Lucy is choosing not to sleep today, bad decision in my opinion, but she really isn’t interested in my opinion. She is tired, just can’t seem to fall asleep again. Dr. R came by this afternoon and ordered her to take a nap, she is refusing to follow doctor’s orders. Maybe a day of no napping means a night of great sleep…here’s hoping!
She is officially off the IV Dilaudid and only using PRN doses when needed. She feels clammy and is quite jumpy, all part of the withdrawal process. There was a rush to wean her off of the IV Dilaudid today because they wanted to start Lucy back on lipids tonight. Lipids and Dilaudid are incompatible, which means that you can’t run them at the same time. We have four points of access coming off of Lucy’s double lumen Broviac, but even with all of that we don’t have enough access to run all that she needs to have run so something had to go.
She had therapy for the first time in three weeks this morning. It was difficult to see her struggle through it, she attempted to stand up only to realize that she can’t. We offered her assistance but her pride is just too big. When Lucy is ready she will show is what she is capable of doing, for that I have no doubt.
We have several tests scheduled for tomorrow all of which are looking at her renal and bladder function. It is believed that Lucy’s hypertension is related to her kidneys not functioning. We know that when we are able to pull fluid off of Lucy’s body that her blood pressures come down some and her heart rates return back to her baseline. After a few hours her blood pressures start to increase and her heart rates decrease as well as her fluid output. As for her bladder, the plan is to pull the Foley at 2 am and at 8 am do a post void residual to see how much urine is in Lucy’s bladder. We will do this several times throughout the day tomorrow. If it looks how we think things will look, she will have a Foley placed again tomorrow evening and we will keep that in until we return from our MAW trip.
After watching me type all of this Lucy has fallen asleep, and so must I. Good night, sleep tight….
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I hope that Lucy is having a better day today - and that you are, as well. I'm glad to hear that she is slowly improving and pray that will continue to be the case each and every day. She is such a blessing. She is also so blessed to have you as her mom and to have such a supportive and loving family to help get her through all of this.
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