Just wanted to let you know how Jenna has been in the last couple of days. Yesterday morning, mommy and daddy overslept again, ARGGG......We called over to the hospital to check in on babygirl, and guess what. Jenna had sat up in bed and became sick, in during this, she spit up bloody mucous/formula. The nurse said she was doing fine at this point, but they got her bathed and trach ties changed and she was playing now. She said that when it happened they were rounding on her and it was almost like Jenna heard them say that they were going to start increasing her feeds again, and then Jenna was like, no way man, I will show them and just get sick. So, she of course does it her way. So, GI got back involved again, came by and spoke with us. They said that since she has done this twice in the last 5 days, it would be best to just do a scope to see exactly what is going on. So, around 2p this came in to do the scope at her bedside. The attending prepared well to keep Jenna asleep, he loaded her with lots of narcotics, because he has been with Jenna before and knows that she will just bust through the medicines. And of course within 3 hours of the test being done, she was sitting up in bed playing with OT! She was given a paralytic medication to know her out and she was sitting up and playing like, what is the big deal people. Go figure. So the test did not reveal any active bleeding. They said that it is promising that the areas from before are healed well. They said that they are not for sure what may have caused the bleeding, it is possible that it may be coming from irritation with the NG tube either at the tip and it is laying against the stomach wall sometimes, not continuous and then it moves. They said it may bleed a little, then stop and when Jenna vomits or coughs, it breaks lose. The other reason it may be bleeding is that she has these polyp areas in her esophagus, and the tube may be rubbing it a little causing a little bleeding. They said that the amount of blood is so little, that it may be that she is just really sensitive. They are not sure, and are going to watch her for now. She began her feeds again yesterday evening and seemed to tolerate them fine. I asked if it was possible down the road if she continues to be irritated and requires the feeding tube for a while, will she have to have a tube possibly placed directly in her stomach for feeding, so that she will not have the tube actually going down her throat. They said that this may be an option, but we will see how she does. So, we again expressed concern yesterday evening with the fellow. It is not that Justin and I want Jenna to have to endure another surgery, but we feel that we just want to be aware that this may happen and not be side-winded (as I call it). We want to be prepared, unlike the trach. So, we want what is best for her. We would love for her to be able to eat as much as they would like her to in order to maintain goal weight, but the amount is way more than when she came in, and she was healthy coming to the hospital and still not have the strength to eat that much. So we will see.
This morning Justin and I participated in the Cincinnati Children's Walk for Kids at Coney Island. This helps raise money for various departments in the hospital, depending on who you want to donate to. Together Justin and I raised almost $500, and it was donated to the Heart Institute. We walked with another family, under Team Hall. We met the mother of Austin and Aubrey online through Facebook, Kim. It was so great to finally meet her and the family and be able to connect with another heart family! We had so much fun, the weather was a little cool, but it was nice. I wish Jenna could have been with us, she would have had fun with all of the face painting, games, pictures, playground. But she will next year, we are going to have our own team that time, Team Jenna. So, hopefully we can recruit some of you all to be with us in the walk. While we were at the walk Jenna had a good morning. During rounds, the fellow had made the team aware that we were concerned about the irritation from the NG tube, and they said that it was a reasonable concern, and the option of the G tube placement may be "on the table" since she is continuing to bleed every once in a while. They are going to wait until the new attending comes on Monday to see if he has any other plans to try, and then make a decision. Currently she is scheduled for her CT angiogram Wednesday. She got a little sick, (no blood) and the nurse bathed her and washed her and placed them in fresh pigtails :) She played, read Clifford and watched Cars the Movie. She had lots of fun and by the time we made it back, she was asleep. She finally woke up for a little bit, in which during that time she got sick again, and this time, she did spit up blood, not a lot, but enough to be noticed. She fell asleep shortly after this from all of the drama, she was tired. BTW-the culture from her stool the other night when she had bled came back negative for anything, no infection! So, during evening rounds, I spoke with the charge nurse and fellow about the bleeding. They said that because the amount was very little, they were going to continue her feeds she is at 28ml per hour. It does not seem that the issue is from her not tolerating the food, just irritation from something. So, I said to the fellow (which now I am afraid that I was a little rude and sharp in my tone of voice), "SO are we going to just continue to feed her, let her keep bleeding, and then just hope that it goes away?" He said, no, it just seems that we may be leaning to the G tube placement since she has done it two days in a row and earlier in the week. He said that it seems that her polyp areas are irritated or from the tip of the tube. So, again, they are going to discuss and decide what is best for Jenna, which is what we want. We also asked if it is possible the blood may be coming from her nasal passages, she has a history of sometimes getting a bloody nose from it drying out and being irritated. He said it may be possible, but not likely. So, we will see what the team thinks is best for her. We were able to get her to sleep early tonight, which is great and Justin and I got out early. We are over at the house now and hope to get some sleep. Thanks to everyone for the concern and prayers for babygirl. Hopefully we will figure out this bleeding thing and be on our way to going home soon. At this point, we just hope to be home by Thanksgiving, who knows. I am just so tired and so is Justin. Keep praying and thanks for everything. Love you all.
Love, Jenny, Justin and Jenna