10.17.18 One Year Later

Today marks one year since Aimee’s first spine surgery. A year of recovery and change for all of us. Honestly, I thought by now we would be confident that agreeing to the surgery was the right choice. There have been positives certainly and she has healed fully. We are actually going in on Monday for her 3rd rod expansion. I am hopeful that year 2 will bring more enjoyment and life back to Aimee. 

So, this past few weeks. We have had issues with Aimee’s wheelchair van, which have now thankfully been fixed. The pivotol element, the ramp, was not functioning. Thank you so much to a couple dear people who sent Aimee funds this past month that covered a good portion of this cost. It is now working more smoothly than it ever has for us! 

Aimee had a dentist appt a couple weeks ago at UW. Thankfully there is a new dentist there that seems a lot less concerned with surgically removing teeth. Due to medication, Aimee’s gums have grown over baby teeth. There is still the possibility that she will have to have them messed with in the future, but thankful to put that aside in my mind. 

We met with Otolaryngology a couple weeks ago to get medical clearance for Aimee’s new hearing aids. A funny insurance hoop that must be jumped. It did give us our first chance to utilize the new North Clinic of Seattle Children’s that was built in Everett. It is incredibly close, less than a 30 minute drive. And there ends the positives. I have been fairly disappointed so far to discover that it was not built with disabled children in mind at all. It seems to have been designed for looks over function, as it is very challenging to get the wheelchair into the rooms, through the front door, and there is no changing space anywhere for larger kids/young adults. A big disappointment. 

To swing back to positive, last week we had a 2 hour communication evaluation done by the speech language pathologist at children’s. It was amazing! She is going to help us get Aimee beyond just pushing communication buttons for cause and effect games. She even had us play some interactive games with Aimee in the clinic, similar to Simon Says. It was wonderful, beautiful, and gave me hope. From here we are going to attempt to have DDA funds cover a couple communcation devices. 

We are also hoping to get Aimee an iPad again. The SLP recommended that we get one to use with the communication devices. Plus, Aimee did so well with it in the past. When hers died, we got a kindle for her instead since it was so much cheaper, but it doesn’t have hardly any apps available for her and is much less sensitive to her touch. It also is a dimmer screen and hard for her to see. I am looking around at maybe a refurbished iPad with a larger screen for Christmas. 

Earlier this week, Aimee had a prolonged EEG done. We are just double checking to ensure there are no underlying seizures causing Aimee’s major lack of energy lately. It will be about 5 weeks until we have full results.

In general news, Aimee has been sick this past week or so. She is holding steady, though having some pretty intense choking episodes. She has also begun desatting during the nights again this past month, which had been fairly resolved for the past 6 months previous. 

More updates to come as we navigate our way forward with/without school and communication. Praying that we can see our next steps clearly and can help Aimee wake up to the world around her again. 

9.25.18 The Way Forward

Dear friends, I apologize for my lack of communication over this past few months. It has been difficult to process what the way forward is for Aimee now. She has had a busy summer of clinic visits and exams. 

She had a sedated hearing exam, which has resulted in a set of new hearing aids being ordered. I am excited about these, as they will be blue tooth enabled. 

She has had numerous blood tests, some to show that her carbon dioxide levels have increased much too high. We are attempting some changes in the amount of breaths that her bipap makes her take per minute during sleep, an increase from 18 to 22 breathes. The fact is that all day long she breathes too shallow and does not expel enough carbon dioxide, but we hope to have enough of an improvement during sleep to improve her blood levels to a safe amount. If this is successful, we hope that we can leave the pressure settings alone. 

She has continued to have low iron levels. She has been receiving supplementation for a couple months in the hopes that her energy levels would increase. No improvement noted. 

She has started a medication to allow her stomach to relax and expand with the goal of being able to clamp the farrell bag (stomach drain). So far she is tolerating it being clamped some days for an hour, which is progress. 

She has had multiple rod expansions for her spine, which have gone very well. 

She has started school again, but we are strongly considering pulling her out. She just does not have the energy to stay awake or alert in class. She no longer seems to enjoy being there, so it is not worth the risk of illness and the great amount of paperwork, meetings, ect that it takes to keep her in school. At this point, I’m not sure if I will just include her in our own homeschool activities or if I will pursue home based public school. 

We met yesterday with her neurologist. There is concern that her lack of alertness is due to underlying seizure activity. We had attempted a dose increase earlier in the summer, but it did not affect energy, though we noticed less events. We agreed to have a short EEG performed in a couple weeks to see if we are missing seizures.

Overall, Aimee does have alert, engaged times, but she has them much less often. Generally she is either sleeping or disinterestedly staring. I have so many questions and am so concerned about her lack of participation in life now. Please pray that Ed and I would be given wisdom. I feel that Aimee is hiding away, but wether it is due to pain, seizures, energy levels, fear, coping... Jesus, help us to love Aimee well. 

-We got to see our favorite NP while inpatient earlier this month-

-Aimee’s first day of 4th grade-

9.5.18 Leaving

Our favorite place to leave 

9.4.18 Hospital

Currently inpatient with Aimee. We pulled an all-nighter in the ER and were admitted around 5am. 😴 Aimee is well, but her medications that we gave through her j-tube (intestines), drained right back out of her g-tube (stomach) into her farrell bag last night. Not supposed to happen and not an easy fix. We called the GI doctor on-call and were sent to the hospital. Hoping that we will be able to get her tube replaced in the Interventional Radiology today. Finally got her an IV, some meds, and some fluids around 4am. Finally got her respiratory equipment set-up for her to sleep around 6am. They are watching to make sure she has no problems (seizures, ect) come up from the lack of meds and fluids. 😴 

5.29.18 ER visit

Aimee has been having some return of digestive issues with bloating, pain, and gas. She has been retching some days and had a couple instances of difficulties with her cecostomy flushes. Last week we took her in to the registered dieticien who wants to substantially increase her calories again and to redo bloodwork. We put off the first recommendation for now, due to the distress she is already experiencing. Increasing calories would mean increasing rate and causing more stress on her intestines. 

I’m glad we waited, cause Sunday it all came concerningly together. She was with her nurse all day and when we came home the nurse was worried. Her farrell bag contents (draining from her stomach) was bloody and she had vomited several times the same dark bloody color. There have been days with some blood flecks, but never near this amount. Her abdomen was bloated and very sloshy. I called the GI doctor on call and they asked that we bring her down to be seen in the Emergency Department. Because we had called ahead, the doctor had ordered several tests, had a nurse assigned, and registration was expecting us. It made the whole process very smooth. In only 4 hours we had an IV placed, panels of blood tests done, ultrasound, x-ray, and video x-ray performed. All appeared consistent with previous examinations, which was reassuring. They concluded that it must be a bleed somewhere in her GI system, but they didn’t know where it originated. They gave us specific instructions of what to keep our eye on and when to bring her back. They prescribed a higher level reflux med, hoping that will resolve the issue. We got to bring her home and now have to troubleshoot her daily routines from here. 

I’m disappointed as this medication is one I had weaned her off of several years ago due to its effect on nutrient absorbtion. She was maxed out on the lower level med though, so we have to at least trial it for a couple weeks to see if it helps. 

5.18.18 Good Reports

A few key updates to share for Aimee. 

First, her bloodwork finally is showing her carbon dioxide levels have decreased back to her own version of normal. This is really good news and a big relief. 

Second, concerns have been expressed during recent appointments about her left hip. Repeat x-rays show that her hip is still partially out, but has not progressed noticeably in the past 6 months thankfully.

Third, not so good news, her right elbow has lost 10 more degrees of extension in the past 6 months. Although her left elbow is worse, her right is the one she uses to touch, explore, ext. Her rehab doctor asked that we at least meet with the orthopedic surgeon to discuss a lengthening procedure. We will see them at the end of the month. I think it may be a difficult decision. We really don’t want her to lose any ability she has to engage. We also really don’t want to put her through any surgery, even minor, if there isn’t a clear benefit. Hopefully talking with the surgeon will make the choice obvious. 

Aimee continues about the same. She has some good moments where she is energetic, even hyper. Most often she is tired and staring, unengaged. We’re fully enjoying all the good moments. 

4.10.18 Last Month

It’s been a month since I posted an update to Aimee’s friends. I keep waiting for things to settle completely before I post, but it feels like every few days it is a different challenge or a new positive. Aimee has made the rounds through a lot of appointments this past month. We had med changes, new equipment, progress and decline. 

Here are the highlights. 

-In positive news, we were able to increase the speed of giving meds from 1ml a minute to 1ml every 45 seconds. Doesn’t sound like a huge change, but with 156 mls of meds each day it reduces us from 2 hours 36 minutes to 1 hour 57 minutes. 

-Her seizures seem to have responded to a medication increase, which seems to have allowed her to be more alert again. 

-About half the time, she seems to have the light in her eyes again. She still spends most of her time in bed now. When she is out of it very long, she gets uncomfortable and distressed. She has returned to school a few hours a week (as much as possible between appt days) and is responsive and engaged there again. 

(Playing at school)

(Classmate reading her a book)

(She loves having snuggle time with her brothers)

-She had her GJ tube replaced in the Interventional Radiology room and that was successful. 

-We were able to do a slight increase of calories and she is regaining the weight she lost over this past 6 months. 

-We also were able to get a decent enough mouth x-ray finally at the dentist. One of her baby teeth still hasn’t come all the way through and I was concerned that there was an issue there. She also has quite a bit of gum overgrowth probably due to medications. All is well for now according to the x-ray, so that is a relief. 

-In negative news, we met with her GI doctor and we are disappointed to see that that her function has declined on both ends. She is still requiring continuous draining of her stomach via farrell bag. She is being fed continuously through the j-tube into her intestines for fluids and nutrition. We had hoped that she would recover the use of her stomach, but since we have seen no progress, the hope of that is slim. We have had to continue her on a low dose of antibiotic 3 times a day to stimulate motility. We have also had to concentrate her cecostomy flush dramatically, as well as, using an adult dose enima. It is working again and she spends 75 minutes every day getting that done. It seems that everytime we increase in this area, she does well for about a month. If this trend continues, it is very likely that we will need to divert and surgically place an ostomy. 

-With her pulmonary appt we did labs to check carbon dioxide levels, which were higher in December than her average. The test results came back even higher still. 

-Aimee has had several respiratory illnesses, but having the nurse here has been a great help in keeping her at home. First, because it gives us a break, but also because the nurse is able to help us monitor risk. She is also really good at getting out mucous plugs! :) 

-We did not continue with the night nurse. It was not comfortable having a stranger take care of Aimee during the night or having her in our home while we slept. We decided to follow our gut on that and discontinued her hours. 

-Aimee’s back is looking good, though she does not seem as straight as she did post surgery. We are noticing her pelvis is tipping more and more, which seems to be causing her whole body to twist. At the moment this means we need to monitor her skin closely to ensure that the extra pressure does not cause sores to develop.