6.23.17 Process of Elimination

Poop is what it is all about lately. At least, that is how it feels around here. Yesterday we met with the GI specialist and Nutritionist. The short of it is that elimination is not going well. It seems that there has been a decrease in Aimee's neurological function in this area. The amount of times that we are needing to use a catheter for urine output is dramatically increasing as the success rate of enimas is going down. This is causing more infections and making it really challenging to leave the house. The specialist is recommending that we attempt a Cecostomy. This is both for Aimee's quality of life and in an attempt to not make her daily care decisions completely reliant on my knowledge of Aimee. Basically, in case something happened to me, Aimee's care would be more straight forward in this area. This surgery will be creating an opening into the top of the bowel and placing a tube for administering enemies from above. Initially the doctor decided that we should move ahead with a surgery that would disconnect the bowel and use a colostomy bag. After some discussion, we decided that it would be wise to try the Cecostomy (c-tube) before that more drastic course of action. However, the doctor is not certain that this will be a success in Aimee's case and, if it is a success, how long it will work for her.

The GI specialist is hoping to have this surgery done as soon as we can. However, we have to coordinate some appts over the next several weeks to meet with the GI Surgeon, the Reconstructive Pelvic Medicine team, Aimee's Urologist, and the Anesthesia team. There is a possibility that her Urologist may want to add another procedure on to this surgery to allow us to drain urine through a catheter in her belly button. There is also a possibility that the surgery may be more complicated by the scoliosis status.

Celebrating Elliot's 4th birthday

On Wednesday we met with Aimee's Sleep Pulmonologist. Aimee is doing well with the increase in sedative for sleeping. We did find out that the Neurodevelopmental doctor had written the prescription for "by mouth", which meant that we received really challenging little pills that have already broken 3 pill grinders (they usually last us 9 months or so). Thankfully the children's pharmacy will compound this medication for us to allow it to go through a g-tube and make that little headache go away. The doctor is still concerned with the condition of Aimee's nose and continues to look for other options that will work with her tiny nostrils and tiny head without touching the bridge of the nose. She also noted that we are well past due for a titration study to check that Aimee's current overnight oxygen and bipap pressure levels are sufficient. They were able to find a spot for Aimee really quickly, so we will have that done July 3-4.  It seems like most of Aimee's doctors don't like to wait around in her case for normal scheduling times.

Tuning out the PT at the previous appt.

Aimee had another PT appointment at Providence on Wednesday and did really well. In the previous appointment, I requested that no more positions/exercises be done with Aimee that do not allow her a resting spot for her head. She gets really freaked out and scared when, for example, she is over the edge of a wedge with no support. I can't blame her for that. Her head is a heavy weight for her. If you were to hand me something really too heavy for me and I had no clue how I would set it down or idea how long I would have to hold it...I'd freak out too. Aimee particularly enjoyed rolling down a long wedge during this week's session. Clearly she is a thrill seeker. :)

Last week, Ed and I met with a UW Genetic Counselor. We had an ultrasound and discussed what genetic testing is available. Unfortunately, it will be a few more years before they can test the maternal blood for just any genetic disorder, which means we would have to do an amnio to find out prior to birth. We are not willing to take this risk (1 in 400 chance of miscarriage with an amnio currently). Instead, the midwife will be able to pull blood from the umbilical cord after delivery and send that to the lab to look specifically for KCNQ2. We won't know as soon as we had hoped, but it will allow us to find out risk free as soon as possible.

Otherwise, the ultrasound showed a very healthy little baby BOY! I sure do like have brothers and sons around me throughout my life. :) Caleb is suggesting names as often as he can. Little Couscous (the current favorite on Caleb's name list) is very active and we are looking forward to knowing him better.