I called this post "Patterns!" And this is the pattern that we are seeing. . .
LOTS of pain
Use PCA pain medicine
Then she wakes up and starts the pattern over again! The praise in it is that she is getting more rest for sure, but the in between pain is pretty awful for her. She did get up way more today, and so there is a good reason that she is in so much pain! Here is a quick list of prayer requests, dear ones. . .
**Hope's pain level! In order to go home, Hope needs to be on oral pain med. She is very hesitant to use her PCA pain med and needs encouragement. So even though pain is still pretty bad, we are thinking of going ahead and getting rid of the continuous infusion tomorrow, and using oral pain meds in addition to the PCA button for boluses when needed, especially for movement.
**Hope's neck pain! For some reason, (we're wondering if perhaps due to being stretched out in traction on spine for so long) Hope's neck is probably hurting more than anything. Any movement requires a ton of support to her neck and it still hurts her a lot.
**Hope is having bad headaches. . . not sure why.
**Hope's catheter came out today, but she has not been able to pee yet. . . it's been about 12 hours now. Please pray that she is able to void soon, and that there are no issues there. She also has to get up to go to the bathroom now, which means a lot more movement (she was up 3 times tonight trying to go, to no avail!), and thus a lot more pain! Sooo frustrating for her!
**Hope's wheelchair was taken to be adjusted to her new body shape. Please pray that we'll be able to get that back before the weekend so that we can have it to use for her, and that it will be a good fit for her to continue to progress in her sitting up and getting out of bed.
**Hope's back wound continues to ooze/bleed large amounts, when usually that has stopped by now. It is so bad tonight that it is leaking through the dressing/guaze that had sealed the wound, and because the surgeon does not want anyone removing the dressing at this time, the nurse could only cover it with large abdominal pads and try to use large pieces of dressing tape to apply pressure. We are also leaving her on her back overnight to try to use pressure to help slow the bleeding. The wound is also very swollen and very sore!
**Hope's hands and feet continue to be numb, tingling or falling asleep at various times. It really bothers her.
**Hope is still needing lots of oxygen support to continue to keep her sats at a safe level. We are hoping and praying that this will improve as we are able to cut back on the narcotic pain med.
**Hope has developed itchiness as a side effect of the pain med most likely. It is not severe, but it is another bothersome symptom right now. I notice her reach and itch her chest, arms, face or neck as soon as she wakes up. And she had one hive on her neck this afternoon, so praying that it doesn't get worse. There is a med that we tried to see if it helped decrease the itching, and it might have helped a bit, but not completely, so would be great to include in our list of prayer needs.
**Hope is still very limited in what she can eat. She literally eats a couple bites of food for each meal, if any, and nothing in between. Her tummy is making noise and indicating that her GI tract is up and running again, but her belly is bloated and uncomfortable, so we are not pushing food, but letting her do what feels comfortable. But better nutrition would definitely help healing, so praying this gets better soon!
**Hope's heart and attitude! Please pray for Hope to have a heart to please the Lord in all that she is going through, even the painful and hard times. She does great for a lot of it, but sometimes when she's in a lot of pain, and always when there are hospital staff involved, Hope gets angry in her pain, and can lash out verbally. It's so hard because I understand she is in an excruciating amount of pain, and yet we desire to honour the Lord in this time as well. So giving her grace, but truth also, and praying that the Lord will continue to teach her how to lean into Him all the more when she is being pushed past her own coping abilities. She changed her heart over and over today, for which we are thankful, but it becomes a struggle again when another staff member comes in to "hurt her," is how she puts it. She needs to grow in her trust of the Lord, that all the things that are being asked of her to do, even though they hurt, are for her best in the long run of her recovery. I was thinking today that her faith that God will redeem this hardship to accomplish good purposes in her life, is where she needs your prayer of encouragement, dear ones!
Well, I probably forgot something, as I keep dosing off here as I type. So I will end with that for now, and continue to keep you posted on how things are going. She is resting now and so I guess I should try to get some rest while I can. Rest for our family is still a prayer request as well. I was falling asleep and swerving on the road last night on my way home with Gabs, and Trev and Gabs did not get home until after 12 am tonight, with Hope's difficulty with not being able to pee now that the catheter is out. He finally had to give up and leave, as poor Gabi is exhausted and has another school day to get through. I needed to wait on nurses to help me transfer her now. She has felt the urgency to go two more times, and we have got her up, but she just can't go. . . the pain is super distracting when she is up to try to go! She sat the first time for almost an hour trying to go, and the pain built to a severe level. She just tried again about an hour ago with no results, so after reinforcing her dressing again, which she was not a happy camper having her incision pressed on so much and firmly for the pressure dressing, she finally settled to sleep, absolutely tuckered and exhausted. But she still really needs to go pee!
This is going to be a long recovery. . . we knew that. We knew it would be a hard recovery too. But as I was explaining to Hope tonight during the dressing reinforcement, as she was frustrated and wanting us all to leave her alone, that I can't understand or know exactly how horrible the pain is that she is experiencing. What I do feel is the horrible pain of watching someone you love with all your heart hurt, really really bad! And that is something that she is not able to understand right now from her perspective. So it requires lots of leaning into the Lord, being gracious with one another, and trusting Him to see us through, as well as hope for things to get better with time.
Thank you as always for your precious prayers and encouragement, dear ones! You are so very loved!!! : )