12.31.21 Trach Floor 65

Nearly New Year’s Day. Not much to celebrate or report today. Aimee has been sleeping fairly deeply all day and I am worried that she seems to have caught the cold even though I wore a mask and gloves doing her care constantly the last 3 days. Probably passed it before I realized I was sick. 

Ed joined me here tonight for 2 nights before I finally head home for a break with the other kids. This normal still causes aches in my heart. It hurts to see how much Louisa and Walter have changed. It hurts to have missed out on so many of Caleb and Elliot’s days. They are growing and we are barely there to guide them. As long as there are no new issues, we should be there with them, together, soon. 

Happy New Year. May it be filled with gratitude for time with those we love. 

12.30.21 Trach Floor 64

Getting tired of this yet? Me too. So deeply tired. 

I met with the general surgeon today and signed the consent form to place a Hickman, which is a tunneled central line on Aimee’s chest for giving TPN at home. It is not yet scheduled, but I am hopeful that it will be in the next week. 

Aimee had a good day. Awake and alert, but quite serious. She almost seemed to be studying us. Really using her eyes, looking in both directions, and even turning her head some. More head movement than I have seen since we’ve been here this stay. More and more progress! 

I’m beginning to feel better today. Had a bit more energy. I had a known night nurse last night cover some of my middle of the night duties so I could get some sleep. We have rarely had consistent nurses that we know, so it was a relief to be able to trust her with some of the care. 

Started working with the care coordinator and the Medically complex care consult today on nursing orders. For example, do I want nurses/caregivers to check blood pressure, how often do we want them to take vitals, what the parameters are for temperatures, ect. We will make a care plan here that will translate to her care at home. Just starting to sketch that out. 

12.29.21 Trach Floor 63

This is a less than ideal place to be sick. At least as a caregiver. Yet, even with this lack of peace and sleep, my heart is lightening. We are moving towards home. It is coming closer. There is light ahead. 

We managed to checked thing off of our list despite me feeling crummy. Our progress today involved a meeting with Urology and MCC and our medical resident. It went so well! I was really nervous going into it, especially since they were 50 minutes late. I was honestly feeling pretty disrespected, particularly after the way we had been treated in our previous encounters with Urology. Yet, we were able to agree on a plan to use for the next 3 months. We hope to have Aimee at home, stable and improving for that time. We will follow up with this same Urologist after that time and she will help us decide where to go from there based on its success.

Part of the problem going forward is that any fever or hypothermia requires a hospital stay to rule out a blood infection from the central line. A simple UTI could end us up right back here. We would like to avoid even a tiny UTI that may potential cause temperature changes. Sadly, that means we also will have to continue to be very careful about any sickness too. We desperately want to keep Aimee home as much as we possibly can. 

12.28.21 Trach Floor 62

My goodness today and its drama. 

The kids came down here on Christmas Eve. After the weekend, they came down with colds. This morning I woke up with a runny nose and sore throat. 😕 I told our nurse and we were put on strict covid protocol. I wasn’t allowed at rounds and I was told that I would need to go to UW to be covid tested. If positive, I couldn’t come back. I don’t have a car here. I’m in sandles (with socks 😏). It is cold and snowy. Not going to be a good outcome. I was feeling pretty anxious. 

Finally we got an exception since I would have to walk there in this weather. I was able to have a covid test done here in the room. Again, if positive, I would have to have to leave Aimee here. Negative result thank goodness. So we are on just viral precautions and I can wander the hospital at will. 😳 

Through all of that I was feeling pretty upset that we had brought the kids down. The younger two had seemed extra tired and we contemplated holding off just in case… I was really regretting that choice. 

Then, this evening the charge nurse came in with bad news, no more sibling visits allowed due to omicron and the patient load. 😭 Now I am so relieved that we did not postpone the kids coming just in case. If we had, they would not have been allowed to come at all! 

Now to keep Aimee from getting sick. 

Speaking of the star of this show, she laughed. She LAUGHED!! She has been giggling for much of the day and smiling great big smiles for all!! I haven’t seen her this well and happy since August. 😍 Oh my goodness my heart is filled when she is well. Here she is laughing on facetime with Louisa and Ed (and Walter). 

I was able to meet with some different doctors. The most important of today is that I was able to talk with General Surgery. We had a long conversation about the PICC line compared to a tunneled central line, procedures, risks and lumens. We cannot add lumens once a line is placed, but it does sound like we would be able to give meds and do TPN in a single lumen, so that issue is clear. We can do a single lumen. It isn’t clear if we should put Aimee through the procedure, but it is clear that it would be much much more convenient if we do. After talking with Ed, I think we will procede with placing a central line on her chest. Doing so will be toward one of our goals, keeping Aimee home. Going home with a PICC is a ticking time bomb, riskier, and more difficult to care for. Now that we have decided, we can move forward with scheduling the procedure. 

12.27.21 Trach Floor 61

This may not be a productive week. :/ We had to cancel our last vent class today due to the weather. Have not yet been able to speak with general surgery about the central line. One productive item, we did get a meeting scheduled for Wednesday with Urology and Medically Complex Care. Oh, alright, we also were able to get her PICC lumens treated for drawing labs. So I guess a bit of progress. 

Aside from the agonizing lack of progress, we are starting to feel hopeful enough to attempt to plan how we will need to adjust our home life going forward. As we have mentioned before, coming into this stay we were dragging. It was not sustainable how we were trying to manage those last couple of weeks. We had planned on a day with nothing extra. A day as restful as it can be with 5 kids. ‘Just manage to keep everyone alive Saturday’ became a little too true and turned into taking Aimee to the ER. 

So, the problem is, if we were just making it before, we now have added to the load. Hopefully, possibly, we will be able to hire some more nursing help when we get home. We are praying for 1 or 2 night nurses that are trust-worthy and kind and teachable. Aside from that help, some of our processes and set up will have to change. We will have to be more careful to avoid infections in her central line and in her airway. We will have to adjust our ways of moving her around, cause she is heavier and also has even more fragile bones than we realized. 

All to say, the we are beginning to try picturing in our heads how this will work. It is a relief to be able to occasionally lift up our gaze from this hospital room to home. To consider the future. To hope that we can work so hard and have such good protocol in place that we rarely need to come stay here on the trach vent floor. 

12.26.21 Trach Floor 60

Ed went back home today to take care of the animals/house in the very cold temperatures and snow. It is getting down to 11 degrees tonight. Brr. Unfortunately, we will probably need to cancel our final vent training tomorrow due to the weather and then I will be here another week before I can be home again. It is sure pretty out there though. 

Christmas morning Aimee woke up to a gift bag from the hospital. Typically in the past they had been involving the caregiver in picking out gifts. This year was… actually kind of a hurtful method. I would rather they had not given her anything. They filled the bag with things that an almost 13 year old girl would typically enjoy, a teen joke book, an adult coloring book, a novel. Probably for most of the patients who had to be here for the holidays, this method of gifting was a fun surprise. For kids in this part of the hospital… I imagine I was not the only family that found it to be a painful reminder of what their child is unable to do. 

Aimee slept the day away today. Even set off the low heart rate alarm a few times. I’m sure she was exhausted from the past couple of awake days. The moments she was awake though, she had a pleasant, peaceful look. Even a small grin. 

Neither of the lumens of her PICC line would draw back for labs tonight. Normally she has a bunch of labs done on Sunday and Wednesday nights, but they were unable to draw them. Hoping to get it resolved with a simple treatment tomorrow, but it does make me more hesitant to keep the PICC line at home. 

12.25.21 Trach Floor 59

Merry pre-Christmas. :) We decided as a family to wait to have Christmas until Aimee is home. We don’t know how many days to count down, but I am starting to feel it coming closer. Up until now there have been so many areas to work on that it wasn’t even possible to consider home. I am really hopeful that we are within a month of being home, maybe just a couple weeks even. Of course, you all know that my prediction skills this summer were… well, wrong. Lol. 

Up until an hour ago, Aimee was awake all day yesterday, a good portion of last night (every time I saw her through the night), and ALL day today. Actually we tried to get her to nap, because she was getting jumpy and exhausted. So so so good to have her alert and awake for this past two days though. What a sweet Christmas present! Actually, she gave us a couple of smiles on Christmas Eve night, so two Christmas presents. 

We had such a fun whirlwind Christmas Eve party in Aimee’s room last night with all the kids together. We opened our stockings, a few presents from

Santa, had cupcakes, read a story. It was good chaos. Over too soon. One of my favorite parts was giving the kids their annual photobooks and seeing them all sit to read them. Even Aimee looked at every single page of her book! 

The younger 4 all got to go to a family Christmas today and it looks like they had a memorable time. Spending time with family, taking fun pictures, and they even got to build a snowman! Check out their awesome new hats. 😍

12.24.21 Trach Floor 58

It’s Christmas Eve. And Santa came early!! 
He surprised the kids at home. What a fun and special treat. We are so grateful for all this love and the incredible thoughtfulness of each gesture. It is lifting us up. 

Aimee and I prepared for all the siblings to come down for a stocking opening party. Perfect timing that balloons were delivered today and even a box of cupcakes from one of Aimee’s surgeons. 

I’ll share about our memorable time together tomorrow, but for now here are some pictures of my little hand-sown presents that I had been working on for the past 3 months in Santa’s workshop… or Aimee’s room. One felt animal family for each child’s stocking. 

Aimee

Walter


Louisa

Caleb 

Elliot

Also, spoiler: Aimee had a lovely awake day. It really felt like a Christmas miracle. 

12.23.21 Trach Floor 57

This week we have been blessed with gifts for all of our family by complete strangers. There is much that the kids are missing out on this year. Nothing beats being together, but I am so overwhelmingly grateful for the generous people showing our family such love and bringing light into these days. It is heartwarming to feel so much care from all around us. Thank you to each person who has loved on us. It really does help us to not feel alone. 

Aimee has had a rough time today. Yesterday we moved some medications around and she did not have a good night. Lots of agitation, muscle spasms, and dystonia. The pharmacist changed doses and is attempting to switch her to a longer acting version of diazapam, but it will take some time to switch her over. I am bummed cause she will probably not be at her best tomorrow when the kids and Ed come to visit. 

The only other change for today was adjusting her break off of TPN from 6 hours a day down to 4 hours a day. She was having pitting edema in her feet and urine issues with the increased volumes. Hoping this simplifies our routine for home.

Big picture, what do we need to do in order to get home? Well, here is the few items left on our to do list:

-finish trach vent training (should be done Monday)

-place a tunneled central line or a new PICC

-be trained on TPN administration 

-have first round of bone infusion done 

-get set up with a homecare company to provide TPN (none are currently taking patients)

The hospital would like us to wait for nursing coverage. They have written for insurance to provide 16 hours a day. Families are waiting months and even years for nurses right now. This does not align with our goals, so we will not be waiting here for nursing coverage. Unfortunately this means a very difficult home life, but better to be exhausted together at home then to be exhausted apart. Either way, we will keep her safe as we can. 

12.22.21 Trach Floor 56

Aimee pretty well slept the day away today despite the new medication to signal her brain to be awake. :/ Her blood tests tonight did show low levels of potassium so that could be contributing to her fatigue. 

My primary conversations today were with care coordination regarding infusion companies. A lot of details to work out around who is accepting patients, who will allow us to have the PICC line vs a tunneled line, who will allow us to do the dressing changes or require us to come in weekly for them, who would allow IV meds at home, who would be okay with hospice nurses doing weight management at home and blood draws, who would provide training, ect. It is a little overwhelming to sort through. No word back yet from general surgery or infectious disease. 

There were a lot of memories that came up today from previous surgeries and hospital stays. Here are a few photos from previous December 22nds: 

Hip surgery

Wound vac after the spinal growth rods



And as a bonus

12.21.21 Trach Floor 55

“The people who walked in darkness Have seen a great light; Those who dwelt in the land of the shadow of death, Upon them a light has shined.”

‭‭Isaiah‬ ‭9:2‬ ‭NKJV‬‬

Christmas in the hospital during a dark season of declining health of our child… there is a shadow of death in our planning and conversations. It feels lowly, blue. It feels exhausting, draining, whatever new words you can think of in that vein. We are deeper and deeper. And yet, the true meaning of this season is close to my heart, perhaps more than ever. Into the dark, into the ugly, into the stinky stable parts of our lives, the great light is anticipated, awaited, needed. There is no sparkle to this scene, true light though can engage with these despairing times.

Today I spent a good amount of time walking through this transition with the Palliative care team. They helped me to process how to discuss the changes with our kids, how to give them opportunity to share their hopes, questions, worries. To allow them to say what is most important to them during this time. They helped walk me through code status options at home and at the hospital. 

It does not feel like good work to process these decisions. It feels gross. But if we do build this framework now, it should allow us to give our family focused time together pursuing what is most important to us instead of individually harboring worries about what may come in the future. We are hoping for more laughter, more happy years even. I hope for more focused moments to express how precious they each are for who they are. 

I also had conversations with the medically complex care team about central line versus picc line, single lumens, double lumens, ect. They are going to reach out to the infectious disease group about risk factors. I am still hoping to talk through all of it with the general surgery team as well. Who knows though, this week and next may not be the best for actually accomplishing any work around here. 

Most important of all, Aimee is doing great. We got her up in her wheelchair for a movie. She slept through it completely, but so comfortably. She smiled today. She was more awake. Tomorrow we will start back to our regularly scheduled programming by unpausing the med trial for something to help her stay awake more. I was able to reduce her trach cuff for a few minutes here and there to allow her to make noises. Beautiful little noises. 

12.20.21 Trach Floor 54

Fairly quiet for a Monday actually. I talked with a couple of specialists after discussions at rounds, but for the most part everyone is waiting to make changes or decisions until Aimee recovers from the trachea infection. She really improved today though. The antibiotic is effective and she actually gave me a little smirk this evening when we put her back in bed. Most of the day she was grouchy, but much prefer the feistiness to the lethargy of the past week. I think we are back on the upswing. A few more days of extra treatments and meds. Hopefully by Christmas Eve she will be feeling festive.
 In great news, last nights TPN labs were practically perfect. We are trying to convince to consulting nutritionist who will help our GI doctor with her care at home that we do not need to come down weekly to clinic for labs and weight. Typically intestinal failure kids are brought in for their line dressing changes, those blood draws, and a weight check weekly. Since our goals with Aimee are different, we are working to convince the team to let us come in every other week or even monthly. The inpatient nutritionist was showing me today about measuring her upper arm for a better weight status that we can easily do at home and helping us argue the point. 

12.19.21 Trach Floor 53

Aimee made a bit of improvement today. She had a fever in the first part of the day, which resolved with environmental changes in the afternoon. She is more reactive to care today. She is responding well to increased respiratory treatment and antibiotics. I am hoping that she is able to beat down this infection and have some energy again by Friday. We hope to bring the younger kids down here to open stockings and celebrate Christmas Eve with all of us together.

Ed and I spent time today putting together emergency vent, trach, and resuscitation supplies for when we do get to take Aimee home. We also attempted to prepare for a discussion with Palliative care this week about emergency measures. Making these decisions… it is so difficult and unreal. We have been confronted with such impossible conversations and thoughts as we consider the practical steps towards Aimee’s goals of comfort and home. 13 years ago we prepared in great excitement for our first so anticipated child to arrive. 16 years ago we promised for better or worse. Nearly 20 years ago we first met. And today, we talked about pain and death. It was not an abstract conversation. It was a practical discussion of what choices we currently believe are in Aimee’s best interest. 

How could we have ever endured it, to know how very much suffering this sweet little baby would have to go through in her lifetime? That we would ever have to watch our child endure this much. That we would see her triumph over and over again to live her life with grace, to laugh with such joy, to fight through the obstacles her body puts around her, to have enough hope to open her eyes again, to have enough patience to continually give it another go. She is forever changing us, our family, and those that are caring for her. As we talk together about what is best for Aimee to help her live her life to its full measure, we need to cling together as much as we can. We need to search for hope and do our best to appreciate in gratitude the days that we are given, even when they are such difficult ones. 

I am so grateful that today Aimee is in less pain and is not as lethargic as yesterday. 

I am so grateful that I have a healthy and strong body that is able to take care of her in a mostly pain free way. 

I am so grateful to have family members watching our kids each Saturday so that Ed and I can hold hands while we talk about these difficult medical decisions. 

I am so grateful for friends that send us encouragement and support.

I am so grateful that Ed still has a job to return to when we get through all of this.

I am so grateful to have kids that help me to laugh til I cry, to release some of this great mound of walled up emotions inside. 

I am so grateful to have a nearby children’s hospital that is staffed with enough trained nurses. 

I am so grateful that all of our bills are paid for this month.

I am so grateful to have gifts to give our kids for Christmas.

I am so grateful to have another day of calm progress here.

I am so grateful to have an eternal hope of true life for Aimee and all of us. In the advent preparation for Christmas, we anticipate the light dawning into this darkness. We anticipate suffering and through it, hope. And onto that hope, I will focus my eyes. 

12.18.21 Trach Floor 52

Turns out Aimee has tracheitis, which is an infection in her trachea. Good to have an answer to why she hasn’t been feeling well. She did start having a temperature this morning and had several labs and samples taken. She was started on an IV antibiotic. So far no evidence of other infections or viruses. 

Unfortunately, Aimee was moved rooms late in the day. It isn’t the end of the world, but it was annoying to have to undecorate our room that we lived in for almost 2 months. Also, we will have to start over with building nurse relationships, which is so challenging. They moved her to the actual area that is only for vent patients. The good thing is that we should have more consistent nurses, but we have to have all new ones. Honestly, we rarely had consistency anyways. 

We are both here together for the night, but feeling pretty sad and grumpy. It is hard to be heading into the week of Christmas and to not be home to prepare for it. Normally we would be savoring the view of a lit tree, stockings in a row, and a cozy fire. Normally we would be reading christmas picture books and doing advent activities. We do our best to be positive and present with the kids during our times at home, but this is really tough on all of us. Our hearts are split. We need to be here with Aimee for many medical reasons and also because she is our child who should not have to be alone in a hospital. Yet, we also want to be home counting down the days to a celebration. There is no satisfactory answer, except to get Aimee home so that our hearts can be whole again. 

12.17.21 Trach Floor 51

Ed’s Post

Well after three days of telling the team something isn’t right with Aimee, they are going to do some testing starting with mucus and urine. The crazy part is that if we were at home and we were to call to tell them the symptoms Aimee is having, they would tell us to come in to the ER. But yet we are here and they are like well let’s wait and see 🙄. 

We had our spine surgery follow up today with Dr White. He said everything looked great from his side of things. The only bummer part was that we did not have to do that seated X-ray now that she has been fully fused. It’s good for moving forward, but man that would have been nice to know before we went through all that effort to get a seated X-ray. I’m going to let it slide, because he brought us a pie on Thanksgiving 🤣. 

Update from Pulmonary/ Sleep: We are going to take a pause with the new med, Modafinil. Aimee is fighting something and not at her baseline. It doesn’t make sense to trial this med right now. 

Other update is from Urology. Whoever the doctor was that came in on Tuesday never updated his note to mention what we had discussed about flushing her bladder or the prescription that he said we could have on hand. My assumption is that he wrote his note before coming into the room and then told me what he thought I wanted to hear and left. So now the team has gotten ahold of someone else at Urology. They said no to the prescription on hand and we shouldn’t do flushes. Agh this drives us crazy. I think I’m going to send in Mama Bear. Rosa has a great ability to recall what doctor and when they discussed different thoughts. She also has the ability to speak their language. It is really fun to listen and to watch the interaction when she defends Aimee. I love it!

12.16.21 Trach Floor 50

Ed’s Post

Well another day in the books. Day 138 for the year. Aimee had another very sleepy day today. She still seems a little off to me and Rosa confirmed, which helps me to feel like I’m not completely crazy and looking too closely at things. Really the only things besides being more sleepy are the increased secretions and an elevated heart rate. We have been slowly moving meds over from IV to enteral so the length of time she is receiving meds has definitely increased, which could be causing stress on her body. At this point, we are doing 4 hours of just water flushes and approximately 5 hours of meds. 

We are closing in on the end of our Trach training. I believe we only have one class left next week and we will be done. I thought somehow I was going to be more excited about this, however, it’s lost a bit of its luster because it is not the thing that is keeping us here. Honestly, we kind of knew back in October when we agreed to the Trach that it was going to be the gut stuff that was going to take longer than the Trach. We did not get an encouraging update today on the TPN supplies from the home care companies. They simply are not taking on new patients at this time. If you’re looking for a prayer request, pray that there will be an opening for us. 

Where does this all end? It feels like a tunnel that just keeps going. Every time you come to a turn you think maybe there will be an exit, but instead there is just more tunnel. It know I need to stay present in today (I’ve got a shirt that says so), but it’s hard not to hope for the next chapter of bringing Aimee home. The other day, I was coming into the hospital and there was a couple coming out with their baby. The mom announced (she said it loud enough that everyone could hear her) “Wow, he doesn’t even remember what it looks like out here. He’s been inside for 26 days.”Perspective is everything isn’t it? Compared to what we’ve been though lately 26 days sounds like a walk in the park. I would be happy if we only had 26 days left.

12.15.21 Trach Floor 49

Ed’s Blog Post

This morning we had a visit from our GI doctor who just so happens to be on service this week. There are so many details still to be worked out with taking home TPN, but it was good to talk it through with her. She did get a commitment from an intestinal failure team dietitian to help her with overseeing Aimee’s nutritional care. More discussions about either a PICC line or a Central line on her chest, but something the GI doctor brought up was to consider what if things regress and we can no longer give her medications enterally. It’s a little worse case scenario, but I would hate to switch to a central line with a single lumen just to have to change to a double later because we hadn’t considered this. Aimee currently has a PICC line that has two ports and the Central line we have been discussing would only have one port, which would make giving meds through it more difficult and limiting. More things to consider ….

On a happier note, Rosa and the kids got to come down and spend the evening with Aimee and I! We painted decorations for our tiny tree, put up Christmas decals on our door, drank hot chocolate, and watched Elf! 

It was great to have everyone in the same room at the same time. I wish this felt more normal. To be all together. Even to be questioned at the security desk whether we could all come in felt annoying. I didn’t have to get Papa bear on them or anything, but I was ready if need be. It was hard to have them all pack up and leave. I’m ready for us to all be home.