Although it is only Sunday, it seems as if a year has gone by. The gummy marks of adhesive tape and dark bruises on his hand remind us that not much time has passed, but Chicago seems a lifetime away. We wonder how he will get through an entire year like this, how WE will get through. But, I am sure that like most things, this time will pass quickly as well.
Our trip started on Tuesday, when we left for Chicago in the early afternoon. I cannot possibly convey to you what a relief having a relative and friend with us this trip has meant. To know our children are in loving hands while we were spending countless hours at the hospital, to know that they were well cared for, to have someone to sit and hash out the details of everything at the end of the day and to share activities and many meals was unimaginable. It relieved so much stress and strain on the two of us, having Vicki there. She is an amazingly patient Aunt and the girls (and Jack) are so lucky to have her near. We all are. Thank you, Vicki. Words will never suffice.
We arrived at our hotel around dinner time on Tuesday. We checked in and headed back out, hoping to find a restaurant I had read about. The wait was long and the parking lot was very full, but it was worth every minute. The food was spectacular and it was an entertaining experience. As is often the case, a kind stranger came along to comment on our family's dynamic. He, too, had raised several girls and then "got his boy." We spoke for about five minutes and then he returned to his wife at their table. For the next hour and a half we met course after course of Greek delicacies and that kind gentleman faded from our thoughts.
Finally, our waitress came and asked if we were ready for dessert and coffee - which we were. She handed John a sugar packet that read: "Go on a "worldwide" marriage encounter weekend" with a small heart drawn in felt tip pen on it. We were perplexed - had someone seen us spat with one another at the table and was suggesting we need therapy? Did someone think the children were beyond our control and we needed to get away? The waitress, in her very thick Greek accent, managed to get out the phrase, "that gentleman covered your dinner." Covered? Again, we were confused, tired from the hours on the road, drunk from the hours of eating. She said, "He took care of your dinner" and we finally understood. We were all dumbfounded. The man was gone for the evening, so we never did get a chance to thank him, but the kindness of strangers is never a memory that escapes one's mind. Thank you, kind man.
The next morning we woke up early to find the hospital where his clinic visit was to be held. We were floating with optimism, certain that we would be sent home with a child who will outgrow his spinal deformity. We almost scoffed at the thought he might need to be casted, since he had shown such improvement over the last six weeks. X-rays in hand, we entered the Shriner's campus. After checking in at the security desk, we moved over to the clinic registration area, then on to another waiting room. As the time went by, we began to seriously regret not stopping at the Starbucks along the way. In our haste, we both failed to have any coffee and did not eat a bite of breakfast. John ventured out into the hospital and found some coffee-water and Kashi bars. They were sufficient.
Although our appointment was at 8:30, no one called us back until close to 10. We were told Miss Mehta's presentation may run long, so we tried our best to be patient. After all, we would be the lucky ones to go home after all this nonsense, anyway. I slid his x-rays onto the lightboards, noting the improvement myself. When the resident came in to get our information, we shared this improvement. He jotted notes in a file and said that they'd be over shortly. "They" ended up being almost a dozen people in the room - nurses, physicians, Miss Mehta, and Heather - the pioneer in all of this who brought serial casting into our lives.
We were led into an exam room around 10:30. In the corner was a video camera on a tripod, pointed directly at the small sofa in the room. We saw the lightboard, with Jackson's films illuminated. I noticed immediately that there were now numbers scrawled across the darkness - 64 - 45 - and the letters RVAD. We knew what this meant and our hearts sank. The rib angle was measured at 45*. Forty-five. Anything over 20 is almost always a progressive curve. Jackson's curve may have looked better in the second x-ray, it may have even slightly improved, but it also could have just been his position. We learned that since his arms were raised up in that second x-ray, it masked his curve, and in fact it was worse than even what those films showed.
Miss Mehta was a gentle, quiet woman with a somewhat proper British accent. She explained to the physicians how she only observes, but does not touch until the end. She watched as Jackson played on the floor, cruised along the couch, crawled along the floor. She would ever so softly request another view - without a "nappy" (diaper), suspended, front view. As she observed, she rattled off terms we recognized: "Note the lordosis, corresponding lumbar curve, plagiocephaly, watch how he crawls." We felt almost as if we were eavesdropping as she held her voice very low so that she did not startle or concern Jackson. She was a quiet observer, ever so often interacting with him. Not once did we feel that he was a clinical experiment. She always treated him as a cherished baby, our baby, and addressed us with respect and understanding. She commented on how important it is to ask the parents whether or not they felt it had gotten worse, what they thought, how they felt about it. After hearing her address the plagiocephaly, we asked if his plagio was related to the scoliosis. She said it absolutely was and we asked if we might get documentation of that to send on to our insurance company, since they refused to pay for his cranial helmet. She said the helmet is unnecessary and it will resolve as the scoliosis is fixed. Though glad to hear we no longer needed to helmet, I found myself angry and frustrated that this was the first time any physician had said those words to us.
By the end of our visit, she asked the doctor if he'd like for her to make the assessment. With his blessing, she looked at us directly and stated how imperative "urgent treatment" was. She felt that he had good flexibility and was sure that we could get his back straight, but that it would take about a year. She said he may always have a flat spot on his back from the lordosis, but that no one would be able to tell without looking for it. Though the previous examination had been shattering, her words and mannerisms were comforting. There were no better hands, no better method. This was best.
After his exam a flurry of people rushed around in the hallway. We met a few other parents whose children were going through the same thing as Jack - an amazing blessing in and of itself. The local doctor's assistant, Linda, was on hand to set up casting appointments and get everyone settled in. She has a warm smile and a sparkle in her eyes that conveys kindness. As she explained the process, we began to get more into practical mode and knew we had a job to do. She said to sit tight and that she'd be right back.
Shortly thereafter a young woman came in to inform us that we were being admitted right now and that we'd have the casting scheduled for Friday morning. Wait. Admitted? Friday? We cannot possibly spend two nights in this hospital - we have four children in a hotel room! We attempted to explain and she became more confused. She went to speak to Linda and see if she could get more information. Finally, after a few moments of panic on our part and miscommunication on their part, we discovered that the policy is just set up that way at Shriner's. We would be admitted, then released on a pass so that we could return to the hotel and come back early Friday. Early is the understatement of the century.
We were escorted downstairs to the inpatient ward and led to a room where a teen girl was Jackson's room mate. They were not prepared for us and in quite a huff that we were ready to be admitted, but were not staying. I overheard someone in the hallway say, "What is going on with all these spine kids?!" Clearly there was a breakdown in communication and we were feeling the brunt of it. We spoke to a social worker, I assumed for hospital policy as well, and then saw a pediatrician for anesthesia clearance. The anesthesiologist did not have time to see us, so we were told we'd handle that when we returned Friday. At last, two hours later, we were able to leave. Thank goodness Jackson slept through most of it.
After returning to the hotel, we headed out to a Chicago landmark to try some local foods. It was late in the afternoon, and we managed to beat the dinner rush, then headed to Ikea. It took us a couple hours just to make our way through the massive warehouse style store, but the girls had a fabulous time. Aunt Vicki found lots of art supplies to busy the girls while we would be gone on Friday for the casting, and we picked up a few small toys for Jack - we knew we'd be able to come back up there over the next year if there was something else we wanted, and the trunk was filled to the top.
Since we had an early dinner, we were able to take the kids swimming. The doctors recommended we get him in the pool since he wouldn't be able to swim again for an entire year with his casts. Unfortunately, the indoor pool (complete with loud children who were jumping in and screaming) was too much for him and he was scared. John took him back up to the room and Vicki, the girls, and I stayed to swim in the chilly water. Exhausted from the activities of the day, everyone collapsed in bed and the big girls got a chance to sit and talk until the wee hours.
The next morning we took our time getting up and dressed, then enjoyed the breakfast downstairs. We headed out to the Aquarium (once again getting lost in that dreadfully confusing grid of highways and exits). Thankfully having purchased an annual family membership ahead of time, we bypassed the long line and headed right in. We watched a 4D show, similar to ones at Disneyworld, and Jack was overwhelmed so I took him out of the theater. We walked around, caught an impromptu sea lion training show, and looked at the fish. Lunch was on a balcony of the upper level, ever so slightly overlooking the dolphin show, and our view was spectacular, overlooking all of Lake Michigan.
After lunch, we headed downstairs to walk around a bit more, then home. Everyone was getting cranky and tired, so we got a snack and John began the trek back to the parking garage by himself. We rode home in the notoriously bad Chicago traffic, and returned to the room. I knew we'd need to go to the grocery store and get gas before our appointment on Friday, but Vicki offered to keep the kids there while we shopped. Piper decided she wanted to come with us, and with just two little ones in tow we ventured out to find groceries for the next day.
After shopping, we thought it might be best to pick up take-out for dinner, instead of trying to find a restaurant. We brought food back to the room, ate, then started the bathing process. One girl would take a shower while another was in the tub. Thank goodness we had two bathrooms! Jack was last, and we savored the last time he would splash around in the water. He blew kisses, trying to lick the water from his hands, and we played with his hair - taking pictures of the way it curls up when it gets wet.
Though we had the best of intentions, we did not actually get to sleep until after one. Anxiety set in that evening, once everyone was in bed, and again we rehashed the concerns we had about casting. I fought the urge to wrap my baby up and steal him away in the middle of the night - far from all this medical nonsense. I agonized over whether or not this was the right thing to do, if he'd resolve on his own, if I shouldn't have said that I thought it was getting worse. I wanted to wake up from this madness and have us all be back in our own home with our perfect little boy.
The alarm jolted us awake at 4:45. It was too early to be awake - too early for anything. I literally fought to keep my eyes open as we drove to the hospital. Jackson was sleepy and drifted back to dreamland. It was dark, and when we arrived at the hospital it was empty. Security seemed to take forever to open the door, and we were glad to get downstairs to the inpatient ward. Because Jackson had a room mate, I asked that they not put us in his room. He hadn't been able to eat anything since 1:15 and I knew he'd be grumpy (and vocal about it). They agreed and put us in the playroom, where we sat in his and hers gliders, watching the early morning news once six o'clock rolled around.
Eventually, Jackson's patience grew thin and John walked him around - and around - and around. The nurses tried to comfort him with a polka dot puppy, but he only tolerated it briefly. They explained that someone would be down to take us "up" shortly - but no one ever came. Finally, at seven thirty, a gruff, round woman waddled into the room and said "let's go!" We snapped out of our groggy daze and walked to the door. She abruptly told us we absolutely could not bring his stroller up there, and we took it down to the room. A young boy was with us, in his hospital bed, who very quickly made it known that he was autistic. The orderly, clearly impatient with his antics, shoved him down in his bed and yelled at him, startling all of us.
After a quick ride on the elevator, we arrived in the pre-op room. An amazing nurse, Ruby, checked us in and explained what would happen. She was sincerely sweet as sugar and awesome with the children. She brought Jackson over a little camel, and would introduce us to the swarm of doctors and technicians who came in. There were three children allowed in the pre-op room, and Jack was in the middle crib. I mostly sat in a chair, answering questions about anesthesia while John paced the floor with Jackson. They were ready to give him a sedative when another anesthesiologist commented that yesterday things had been really delayed and that the doctors weren't even there yet. I was increasingly frustrated - we had gotten up at 4:45 for this and the doctors weren't even there!? Do they have any comprehension how difficult it is to not only deny your child a basic need, but to not be able to comfort them or ease their hunger?
Finally, the 8 o'clock hour rolled past and they shortly after gave him a sedative. He became very silly, our happy little guy, kissing mama and his camel over and over. He held our faces and played as his eyes began looking heavy. He began to lose coordination and we laid him down in the crib. Every so often he'd put his hand up in the air and say, "wooo."
It was nearly 8:30 when they finally came in to take him back. They had to put a tee shirt on him first, then a knit tube that went over his whole body. They said they'd wait for him to be back there before they gassed him down and put in the IV. We said goodbye and could hear the anesthesiologist talking to him and reassuring him. He didn't even cry. Big boy.
Ruby showed us where the waiting room was, and told us we absolutely must go get a cup of coffee and eat some breakfast. We found the cafeteria, ate, and decided to head back up. We were told it would be about an hour for the casting, so we wanted to be there just in case it went more quickly. It didn't.
The time dragged on. As the minutes passed, we made small talk with the autistic boy's mom and watched Oprah. We couldn't read the magazines or stop our minds from speculating what was taking so long. Doctors would come out or parents would approach and we'd straighten in our seats hoping for an update. Why didn't they come out every hour? Was there no one who could tell us our boy was alright? We shifted in our seats, then got up to pace the hallway. Where were they? What was going on!?
Finally, the doctor came into the hallway and said everything was fine. It had been two hours since they took him back - but - they had gotten his curve down to THIRTY EIGHT DEGREES. Thirty eight. That was at least an improvement of twenty six degrees. If this held, his curve would no longer be surgical. We were thrilled. He said they just needed to trim up his cast and they'd be done.
Almost another hour went by before we heard "JACKSON!?" from the doorway. We heard his hoarse cries, his eyes still closed from the anesthesia. She had him in a metal crib, both bars up, and I noticed a bottle of apple juice in the corner. Apple juice!? I didn't give him apple juice! Why didn't you come get me? Why didn't I get to breastfeed him like I did after his MRI? Why didn't you even TELL me he was awake? A thousand things ran through my mind. I was so angry. She said "He's been DOING THIS the ENTIRE time." Crying?!? He's been CRYING and in discomfort the ENTIRE TIME in the post operative care unit and you didn't want to come get me so I could try to help him? I seethed inside, but did not dignify Naomi's words with a response.
She said, "I tried to give him a bottle of apple juice but he didn't want nothing to do with that." I BROUGHT a sippy cup! I could have TOLD YOU he took water from a sippy cup. I could have nursed him and held him and comforted him and you denied the both of us that one simple thing!? For WHAT? Your ego?! Your pride?! You terrible little person, not being able to admit your defeat and turn to his parents for assistance. I chastised her in my mind as we moved down the hall.
He laid there, turning his head from side to side, crying and groaning. He was miserable and disoriented. And, all I could think of was that this - woman - had been there. No wonder he was unhappy.
The cast was on him - it was bright blue fiberglass over plaster gauze. The tee shirt was visible underneath. She said something about them needing to finish the edges still, and left us in the inpatient room where we had checked in early that morning. The edges of his cast were as sharp as a knife. As he moved against it, it cut his neck on both sides over and over again. His inpatient nurse, Kirstin, came in to help "petal" the edges. She painstakingly applied strip after strip of moleskin and then taped it all down. Once she got the shoulders covered, I held him and nursed him. He was far more content and quiet after that. Half an hour into covering the edges, Lisa came down from the casting deparment. She was asked to trim the edges and said something about us being unhappy with the arm holes. Clearly, again, there was a breakdown in communication and no one was quite sure what they were supposed to be doing or who wanted them to do it. But, we muddled through.
Lisa had an idea for the edges and asked Kirstin if she could try it. She wanted to cut apart the tee shirt that was underneath and pad the edges with cotton, then roll the fabric over the top and tape it down with silk tape. It worked!!! Lisa was a genius!!!! The edges were not only soft, but padded, and the belly and back cutouts were left open with plenty of room for air to pass through. He would be so much cooler this way. We chatted while she worked, and eventually Jackson fell asleep and allowed us to move him around and tape it all down. She had an artist's touch and meticulously placed every fiber and every strip of tape. She virtually resculpted the entire cast. She recommended colored duct tape for the outside, since you could wipe it off, and we promised to do that once we got home. We were discharged with instructions to return in one month for a follow-up visit, and we will schedule the OR for ten weeks from his first cast for a second one.
The drive back to the hotel was another set of twists and turns that led us into unknown territory, but we finally made it back. He was so uncomfortable and still very sleepy from the medications, and we all agreed it would be best to leave. The hotel was accomodating, even though we were running very late, let us check out early. We rushed upstairs to gather our things and noticed a huge banner the girls had made with Vicki that read, "Welcome back Jack!" As we hurriedly loaded up the cart, we rolled it and promised to hang it at home. They worked so hard on it and were so proud.
John sat in the back and took care of a groggy, grumpy boy the rest of the way home. We decided drive-through and only a couple stops were in order so that we could get home as quickly as possible. It was unbearably hot outside, but the drive seemed to go quickly. Very soon we were home, in our own bed, and so very glad to be there. We soon covered the cast in colored duct tape to protect it from liquid and drool.
Jack seems to be adapting to his cast a bit more today than yesterday, but it has not been an easy weekend. Saturday he spent the day either sleeping or crying. His neck is still very sore and raw from the edges of the cast. He cannot move his head from side to side from the shoulders being positioned where they are, and cannot move his arms the way he normally would. He can't sit and balance, but he can stand. So, if he tries to sit with a toy he falls over and hits his head.
If I could, I'd carpet the entire house. I'm hating laminate floors right now. The poor guy has fallen over so many times and we have learned we literally have to just sit and hold him now. He can stand, but only directly in front of us, and he forgets that he cannot move the way he normally would. He's still in pain, we've been giving him motrin and that seems to help, and the icing on the cake is that he's getting his last molar as well as a couple of other teeth.
I feel grit on the bed from the plaster on his cast after we sleep, and it is hard to hold him now that he weighs so much more, but cannot mold to the body like he once could. He's heavy and rigid and barely fits into his new stroller. We had to adjust the carseat straps to the very top just to get him in there, and I'm not sure what we'll do once he outgrows that.
We have a year ahead of us filled with adaptations and challenges, and the last two days have made me wonder time and time again how on earth we will get through it. We never even had the honeymoon of ease like we did with his brace, where he pleasantly surprised us with how easy things were. This has been a floodgate of challenges and difficulties. But, I have to believe that this is the best thing for him. As difficult as it all is, this has to be easier to face for one year and be finished and not be surgical or permanent the way growing rods would be. This discomfort is just the tip of the iceberg of what he'd face with open spine surgery, and the risks aren't even close to being comparable. But, today, right now, it sucks. It's exhausting - physically, emotionally. We don't know how we'll manage tomorrow when John returns to work and we have four kids as well as a baby who cannot get around as well but has the strength to try. I pray he will give me some of that strength, at least in will and determination. We are all going to need it.
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