9.22.17 Cecostomy 16
One more little bolus of food and a wheelchair test stand between us and the door. A few more hours and we could be wheeling down the hall. Although we know Aimee is not nearly back to her baseline, she should recover faster in her own bed without 15 blood pressure checks during the night. (Not exaggerating. Aimee has really unusually low blood pressure patterns and it freaks the nursing staff out continually.)
9.22.17 Cecostomy15
A peaceful (as it can be inpatient) night. Aimee is finally her calm, responsive self today and we have a plan for how to get her home. We are still seeing the same pattern of distress with food, though not as dramatically as before. We are not going to be able to get her on as many calories as she needs for several days probably, so we fully switched our focus. We are aiming for staying hydrated instead of nourished for now. We are attempting to give round the clock water with little boluses of food throughout today. If we have success with this plan, we won't be reliant on IV fluids and we hope to be heading home to finish up this gut recovery. The doctors had hoped to only have Aimee stay for 1-2 nights, but with her neurogenic bowel condition, everything just works slower.
In other news, we have made some progress with the insurance company who denied the supplies for the c-tube. Hopefully by the time we are ready to use it, we will have it fully sorted and supplies will be on their way.
9.21.17 Cecostomy 14
Overall good progress today. We are trying to get Aimee to take in enough fluids to wean her off of IV. It may take us some time to get back to her typical schedule, which we can deal with at home. For now, even a continous feeding would be fine, if we can get Aimee to tolerate that much fluid. We are watching her heartrate, hoping it will go down so that we can try to add more fluid at a higher rate. We are moving in the right direction, but need to get farther to make it home.
Another issue we are currently having is with the insurance company not wanting to pay for the supplies for this new tube since some of them are the same type of supplies used for the g-tube. Hoping I can get that sorted out in the morning. One of my least favorite tasks is dealing with the triangle of insurance companies, homecare companies, and the doctor's staff.
9.21.17 Cecostomy 13
So far mostly positive overall today. Aimee is worn out from last night and basically sleeping constantly, but she has tolerated a 60 ml feed and we are just now starting a 90 ml feed attempt. She has had some pretty major bowel leakage from the c-tube site. Hopefully that will stop as it heals.
9.21.17 Cecostomy 12
Aimee slept really peacefully through the night with just the regular pain medications throughout! She woke up calm. After her meds this morning, we will make another 60
ml feeding attempt and go from there based on her reaction.
9.20.17 Cecostomy 11
Finally some peace. After a horrible panic attack for the past 2 hours, we were able to add oxi and her sedative, plus the other pain meds she was already using. She really freaked us out with a terrifyingly high heart rate and jerking/arching her body. We are praying that these meds will allow her to rest tonight. Ed and I are exhausted after that and I can't imagine how much more she must be.
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