Another setback.....

Hello everyone,



I know that I said that I would post last night on the details of her day. However, yesterday evening after we were finally able to go to dinner (Jenna was anxious and did not want us to leave), we made it back and she was finally asleep. So, we decided to leave early and go back over to the house to get some rest. Then, this morning we overslept until after 9, we missed rounds and everything. We are just so mentally and physically drained from this entire situation and just try to take the opportunity when she goes to bed early and rest ourselves. The nurses encourage us to leave because we get here at 8 in the am and do not leave sometimes until midnight. I know that not being here and knowing what is happening every second is nerve racking for everyone, but believe me, if Justin and I could trade places with anyone, we would. I would not wish this situation on my worst enemy. We appreciate all of the support everyone has been giving to us and continues to give us. But, again, if I do not post at night, I will do my best to post the very next morning. Sometimes time just gets away from us. So, with that being said, here are the details from yesterday.



We received a phone call over at the house at 6:55am from her night nurse. She said that around 4:30am Jenna started to have a coughing fit when she was on her hi flow oxygen and ended up vomiting. Immediately they turned off of her feeds, she was half way to her max goal at that point, 26ml per hour. She ended up vomiting four times, 2 of which had small blood clots in them and the last was pink tinged. So, the amount of blood was not near what it was before. However, considering her history, the nurse was not taking any chances. So, she contacted the doctor, and they consulted GI about her situation. Her heartrate and breathing increased during this moment also and she was working really hard to breathe. So, they finally were able to get her settled and give her the scheduled Methadone and she finally fell off the sleep. So, we of course immediately came over. From the time we arrived to rounds, she managed to spike a fever of 101.2 and also, her incision site from surgery last week on her side had popped up, like a lump. So, the nurse brought to their attention during rounds, which they said that they would like to do blood cultures and urine cultures, just to make sure that nothing is growing. Also, general surgery was called to look at her side, which had gone down when they came. They felt it was probably just a pocket of fluid and her body would absorb it. They said that they would start her on a set of triple antibiotics for the fever, for precaution for 48 hours. We will wait to see if anything grows from the cultures. Also, the were waiting for GI to come, the attending said that he would not have been so concerned about the small amount of blood because she has been on the ventilator so much; however, considering her history and what she had done a week and a half ago (bled out and arrested), he was not taking any chances. Bottom line, he said that he did not trust Jenna and what she is capable of doing. He said that one hour prior to coding, all of her levels were excellent and then that happened. So, he was very atimant about doing the endoscopy, but was waiting on GI. So they came up, agreed that the test should be done to make sure that nothing is "brewing in there". So, they said it would probably be early afternoon when it would be done. So, they said that they would stop the hi flow trials for today so she could rest. Also, Dr. E. said that if they were going to do a scope on her and she be sedated, he wanted the pulmonologist to come by and do a bronchoscopy on her since, her right lung showed collapse on xray this morning. So, all groups were coordinated, along with cardiac anesthesia to get ready for the test. Around 12:30p, they decided to prepare her. To do the test, she had to be re-intubated (back on the ventilator) because she has to be completely relaxed during the tests. So, this was completed, she was put under full sedation. They had to change her arterial line in her wrist, because this is the same on she had in since her first surgery in July, so it was no longer good. Also, they had to put another access line in because no medications can be put through her arterial line, and she only had the picc. So, they were able to get one in her left foot. So, finally they got her ready and we went down to the OR for the test. She was completely asleep until I leaned over to kiss her by and she woke up-eyes WIDE open. So, I felt bad, because now they had to give her more to keep her calm. She was not a happy camper at all. So we said goodbye and went back up to her room.



Close to 2:30 (mind you she went down at 2) her GI doctor, Dr. Puttman walked in. We were so surprised that he was finished already. He said it was much easier this time, because he did not have to move around anything like he did before to get to the area which was bleeding. So, he showed us pictures (yay, more to add to the collection of Jenna on the inside). He said that she has 2 ulcers and also a large strip of irritation across the stomach. One, which is in the esophagus, which they were aware of before and it is healing. The other is located in the upper portion of her stomach. It is the same area which bled previously and that he had already cauterized once. He said that this time he was able to get a more clear picture of the area, because last time she had lost so much blood, that the stomach was not filled up with blood in order for him to see the severity of it. He knew the size, which is a little smaller than a quarter. He said that, looking at the area now, he said that it is very deep. He said that it is so deep, that he is concerned that down the line, it could POSSIBLY perforate (make a hole) her stomach. He said that most likely the cause for it to be irritated again, is from the food and the feeding tube, not allowing the stomach to heal. Because originally, the GI doctor said that the area should be ok to eat within 5 days, but again the severity of how deep the area was,, was not seen before because of lack of full bloodflow. It has broke through yet, the area was just weeping blood, which he cauterized it again. He said that since the area has not broke through, they will not take the route of calling general surgery to fix it. Right now, Jenna is not exactly a great candidate for the surgery, given everything that has recently happened. So, the recommendation right now is to not allow anything into the stomach area for 2 weeks. No food orally or via the feeding tube. He wants to area to be free of anything that could possibly not allow it to heal. She will remain on her regimen of medicines, Protonix and Zantac which both help keep the acid out of the stomach, so it will not become irritated. This should help in the healing process. He said a child with no other major issues happening, it takes 2 months to fully heal, however Jenna is not a typical situation, considering her history, so it may take longer. So, in two weeks they will reassess the situation by doing another scope. If the area is healing and GI feels that she is ok, they will release her to eat. So, they will watch her at that point for close to a week and see how she does. The attending said that if she is cleared on everything else at that point, then she could move to stepdown. However, if the area is not healed enough, then they will most likely wait longer. I asked if the option of surgery is there at that point, he said, maybe depending on how she is doing or if the area is worse and they could go in and staple the area to keep from coming open. He said that he does not feel that anyone would want to operate on her right now, just because of the situation. It is better to let the area heal, then to go in there and something major happen. They said that may consider also to start her back on the Kerafate medicine that coated her stomach, but it has to be given either tube or by mouth. And right now we cannot do either because no tubes and by mouth because of the hi flow oxygen, she could aspirate the medicine into her lungs. Also, the medicine works by the acid which is in the stomach, and they are getting rid of the acid by giving the other medicines, so they are not sure the route they will take with that. He said that the artery which comes off of her stomach, connects all the way back up to her heart and since the right side of her heart has been sick, that means that the blood which flows through her stomach is very slow and backs up, causing the stomach to become sick. She also had her bronchoscopy done, which showed some secretions in her main lung stem and in her right upper lung, but not enough to be significant for the collapse. So, the most likely reason of her collapse is that her right lung may just not be strong enough yet. So, Dr. Marino (attending) said that it is possible that if she makes strides in the next few weeks, we could be home in about a month (4 weeks), but we should plan on 6-8 weeks just in case. He said that she has hit so many bumps in the road, that is very possible she may hit another one along the way. So, he just felt it was only fair to be honest with us, which we appreciate. So, I guess we are going to be here, much longer than expected. We have already been here 32 days, and this is not exactly the news we wanted to hear. But, as long as she improves, we will be happy. If it takes a while, so be it.



So, last night she slept well for a while, but then woke up around 4 am and played with the nurse for quite some time. She read books, watched spongebob, played. But, by the time we arrived this morning she was snoozing. The nurse clued us in on what we missed in rounds. She said that they are going to do the hi flow trials just two times today, instead of every four hours as before. She said that they just want to give her a break. She said that they are wanting a quiet day for her, nothing to major to tire her out. The occupational therapist stopped by earlier, Jenna let her read to her and move her arm some, but that was about it. She was aggitated and wanted her to leave. So, daddy has been setting by her to make her happy and watching Miss Spider. So far, there has been no growth on her cultures, she will continue the antibiotics today and then stop them. Her belly is distended some from the scope yesterday, so hopefully this will get better. So, they area doing her first hi flow oxygen trial now, so hopefully she will do well. She is going to get to set up and play some too. So we will keep you posted on how she does. Hopefully no new changes today.



Thanks to everyone for all of the support, love and prayers. It means so much to us. Again, I will try to post as quickly as possible on her status, but do not be alarmed if it is later than usual. Remember, no news is good news. Thanks to everyone for everything. Talk soon.



Love, Jenny, Justin and Jenna