February 15, 2022 - Post Op Day #1

 Here is an update on Hope's first post op day . . .

It was a busy day, and as such, it flew by!

Three sets of doctors stopped by today.  The first was one of the surgeons assisting in her surgery yesterday.  He reviewed the surgery with us again, and did an assessment on Hope.  The second was a transitions team doctor (if I remember right ?!?).  He did a more thorough assessment and discussed the management of her overall care.  Finally, the acute pain services team (APS) came by twice today to assess and manage her pain control plan.  This has proved quite tricky.

Hope does not like taking the pain medicine, and it takes some convincing or things getting bad enough for her to agree to it.  I've been working with her and the doctors/nurses to have a plan for regular pain meds given at staggered time to have the lowest amount of medication for side effects with the best pain control by keeping the blood level more constant.  She also still had the lidocaine infusion.  However, she is having trouble with shortness of breath and chest tightening episdoes, itchiness, nausea, and myoclonic jerks (sudden involuntary muscle movements in her right arm and leg).  The myoclonic jerks were especially concerning because they are usually precursors to her seizures, and they also were quite painful for her with how hard it jerks her body and muscles.  The doctors were quite concerned about it as well.  In fact, they asked if I would be staying with her to monitor her constantly, which made my heart happy and thankful to have that extra support for me to stay overnight again.  The APS doctors decided to stop her Lidocaine infusion as it can cause a lower seizure threshold, meaning it would make her more likely to have seizures.  They wanted to possibly add a NSAID, like Ibuprofen, to her oral Tylenol, but surgery was concerned with it being too soon for that with likelihood of bleeding.  So, the final plan was to put her on a patient controlled analgesia pump (PCA) with IV hydromorphone, where she can push a button to receive a small dose of pain medicine whenever she needs it.  The pump has settings to limit/control safe amounts of pain medication.

Her pain management continues to be moderate . . . not terrible but not great either.  She also continues to have nausea, itchiness, and chest heaviness/shortness of breath episodes when resting (she has had 7 episodes in the past 30 minutes while I type this update).  We will talk to the APS team about it tomorrow to see if they have any ideas.  She has taken medication for nausea, and I do think it's helping as she isn't throwing up and she is eating small amounts of food and drinking lots, but the waves of nausea still come, especially soon after receiving a dose through the PCA.

The APS team also ordered a drug called diazepam for spasticity, if needed.  There was a thought of trying to use it or her usual seizure rescue med (Ativan) for the myoclonic jerks which worsened to about every 5-10 seconds between 10 am and 1:30 pm.  I sat and held her right hand that was jerking and tried to help with limiting how much it was jarring her body and causing pain.  However, the myclonic jerks finally started to move the direction of fewer and fewer after 1:30 pm, and I was so so thankful that she didn't need to take the Ativan or Diazepam, as they come with their own list of side effects for Hope.  She has continued to have the odd myoclonic jerk here and there, but much less the rest of the day.

I mentioned that Hope is tolerating some food.  Her biggest limiting issue, even more so than the nausea, is that chewing hurts her due to the central line in her neck.  So, I'm just encouraging her to eat the softer food options or the ones she doesn't need to chew much or at all, like soup without chunks or cream of wheat cereal.  I'll make her some soup from home and bring it, if this continues to be an issue.  Tonight though she is very thankful for the central line . . . we just had the lab stop by to poke her for a blood sample, and I was able to ask if the nurse could draw the sample from her central line instead to save her a poke . . . yeah!!!

Hope continues to be super puffy, especially in the face, eyes, and neck area.  It worsened quite significantly last night until she could barely open her eyes enough to see.  I pointed it out to the nurse and showed her a picture of Hope prior to surgery, and she quickly made the call to stop the majority of her IV fluids . . . phew!  She is drinking good and her urine output has been bucket-loads all day!  They had planned to pull her catheter this morning, but with the myoclonic jerking and the huge urine output, I was concerned that she would need to get up frequently the bathroom, and she is more prone to have seizures when toileting.  The nurse agreed that we could wait to remove it until tomorrow morning.  The doctors later also said they wanted her to take it easy today and not do a lot of moving and walking.  Instead, Hope got up into her wheelchair and tolerated sitting up for about 30 minutes to eat her supper.  Hoping she can try more sitting up tomorrow.

Finally, I met with the patient care manager earlier today to discuss our ability to spend more than the usually allowed time with Hope, including overnight.  She had already spoken to her boss, and it was approved that I could stay overnight with Hope, as long as I would leave for periods to get sleep.  I thanked her very much for their concern for me and respected their heart in doing that, and also expressed how thankful we were that they would hear Hope's concerns and be gracious in regards to making exceptions from their strict Covid rules.  However, in talking about Trevor coming to sit with Hope while I would go home to get sleep, the patient care manager said that Trevor could only come for 3 hours.  I explained that we lived around 30-40 minutes from the hospital, so that would not allow for very much sleep time or "anything else" time at home.  She thought about it for a minute and then decided that he could come for whatever amount of time we needed to manage switching out so Hope always had someone with her.  So, Hope's number one fear of being left alone without us to help her (right up there with needle pokes) is no longer a concern!  Wow!  When our God goes before us, nothing can stand against us . . . not even strict Covid rules!!!  So, Trevor and I will continue to figure out each day how best to plan our time, with me staying overnight and being here for doctor rounds in the morning, and then him coming for a bit so I can go home to sleep, shower, eat, and spend time with our sweet Gabi . . . and our little fur baby, Connor, who is missing all his people being home VERY much!  Gabi says he keeps going to Hope's bedroom door and whining to go in.  When he gets in there, he jumps on the bed to find her, and then stops and looks at Gabi as if to say, "Where is she?"  So cute!  Here is a picture of him as I was leaving to go back to the hospital tonight . . . thanks to Gabi getting down in front of the door so he could hop up on her and look out the window . . .

 

It is hard having our family split up, but it sure makes you appreciate one another more!  And although I sure miss my hubby, I am so thankful that we can each spend time with our girlies while we're apart, as each of them need us.  Sweet Gabi made her daddy one of her delicious fried egg, ham, and cheese toasted English muffin sandwiches for lunch today, and then she blessed my socks off tonight when I was home to make one for me for supper . . . what a blessing our Gabi girl is to us!  Here is a picture of my delicious supper, courtesy of Gabi . . . 

 

Thank you so much for praying for our Hope and for our family!  We love being able to share Hope's journey with you, so that we all might be in awe of the awesome God who is over her life and story, for He deserves all the praise!  I loved hearing Hope's response to one of the medical staff who was praising her for being strong and doing well.  She replied, "Thanks!  It's God who is giving me the strength to do this!"  Amen, girlie . . . amen!!!

Hebrews 12:1-2
"Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God."