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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. 

3.10.18 Happy 9th

We celebrated Aimee’s 9th birthday last week with balloons, icing snowflake cookies, dancing, finger nail painting, presents, and watching a movie together. Aimee LOVED it. She laughed and danced the day away. 

2.23.18 Magec Rods

Aimee spent Wednesday in clinic for wheelchair adjustments and her first magec rod expansion. I wouldn’t have ventured out with her yet as she is still recovering from a cold, but her nurse was with us to help her stay safe. It was a bit chaotic with all the kids and all the suctioning and all the meds we had to pick up, but we did it! Because her appt had been messed up the week before, we weren’t able to have the surgeon do her intial expansion. The nurse practitioner was the same one who had brushed us off with Aimee’s wound stuff. We don’t have much confidence in her and, honestly, this is experience didn’t inspire more. We were told by the surgeon last week that the left side would be expanded 2mm. She ended up expanding it 8.1mm after 15 minutes of head scratching, contradiction, and discussion with the ultrasound tech. It was not inspiring. In the end though, Aimee is okay, if irritable, following the expansion. 

Monday we had our first night with an overnight nurse. It was exhausting as I needed to stay up to train her. Hopefully after a couple more shifts with her, it will mean more sleep instead of less. I never would have believed that I would agree to a night nurse in our home that was a stranger. It is not easy to accept, but we are ready for the help. 

Aimee has been enjoying listening to audiobooks lately. Yesterday she listened to part of the Jesus Storybook Bible and all of Mr Popper’s Penguins. It is pretty sweet to see her brothers (usually Caleb) sneak into her bed to listen along with her. If anyone is looking for a gift to give Aimee for her 9th birthday next week, she would definitely enjoy amazon audible gifts to build her collection of audiobooks. 

2.18.18 This Week

Unfortunately, Aimee is in the middle of another respiratory bug. We’re using all our tricks and so far staying ahead, but the timing isn’t great. Her nurse had vacation scheduled and we got hit with a snowstorm that has our power knocked out. Thankfully, we have been given a generator to run her equipment, but it was a pretty tough night last night as we didn’t have the generator prepared and the power went on and off. We did inhalers, cough assist, deep suctioning and managed to keep her at okay levels. 

Other bits of news from this past week:

Monday Aimee started school for the first time since June. She was so excited when she heard the school bus pull up and enthusiastically participated all day. We were pretty surprised, given that it was a new school and that she has been so lacking in energy lately. She made up for it with some tough days and then this sickness unfortunately. 

She also had 2 appointment days. We met with her neurologist, who decided to double one of Aimee’s seizure med doses to attempt to rid her of these more frequent clusters. We are slowly moving the dose up over this next 4 weeks. 

We also took her in for spine x-rays and her first rod expansion. Unfortunately, this appointment was scheduled incorrectly and after a long delay, we ended up only getting the x-rays done and having to return for the expansion next week. 

This coming week, we will be attempting the addition of a night nurse 2 evenings a week. It seems a bit unreal, but to have 2 nights a week that we don’t have to perform her 90 minute bedtime routine, don’t have to wake up to give two sets of during the night meds, don’t have to respond to o2 alarms or bipap leaks, and don’t have to do repositioning to get Aimee settled back down... it may end up being a big blessing and help us in our quest towards restored health. 

2.9.18 Until We Meet Again

Our hearts are broken for our dear friends right now. Their sweet girl, a special friend of Aimee’s, passed away earlier this week. We used to live close by and drove through a snow storm to meet them when Aimee was nearly 2 years old and Cami was only 4. We had laid the girls together on a cushion of blankets on the floor and took their sweet picture together.

 It is bitter to imagine the pain that they are experiencing, the devestation and torent of emotions. I could hardly bare to drive Aimee in for her appointment days yesterday and today, to take her to the hospital where sweet Cami spent her last days. Our hearts are tied to this family always and we are crying, grieving with them. 

I did manage to make it through the entrance for Aimee’s clinic appointments, though I wanted to turn around. She met yesterday with her Pulmonologist. Her nurse at home has been concerned about decreased lung sounds on her right side caused by some mucous plugs. We are increasing her cough assist frequency and using more inhaler treatments even when she is well. The doctor is wanting us to use her bipap with her high heart rates during the day or when she needs oxygen for periods longer than an hour, as he is concerned about avoiding pulmonary hypertension as much as we can. He had us do a blood draw for electolytes to check her carbon dioxide levels again. Her September count was high for her (her normal is already high). 

Today we met with the GI Nutritionist. Aimee is quite slender, though in the healthy range at 15th percentile BMI. We would like to get her more of a buffer, get ahead of any challenging sicknesses ahead. We are going to attempt a small increase in formula to add some extra weight. Hopefully she will tolerate the increase. We also had her zinc and vitamin c levels rechecked with a blood draw today. 

Aimee starts school again on Monday. For now her nurse is contracted to ride the bus and attend with her. We are praying that this becomes the permanent situation. It would definitely be the ideal. 

2.1.18 New Life

I have so many words of gratitude to express to so many people. We have been carried with many gifts and have not had to worry about any bills being paid. It is incredible that after this long season, we are not holding unpaid bills in our hands. Thank you for walking through this with us and caring for us in such practical ways. 

Aimee is doing well. She is just recovering from a respiratory bug that she has been fighting for a couple weeks. It was a much easier sickness to handle due to the breaks in care that the nurse provided. Also, we did not have to struggle with dehydration and malnourishment due to the j-tube continuously feeding her intestinally. 

Her wound officially closed and we got the all clear from the wound care dept. There is only a simple dressing left and it shouldn’t be needed too much longer. 

She is having more seizure activity again and still only tolerating short periods of activity. She is spending most of her time asleep in bed and needing more middle of the night care. She is just not her happy, comfortable self still. 

I have been dealing with a lot of ramifications of new supplies, new home care issues, new prescriptions, ect. Insurance makes every step complicated. We are also in the middle of getting nurse care set up through the school. This has required a lot of help from the Medically Complex Care doctors at Children’s. We are hopeful to finish up that process in the next week and attempt starting Aimee back into school. She hasn’t been since June of last year. 

For me, the nursing hours has been life changing. There has been so much freedom that I haven’t experienced in years. It is amazing! I have been able to take the boys to the library every week, church events, and errands. I can meet up with another mom or go to free community events. The world has opened up. What I am really most excited for is the ability to focus on the boys and their learning. 

Aimee has multiple appt days during each of the coming weeks. Finally going to get all her providers caught up on her new status post surgeries. Hopefully as the weeks progress, we will see more moments of Aimee returning to her typical self than we have so far. 

1.20.17 Learning

Today is a good day, so today I will write to you. We brought Aimee out to the couch and watched a movie all together as a family. First time we have been able to hold and snuggle Aimee in 3 months. It felt perfect, yet very different with how stiff and tall she is post spine surgeries. 

There have definitely been some tough days. Weird symptoms that don’t add up together and that come and go. Like some blood in her farrell bag (drainage from her stomach). Random fevers. Sometimes needing cathing all day, sometimes not making urine, and sometimes doing it all just fine herself. Crying days where pain meds don’t seem to help. J-tube clogs that have caused us to lose precious hours with fluids. (Thankfully we have been able go get the clogs out ourselves so far. If we ever can’t, she has to go into Interventional Radiology at the hospital for a new tube.) Days with lots of suctioning and some congestion, then days with a dried out tongue. Days with multiple bags full of air drained from her stomach. Days with lots of discharge. We’re doing our best to learn and follow her cues. 

In really good news, the wound continues to heal every day. We are changing the dressing and excitedly seeing positive progress each time. 

We are working hard to get documentation together in the hopes of sending Aimee’s nurse to school with her. It sounds like it may be a battle, but at this point, we don’t feel that it is the right course to send Aimee with an aid/para only. Thankfully the hospital Nurse Care Coordinator and Medically Complex Care doctor are up for writing letters to the district detailing Aimee’s needs. 

Speaking of the nurse, it has been such a blessing on the days she is here. We have been able to go grocery shopping with the boys, take them to the library, catch them up on dentist and doctor’s appts, and attend church! Aside from having days where I can be cleaning or doing activities where Aimee is out of sight range. It is such a strange and beautiful freedom, for which I am beyond grateful.