Still recovering from surgery.....

Hello everyone,

Just wanted to write a quick note on Jenna. She has been doing well the past few days. They were able to get her to full feeds by Sunday morning, but unfortunately her belly did not like that. She vomited quite a bit in the morning, then stopped for the day and did more that evening. The times that she was not sick, she was kind of pitiful, just because she did not feel well. But, she was still trying to just recover from surgery, she was in pain and very emotional, so Tylenol to the rescue! That medicine works wonders on her! So, by Monday morning, the new attending doctor was on, Dr. Catherine. She has known Jenna for quite some time and is very familiar with her. Prior to rounds, very early on Monday Jenna got sick again, about 4-5 times. So, they decided to cut her feed rate in half, down to 20ml/hr and call in GI and surgery teams again to make sure that they were not missing anything. They also decided to start the taper of her withdrawl medicines again, lowering her Methadone a little. The pharmacist went ahead and arranged a schedule that will be followed when we go to TCC and then when we go home. So, GI came by later that morning and checked her out. They said that it seems that it may be possible her feeds were increased to quickly and her intestinal tract may not be moving quickly due to surgery, her history, and having C-diff(infection in her stool). So, they felt that if it did not improve or got worse in the next day or so, that they would take a look at her again. The surgery team came by and felt the same way, that it may be too soon to tell if anything is wrong since surgery was just on Friday and they recommend that her feeds be increased slowly. So, this was done and she tolerated the increase much better this time. She is still having little bouts of vomiting, but not nearly as bad. They said that her stomach is going to take some time to be ok with food in it, and she may just have these little "vomit sessions" for a bit until she is completely better. They attempted to give her a little water yesterday by mouth (she has been dying to have some for weeks), which she literally chugged through her sippy cup. So we gave her a little more, but no more did she get it down, that it came right back up. So, the attending doc said, well guess her stomach is not quite ready for that, but she can still have the swabs with water on it, since she is not choking when it is swallowed. So, all in due time. They also discussed in rounds yesterday about moving to TCC by the end of the week, depending on bed status. So, today we came in and we were told that we were going to be moving by Thursday. However, later this afternoon, the attending came in and said good news is we have her all week and bad is that most likely there will not be a bed available for the TCC until next week. But, that is ok, we love all of them here, but also want to get to the unit because that means we are one step closer to home. The care manager for the TCC stopped by and spoke to us today to answer any other questions for us. We inquired on how the nursing care coverage works for when we go home. She said it just depends based on if the insurance will pay (we are trying to get approved for the waiver medical card now to help) and the availability for the nurses. She said that just because the doctors recommend x amount of coverage, does not mean it will be covered or available, so we will see once we get to the unit. There is a lot to take care of when we get there. She did say that since we were not able to get over there yet that the unit here could be signing us off on things, which we had been told was not allowed. So, I guess a little mis-communication, now we are trying to have the nurses and rts sign us off on things since we are already learning things. This will help shorten our time once we get over there. So, today she has done ok, no major issues other than her vomiting. She has done it throughout the day at various times, not continuous, but probably at least 3 or 4 sessions at least, amounts varying each time. So, hopefully she will feel better soon enough. Which in a way sometimes once she has vomited she is fine, because she wants a wipe to clean her face and her toothbrush to clean her mouth. She cracks me up, miss independent. She did get up today in the floor with OT and PT (two different sessions) and played for a few minutes. She did well, she stood up a couple of times with help, but she is getting better. She likes to crawl right now because it is easier, but baby steps. She is just going through the motions as she did before when she was first learning. So, she is still on the antibiotic for her C-diff and will be for a few more days. Once it is completed they will start testing her to see if it is still there, and then determine if she will have to be on more antibiotics.

So, right now she is trying to go to sleep. She has been taking short naps in the afternoon and then falls asleep around 5 or 6 and sleeps until 8 or 9 and then does not want to go to bed. Fun fun. So, eventually her sleep patterns will be back to normal. Anyway, hope tomorrow continues to improve for her. She is set for her routine echo because it has been a month since the last one. We will keep you posted on how she foes. Hopefully we will be home in about a month we figure, depending on when we get to the TCC and how quickly her care is set up for home. We will see. Keep praying for her as you have and we appreciate everything! Miss you all.

Love, Jenny, Justin and Jenna