7.19.17 Surgeries

Yesterday was a big day full of preparation for what is to come. We met with the PASS/Anesthesia clinic to get the approval to go ahead with scheduling the spine rod surgery. Thankfully we had already done the sleep study (still no official results), but they did want to see some blood work to check on her nutrition levels and figure out a plan for the GI situation. Ideally that plan being surgery. Also, they recommended that we meet ahead with OT/PT for a wheelchair consult to see if anything needs to be changed with her supports and the back rest for after spine surgery. We were also warned that because this surgery will have to be done with her laying on her stomach, there will be a more difficult respiratory recovery time. The anesthesiologist said that even someone with normal lungs has a lag time getting back to normal, even more so for someone with restricted lungs.

After the blood draw, we met with the Urologist. His recommendation is that we consider doing botox injections into the sphincter that keeps the bladder closed. He said that in people with tone issues, this can be another area where tightness can occur. However, if we do that route, we have to repeat injections every 3 months. Rather than start that, I requested that we attempt to sort out the GI issues first and hope that it helps to resolve at least some of the urinary issues. We would like to see her need less catheters both for infection sake and for care, but I am not quite ready to sign up for an every 3 month botox.

Lastly, we met with the GI surgeon. This is a tricky choice, because neither the doctor or us are confident that this surgery will solve the issue, however, we feel that it needs to be tried before moving to the final resort of the colostomy bag. Yes, we may end up there and yes, people do manage with them, but, when/if we get there, it would be for the rest of her life. We need to at least try the cecostomy tube, because we also don't know that it won't work.

Care wise, the c-tube sounds very similar to the g-tube. Obviously we would be using it differently, but we are already comfortable with all of the equipment, tube changes, and issues that are a part of its care. The surgery itself they will attempt to do laparoscopically and change course in the operating room to a larger incision if the abdominal wall is too thick. It should only be a few days in the hospital and may be used 1 week following the procedure (assuming all goes well).

From here we try to get this GI surgery done as quickly as possible so that we can proceed ahead with the spine surgery. At this point the earliest we can get the first done is mid-September, but we are on a cancelation list. There are a few prerequisites, like a contrast x-ray study, that need to be completed. We will get these done as quickly as we can over the next few weeks and then be ready to head into surgery if there is an opening. We hope to have an official date for spine surgery in the next few days. We are praying praying that we can get a date for October. Ideally for early October so that we can get through the hospital stay and the early recovery before the baby arrives.

7.13.17 Update

Two Fridays ago Aimee met with the dentist down at UW. It actually went really well. We were able to put off any major meddling for a future date with everything else she has coming up. She even was able to get a few of her teeth polished for the first time. :) 

Last Monday night we spent at Overlake Medical Center for a sleep study. She hadn't had one in 3 years and really needed it done before the anesthesia appt in preparation for the spine surgery. I don't have the official results yet, but Aimee seemed to sleep well during the study. I wish I could say the same for myself. ;) 

Aimee loved the 4th of July. Between the noise of the fireworks and sitting next to a warm fire, she was in her element. I believe the fire was actually her favorite. She was watching it out of the side of her eye as it danced around. Really kind of perfect in the dusk light for her vision. 

Last Wednesday we had another PT appointment that Aimee loved. She laughed and laughed through the different movements. The therapist put her in all kinds of funny positions (up-side-down!!) and it was apparently hilarious. We'll have one more PT visit at Providence to figure out our best home routine and probably come back every year or so to get this updated as she grows and changes.

This Monday, Aimee went in for a renal ultrasound in preparation for this coming Tuesday's appt with the Reconstructive Pelvic Medicine team to discuss surgery options. The ultrasound was fine, as far as we know. We really don't get results until we meet with the doctors. The only real comment that they made was on how much Aimee has grown in last 6 months.

This week has been really emotional for Aimee. She has had a couple of really uncomfortable, sad days. We evaluate everything when she is that way, all jerky and upset. It can be really difficult in Aimee to distinguish between pain, allergies, sickness, seizures, crankiness, infections, intestinal distress, and tiredness. There are always possibilities that nag in the back of my mind. Did she break a bone? Does she have abdominal pain? Is it another UTI? Is she just over tired? Were those jerky movements a seizure? Those times that we discuss and rediscuss with every hour that passes. Suddenly, a day or two in, she will start to smile. We scratch our heads, shrug our shoulders, and move on to the next phase. 

Last weekend we got to spend a day at the zoo with our DeVoe family. First time we have been back since Aimee's 3rd birthday. It was really fun to have the boys see real animals up close. Aimee  cooperated with no issues and we even found a decent bathroom bench on which to lay her down. Success!