Sorry I have not blogged in a couple of days. This weekend started quiet, no major issues Friday evening, just Jenna resting. Saturday morning went well, Jenna tolerated trach care a little better. We just played and hung out most of the morning together. She was started on a cpap trial again around 9 am and Jenna made it to around 3. This time her oxygen levels did not go down, she just was breathing faster and it was obvious she was working harder. So, the respiratory therapist and nurse did not want to push her, so decided to just stop the trial. She did well for the most part. In the morning Nonny came to visit for a few hours which was nice. We were able to catch up with her and let her know how Jenna was doing. At lunch, we met up with a couple (the man works with Justin in Kroger land) and went to BW-3's to watch some of the Marshall game. This was fun, to watch the game and to catch up with people from home. :) While we were gone, Jenna rested most of the time. So much, that by Saturday night she decided she wanted to stay up and "party". Party in Jenna's room at 12am! I left here about 1 am and Justin did not get her to bed until almost 2. Needless to say we were very tired Sunday morning. Earlier in the evening, Meme and Pawpaw came to town and we went out to Newport on the Levee to dinner. It was nice. The only changes that had been for this day was to increase her feeds by 2ml every 6 hours and to lower her oxycodone dose from 1.5 to 1. She seemed to tolerate these changes well. On Sunday, the changes that were made were to her oxycodone to as needed and to increase her feeds by 2ml every four hours. We attempted to do another cpap trial today, but she became very upset after about an hour and we placed her back on her ventilator rate for the day. Later that evening she was placed on a trial and tolerated it for about 3 hours. The day seemed to go well, she rested most of the time. By the evening we decided to do a bath and trach care. Right after beginning, she became sick. Mostly she spit up mucous, but it had blood in it. My heart sank when I saw it, but she stopped and seemed ok. They sent a sample of it to the lab to make sure it was for sure blood. The fellow hoped that it was possible to be irritation from her throat around the trach. But Jenna proved otherwise, because after about 20 minutes, she got sick again. This time, it was very clear that it was vomit from her stomach, and had a small blodd clot in it that was dark and then very small amount of bright blood. So, at this point Justin and I were very nervous. She had made it to 24ml per hour after 4 days, just like the two times before she had her GI bleeds. So, they stopped her feeds, and we insisted that not be started until the morning when GI could be contacted about a plan. They checked her blood levels, which showed to be normal. Luckily, she did well through the rest of the night. She slept and did not vomit anymore. We made it in time this morning for rounds, yay! They decided considering her history, even though her blood levels were fine, they would hold off on feeds until GI was contacted about a plan. She still did not need oxycodone for pain, she was tolerating everything. So, she remained on no food and just TPN and lipids for nutrition. Gi stopped by this morning. SHe discussed the situation with us. She felt that it would be best to keep her no food by mouth through the day to see how she does. She said that they do not want to scope if they do not need to, since it was just done 10 days ago and there is no indication of any areas that could bleed. Everything is scarred over. She said depending on how she does, they may clean out her tube with liquid by "lavaging" the area and see if anything comes back. Jenna did well through the morning, only vomiting once, which was just clear mucous, no blood. She rested most of the morning, and in the afternoon I had to wake her to play with OT for the day. If I would not have woken her, I think that she would have slept all day. GI stopped by again in the afternoon to check on her. They were pleased that she had no more issues, and said that she would be ok to start food again by the morning at a low rate and go slow when increasing her amount. They said that they feel the issue may have come from where her stomach is making "gastric juices" again from food being in it, and her protection medicine she was on is not high enough to protect her stomach, originally it was fine for her. They said that since she has not had any food in her stomach for 6 weeks, that it will take some time for her to adjust to the food being in it again and will irritate some. So, once the food starts again, hopefully she will fine. So, the rest of the day went well, no problems. They rounded this evening and said that they were going to start feeds in the morning slow for sure and discuss with GI how quickly they want her to increase. Dr. E was in rounds and said that it is possible that Jenna is just having a little trouble adjusting to food being in her stomach. He said that when anyone does not have food in their stomach for a few days after being sick, they have trouble eating, so imagine no food for 6 weeks! I brought up in rounds about the fact that she typically only took 22 oz on a good day of milk, and the goal she is at now is 32 oz, is it possible she may just not tolerate how quickly she is getting it and the amount? If so, can the calories be increased so she is not on such a high rate, they said that this is an option because she just may not tolerate it, and they will speak with the dietician. Also, Dr. E feels that her iron is low and added it to her TPN as well. They are going to taper her methadone down to 2 tomorrow also, hopefully she will do well from it. So, has had an ok evening, rested mostly. She and I fell asleep for a bit and then woke up and took a bath and washed her hair in a cap. That was fun! So, not much going on with her now, just sleeping. The pulmonologist stopped by earlier today to talk about when we move to TCC for her rehab to go home at some point. This was a long conversation and basically just was to prepare Justin and I for how it will be over there. Depending on how quickly Jenna goes, depends on how soon we go home. The goal is to get her on a little as possible to go home on, they will transition her to another ventilator machine that will be for home use for her cpap. He said that since she came in on no oxygen and was very active, there are quite a few steps she has to take for getting back to herself. SO, as I felt before, we will most likely be going home with the trach, just who knows how long. He said that he cannot predict how she will be in two months from now. Again, we know that for every day she was "down" it takes 3 days to rehab back. So, it will be a while before she is completely herself. He said that she may still be getting back to herself up to a year from now. So, right now we are not sure how things will go over there, we just hope they are able to help her improve. Some rehab lengths of stay can be 6-8 weeks, depending how well they are able to get her comfortable enough to go home. But Jenna is also not a typical child with lung disease, she is just not strong enough to do things on her own completely and until she is, she will need this assistance. All in due time.
So, hopefully we will continue to do better tomorrow. Keep praying for her, and hope that we keep taking our baby steps. We love everyone and thank you so much for everything. We will keep you posted on her status.
Love, Jenny, Justin and Jenna