DeVoe Family

8.17.24

In my last post I had a few pieces of exciting news. True to Aimee style, she has kept us on our toes. Once we were able to get the standing bi-monthly prescription for IV ceftazadime, we noticed that the effectiveness seemed to have decreased. She just wasn’t getting back to her respiratory baseline. So we brought in a new trach aspirate sample. About 10 days into her 14 day course the pulmonologist switched her to a brand new (to Aimee) antibiotic called meropenum. Also by IV for 14 days, but a new delivery method and a broader, stronger antibiotic. We just finished it last night and moved her straight into her 4 week course of an inhaled antibiotic. And most importantly, she has gotten back to that elusive baseline. Here is the interesting delivery method for the meropenum. Even our hospice nurse had never seen one of these pressurized infusion balls. Pretty neat! It takes about an hour 3 times a day, which did make for some tricky scheduling with her TPN needs though.

Now, about the vitamin B. We are seeing less of the original results unfortunately. She is still showing improvements in her vision and her ostomy, but her energy has been generally quite low. We are continuing to add those 16 vials each day for now.

She continues to have weekly visits with the hospice team. They do all of her blood work, help us to navigate managing symptoms, and overall do much to help us be at home, happy, and healthy-ish. This picture is of her nutrition labs done through the central line. She has monthly draws done to make sure that her TPN is calculated correctly and watch for other trends.

The kids and I are taking a month off from school. The younger 4 and I have been getting out of the house by taking once a week adventures while Ed takes care of Aimee. It does our hearts good to adventure together!

6.21.24 Vitamin B trial

It has been a few months and it is past time for an Aimee update. We are rather threadbare, so there is not typically much left over for communicating, but there are a few developments to share.

Following our Great Wolf Lodge stay, Aimee needed a 2 week course of an IV antibiotic. Since that time, she has needed it every other month and so her pulmonologist has decided to place her on a scheduled use. She now runs on it for 2 weeks, followed by the inhaled antibiotic for 4 weeks, then a 2 week pause before starting the IV antibiotic again. This is for the reoccurring tracheal infections. This new routine is covering Aimee’s needs much better, so she is more stable.

The big news is that Aimee’s new neurologist wanted us to trial very high doses of IV vitamin B6 added daily to the TPN. There was a study done showing seizure control and developmental improvement in the hospital setting for infants with KCNQ2. With much drama, we were able to start the trial 3 weeks ago. It has been surprising to me, but we are actually seeing some results! Not at all the ones I was looking for honestly, but they are quite exciting. It seems we are seeing improvements in several areas of neurological function. First of all her vision has been much improved. During school she is actually scanning the books when I show her pictures. Aimee sees best in her left side upper quadrant, but she will glance to the right. The other day, Louisa stood on Aimee’s low vision side and read a card she had made for her. Aimee watched her and was looking at the card. She sustained looking at the doctor who was talking to her before performing a tube change procedure last week. She has been almost daily looking at me when I talk to her. This is a huge!

Beyond vision, she is more consistent with her alertness, has more stable temperatures, a massive increase in ostomy output up to normal levels, and even some return of movement like bringing her hand to her mouth that we haven’t seen in a couple years. She even seems to be okay spending some time in her wheelchair again.

I don’t know yet what will happen from here as we were approved to trial the vitamin B for 1 month. It has been quite a bit of drama to even do the trial. The IV version is only available in 1ml vials, so we have to draw up and administer 16 of them each day, which is an increased infection risk. Also, there is concern about the amount of aluminum in each vial, blood work issues, ect. However, this is the first hopeful progress in so long. These are more glimpses of Aimee peaking through the fog and it is so good to see her soul more present in her body.

2.2.24 Adventure DeVoes Adventure

We did it! We counted down the days and made it to the day. We packed up Aimee’s entire world, transplanted her a few hours south for a 2 night stay, and then safely returned her to her original location. Whew.

The trip went so beautifully well. Much better than I could have hoped. It was quite a feat and I am really proud that we were able to do it, with major help from Ed’s parents. The palliative/hospice team was just in awe. They have never had any families do this trip before and Aimee is their most overall complicated patient.

Aimee did incredible, especially on the first night. She was even smiling with the excitement of our arrival there and enjoyed time by the pool. The younger 4 spent every possible moment having fun making memories. They played in the water for hours, played games, and spent Christmas money on souvenirs. The staff was truly accommodating, kind, and helpful in every way possible. Most of all, the delight of packing up everyone for a family trip… it was a treasured gift.

Ed and I did have a major concern while we were there about drainage and redness at Aimee’s central line site. It cropped up the second night we were there and gave us quite a scare. We decided that, if at all possible, we should avoid changing the dressing while we were in such a public setting. We had plenty of supplies with us to do a dressing change and we thoroughly cleaned all the surfaces that touched her supplies, but changing the central line dressing must be done so carefully. Everyone in the room has to wear a mask and we have to be as sterile as we can. Waiting until we got home to change the dressing has probably prolonged the irritation at the site, but I think it may have prevented a more serious infection. Thankfully the drainage stayed minimal. We are seeing some improvement there, but it still doesn’t look as pristine as we like to see.

Here is a little photo dump of our adventure.

1.19.24 Daring Endeavor

We have an exciting tidbit to share with you. Our main gift to the kids for Christmas (with the help of the hospice foundation) is… a family trip.

You read that right. Yes, it is absolutely wild and daunting that we are even willing to consider it, yet it feels like a right choice to make right now. In the early summer of 2021, just a few weeks before Aimee’s spinal fusion, we took the family away for 3 nights to an airbnb just 10 minutes from our house. It was a delight and we all hold that time as a special memory. This will be a much more challenging trip, but we think we can do it. We hope that we can do it.

We tried to consider what we could possibly do as a family that would have a big impact, but also have everything contained in one building and be financially possible. We settled on Great Wolf Lodge with its indoor water park and onsite food options. A location where no matter how Aimee is feeling, everyone can be in the same building. The staff there have already been incredibly accommodating of all of our needs for power and room rearrangement.

I will come back with an update soon, but wanted to share a piece of positive news with everyone. Please pray that all goes well. We have so much help to make this happen, including a friend milking the cow, our niece feeding animals, hospice smoothing the way for accommodation of our medical equipment, funding, and Ed’s parents are going to come help us haul a trailer of Aimee’s furniture/supplies. It has been a feat to even get to this point and we haven’t even packed yet! Loading up this intensive care unit and taking it to another location for 2 nights with be a major endeavor. Pray for us. Really could you? We are so hopeful that this can be a special and delightful memory for our kids of our whole family together on an adventure.

12.28.23 Hello again

Now that Ed has broken the silence, I think I am ready to write again. Both Ed and I have been struggling with overwhelm, depression, and even physical challenges. This is taking its toll on our minds and bodies. Around and around we go through scares and roadblocks and stabilizing again and then around to another set back. The ride on a carousel that has lovely views, but terrifying turbulence, is going too fast for comfort, and never ends.

This past month has been another round of “normal” for Aimee on the roller coaster. Today she is spending the day in the infusion clinic at children’s. 2 days ago she finished 14 days of a strong IV antibiotic. She had her first social outing in years 2 weeks ago to watch Caleb in the church Christmas play. She needed an increased dose of her fentanyl patch to cover her pain levels. Her j-tube (medication tube) broke late at night and we had to work with hospice to keep her out of the ER. The work around caused some trauma, including rectal bleeding and muscle tremors. We were able to get an emergency appointment after 36 hours to have the tube replaced in Interventional Radiology thankfully. She got to spend time sitting on the couch a few of her stable days this month and 2/3 of the times she had no pain. She had multiple weeks without her night nurse. And there have been several respiratory bugs going through the house. Another month with Aimee.

I could go on with the drama that we have also dealt with for machinery and medications this month. Each week we are either in the middle of a wave, trying to breath after the wave, or dreading the next unknown source of one. You can see why it makes it hard to communicate here, because I barely know what to say. And when I do, it feels full of complaints. Thank you for baring with that. Aimee is okay. She is home. Also, not okay.

There is lots of good here too. The younger 4 kids and I take Fridays to either have adventures or learn with friends in our small co-op. We have had laughs and sweet moments. The kids keep us smiling and hopeful. They give me a reason to cook real food and to make a to do list and to look forward. Aimee has days too where she is alert. She will look right over at me or give us a sweet smile. On the good weeks, we gain traction and breath and maybe start to make plans. On the rough weeks, we go from task to task like machines. Here we are. Recovering, but never recovered. Stable, but unstably. Smiling, but full of anticipatory grief. Flippant, but masking anxious worry. It never ends. We don’t want it to end. But also, are hanging on for dear life. It’s no way to live, yet it is also real life.

Now, after that tumble through emotions and confused thoughts, here is a photo dump of birthdays, halloween costumes, and adventures. Sweet moments with our family living as best we can on the carousel.

-Aimee and Louisa snuggling together-