Day 9

Tonight is the 25th night in a row that Jennifer has slept in a hospital bed. I think it would be safe to say, it has been a long month. I really feel like we are beginning to see the light at the end of the tunnel. Each day, things seem to get better and better! For example, yesterday the epidural went away and today the PCA went away as her pain meds are now oral. I think this is the way to go! If Jennifer asks for them like she is suppose to, the oral pills will continue to provide pain relief over a longer period than the IV push.

I stayed at the hospital last night with Jennifer. Of course, that means I was up early as the X-ray tech was ready for an X-ray at like 5:30am. After that, I realized how uncomfortable the chair was and it was hard to get back to sleep. The doctors came through a little bit later and told us that they had decided to hook the chest tubes back up to suction support. Although I really don’t understand this concept, the doctors said part of her lung was beginning to collapse so they needed to quickly remove the excess fluid out of her chest cavity that had built up overnight. I have been taking the stairs to the coffee cart in the morning, and today I ran into Dr. Mulligan. He stopped me and asked how I was doing. I said, “ok.” He said that he was just talking with his team about Jennifer and told me that they were going back to suction on the chest tubes. He said not to worry though, her lungs just needed some more time. I feel pretty confident when he says not to worry. It’s hard not too though.

The afternoon seemed to go pretty quickly today. Jennifer headed off to X-ray for a bit. Not really sure why they just didn’t haul the machine into the room. That process takes a few minutes. It took about an hour to get her to X-ray and back. After that, the pharmacist came in with all of Jennifer’s pills. After transplant, the goal is to get the patient taking care of themselves as quickly as possible. That means, learning all the new medications and what they do. Beginning tonight she would be responsible for taking her own meds. Of course, the nurse still has to scan them and make sure she is doing it right. There were a lot. The pharmacist was nice and explained what each med did, how often to take it, and side effects. That took about an hour, but Jennifer got all her meds lined out for the week!

The we got a visit from Joe. Joe is the post-transplant coordinator at UWMC. He came in to provide us with information around transplant. He also began to talk about life after we leave the hospital. Jennifer gave up the vest last week and will now have to keep a diary. We have to buy a set of scales, a blood pressure monitor, thermometer, and…(one more thing but I am drawing a blank). Jennifer will get up and check all those things and write them down. Here’s why…They monitor so many things with her and know exactly signs may be rejection that if she isn’t feeling well, she can call, give them the data, and they can create a care plan. Joe said that we would be seeing him again before we are discharged from the hospital. I think the most interesting thing that he talked about was the fact that it can take quite some time for a transplant patient to receive the full capacity of their new lungs. He talked about a transplanted patient, who after 3 years, has his highest lung function to date! Another CF patient just went past the 22 year mark and is still competing in marathons.

I had laundry and some reading to do for class today. I got out of the hospital today around 3:30 and headed for the hotel. It seems the quickest way to the hospital is to merge on to the 5 for one exit. Sounds easy, except for the 6 lanes of traffic you have to get across in 1/2 mile. Sorry to anyone I cut off today!

The sister of a lady that Teresa works with brought dinner over to the hotel, so we would have some food. It was very good! Thank you! The hospital really doesn’t have the best food. Oh well! Hopefully we are getting closer to being out of that place!

I talked with Jennifer tonight and she was just finishing up her 600 foot walk! That is two laps around the floor. Great job babe! Keep up the good work. You are getting stronger and stronger each day.

Happy Valentine’s Day everyone!
Kerry