfortable with the trach being out yet. He thinks that while her airway looks perfect perhaps the exterior structure of her trachea is weak. We are meeting with him on January 27th to discuss what the next step will be. He says that ultimately getting the trach out is still the plan. We will keep everyone posted.

Hope and Daddy