2.27.22 Thirteen Years

Aimee turned 13 this weekend. We spent the time low key celebrating in an Aimee style. Movie night in Aimee’s bed. Dance party. Chocolate cake. Audiobooks. Decorating with homemade window clings. A nap with Dad and a nap with Mom. Painted  matching toenails for us 3 girls. Lots of music. We were exhausted honestly and just tried be present. 

Aimee is doing okay. Still on extra respiratory support. Feeling like we are heading in the right direction though. We are here doing our best. 

As I was laying in bed with Aimee yesterday, I was hearing the in and out of the ventilator, the rumble of the gastric suction. Wallie was bringing in lego sets that he created. Later Louisa helped us give Aimee a shower. I realized that we essentially have a hospital room in our home where Aimee is. We have the freedom to bring the kids in and around her continually, but really it is like she is in the hospital in a lot of ways. We spend hours around the clock with central line care, hanging TPN, airway clearance, trach care, ostomy care, urinary catheters, administering meds through a syringe pump, flushing the gastric suction, changing dressings, positioning, cleaning, suctioning. It is not at all like thriving at home as we have known it before, yet we are so grateful to be in a time where this is possible. 

On that note, thank you friends for being incredibly gracious and patient with my responses. My cup of social energy is quickly drained talking with specialists, nurses, homecare companies, pharmacists, ect. I wish to be able to be a friend and I am praying that you will still be there when I can be one. I miss being a friend. This daily load is as much as we can do and there just is barely enough energy to do it every single day. Every night I stay up until 1-2 in the morning to do Aimee’s care. Ed gets up through the night half of the week and his mom helps during the night the other half. He wakes up to do the early shift. He has cut back his hours at work so that he can manage with nights of low sleep. We are praying for a night nurse or two to help us, but there have been no additional nurses at all available. 

Really, truly I am thankful to be the one doing Aimee’s care most of the time. It does flow out of our love for her. In great gratitude I can say, there is no better hospital room. There is no where else we would rather be surviving. 

2.23.22 Improvement

Aside from the new inhaled antibiotic, we changed Aimee over to a higher pressure support on her vent. She has really perked up and we are starting to see improvement. 

2.22.22 Treatment

Finally have an update to give everyone! The hospital agreed to provide an 8 day supply of the nebulized antibiotic ($2,000!) to Aimee as we work through the appeal process with her insurance company. We are so grateful. Ed drove down tonight to pick it up and we got her first dose in tonight. Hopefully this will make a big difference for her over these coming days. 

2.19.22 Steady

Still home. Still hanging in there. Thankful. 

After discussions with pharmacy last night and her pulmonologist this morning, it was determined that there is no enteral medication option for her to use given her gut situation. Until the inhaler is hopefully approved eventually, we would have to use IV antibiotics and would have to be inpatient to do so. We don’t want to be inpatient, so we are pulling out all of our tools and attempting to treat her without antibiotics for the infection. We are hoping that this time will be mild. The doctor heard all that we are doing and commented that we were performing ICU level care. At least we have found a way to do some of it here! 

At this point Aimee seems to be doing fairly well. We added another steriod inhaler, more nebulized saline treatments, continued oxygen, added more rounds of chest percussion therapy. Lots of cough assist. So far this is moving the secretions out and allowing her to fight off the infection herself. We hope. We are hopeful that it will be enough. If she does get worse, we will have to take her back to the hospital. 

Still, even during stress, even when we were doing cough assist 4 times an hour, it is still so worth having her here. Her siblings have been listening to audiobooks with her, playing animal sounds for her on the ipad, watching shows with her, singing to her, playing toys with her, holding her hand. What a season of simplicity and complication. Simple as we pare down to basics and essentials, to our highest priorities. Complicated in the intensity of care, the delicate balancing act. 

I have continued on a tiny bit with painting, though my subject matter has shifted slightly. Part of our homeschool lessons this week was drawing and watercolor art. Somehow that evolved into everyone painting Mario. 😆

2.18.22 Sickness Update

Aimee is doing okay. She doesn’t feel good for sure, fairly lethargic, respiratory issues, and even slower digestion of her gastric secretions, but thankfully her temp has been stable. Unfortunately, we still don’t have approval on the targeted prophylactic inhaler antibiotic. Ed went to Seattle tonight to pick up an enteral antibiotic that would potentially cover the infection. Unfortunately, after getting it home, we found that it may clog her j tube. It actually did clog it when it was mixed with her other meds. We were able to clear it and get the other meds in, but are nervous to try this one again. If it clogs the tube, all of her other meds cannot be given. 

We are waiting on calls back from the pharmacy. It sounds like her pulmonologist wrote the prescription for a g-tube administration, so pharmacy filled it not realizing that we would be using a med pump through a j tube. They are working on a solution, but at this point, we don’t have a workable treatment option still. :( there is a different antibiotic that can go through the tube she has, but it is a huge volume. I don’t think Aimee would tolerate it or be able to absorb it. 

Hoping, hoping that we can keep Aimee home. She is stable at this point and we have great tools here, but we need a way to treat the infection itself. 

2.17.22 2 Weeks at Home

Aimee has been giving us a bit of a scare tonight. We are feeing a little nervous, some moments a lot nervous, that we will need to take her back to the hospital. She is showing early signs of tracheitis again. So far no temperature changes. 

Since we got home we have had many virtual appointments, phone conversations, and hospice visits. We have discussed the need for an inhaler antibiotic to keep the tracheitis away. Since she got the trach, she has had this reoccurring infection about once a month. The thought was that if we targeted it preventatively every other month with an inhaler antibiotic, we would eliminate many hospital stays going forward. Our goal is to keep Aimee home as much as we possible can. Unfortunately, this treatment would be $3,000 per month of use and insurance is fighting it. Aimee is on many multiple thousands of dollars worth of medications already, so I can’t blame them for being hesitant, but that is also less than one night stay in the ICU step-down/trach floor. Thus, even though the prescription has been written, we don’t have the treatment. 

Thankfully as the night goes on, she seems to have settled a bit and is requiring much less respiratory interventions. Ed and I are prepared to take full shifts through the night, but we will see how things progress. As long as we can stay home! This all depends on her not becoming hypothermic or developing a fever. We have a decent amount of respiratory tools here to keep her safe, but if she has a temperature change, she has to be checked/treated for a blood infection due to the central line. 

Praying that we are able to get the prescription approved quickly. I am praying that since she is symptomatic now that they can get it through tomorrow so we can pick it up with other meds ordered and treat her with it at home. I am praying that we can avoid an emergency trip this weekend and keep our girl home. 

Another reason I am praying for this is that her state insurance and DDA coverage are set to be terminated at the end of this month due to her long hospital stay. They are way behind the ball. We finally got through to someone to fix the problem, but we need to have an assessment and at home visit done by the end of this month. If she is readmitted, the termination process will continue. 

2.13.22 Onward

We are making our way. Each day forward, the routine is getting more practiced. It is a relentless routine in that it is always. Every day around the clock. I’m not sure I would ever call it easy, but it is happening. And… I never, ever want to take her back if I can at all help it. It is SO SO good to be home. So good for her, so good for us, so good for the other kids. It is a lot and it is tiring, but look at the rewards in the pictures from this week at home: relationship, joy, interaction, consistent care, comfort, familiarity, sunshine, peace, positive touch. So much to be grateful for in this. 

(All three of us wearing the same lipstick at Louisa’s insistence)

(Sitting in the fresh air and sunshine with Nana)

(Watching a movie and laughing with brothers)

(Learning to play her new toy)

(Louisa wanting to match Aimee)

(Giggling during respiratory treatments)

(Louisa loves helping take care of Aimee)

This is worth all the work. All the sacrifice. 

Tomorrow we are taking another step forward. Ed is returning to work. Our delayed Christmas break is ending, so the kids and I are returning to homeschool too. I’m not certain how it will work. Honestly, I am nervous and don’t want tomorrow to come. Please pray that we would all stay healthy and be able to balance. We have a plan for this week. We have the hospice team in person and the medical team virtually to support us. We plan to cut out a lot of extras, to cut a lot of corners, to focus on the key priorities for this season: 

-staying home, staying healthy

-savoring time together

-getting enough rest to safely do the above

2.6.22 Firsts

Aimee had her first shower at home today to wash off the hospital smell. Ed and I did her first trach change at home. Louisa insisted on trying some lipstick today and equally required that Aimee have it too. I love the little moments happening between them. Louisa helped us as much as she could with every part of Aimee’s care, moving a leg, drying her bathchair, changing her sheets. She would have loved to do more. Walter walked through Aimee’s room and commented, “Do you know how happy I am right now? I’m just so happy Aimee is home.” 

I am going to post more sporadically over the coming time. It is difficult to sort out how to organize everything in my brain and in physical space for Aimee’s supplies, her daily schedule, ect. Going to focus on that and on hopefully getting some family time this week before Ed goes back to work next week. I hope to have many good days ahead to share with you in the coming weeks and months. 

2.5.22 Christmas

Merry Christmas from our family!

We had a sweet, peaceful day together. Mostly peaceful. Aimee gave us a decent scare tonight. Ed and I had our hearts going pretty good with some central line troubles. Immediately our mind was thinking of worst case, but we managed to resolve the issue thank goodness. I think we did. I’m pretty sure. It is all so new and we are out in the wilds of home. Out of the controlled environment. 

We managed to move Aimee out to the couch twice today, which was quite the endeavor. I’m sure this will all become a little easier with time and routine, but it currently feels like a lot even for the two of us together. 

The kids all thoroughly enjoyed Ed’s new deep tissue massage gun. Lol. A big thank you to so many friends who made today special and relaxing. From providing a sushi dinner, presents for the kids, flowers for the table, chopped up salad veggies, putting up a tree, and taking accidental prank calls from the little ones’ new bluetooth headphones (so sorry Jen!), each piece made today memorable. Thank you for loving us.