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. 😍