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.  

1.11.18 Done!

After over 6 weeks, we are officially done with the wound VAC therapy as of today! The wound has filled in nearly all the way and will now just have a dressing change done daily at home by us. And she can finally have a shower again!! Yippee!! :) We will have to continue to watch out for extra granulation tissue and use silver nitrate to burn that back so that the skin can grow. We are hopeful and excited to be moving to this last step towards healing. She will not have to go back into the orthopedics clinic until 2 weeks from now to check over the wound. Then in February will be the first extension of the growth rods. 

-Brenda, ortho nurse practitioner, has been a huge blessing doing weekly wound VAC changes at our home and weekly changes in clinic. Elliot and Walter were there today too, but not pictured ;)- 

In other news, we spent a couple hours in clinic on Tuesday with a PT and the wheelchair company working on her chair. The bigger she grows, the more she twists, the more challenging it is to get the chair to fit her correctly. We’ve been having more pressure spot issues, which could turn into pressure sores when she gets back to typical days spent in her chair. With a new back, seat, and headrest, we are hopeful to see a reduction of these spots and better support. 

Overall, Aimee is making progress. We’ve been having a lot of communication with GI from home to make different tweaks to her routines and meds. It is all so complicated now, but worth it, as she is less distressed and starting to have periods of alertness. We’re kind of figuring out her new routine while she is at home in bed. As she gets more comfortable, we will start to have her spend more time in her chair and start moving towards returning to school. An intimidating, uncomfortable step to consider, but hopefully Aimee will be able to participate in things she enjoys again soon. 

1.4.18 Appt Day

Walter, Aimee, and I went in for some appointments today. We started in Bellevue Sleep Clinic. Aimee has been having big desats 5-6 times each night. She recently had a change in pressure of her bipap and we are hoping another tweek will resolve the issue. Some kids with low tone are not able to tolerate higher pressures apparently. Seems that Aimee is one who has trouble with it causing her oxygen to drop into the 50-60% range. We also adjusted her doses of melatonin and clonidine that she takes nightly. Her blood pressure has been really concerningly low during sleep and this is a side effect of clonidine. Hoping that lowering her dose will not majorly effect her sleep. 

Next we headed over to Seattle for a wound VAC dressing change. Aimee was really worked up and in pain before the appointment. She had a wheelchair remodel done last week and it seems like something about it is not fitting well. I think the headrest is also pinching her ear to her hearing aid. She calmed down when I removed the aid and gave her some valium. 

The dressing change did not go very smoothly, probably cause we didn’t have Ed’s help this time. We had trouble with leak alarms from the machine that took several attempts to fix. Aimee did not tolerate moving in and out of her chair and kept choking/gagging. However, the wound is continuing to make progress. Some more silver nitrate was needed to burn off excess growth, but otherwise it looked healthy. Looks like there is a good possibility that we may be done with the wound VAC after 1 more week. 

We got out to the van to find that someone had parked on the dashed lines. I had to get her wheelchair up onto the ramp without having room to go directly. It is getting harder to this as her chair just keeps getting heavier. 

A tough day, but we made it home in one tired piece.

1.2.18 Nursing

It has been hard to know what to update, since things have been pretty steadily confusing. Aimee is still nauseous and retching in the evenings. She is still most of the time uncomfortable, sometimes with a low fever, high heart rate, and cramping (we think). She is desatting through the night again. She is rarely voiding urine on her own and isn’t producing near as much normal. We have managed to add 6 more mls of water an hour to her intake. 

It all feels very unfamiliar. We feel unsettled and uncertain. Symptoms we would normally assume are sickness or an infection, are maybe related to her digestive system not functioning properly? A new normal, new processes, more care are all fine as long as Aimee is able to be herself, to enjoy her days, to interact and play. At this point, she doesn’t have very much energy and is rarely awake. 

 

She has had multiple dressing changes for the wound VAC since we’ve been home and the wound it continuing to fill in. It may move to a wet/dry dressing in a week or so. We are pretty nervous about that transition as it means multiple dressing changes a day (more skin irritation/breakdown) and a higher chance for infection. But, at some point, it will no longer be an option and we will have to move forward from the sealed wound VAC. For now, we are so grateful for it and the huge difference it has made for Aimee’s wound.

In positive news this week, Aimee had an RN start providing care at home. She was approved for 56 hours a week of nursing care through insurance. We chose to use four 10 hour days for now with one nurse and see how it works for our family. It is definitely different, as there has to be doctor’s orders for everything that the nurse does. It isn’t impossible to get orders, but it takes a couple days. It is also a new person in our home, someone that we are just meeting and trying to get to know. We are hopeful that it will be freeing and will help us provide Aimee with the best, most safe care.