Sorry about posting so late, the computer deleted my entire post, so this is why I am just getting it up, stupid computers...uggg......
Just wanted to post a quick note on babygirl. Yesterday went well. The attending Dr. Johnson came on, but was basically following the same plan as last week with Dr. Lorts. We started the day by changing her doing trach care, and having her epidural taken out (all of which she really did not like). She has been quite aggitated the last few days, which we feel is basically pain from surgery and does not want to be touched. When the pain team came in to take out her epidural, they answered our question regarding her eye situation. They said depending on where the epidural is inserted in the spine, it can possibly compress the optic nerve (nerve that controls the pupil and eyelid). So, when she took it out, she said it was most likely this as the cause because hers was really high in her back. So, almost immediately we saw a change in her eye. By the afternoon she was back to normal. We managed to get her ventilator rate down to 10, which was good for her. They did a trach collar trial, which is humidified oxygen for about 3 hours, in which she was starting to work a little harder breathing, so they put her back on her ventilator rate so she would have extra support. They did a blood gas after and it came back at 66, which Jenna's baseline is in the 50s. So, they were going to keep an eye on it. Basically this number monitors the amount of cabon dioxide which she is breathing out, and with the number being high it means she is holding more in than she should. So, through the evening, she relaxed, rested and slept all night.
Tuesday morning started very early, 7:30A she went downstairs for her laryngoscopy/bronchoscopy to make sure that her vocal cords were healing from the tube in her throat before and to make sure that her trach is in place fine. Dr. Argmond came out and talked to us, and said that everything went well. The ulcerated areas are healing, and he does not need to re-scope her for another six months. He said that the next time he sees us he hopes that it is before then to take her trach out. He answered our question regarding if they wait to take out trachs in the winter. He said that every child is different, the plan can be a little altered if the child experiences more illness normally like upper respiratory infections, bronchitis, or pneumonia. So we will see what pulmonary and the cardiology decide, it is up to them on her progression. So, when we got back up stairs, we changed her PICC dressing, the dressing holding her feeding tube, and trach care. She tolerated it, but was very unhappy. Go figure, my drama queen :) So in the afternoon we did another trach collar trial for about 3 hours. PT came by during it and worked with her for about 20 minutes. She did fine, but was really tired. She closed her eyes about halfway through playing, which is an indication that she is done playing. So, we stopped shortly after. They did another gas on her, and the carbon dioxide level was 73 this time. So they decided to put her back on the vetilator rate of 10 and not lower it for the night. The rest of the evening went well, we were able to step out for dinner which is good. Then we came back and did trach care, and they removed the dressing on her surgery site. She was very upset after this, so nothing else was done for the night. She mainly rested. Right after we left for the evening Jenna decided to be a little funny. The nurse thought that she was asleep, so she stepped out of the room. Well, then her ventilator machine started going off, so she went back in. Wouldn't you know it, Jenna decided to pull the tubing attached to the device on her trach off which tells the machine something is wrong. When the nurse came in, Jenna was just setting there holding the tubing up like, umm can you help me? Luckily she did not pull on the trach itself. The attending doc had stopped by earlier in the day to talk about Jenna's progress. SHe said that she was doing well and once GI gives the go we will start feeds in her belly. Once she is doing well in this department, they will move to by mouth. She said at that point, respiratory is her only issue. So, with that being said, we are now talking about being moved to TCC (trach unit stepdown). This could be as early as next week sometime, depending on Jenna. Here at this unit, they prepare you for going home with a trach. We are still not sure if we will go home on it, but we are trying to learn the process so if we do, we are ready. The goal is for Jenna to get stable to go home, with or without the trach. Justin and I just hope that we get home by halloween, that is our goal. We will be sad when we leave the unit here, because love everyone sooooo much. We have developed great relationships with wonderful people and are so blessed for them to be with us through this process. They have been with us through everything and we have never been to TCC before. So we are going to meet new people and everyone will have to learn about Jenna. But we are just looking at it as one step closer to home. :)
So when we came in this morning she was doing fine. Justin and I majorly slept in on accident and did not get here until about 11:30. I felt so bad. So, Jenna had been aggitated this morning, not cooperating for the nurses. But after she got some more pain medicine and her Ativan, she is much more relaxed. She was on a trach collar trial and went for almost four hours, she was tired at the end. They changed her Lasix over to by mouth, and started back her vitamin and bowel regimen which had been held prior to surgery. They also did an echo today because it had been a month since her last one, so we will see what they say in rounds about it. So she is resting now, and hopefully she will for the rest of the afternoon. Maybe if she is doing well, daddy and I may try to go to the Reds game for a few innings (they are playing the Cardinals-daddy's fav). We will see.
So, hopefully she will continue to do well. We want to thank everyone for the support and prayers, keep them coming, they are working!! We love everyone and hope to get home soon. We will keep you posted.
Love, Jenny Justin and Jenna