Hello dear praying friends and family! I have another quick update for Hope's 3rd post op day. Pain continues to be the biggest issue for Hope. Here's a little recap of the day. . .
Overnight last night, Hope's bladder scans showed that urine was being produced, but she was unable to pee. Hope's day started off with another attempt to void. She was only able to get a couple dribbles out, but it still felt like a big accomplishment and a step in the right direction. We took a break and then she was able to have a large void at around noon! Yeah!!! Soooo thankful for that answer to prayer by our gracious God! The surgeon had started to be concerned and assessed her for spinal cord damage resulting in urinary retention. But that was negative, and she has continued to void in excess of what is going in, so she is finally starting to diuresis all that extra fluid (about 4 litres) that accumulated in ICU. She is still puffy, but it's a bit better than yesterday and it'll only continue to get better as time goes on. Soooooo thankful for this!
So Hope had a good morning for pain, and decisions were made to take her off the IV continuous pain med infusion and start an oral form of Morphine that is long acting. We kept the IV bolus button for breakthrough pain. However, even with those IV bolus button pushes, at around 1:00 pm, Hope started to decline quickly. Her pain intensified to the point that there was no position that she could tolerate. She started having severe headache, neck pain, and even back spasms. She was so miserable that she was unable to go pee again! Yikes. . . not backwards, please!!!
Doctors were called and I spent about an hour and half talking to her surgeon, and the orthopedic resident on the phone, and working with nurses and the pain management doctors to come up with a plan for this setback in her pain management. The surgeon explained that this setback was not uncommon, and could get worse yet for the next 12 hours. He also warned to expect more of these yet to come, especially with each change in the pain management routine. We were able to come up with a plan that everyone was comfortable with based on Hope's unique history and needs. A lot of the drugs they would use in this situation are really bad options for Hope due to her brain injury and seizure history. With the new plan, we are still working out kinks and although Hope had a good sleep between 4:00-7:30 pm, she has been very uncomfortable around that. Settling to bed tonight, she has needed multiple position changes, as she can only tolerate a few minutes in a position before the back spasms and neck pain build to an untolerable level. Trevor and I worked on the med schedule to see where the holes were and how to best use the break through pain medication to help Hope when she needs it most. We also can use this schedule (although very flexible as to her needs/condition) to make sure that we don't fall behind and then have to play catch up, which is so miserable!
Hope has really backed off of eating (which was never much), and now drinking too, as a result of the increased pain. When drinking, Hope said that she had a "burning pain down my spinal cord!"
Hope's dressing was a major topic of discussion today as to how best to treat a wound that is still leaking significant amounts of bloody drainage. The surgeon wants the dressing left on for the 3 weeks, but it is saturated with drainage and has already been reinforced with more thick dressings that are peeling off, and very uncomfortable for Hope to lay on. So there really isn't a good option, but for her to put up with the discomfort and for us to keep it reinforced and sealed the best we can. The surgeon is very concerned about serious infection risks.
With the changes that we did make to the pain management and going to all oral meds, we were able to unhook Hope from the IV! Again, huge thanks to the Lord for this answer to prayer! Getting off of IV fluids allows Hope to start diuresing and getting rid of the puffiness/swelling. This is also very good for her wound and will hopefully help it to start cutting down on the amount of drainage.
Another praise today was that we got Hope's wheelchair back looking very different. . . it's soooo tall! : ) We did get her up in it once this evening and took her for a quick walk, but she was in terrible pain and was not very pleasant for her and took her a long while to get on top of the pain afterwards. . . largely our fault for letting her fall behind on the breakthrough pain med when having that longer afternoon nap. : ( I wanted to take a picture for you, but with the rush to get her out of the chair, we missed it. So will try to do that again tomorrow for ya! It was exciting to have her in her chair even for that short while. Praying it just gets better, day by day!
Well, Hope is settled now that the nursing assessment and her last med was just given now until 4 am, so I better catch a few wink of sleep.
Quick biggest prayer requests continue to be:
1. Adequate pain control for Hope!
2. Eating, drinking to improve!
3. Oxygen sats to be high enough to get rid of oxygen!
4. Hope's bowel routine to return!
5. Rest for the family. . . we are all so exhausted!
Much love to you, dear ones. Will try to have a bit more for you tomorrow. Thank you for your precious prayers. . . we are carried and sustained in God's gracious responses to each and every prayer! Thank you for your precious heart to share ideas that we can consider and use to help Hope work through her many issues. And thank you for continuing to share this journey with us! We have been reunited with many doctors and nurses that have not seen Hope for a long while, many since our first original 5 month stay. It has been a blessing for us to introduce Hope to so many special people that God used to take care of our girlie and our family for so long. It is also a joy to share the miracle and grace of our awesome God who has done so may wondrous things in Hope's life! May He be glorified in her life. . . He has made her such a tough cookie, and yet has created a soft heart in her to the things that she needs to be soft to! Her heart has been much more self controlled in her pain today, so another answer to prayer there, too! It breaks our heart to watch her suffer and beg for relief from the pain. Her one struggle is still believing/trusting that it will get better as she recovers. She made her daddy chuckle when she said today, "Dad, don't let anyone you know, I mean anyone, ever have this horrible surgery!" Sweet girl! Okay, for real, I'll sign off for tonight! We love you, dear ones, and thank the Lord for you as well!!!
You are loved!!! : )