We made it through sickness and no nurses. We finally had a new nurse start last week. She seems to be a good fit and is very attentive to Aimee. Ironically, we were approved to have our nursing hours increased from 56 to 70 per week right during this time. This nurse is able to cover 3 straight days, so we do have help, but it is a long stretch without. Especially difficult to make it through appointment days without help. To be honest, I feel like a wrung out rag after yesterday’s run on our own. The kids were such good listeners though that I took them out for doughnuts as a reward afterwards. 
We are praying for another nurse to cover the remaining hours. Praying that they would be available in time for us to get a good schedule and routine before baby girl arrives. So far the nursing company does not seem very motivated to fill our hours. :(
Anyways, Aimee had another sleep study done. Ed ended up taking a day off of work so that he could stay down at the hospital with her. It was a tough one, not because of the study, but because she had multiple post-cecostomy leaks. What a mess and in a place that has no accommodations. We were praying that everything stayed the same. We did not want any pressure changes and I was really worried about losing our oxygen if she happened to not need it that one night. We would be in the hospital so much without it. Results were supposed to take a good month, but I’ll come back to those.
We met last week with the occupational therapist to work towards getting Aimee a car seat. $2300?! Yep. 😱 We have had some car trouble with the van come up and have had to cancel appointments. The van also does not run well in extreme weather and it makes me really nervous to not be able to get Aimee out of our place. We want the car seat as a back up option. As an added bonus, once the baby arrives, our whole family would be able to fit in the suburban we picked up. No idea how we will get Aimee in and out of it (especially how to get her wheelchair in and out), but just something else to figure out along the way!
We also met with Aimee’s GI nutritionist last week. Aimee has been dropping weight this past 6 months. She is down to a BMI of about 12, less than the 1 percentile for her age. She is right about 5 feet tall (approximately), but only 59 lbs. Yes, we don’t expect her to typical, but getting thinner isn’t helpful, especially when she just keeps getting taller. Anyways, we are going to very slowly go up on calories. It isn’t as easy to do now that she is fed intestinally. There is a possibility that with her sicknesses this winter/spring that she has not been absorbing her nutrition as well as she would typically as well.
Wednesday we had appointments with her Foot Orthopedic doctor and the Orthotics department. I am pretty bummed because they want to increase her time in the AFO foot braces from 10 hours per day to 22 hours. It is such a long time to be in braces, particularly during the summer. We had new molds taken while we were there to get updated braces with some different toe straps. She is having more significant toe contractures and there is a possibility that tendon releases will need to be done in the future.
Yesterday, Aimee had an appointment with her Respiratory Pulmonologist. After her illnesses, he said she is sounding clear, but as per her usual, she is breathing very shallow. So shallow it is hard to tell if she actually does have clear lungs.
He was able to go over the results from her sleep study with us as well. Apparently they were able to collect a ton of data from this study, more than they have ever been able to collect for her. They worked hard to go through the data so that this Pulmonologist could review prior to our meeting with him. During the study, they were able to make a lot of tweaks to the settings during that sleep and want to make a lot of changes to her bipap. Her main respiratory issue is carbon dioxide retention. Due to her shallow breathing, all day long it is retained, but during sleep it is even worse. She has significant amounts of obstuctive and central apneas still as well. So, they want to increase her pressure for breathing in, increase her breathes per minute to 24, and adjust the sensitivity of the machine. They are hopeful that these changes will decrease her carbon dioxide levels overall. They did a blood check of her levels yesterday and will repeat it in a month or two to see if these changes have helped. I’m nervous, because everytime she has had her pressure increased at all, she has ended up with terrible/scary desatting.
In good news, the Pulmonologist really took more ownership of Aimee’s care than he has before. He also told me that if insurance tried to take our oxygen that he would fight them tooth and nail. I’m so glad that I voiced my fears to him in that area.
We are so grateful for a beautiful, healthy girl as Spring weather is here on our little farm. We are expecting a new calf in the coming weeks and looking forward to the abundance that comes with that birth. :)
