After an uncomfortable night and early morning, Aimee flipped a switch and has been having a positive day. We had multiple discussions with the team overseeing her care and were able to increase the muscle relaxer doses, get more options for pain mediciation, and switch to an extended version of the anti-inflammatory. This seems to have made a huge difference. Just a couple of hours ago Aimee was heading back in the wrong direction and it was nearly time for her diazapam muscle relaxer. She is now sleeping comforably on bipap with a lower heartrate and deeper, slower breathing.
Also, she made huge progress today in her fluids. She is tolerating a continuous dose by g-tube that would cover her hydration needs. Unfortunately, she has also had difficulty with too many fluids out, so we haven't been able to reduce her IV rates yet. Tonight we hope to add just a tiny amount of food to see how she handles it. Steps towards home!
Aimee has had such a rough day. We don't know for sure what is going on, but maybe her nerves are finally waking up and sending pain signals. She is having more muscle spasms, very aggitated, grinding teeth, jerky movements, breathing quickly, and her heart rate is high. Messing with the meds tonight and trying to get her settled. It is always so difficult to trouble shoot what is happening with her and then convince the medical staff of what we think is needed based on her clues. Praying that we find a solution to bring peace to her body.
Rough morning. Aimee woke up in tears and we had to fend off all the visitors hoping to change the wound dressing, administer catheters, do physical therapy, ect.
Still no fluid progress yet. She is having a hard time with just her meds and half the daily requirement of liquids.
Goal for today is to get her up in a commode with the hoyer lift for her c-tube flush. This is pretty ambitious as it takes over an hour. However, even though she hasn't had any food yet, she still needs a clean out. Hoping that with success in this area, we will be able to make some progress towards increased fluids into her stomach.
Hey, Aimee finally got a bigger space. In fact, she got a giant room! We were able to bring in her wheelchair and using the lift we moved her over to start some adjustments. The PT that was helping us actually thought someone had run into her chair, because the headrest was so off center. No, she was really that crooked! Looking forward to seeing her sitting up tall soon. For now, we had to cut short the adjustment session cause Aimee was starting to cry with the pain.
Goal for the moment is still increasing fluid tolerance. Eventually we would like to get some calories in her! For now we are waiting for an ICU nurse to come put in a new IV as her remaining one was in bad shape and had to be removed.
Second goal is working towards getting her to the point of being able to tolerate sitting in a toilet chair for enimas/flushes.
Aimee had a good night overall. Her heart rate has started to come down. We are having a really difficult time increasing g-tube fluids, so no progress away from IV yet. We were able to get her out of bed and into a hoyer lift this morning, which she didn't appreciate, but did tolerate. The PT was upset that Aimee is still in this little space as she felt that it is compromising her care. With additional pressure from her and the nurse and the surgical team, we have finally been told that Aimee has a new space being prepared. We are hopeful that later on today we will be able to bring her wheelchair into the new room, modify it somewhat for her new form, and maybe even get her to sit in it for a short time tonight. Finally!!
No move to a more appropriate room yet, but we also haven't made much progress with moving fluids to g-tube, so we haven't needed extra equipment. Unfortunately, we lost one of Aimee's IVs and the one we have left is pretty puffy. Hoping we don't lose that one, since they used up almost all the good spots already with previous attempts/other IVs. At this point we have moved her meds off of the IV to g-tube successfully, but still need it for most of her fluids.
One more success is that Aimee did finally urinate on her own, which is good neurological news. Many more steps to go!