February 16, 2022 - Post Op Day #2

 Wednesday has been a challenging day for Hope.  Here is an update on post op day #2 . . .

Hope and Mom catching a quick selfie while she was up in her wheelchair.
We tried to watch a short show on Netflix, but she didn't last too long before she had to go back to bed due to pain and nausea.
Her face is a whole lot less puffy since stopping IV fluids!  Yeah!!!

This was a picture of her poor puffy face, lips, and neck from yesterday!
Her daddy joked with her that he didn't know her surgery included Botox injections!

After a really rough night, Hope decided that she was not going to take any more of the IV Hydromorphone through the PCA (patient controlled anagesia) pump.  It was a good decision in the resolution of the chest tightness and shortness of breath episodes that were happening all through the previous night.  It was a challenging decision in the management of her pain.  The only pain med option she had then was Tylenol, and taking Tylenol alone does not quite cover the post op pain after such an extensive surgery.  But, Hope was determined that she was not willing to continue to suffer the side effects, and she also was determined to avoid IV medications for two reasons.  One reason was to work towards the goal of going home; you need to be able to control pain with oral analgesics.  The second reason was she was really struggling with the sensation of infusions through the central line in her neck.

We explained all of Hope's concerns and requests to the day staff, and then waited for the APS (acute pain service) team doctors to come see Hope for an alternate pain med plan.  Sadly, they were not able to come until around 5 pm, and so she had gone for 16 hours with only Tylenol to cover her pain.  In that time, she had her Foley catheter removed, and so she started getting up to the bathroom also.  By the evening, her pain was pretty out of control.  In addition, Hope had continued to have nausea all day.  She was not eating or drinking near as well as the previous day.  And as I had shared in my last post, she had not slept for so long, and was incredibly exhausted.  However, she did have her first solid sleep, from 10 am to noon . . . 2 whole hours!!!  My heart was so thankful to the Lord to see this!!!  I wanted to share it for you to see also . . . 

She likes to sit with her legs crossed, so she tried this position lying in bed,
and that's when she fell asleep!

Our sleeping beauty!!!
When she was up in the bathroom, I took the opportunity to give her a good wash and to braid her hair so it would stop sticking in the central line dressing.

We discussed the pain options with the APS doctors, and the other challenge that faced us was no other pain med options.  That may sound weird because there are so many different pain meds out there.  But for Hope, some are not recommended due to her brain injury and her previous history of drug sensitivity.  Also, the usual anti-inflammatory drugs that are often paired with narcotics and Tylenol for pain control were not an option because the spinal doctors would not allow them . . . they are thought to interfere with the bone healing needed for the kind of surgery Hope had.  The Lidocaine infusion had not worked due to lowering her seizure threshold.  We were super thankful to have figured this out the day before, because as much as Hope was having a challenging day with many issues, at least she was no longer having increasing myoclonic jerks and gearing up to have seizures!

After much discussion with the doctors who patiently walked through multiple scenarios with us, I was able to convince Hope that the best option was to stick with the Hydomorphone, but to move to an oral mediation instead of the IV one.  Hope was given an order for 0.5-1.0 mg of Hydromorphone orally . . . she agreed to try 0.25 mg, which meant cutting the tiny 1 mg pill into quarters!  The one nurse laughed and said he had never in his 20 years of nursing experience given that small of a dose before, and we laughed with him . . . leave it to Hope to create another "I've never seen that before" moment!  Ha ha!  However, the good news was that those shortness of breath and chest tightness episodes she was having did stop!  We were so thankful to our gracious Heavenly Father!  And now, we at least had a pain med platform to work with and figure out what was going to best help Hope move forward in her recovery.

The nausea has continued and so we've been trying to give her the Zofran (anti-nausea medication) more regularly to try to get on top of that, too.  I'm starting to think that maybe some of Hope's nausea is related to the neurological vertigo that she can get.  She asked me to be in a side lying position several times throughout the day, and although it was very comfortable for her surgical pain, she couldn't stay in that position for more than a few minutes due to increased nausea.  Basically, she feels more nausea whenever her head is turned to the side.

In the early morning, Hope was feeling very uncomfortable and thought she needed to try to have a bowel movement.  I asked for help to get her up to the bathroom for the first time, but the aide was too nervous to move her.  With Hope insisting that it was urgent, I decided to go ahead and try to sit her up and then transfer her using the wheelchair into the bathroom and onto the toilet.  Wow, I was amazed at how well she actually was able to stand up and pivot transfer in/out of the wheelchair and toilet, especially with how much pain she was in!  So, we asked for the Foley catheter to be removed and the IV to be unhooked since she refused to take the IV pain med anyways.  This eliminated at least two of the things bothering Hope, and she was tickled with that!  Hope is not moving her feet very well yet, but that should improve with time and continued recovery.  She has not been able to have her first bowel movement yet, so that has continued to be uncomfortable for her. 

Finally, Hope's drain from her back surgical site continues to drain a lot of bloody drainage . . . a little less bloody than yesterday, but still a lot of drainage.  As a result, her hemoglobin is continuing to drop.  This morning it was 80.  Her doctor said that they will plan to give her another blood transfusion tomorrow if it drops any further, as they don't want her to drop below 80.  We're praying that she can avoid another blood transfusion.  Even though the central line is bothering her a lot, it is worth leaving it in so that she does not need to have daily pokes for blood work!  This could also explain why she is feeling so crummy and light headed all the time.  The first time up to the toilet, she almost passed out, but I just stood in front of her and held her while she rested her head on me, and it passed.  We just continue to move slowly when I transfer her in/out of bed and on/off the toilet, and subsequent bathroom trips have been better. . . no more almost passing out!  She is up to the bathroom a lot . . . 5 times in 8 hours with me.  She had to wear oxygen for a while because of the low hemoglobin, but it was adding to her nausea as well, and so they let her take it off later in the day.

Our plan for this evening is for Trevor to come and spend the night with her.  I have not slept since my 3 hour nap on Tuesday evening, so it was a challenging day for me, as well.  I keep falling asleep trying to type this!  But God's grace is always sufficient, and I can feel His strengthening and His "second winds . . . or third or fourth or more!"  However, I am also so so thankful for Hope's amazing daddy, who is able and willing to step in and take all this on!  I have a nursing background, and fall on that knowledge and experience regularly.  Trev doesn't, but you wouldn't know by how he handles it all!  And he also brings the humor and fun; something Hope just adores in her dad!  A dose of "daddy" is probably just what her battered little body needs, especially because she is missing her sister so so much . . . this has probably been one of the hardest things on Hope this hospital stay.  She is so close to Gabi, and she can barely even talk about her without getting emotional.  No wonder she's so determined to get back home!

Thank you, as always, for being so genuine and compassionate in your love for our Hope and our family!  Your prayers are so treasured, and your many messages and notes have been such a sweet encouragement to sustain us through this difficult week!  I have been reading my texts to Hope a few at a time, and I cannot emphasize how much it means to her, especially when you send Scripture verses.  She (and the rest of us, too) find such refuge, comfort, and strength in God's Word!  I will confess that I have 77 unread texts currently on my phone, so we haven't got to them all yet, but every time we can snatch to read a few more is truly precious and sweet balm to our hearts!  How incredible is the love of God shown through the love of each of you!!!  My heart is full, even as my body aches with tiredness!  How good our God is!!!

Praying for the gift of sweet rest for our sweet Hope, for Trev as he spends the night in the hospital with her, for myself and Gabriella as I get to go home and will desperately want to spend time with Gabi because I have been missing her terribly, and also for each of you!  I know many of you are in your own difficult trials or you are hurting for loved ones in difficult trials.  May the Lord comfort and sustain you, may He be your place of refuge and strength, and may your hearts be full in wonder of the love of God for us!!!