Last week Aimee and I met with the feeding therapist in Seattle. Reintroducing foods to Aimee has been challenging and the success of our attempts varies greatly depending on other stresses in her life. We have been working on teaching her to use a communication switch/button while doing feedings as well, so that adds an additional complication. When she has a particularly busy day, when other people are around, when there are other noises, when it is a different texture...basically any unusual variable causes it to be too stressful and she either chokes very quickly or simply goes to sleep. However, for all of that, she is doing so well under completely normal circumstances. She is eating about 60 ml or 2 ounces during good feedings, which is a major improvement! The feeding therapist was very pleased with my report and has given me the go ahead to give Aimee as much as she can tolerate or is willing to eat. This of course brings me to a new issue... at what point do I give her less blended food. I am meeting with the GI Nutritionist next week and am hoping to come up with a plan for this. If she takes a significant amount in... I don't want to overload her little tummy by just pumping her full afterwards. I am considering changing her feeding schedule from 3 meals a day to 3 'meal' boluses and 2 'snack' boluses.
Aimee's preschool had an open house last Thursday. Aimee and I took Ed along to show him her artwork and meet the other parents. They made us a little book with pictures of Aimee in class and some of her paintings. Actually, at the last class, I left Aimee in the class by herself for 20 minutes. I am working my way out and kind of forcing the teacher and nurse in the classroom to learn how to care for her. They still seem a bit nervous, but I am hoping to just increase my absences. Aimee will do great I'm sure. Funny how that is what I was worried about before. Now it is the poor teachers I'm concerned about!
Monday we had a baby appointment with the midwife, which are every other week now. Everything is going well, however, the midwife had a serious discussion with me about after baby Caleb is born. She had asked me who would be caring for Aimee in the 4 weeks after he comes. I honestly had thought that Ed and I would care for her and then when he went back to work... well it would be me caring for her. It never crossed my mind that I wouldn't be allowed to lift her. Hmm... apparently I still have a few items to sort out!
Yesterday, Aimee and I drove down to Puyallup again. And, of course, it wasn't the last time. We have to go back in 2 more weeks for the FINAL fitting of her hand mitts and elbow braces. I am almost hoping at this point that they don't work, so I don't have to make another 4 trips down there in 6 months.
This morning we had the follow up appointment to the sleep study performed in September with Pulmonary in Bellevue. I wasn't sure what to expect going into the results appointment, since Ed had done a sleep study recently with a significant lack of helpful findings. However, there were findings in this one. They determined based on her test results that she has both obstructive sleep apnea and hypoventilation. There were several different issues during her study, decreased oxygen levels, pauses in breathing, high CO2 levels, ect. She slept for 404 minutes during the study (which I can't even believe it was that much considering all those wires!) and had 45 arousals during that time. They did put her on oxygen during the study, which improved her sleep efficiency some. They showed me graphs of her sleep cycles and she didn't have any resulting in dream sleep until they put her on the oxygen.
So we headed on over to another building for an x-ray of her adenoids, as well as some blood work to check her CO2 levels. Her adenoids were mildly large, but not obstructing her breathing. Her CO2 levels were high, which confirmed what they saw during the study.
The doctor said that given Aimee's underlying condition, especially her low muscle tone, it is not surprising that she is unable to breathe normally. They decided to put her on a BiPAP machine with back up oxygen. It is basically the same as a CPAP (mask with air pressure to keep the airways open), but instead of continuous pressure, this one will have a higher rate of pressure for breathing in and a lower rate for breathing out so that her airway stays open, but that she has the ability with her muscle tone to breathe against the machine. They will also have a oxygen back up in the machine so that if she has a pause in breathing for longer than 10 seconds it will automatically give her oxygen as well.
The machine that we will be getting will have a mask that covers just her nose, because she has so much saliva they are worried about forcing it down her throat. So we'll have to strap her mouth shut at night to make her breathe through her nose, but hopefully still allow her to drool out any excess fluids. I'm not sure how that is going to work, especially if she has to cough or it she chokes... we'll have to figure that out I guess.
While we were there, they also taught me the basics of doing chest physical therapy to help Aimee clear her lungs when she is congested. Helpful information for sure since she has such difficulty with choking when there is any congestion.
This afternoon we had a speech evaluation. I wasn't sure how Aimee was going to do after a busy day at the hospital, but she actually was able to stay awake through about half of it. We are working on communication devices and teaching Aimee cause and effect, with the ultimate goal of making choices and independence. It is a slow, slow road, but one where I am very excited to be seeing little steps of improvement. Amazingly enough, Aimee also managed to have a bit of energy left after speech therapy for her occupational therapy appointment. All these different appointments and she is still smiles at the end of the day. It is hard to know sometimes when to say 'enough' and when to be thankful for any little thing that might benefit her.
Apparently it was time for a new challenge. I'm a little nervous to figure out the process with the BiPAP machine, but I am hopeful that this will help Aimee to get quality sleep and cause her to have more energy during the day. It may even help in her development if she is able to get real sleep! My head is spinning a bit from a day full of information, but one more piece of the Aimee puzzle has been discovered.
