Surgery #2: Day 7 & 8 Post-Op Report

Thanks for all your words of support and encouragement and prayers over these past couple days. They have been helpful during this time of stress. Just to let you know, Avery was moved to a more private room yesterday, so we have a new number, yet again, for her room. It is 410-502-4001 if you need to reach us there. Avery has still been doing the back arching/screaming thing since I last posted. She is barely resting...4-5 hours a day at the most and usually no more that 3 at night (actually it is usually after 3 am before she finally rests). That means the overnight person is not resting much either. In fact, Avery is usually most comfortable when you are most uncomfortable! See, she is not sleeping well in the crib...she is mostly sleeping on us. Lying on her back and stretched out is the least comfortable for her, so the crib is not the best spot for her right now. I stayed over on Mon. night and then stayed into the afternoon on Tues. so that I could get the doctors attention to focus on Avery and her current distress. On Monday evening, she was in such agony every time they would start to feed her. Finally, at midnight, Jon and I asked them to just stop the feedings and put her on IV fluids overnight so that her stomach could have a break and she could try to rest. She ended up only sleeping a couple hours on me. She screamed that next morning from 7:30 until 8:15 non-stop and was very distressed. So, when the docs came around, I made them realize how upset she was and said that something had to be done to help her. Dr. Jallo ordered a head CT to rule out anything there and the pediatricians finally ordered an x-ray for her stomach/intestines. They kept her off feeds until later in the afternoon. Around noon, after being off feeds for 12 hours, she was the best we had seen her in days. Everyone is agreeing that it is stomach/GI related. While she is being treated for reflux, no one is sure that reflux is the primary problem (actually they think it is more likely a symptom of another problem). So, the pediatician in thinking that maybe she has a bit of a GI bug that is causing her problems. She has had so many loose stools and you can hear her gut moving in big waves (it is not a contant whir of movement, but these big, sudden and loud "rurr" sounds). If she is calm when that happens, it's usually not too long before she is upset again. The x-ray showed that she has a lot of air in her intestines...so those things all point to a GI system that is, at the very least, out of whack. So, it looks like it will just be slow going trying to get her GI back to normal...trying to keep her comfortable (hah!) in the interim. At least the resident last night finally listened to our request for Carafate and gave orders for that to be given. We were just like, "Hey, it is worth a shot. You've been willing to give her Ativan, benedryl, and pain meds without fail and without seeing great or consistant relief with them, so why on Earth can you not try giving her this." We had gotten the idea about Carafate from another parent whose child had surgery for HME and then had severe reflux problems after. It seemed logical that if it worked for her daughter, maybe it could work for Avery. I think sometimes the doctors just don't appreciate that you, as parents, might have something beneficial to offer regarding treatment of your child. I'm sure that parents talking to other parents of children who have gone through the same sorts of proceedures is their worst nightmare. They want us all to know that each child is different, even if their diagnosis is the same (you know, like that stock caveate "past performance is not a guarantee of future results"), so they dread the "but so and so did this" or "so and so said this worked for their child." Anyway, we parents are very thankful to have each other as a resource. Hopefully, she will start to improve over the next couple of days, as she is off her continuous pain pump and off the steroid (given to conteract the brain swelling from surgery). We are certain that those meds have not helped her GI tract any. If she doesn't start to tolerate the feeds better (as they are slowly reintroduced), then they are going to have us go to the Kennedy Krieger Institute. She can be an inpatient there and they have really great feeding specialists who they think would be better to deal with her if it doesn't start to resolve here soon on its own. She also would have much less exposure to potential infection risks there as opposed to the hospital. She would also be able to get physical, occupationl, and speech therapy there as well, as they are primarily a rehabilitation establishment. They have a really good reputation in that field too. So, that may be where we end up in the next day or two. It probably would be a good thing, especially from the therapy standpoint. She hasn't been able to get much therapy in these past 4 weeks because she can't be very cooperative because of her discomfort. We'll see...I'll let you all know what happens. Jon is with her now. He relieved mom from the overnight this morning. I'm not sure how things have gone the past few hours. I only know that she still didn't sleep but about 3 hours after 3:30 this morning and then was woke up by a resident who opened her eyes to check the pupil response with a flash light. That ticked her off and set the whole wheel back in motion then. We are going to post a sign today that reads, "NOTICE: If you are not Avery's primary doctor or one of his/her immediate representatives, DO NOT examine or disturb her if she is sleeping without checking with her parents/caregive first! She is sleeping so very little at this point in time (because she is in such discomfort) that it is imperative to her healing to be able to rest when her body finally allows it. Thank You from Avery's Management" It is seriously ridiculous that they have to touch a sleeping baby at 6:30 in the morning! Jon and I have been good about not letting them touch her when she is finally resting, but this resident kind of snuck up on them this morning. Everyday it seems a doctor is asking where her vitals are and are shocked to see no blood pressure reading from over night. We tell them, "You can't get one on her when she is so upset, and when she is finally calm and sleeping, we aren't allowing anyone to touch her. Sorry. You'll have to deal without it." So, I think the sign is in order. We are receiving you cards and packages/gifts. Thank you so much! We love the surprises and the great thought that you are putting in to them. Until I get the chance to send you individual, more formal THANK YOUs, please know that we are so very grateful and touched by your thoughtfulness. Much love from all of us to all of you!