We are in need of prayer for Kathryn. I’ll try to quickly update things since her admission to Children’s this past Monday, and then lay out our prayer needs.
Early Monday morning we came to Cincinnati Children’s so Kathryn could be admitted for a 24-hour clean-out to prepare her body for her bladder surgery. This day of prep is not fun and involves placement of an NG tube and a PICC line, nothing but clear liquids to eat, and hours and hours of changing bed sheets over and over again.
Kathryn rocked every minute of this. She was truly amazing.
We also had the added complication of finding a way to keep Kathryn’s hair up and safe from the multiple messy sheet changes. This girl knows how to grow hair!
Our first night was very long, but only because her PICC line kept setting off alarms, and because it took until after midnight for her body to complete the clean-out. We all only slept for 2-3 hours.
During one sheet-changing session, Kathryn’s special blankies got messed up and needed to be laundered. It was after midnight, and our nurses offered to do that laundry for us so that we could get some sleep and so Kathryn would have clean blankies for surgery the next morning. We have had the most amazing nurses all through this whole journey, so far!
Early Tuesday morning, they took us down to surgery. Kathryn was calm, but almost non-responsive as she tried to cope in her own sweet way with the stress she was feeling. She lost herself in her music with her new MP3 player; held onto her new doll, Bella, sent to her by dear friends; and clutched her family photo in her hand.
Her separation from us went very well, thanks to Versed through her IV, and they took her into the OR at about 8am, Tuesday morning.
Her urinalysis from the night before had shown another urinary tract infection, but they continued with surgery plans, warning us that, if they should find actual inflammation in her bladder once they scoped her, they would have to cancel.
We also knew that, if her appendix wasn’t healthy enough to share for forming the necessary tubes for both her Mitrofanoff (an opening in her abdomen for emptying her bladder), and for her Malone (an opening in her abdomen for emptying her colon), they would have to use intestinal tissue to form one or both of these tubes. This would result in a longer surgery, a longer hospital stay, and reduced chances of success.
We were thankful to learn as surgery progressed that her bladder looked good enough to continue, and that her appendix was healthy and large enough to use for both procedures.
Eleven hours later, she was finally in recovery, and we were able to be with her again. She was weepy from the anesthesia as she usually is, but she didn’t seem to be in any pain.
They were able to place an epidural at the beginning of the surgery, and this seemed to be helping a lot. None of our other kids was ever able to have an epidural because of their spine and/or spinal cord involvement; Kathryn has cerebral palsy, so doesn’t have these complications, making her eligible for the epidural. This was very good news because any medicines that affect her mental clarity tend to make her emotionally unstable, and this instability can cause a lot of difficulty in trying to assess her level of pain, communication, and overall recovery. And, even worse, it can lead to seizures for her. Having the epidural greatly decreased the chances of needing narcotics to control her pain, and helped in our goals to keep her mind as clear as possible. This girl can handle almost anything you throw at her as long as her mind is clear and her mommy and daddy are by her side. I can’t even begin to say how thankful we are for a team of doctors and nurses who are so open to listening to us as we try to explain Kathryn’s unique challenges in these areas. They are all working hard to find the right answers for managing her pain.
We got back to our room at about 8pm, and by 9:30, we were all tucked in for the night. We had an excellent set of nurses who kept visits to the room to a minimum and did them almost silently. They were amazing. Also, Children’s now has egg crate mattress pads available for purchase, and it was pretty incredible what a difference this made on the parent sleeper. We all slept very well, straight through the night.
Now for our prayer need.
Things have, unfortunately, taken a bad turn this morning. Her epidural does a good job of handling the pain in her 9-inch abdominal incision, but it doesn’t take care of the bladder spasms caused by the work that was done there. We had to use Valium to address that, and, as we feared, this has left her so mentally foggy that she is struggling to hold her emotions in check, cope with the pain, follow instructions, or even really respond to us. At least twice now, we were afraid we were building toward a seizure. Thankfully things resolved both times. So far.
And even more concerning is the fact that she is running a fairly high fever — higher than is expected for just a typical post-op fever. Her white blood cell count is elevated, but they aren’t sure where the problem is. They are suspecting her lungs and have ordered stacked breathing, using a mask and administered by a respiratory therapist.
Because she is so “not herself,” she fought like a little (but very strong) animal when we tried to do this. This is totally unlike her, and it broke my heart to watch her fight and to see the fear in her face as she tried to understand, through her mental fog, what we needed her to do.
They also had a PT come and help us do a couple short periods of sitting up, to hopefully help her lungs open up. This also was so very hard for her, but she tried valiantly to cooperate. Even just remembering this brings tears to my eyes.
We need this fever to go away. The pain team has told us that, if it’s not gone by this afternoon, they will have to pull her epidural because they can’t risk any infection making it’s way into her spinal area through the epidural catheter. This will mean resorting to more mind-fogging narcotics to control her pain.
We are worried about our girl. She really is not doing well at all. Even though we have stopped the Valium for now, she is continuing to become more and more lethargic, less and less responsive, and sleeping more deeply so that it’s increasingly hard to rouse her. It’s easy to be afraid. This is hard.
Please pray that her fever will leave her body. Please pray for us as we try so hard to make decisions about managing pain — and even determining if any distress we see really is pain, or just emotional reactions to the previously administered meds for pain.
And please pray that we will not allow fear to dominate our hearts and our minds. We have felt God’s presence so close through these long months of struggle for Kathryn. We know He is still with us now and will walk us through whatever is ahead. We want to remain aware of this river of peace that flows under and through all human emotions and fears.
“The Christian is far from being entirely exempt from those chafings and disquietudes which seem inseparable from human life. But through all this, there flows a river. A heavenly mind soars above a poor dying world, casting its daily need upon the heart of a kind Providence, making known it’s requests unto God. It realizes a peace which passes all understanding.” ~ Octavius Winslow, 1856
“The Lord is near. Do not be anxious about anything . . . and the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 5:5-7