As I posted before, the next option for Jenna to move in the direction of healing is surgery. Dr. E came by yesterday to discuss the situation and what the surgery would entail. So, basically close to 2 weeks ago it was noticed on xray that her right diaphragm was up again. He said that it would be hard to know if it had been up prior to this, because when on support through the bipap and vent, it completely expands the lungs all of the time, so if it was up, it would only be seen at certain times. So, the time of when it officially started is unknown. He said that they were hoping that she would start moving forward in her respiratory status by now (less need of oxygen through the day and at night through cpap), but she has in a way just leveled off. She is not improving, but not getting worse. So, he feels that in order to completely optimize her chances of going home on no vent assistance (cpap), the surgery needs to be done. By doing the diaphragm plication again via open incision (thoracotomy 2-3 inch incision on outside up to 6 in on the inside) he would be able to have a complete look at the area and plicate more areas if needed. Doing this is to help tack the area down, so when she breathes her lung completely expands. If it is not able to do this, then she works harder to breathe and if she gets sick, it increases her chances of not being able to breathe deep enough to get better. Jenna already has a setback on her plate-her left lung. She has a compressed airway going into the lung, plus her bloodflow to her lower lobe is non exsistent so there is no function there. So, since her left side is "not perfect" then her right side needs to be at its best. So, by doing this surgery, it should help her be able to breathe better, get off all of the assistance for the most part, and be able to get back to herself. Dr. E said that she will probably have pain for up to a week, and within 4-5 days be showing signs of improvement in her need for assistance when breathing. He said at that point, they will know how much oxygen assistance she will need to go home on. His expectation is that the surgery will help her (75% CHANCE), but there is still the possibility that she will have to go home with some respiratory assistance. The surgery is expected to have a 6-8 week recovery, again no lifting under her arms. He said that he does not expect it to set her back (going home wise) because we are still waiting on her stomach to heal. He said that the surgery usually takes up to 3 hours, but he said he would not be surprised if it took longer, only because 1. It's Jenna and 2. there may be scar tissue he has to go through (from her last surgery) and this will take longer. Currently she is scheduled for the surgery tomorrow as 2 nd case, to start around 12 or 1pm. This is the only time he was able to put her on the schedule, because he is completely full next week and then out of town and he does not want to put her off any longer. So, tomorrow it is. We asked how long he felt she would need the trach in, he said he would expect another month or two, but no longer than 6 months. Definately not long term. So, we are still learning for all of her care, and today they changed the actual trach to a new one (this has to be done every two weeks). This was interesting, and I will have to do it myself next time, but I watched it be done. Dr. E said that his indication for the surgery was not her xray, but her blood gas levels (norm 40s & 50s), which are in the 60s & 70s. Also, that she is still needing so much support after having the trach placed over 2 weeks ago. So, we can only hope that it will help her and that things start to improve again. He said that she was moving along well, but then she just stopped. He said that he does not know if the area came loose (stitches) or if the muscle relaxed. Who knows, he will not know until he is in there. He said it is no way for her to live as a toddler if she has to be on breathing assistance all of the time, and he wants her to go home and be herself again. So he knows that we and Jenna have been through soooo much and he just wants her to be better. We know that this is the best choice for her, because if Dr. E feels it needs to be done, then it is the best choice for her. Today, anesthesia came by, signed consent, along with Dr. E. Also, Justin and I bumped into Dr. Putnam (GI) in the cafeteria. We told him jenna was having surgery again, and he asked said that he would try to coordinate to do a scope of her belly at the same time since she is already under anesthesia. He said that he did not want to just give her alot sedation if he did not have to, because of her situation. But, he was able to coordinate the scope at the same time, so we are doing that during surgery tomorrow too. At that point we will know if Jenna is healing, and when she will be able to eat again. Cross your fingers that it goes well. If she is healed, he said we will start eating in the stomach, if not we will wait longer. We will see. Today, they also stopped her CLonidine patch (withdrawl med) and she is doing well from the change. Her bronchcoscopy is still scheduled for next Tuesday, they were not able to coordinate with Dr. E. in surgery. Oh well.
The past few days Jenna has been a little irriated, but they figure that it is because she is really tired from working so hard to breathe. She is typically very happy once she is back on her vent assistance (cpap). Hopefully once surgery is done, she will improve. SHe has also been sleeping lots too, she is just too tired to just about anything. Today OT came in the am and blew bubbles, which she tolerated well. This afternoon PT came by, but she was really tired and wanted no part of her. She tried to have her stand, which she did do better than before. But Jenna got tired and decided she wanted back in bed and basically forced herself back in by swingin her leg up and pushing herself back up. She ended up doing this twice and was done. She was breathing pretty hard after this, and PT decided the session was over since Jenna wanted it that way. Maybe next time, :) So, she had another apneic episode last night and the night before. She has been on her vent assistance (rate like a ventilator not cpap) for the past three nights and has done much better. So, they are letting her rest tonight because of surgery tomorrow. Hopefully she will not need this assistance in a few days. They are going to keep her sedated after surgery for about 24 hours and then start getting her awake on off the rate assistance. Hopefully she does well. So, she is sleeping now and we need to get rest ourselves before tomorrow. We will keep everyone posted on her status. Keep praying for her and us, it has been 8 weeks today since we came into the hospital. Never in my life would I imagine that we would be here this long, but at least we still have babygirl. There have been plenty of moments where I was not sure if we would even be going home, but I know that we will.. It will just take some time. We love everyone and thank everyone for everything. Talk soon
Love, Jenny Justin and Jenna