12.14.21 Trach Floor 48

By Ed 😬

Okay well, welcome back. Or I guess you have been here the whole time. It was me who hasn’t made an entry for awhile. We shuffled a lot of meds around to accommodate the next added medication being switched from IV to enteral, Diazepam. Just a little perspective on this, if we had not adjusted other med times, we would have been giving meds 9 different times thoughout the day and night (not including IV med times)! Each time we give a med enterally, we have to flush with water for one hour afterwards. Add that to the time it takes to give the meds themselves…That is a lot of the day doing meds! I believe that I have now consolidated down to 4 times a day, at least enterally. 👍

Aimee and I managed to go down to radiology to get the dreaded seated X-rays. Orthopedics needs them for her 6 month follow up appointment after the spinal fusion we did this summer. I think I have some PTSD about these X-rays. They have always been difficult for Aimee. It’s not a position she has ever done well with. It feels like all her life it takes about 3-4 people to hold her in this position. All the while you are trying to keep your hands and arms out of the X-ray, but also keep her breathing and suctioning the secretions. And without fail, the mobile suction machine they grab has a low battery. All good, we got the X-rays. 

This afternoon Urology came by as we had requested them to do. Long and short of it was that they do not want to put Aimee on a standing antibiotic, because she would then grow immune to the antibiotic and it would leave them with nothing to give her if she got a super bug. I may not have been the best advocate for this meeting. I did push him a bit with our current goals, but may not have been as strong as I should. In the end, I asked for a prescription that we could give if we saw signs of a UTI and he agreed to write one. He also recommended doing a 100 mls bladder flush with sterile water once a day as a preventative measure. 

Aimee slept most of the day away and was pretty junky and gagging. Not sure why just yet, but we did move around some of her meds today so that might be the culprit. This evening she seems more comfortable and is resting well. I’m pretty sure my blood pressure goes down as her heart rate goes down. I’m so much more relaxed when she is resting comfortably.

12.13.21 Trach Floor 47

Back at it on Monday! Busy morning talking to different consultants about next steps. 

-Neurology: We are working on moving seizure meds forward. Started another one of her enteral ones back today and took the first decrease on the Iv seizure medication. 

Nutrition: Adjusting the timing of TPN to hopefully work better with her body. They would like it to run for 18 hours with a 6 hour break, but that is a long break when she is used to round the clock fluids. It is causing us some issues with urine and our cathing schedule.

Rehab: Spoke with rehab about moving her diazapam for dystonia from IV to enteral and again trying to tweak timing to logistically work at home. Currently she is getting meds so randomly throughout the day and night. Nearly every hour. We’re trying to reduce down the number of flushes to make it easier on her body. And our sanity.

Urology: Asked the team to round back with urology on a standing med to keep UTIs away. She has been having one every 6-8 weeks and when we take her home with a central line every fever (or hypothermia) means we have to go back to the hospital.

Endocrine: Bone scan showed low bone density, which is what we expected. We are waiting to hear back from endocrine about moving forward with infusion for bone mineralization. 

Case Manager: Lengthy discussion with the case manager about going home with TPN and the central line. One of the biggest concerns right now is that there are supply issues with TPN homecare. No one us willing to add a new patient as they need to make sure that they have supplies for their current patient load. If supply issues change, Providence is willing to send a nurse to our home to do weekly dressing changes on the PICC line. Currently they will not take her on though. When it is the only reason she is still inpatient, the case manager thinks she can convince Children’s homecare to take her case, but only if we either switch to a tunneled central line on her chest or go in for weekly dressing changes to the main campus. Not worrying too much yet, but it is unclear how this will iron out as we finish working through the other obstacles keeping us inpatient. 

Pulmonary: Had a great visit with the Pulmonologist this morning. We talked about the decrease in Aimee’s wakefulness, especially over the past 6 months. There is a medication called Modafinil that she thinks may help signal Aimee’s brain that it is time to be awake. However, in order to get it, we need to prove that she has hyper-somnolence due to a medical condition or ideopathic hyper-somnolence. Either way, she can’t do any of the tests to prove it. So, the doctor would like us to chart every 15 minutes if Aimee is awake over the next 7 days. Hoping that if this med helps Aimee to regain alertness that we will be able to convince insurance to cover it. It is not crazy expensive (300-600/month), but would not be an option for us out of pocket at this point. Another option would be a stimulant medication like Ritalin. 

We also discussed decreasing the trach cuff when Aimee does have awake periods. The cuff is preventing leaks from the vent and also keeping upper airway secretions from creating issues down below, but it is also preventing Aimee from vocalizing at all. So so sad to see her try to make noise and not be able to do it. Really hoping that we will be able to bring the cuff down at least during active periods. 

Discharge RT: Our team of 4 being trained on trach care is finally approaching the finish line. We have been having classes twice a week most weeks and should be done by the end of next week. Today we had the second round of Trach emergency and CPR. It was not an easy one emotionally for any of us I think. Many difficult situations to consider and to make plans on what would be best for Aimee. It is right to process these scenarios ahead of time, but also heart piercing.

Aimee facetiming with Daddy this morning. 

Good to come home and fill my cup with laughter and snuggles. 

 

12.12.21 Trach Floor 46

Such a peaceful Sunday for Aimee. She woke up early with bright eyes. She got up in her chair and watched the nutcracker. She smiled for her nurses and was a little sassy to her RTs. She slept most of the day still, but had no gagging or pain. So good to see. I’m beginning to feel that there is a pinprick of sunlight coming through from the end of this long tunnel. 

Ed is home for one more night tonight before we switch. He is building a gingerbread house with the older boys after the younger two are in bed. Aimee’s palliative/hospice care team brought our family a paper chain with little and big activities to do each day of the month of December along with the materials to do each one. I was so blessed that they still included us in this Christmas gift even though Aimee is technically discharged from them while inpatient. Such a wonderful gift for our 4 at home to help make the season merry and bright. 

12.11.21 Trach Floor 45

Today was a good day. Ed and I got to spend the morning together taking care of Aimee. We got to leave her here in the care of a nurse with whom we both feel really comfortable. We went home for a few hours and were able to celebrate Caleb turning 10 with family and friends. Aimee was able to participate via facetime, which was sweet. Then I came back down to a peaceful room with a girl who had been so well cared for while we were gone. It is such an amazing feeling to have other people step in and befriend her where she is. Another nurse stopped by to tell me how excited she was to have seen Aimee smile at her today. I feel so honored to have such love and care around us at home and here too. 

12.10.21 Trach Floor 44

Child life brought in a sensory cart for Aimee to use today. It is so soothing that it has put her to sleep for the most part, but I think she also enjoyed the light show. 

Today we made one last ditch attempt at getting rid of the dreaded replogl tube that is being used to suction her stomach. There was an idea that if we hooked the suction up to her g-tube that it might clear her that way and then we could take out the nasal tube. Sadly, it didn’t work. She became bloated within a couple of hours and there was very minimal output. We are disappointed. Really would like her to get rid of that tube, but at least the team found a way that she can go home with it. 

There was more discussion today about the PICC line versus central line on her chest. We learned that Children’s home care would be okay with us going home with a PICC, but would not allow us to do the weekly dressing changes. They would require us to come to the hospital here in Seattle weekly. If we have a line placed on her chest, we would be allowed to do the dressing changes. This may be the nail in the coffin of our idea of keeping the PICC. It is functioning well, so it seems like we might as well continue to use it until it fails and hold off on more anesthesia for now. The care coordinator is contacting Providence to see if they were to supply our TPN would they allow us to do the dressing changes at home. If they say no, we will proceed with the procedure. It is not an option to us to bring her in weekly on top of clinic appointments. That is in contradiction of our goals of comfort and home for Aimee. 

Tomorrow Ed and I will both be home to celebrate the newly minted double digit age of Caleb Edison. He and the other younger kids have been having a memorable week with their cousins at home. We are so grateful that there can be such sweet relationship with other family members during this season of separation. The connections between joy and sorrow, closeness and loss, gratefulness and grief are near together right now. 

12.9.21 Trach Floor 43

Aimee’s body is calm again today. Her meds are back up to speed and she is on full IV nutrition again. Relief.

Our biggest discussion for today was around the central line. We are trying to decide if we can safely get away with leaving in the PICC line for now and going home with that rather than putting her through another procedure to place another central line on her chest. There are risks either way, but we are talking to different team members to help us decide what is in Aimee’s best interest. No matter what, we will take her home with a central line of some type. Another thing for us to learn how to take care of at home. This one is intimidating, partly due to infection risk, partly just the accessing vein creeps. 

Can I just say for one moment…this is so much, all of this. We are so tired. Someday we will get to take Aimee home. And then all of this continues, all of this added care, except we get to do it from home. There is much to feel, but I am too weary to feel any of it. 

And to leave you on a cute note, here is Olive, Aimee’s owl. He had a bath and is drying in a diaper hammock. 

And before I head home for my time with the kids, here is my festive painting for this week. :)  

12.8.21 Trach Floor 42

Alright, we have access for meds again with a GJ in place. Goodness what an ordeal this all is! Aimee was vomiting this morning and her stomach was bloated and her ostomy was really low. She was not comfortable. She missed several doses of a good number of meds to help with pain, motility, sleep, and seizures. We are working to get those back on track. 

While things have not been smooth, we do at least have a path forward now. We will go home with LIS, low intermittent suction, from her stomach. We will use the j to give her meds. We will get a central line (type to be determined) and take her home on TPN. Still quite a bit of work to do, but it helps to see the way forward. 

Thank you to the all of the amazing individuals who have given us an influx of room service gift cards. It was so nice to get hot food delivered for dinner tonight! 

Aimee is sleeping now and waiting to feel more comfortable again. Unfortunately, the bag for the lipids portion of her TPN broke tonight, so she won’t be getting those calories. She has actually gained a bunch of weight while here on TPN. A lot, like a 20% increase. So maybe one night off will be okay. :)