11.18.16 Yesterday's Appointments

Aimee had a full day of appointments yesterday. We started out with a renal ultrasound, which is to monitor kidneys and bladder. Next, we met with her respiratory pulmonologist. He was pretty concerned about the continuing ulcer on her nose. We also discussed the plan for this sick season, getting stocked up on supplies, and determining what specific numbers mean we need to get doctors involved. It really gives me peace of mind to have these criteria agreed on between us ahead of time. From this clinic, Aimee was sent to the lab for a blood draw to check electrolytes and carbon dioxide levels. We then met with the Urologist to review the ultrasound findings, which were perfect. We increased the urinary cath size and finally ran over to the pharmacy for meds. 

Monday is the long awaited appointment with the genetic neurologist to learn all about KCNQ2.

11.17.16 Another Language

Waiting in the radiology department for an ultrasound. A little girl has come to sit across from us with her dad. She is moaning and making sounds like Aimee does. Aimee is so excited. She is talking back to the girl and kicking her feet whenever the other girl makes a sound. 

This little connection makes my heart happy. 

11.14.16 Home

Aimee finished her study and we made it home. Though last night was a really rough night, even by Aimee standards. 

The EEG gave really good information and the preliminary review showed the best results she has ever had. We will know more in a week or so about the actual findings. 

11.12.16 EEG

Today is a much improved day. It has been a frustrating stay, because typically when you are admitted the job of making decisions and caring for the child goes from the hands of 1-2 parents to a committee of 10+. This stay was planned and she is perfectly healthy. Simple, daily tasks must be approved. It took hours to get her on bipap, because I had to consult with the neurologist, the wound care specialist, and the respiratory therapist first. I had to get special approval from the dietician and the formulary nutrition room to pour the prescribed formula liquid hope that I brought into the feeding bags without diluting it. They insisted that it would not go through the pump, which is the same pump I use at home and that if any water was added I would not be allowed to mix it. It would have to be done in the nutrition room. 

Now that we have established what is allowed and had bandaging for her nose wound approved, ect it is much more calm. The staff here are generally very helpful and friendly. Once they understand that I actually know how to take care of her, they start to give some freedom. I know they are just operating under the rules that are there to protect them and the kids. 

Wore herself sobbing through all the gluing of electrodes. Hoping to find little seizure activity after her most recent med increase. 

11.11.16 EEG

Aimee recovered finally from her cold and made it back to school on Monday and Wednesday. We are now settled in at Children's for an extended EEG to check on seizure activity. We'll be here for a few days. 

We have only done one of these extended EEGs one other time. Similar to the Sleep Study, we have to bring all our own things, including diapers, machines, meds, food, ect. It is pretty challenging and a good reminder of why we have decided to no longer travel with Aimee. 

11.2.16 Mending

Aimee is recoverying from this first cold of the season that started with that day of seizures at school a few weeks ago. We are working to slowly move her back to her normal feedings and routines. She is working with us to get her airway cleaned out and to rid herself of some eye infections. The one little challenge we are having in particular is an open wound on the bridge of her nose, which was created by extra bipap use. It is really difficult to get rid of skin breakdown on her face, because she still needs to use the bipap, still needs the cough assist, and because she keeps reopening it with her waving arms/hands on her own face. We are making an (unauthorized) attempt to put her on oxygen only for a couple of nights to allow the wound to heal. Praying her brain remembers to keep breathing and that her wound is finally able to heal.