Part Three:
Due to the prayers of those I love, Danny and I managed to get 5 ½ hours of sleep the night of November 4th. We had to leave our house around 4:50 am on the 5th for an arrival time of 6:00 am at Hasbro Children’s Hospital in RI.
Pre-op went about as you’d expect. Every person who would be in the OR with Caleb came to introduce themselves and ask the same questions over and over. Caleb wasn’t visibly nervous and they did a great job keeping him preoccupied. Need for Speed racing, anyone? I thought one of us would get to escort him to the surgical room, but suddenly he was just walking down the hall with the anesthesiologist and that was that.
Danny and I made our way to the family waiting room, along with half a dozen other groups, where the only way to distract ourselves was to listen in to the reports given to the other families. I learned that four hours is actually a lifetime. While all the other families received updates, we reaped no such gift. In fact, when our names were called, we walked out into the hallway, fully expecting our summary, only to be told we were going directly to the PICU to see Caleb. Because I had no prior knowledge of how the surgery went or how Caleb was doing, I was extremely nervous to enter his room. On the queasy scale, I’d say I fall halfway between Surgeon General and Private Squeamish, but if you had read as much about this surgery and its complications as I had, you would let your husband walk into the room first too.
He was okay. Ghostly pale, extremely sleepy, drugged, but okay. The first thing he groggily said to me when he noticed I was at his bedside was, “See? I told you I would die.” Oh, my precious baby.
At this point you may be wondering, like Caleb was, what the surgeon had actually done to him?! Even if you aren’t interested, I’m going to tell you anyway. Suboccipital decompression with a C1 laminectomy and duraplasty. Those are some big words, so I hope I can clearly explain it all. Anchoring Caleb’s head with several small pins in a vice-like contraption, the surgeon began by making an incision in the back of his head. The “suboccipital decompression” part of surgery was when Dr. K. removed a 6 cm2 portion of skull at its base, and the “C1 laminectomy” was where she took a tool much like a diamond dremel to shave off a section of his first cervical vertebrae. Before she was able to complete the “duraplasty”, she had to remove the Myo dural bridges, soft tissue that connects the suboccipital muscles to the spinal dura mater. This tissue was tight, hypertrophic (overgrown), and quite scarred, and the removal of it all allowed the dura to relax. Now she could continue with the “duraplasty”, the part where she cut open the dura (the dense, fibrous, membranous tissue around the brain), removed the arachnoid layer (a thin membrane that surrounds the brain), and attached a patch to the opening. Together, all of these procedures allowed the still-healthy cerebellar tonsils to miraculously spring back up into their proper positioning inside the skull and create a wider pathway for the cerebrospinal fluid to flow more freely.
I don’t want to put words in Caleb’s mouth, but I’d say the hardest part was still ahead of him. The surgery was no inconsequential ordeal, but recovery was going to be worse. His time in the PICU was brutal. Balancing the hourly neuro checks with providing pain medication meant that Caleb never slept more than thirty minutes at a time and was in near constant agony. He had an IV set up in both hands, but the nurses were immediately pushing oral pain medication. One of the goals to be met for discharge was that the patient could swallow the medicine and be off the IVs. Well, Caleb’s first attempt at liquid tylenol led to immediately bringing it right back up again. I knew there was no way he’d attempt swallowing a pill, so meds continued to be administered through the IV. That produced its own level of discomfort; Caleb winced and cried out in pain every time they pushed a medication through.
A terrible cycle was created: Caleb is in pain, so he needs meds. He doesn’t want liquid medicine because his association is now that it tastes horrible and makes him throw up. He also doesn’t want the nurse to push it through the IV because that burns his hand. He’s exhausted and therefore can’t competently or calmly handle the situation, so he cries and thrashes which makes his head hurt worse. His belief is that administering medication just makes his head pain skyrocket when in reality it’s that we’ve fought with him and for him for so long that the time between doses was too long and would take time to kick in.
I don’t know why I tried to sleep that first night. Between the hourly neuro checks, the nurse coming in for vital signs (which didn’t always correspond with the hourly checks), Caleb asking me to call for medicine or ice or some other need, and him developing a fever and having a few more vomiting episodes, I might have strung a 40 minute nap together once. It was no small miracle that I was able to function and help Caleb on so little sleep, and I absolutely attribute it to the prayers I know were going up on our behalf.
*****
And so the night passed in a fog. While I was fighting to keep my eyes open during the days, Danny was handling work crises, taking care of the other kids at home, and driving the hour and a half back and forth to be with Caleb and me each day. We were still in the PICU Wednesday morning but the plan was for Caleb to be moved up to the pediatric floor by the afternoon. As we waited for a room to become available, a Physical Therapist came in to begin the process of getting Caleb to move out of the bed and into a chair. This was because another goal to reach in being allowed to go home was being cleared by PT in standing up, walking, and climbing stairs on his own, or at least with an escort nearby. If you ask Caleb what the worst part about his hospital stay was, he’d probably answer that it was when he had to move from the bed to the chair for the first time. “It hurt sooooo bad!”
He still wasn’t taking medicine orally at this point and it seemed like we just weren’t on a good schedule for regular doses either. I could not fathom the idea that he had to now move from the bed to the chair less than 24 hours post-op, especially when he was in such obvious pain. Can you imagine anything worse than making eye contact with your child who is crying and reaching out to you in pain and you cannot do anything to help them?
Later that afternoon a room opened up on the regular floor, and after they helped Caleb back into the bed, he was wheeled upstairs. By this time, it had become apparent to me that, for whatever reason, the nurses were not even trying to administer pain meds on a schedule. It seemed like it was up to us to ask for it, as needed. I also realized that Caleb did not have the wherewithal to understand that when his pain was creeping up to a 5 or 6 on the scale to ten, it was time to ask for something. Instead, it wasn’t until his pain was at an 8 or 9 did he have any awareness of how bad it was getting. That just seemed to put him back on that horrible cycle we had been dealing with all Tuesday afternoon, evening, and night. To top it all off, he was still struggling to get down any medicine orally, whether it was a pill or liquid, and the IV method was still extremely uncomfortable.
You have a child who just had major surgery, isn’t getting proper sleep, hasn’t eaten since November 4th, can’t discern when the pain is ramping up, yet isn’t on a schedule for pain relief?!? I talked it over with the nurse who then shared my concerns with the neuro team. Approval was gained to provide round-the-clock dosages of general pain meds and muscle relaxers to keep Caleb comfortable. While that helped stay on top of the pain, it didn’t solve the problem of him having a hard time ingesting them. But we pressed on.
Thursday brought a few delights. One nice improvement was that the stretch between neuro checks went from one hour to four. Another was that Caleb took bites of food, if you can call french fries “food”. He also walked down the hallway with the therapist. His steps were small, he listed to the left, and he wobbled, but he cleared the goal.
Perhaps the most exciting bit of the day was the receiving of a very big surprise!
It was wonderful to see a smile on his face at last. As the day wore on, Caleb seemed to improve by degrees. Having pulled out his remaining IV after a traumatic 35 minutes of fighting with me and the nurse the night before, Caleb was getting better at taking the medicine orally. Though the first attempt on Thursday morning resulted in him vomiting everything again, his abilities (and sensibilities!) seemed to be returning and he was even swallowing a solid pill.
By Friday he was looking more and more like his usual self. Pictures don’t do it justice, but due to the tightness in his neck and shoulders, he looked like a football-playing turtle. He was off all IVs and taking meds orally, at regular intervals, which was improving his disposition hugely. He walked down the hallway and around the nurses’ station and ate several bites of his pancake breakfast. All that was left for discharge was to walk up and down a flight of stairs. It was all I could do to convince him not to run!
While we waited for the hospital staff to arrange the discharge paperwork and Danny to arrive, we spent a long while at the window in his room, playing ‘I Spy’ and chatting. It truly felt like we were on the road to normalcy.
*****
Armed with a bag of medication and a giant lion, we made it out of the hospital and into the car. Thankfully, it was an uneventful ride home. James was happy to have his buddy back, and Caleb was happy to be back in his own bed. He sure had a lot of sleep to catch up on!
There have been speedbumps in his recovery but nothing that has warranted a trip to the doctor or back to the hospital. We were warned that it could take up to six months before we see any positive changes in Caleb’s condition. It takes at least three months for the cerebrospinal fluid circulation to adjust. There is no question the Lord provided the right surgeon, preserved Caleb during surgery, and sustained us throughout. We are truly grateful for all the prayers that went up on Caleb’s behalf and continue to hold them precious during this recovery period. It is hard to sit in this ‘holding pattern’ of sorts, managing pain and boredom, while we wait to see if the surgery was a success. It is also hard not to become discouraged since pre-existing symptoms persist. How wonderful that we can rest in the knowledge that “If it be so, our God whom we serve is able to deliver…” In the meantime, we’re thinking of installing seat belts on every chair Caleb sits on!
How good is the God we adore,
Our faithful, unchangeable Friend,
Whose love is as great as His power,
And knows neither measure nor end!
‘Tis Jesus, the First and the Last,
Whose Spirit shall guide us safe home;
We’ll praise Him for all that is past,
And trust Him for all that’s to come.
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