7.5.21 Inpatient 7

Upward trending today. Adjusted meds some more yesterday and increased food again this morning. Her blood test this morning showed that her hematocrit was a bit lower that yesterday, but this afternoon the bleeding has stopped and the ostomy output is normal! 

Unfortunately the med that we stopped allows her stomach to relax and process some of its own fluids. We are seeing her have difficulty tolerating any stomach acid at the moment, so her farrell has to be kept on the floor, which means the output there is 3 times the amount that she can lose. At the moment we are not going to worry about that, but instead focus on increasing food. If the ostomy stays stable and there is no more bleeding, we will try adding that med back, which will hopefully slow the amount of fluids lost that way. 

This is all a long process, but we are seeing some positive progress today, which feels hopeful. Last night she was able to sit up in her wheelchair to watch a movie for 2 hours. She was awake, but barely. Today, she has mostly been reliant on bipap again and sleeping all day. A step forward and a step back. Thankfully the steps forward are currently longer strides. 

7.4.21 Inpatient 6

Happy Independence Day friends. 

Not great news today. Aimee’s stomach ulcers have started back up again with quite a bit of blood in the farrell bag coming from her stomach. The doctor ordered an additional blood draw this morning and her hematocrit is quite low. Not blood transfusion low, but just as low as she was post surgery transfusion. Significantly lower than normal. Shoot. They are tweaking more of her medications and dropping her food ratio back down to where she was yesterday morning. 

Ed stayed down with Aimee last night and I went home to sleep, shower, see the kids, and milk. It felt so good to get fresh air, to snuggle the kids, and pick fresh berries and flowers. I even got to bring a jar of hydrangeas back for Aimee. 

7.3.21 Inpatient 5

Good day today overall. Aimee is awake. Irritable, but mostly awake. She has been having stomach cramps, but I’m not sure if it is her trying to finally clear out her colon or if it is something else. It is 6 weeks post ileostomy surgery and we still haven’t seen the colon empty out. A tiny smear last night after cramping made me think maybe that is causing some of her distress. However, we also increased her food intake a bit more today, so she could be cramping from that. She is still having too much output in her ostomy, so still reliant on IV fluids to stay hydrated. She is hydrated though!! 

Calculated today and Aimee has been here at Children’s for 3 weeks out of the past 6. That has taken a lot of help from family and friends to care for the animals and for Caleb, Elliot, Wallie, and Louisa. Thank you for helping us. Thank you for all your prayers and encouragements. Thank you for being on Aimee’s team. 

7.2.21 Inpatient 4

I was wrong about not dumping fluids anymore. She still is continuing to dump through her ostomy. It may have decreased a bit, but still much more than normal. We are having to give her about 1100 daily in IV fluids on top of her j feeds to keep her hydrated. She is finally hydrated though. She finally this evening produced an actual decent amount of urine when we cathed her. So glad to see pee! 

We believe that the stomach ulcers have stopped, as the farrell contents are no longer bloody. In other good news, she finally kinda woke up this evening for a short time. Spent a couple of hours off of bipap! Even gave me a couple of little droopy eyed smirks. 

So some progress. We’ll see what the night brings! Ed went home to get a good sleep, see the other kids, and milk the cow. Aimee and I are here ready for a night of vitals, turning, output tracking, and meds. :) 

7.2.21 Inpatient 3

Yesterday after rounds we met with GI (not actually Aimee’s specialist). They made a couple of changes to meds and decided to give her gut a rest by cutting her food with half pedialyte for 24 hours to see if we could stop her losing so much fluids and stop the stomach ulcers. They stopped her daily antibiotic, which she has been on for 3.5 years! Ugh! So glad to let that one go. It has been an ordeal to even get during covid shortages and caused us so much frustration. Plus, letting go of a med is rare and wonderful. 

So far the gut rest seems to be working. She isn’t dumping out fluids anymore. However, now she isn’t producing hardly any urine. She has been sleeping really peacefully with amazing heart rates, but anytime we try to rouse her and take off her bipap, she either desats or gets really agitated and shaky. She has only had it off for about an hour in the past 24. Granted, the ER experience was a lot, so maybe she is just recovering from that. 

The GI team feels that she must have some GI bug causing all of this. They don’t think it is related to her surgery at all. Seems like a really big coincidence to me, but whatever is the cause so as long as she recovers and we can bring her home safely without worrying about turning back around to bring her back! 

7.1.21 Inpatient 2

Well we are here again. It is very deja vu as last week our room was directly above our current room. Same layout, same horrible view. Except this floor has been remodeled to have somewhat updated fixtures. 

Last night (this morning?) we met 3 different teams all trying to decide who should admit us. We first met with the PICU nurse practitioner who had actually overseen Aimee’s care post spinal surgery. Together we agreed that Aimee wouldn’t need to be admitted to the PICU currently. Then we met with the surgery team. Then the medical team. Apparently it was a difficult decision that took hours. :/ I kind of understand as it took Ed and I a few minutes to decide who to call yesterday to discuss our concerns. It’s a bit of a complicated conundrum. We finally ended up in the medical unit, though Aimee’s orthopedic surgeon has been in today already to check in with us. 

At this point we are working to make sure that Aimee is fully hydrated and not in pain. Her heart rate has come down. She is asleep on her bipap with oxygen with a heart rate of 92. Much improved. She has had and continues to have excessive amounts of fluids put in. Once she is fully hydrated, we are going to work with GI on how to keep her there with possible medication changes (maybe some decreases even) and as much fluid increase as we can. It is not simple and we don’t want to leave until we feel confident that we have all the tools we need as well as good perimeters for when she just needs to come back here for fluids. Not being able to give bolus enteral feeds at home makes this quite a real possibility to watch out for going forward. 

Man we are shaky and tired. Hoping to maybe take turns getting some naps in this afternoon. Zzzzz

7.1.21 Inpatient

After 15 hours in the ER, we were finally moved to the medical unit at 5 this morning. We are exhausted. Actually we were exhausted before we got here. Now we are super exhausted. Spent the past 2 hours working through admission and now it’s time for nursing shift change and then meeting with doctors. 😩