Monday morning we drove up, prepared for an extra day. A group of friends came together and helped us to have enough for another night in the hotel, if the weather didn't hold out. They were forecasting significant ice, and a good amount had come through on Sunday, so we knew the likelihood was high that we'd be up there for Tuesday night as well.
As we drove through the edge of Springfield the trees grew more and more grey. A closer look would show that every branch, every blade of grass, every power line framing the road was encapsulated in ice. The photog in me wanted to stop and document it, but the cautious parent in me wanted to keep moving and get past it. Luckily, by Bloomington the ice was gone from the trees and we saw nothing but white blankets of snow.
We always set out in the morning with a sense of dread. The commute is no longer a fun road trip, but one of duty - a burdensome commute that leads to sleeplessness, disappointment, and the stinging slap of reality. Jack slept for most of the trip, and when he was awake he was happy to play. The roads were bone dry, almost miraculously, and we made it up to the hospital in almost record time.
Once we got in, we sat and waited for most of the afternoon. It's always hard on them, not knowing when we'll be there, and there is often a slew of miscommunication. First we were sent to radiology for x-rays, then we saw the doctor in the hallway who said to have his cast taken off (as we did last time) THEN get x-rays. So, we headed over to the cast room and waited again while L (our favorite casting angel) completed an arm cast. At last - our turn. We got Jack ready with headphones and a movie, hoping that might help it to not be so scary. Let's just say we were wrong.
The first was a long cut down the side of the cast. L worked with the confidence of the experienced caster she is and we were grateful to have Jack in her loving hands during this process. She works so quickly and gently, and is one of our favorite people at the hospital. After the cast was cut, she used her special scissors to cut through the shirt that goes under his casts, then peeled it off like a shirt.
His back looked scary. I didn't look at first. She confirmed John's concern that it was skin breakdown. She quietly stepped aside and got a small tub full of warm water and a washcloth. While he sat on the bed, she gently washed his back and it immediately began to look better. The bruising went all the way around his pelvis and was particularly bad on his hip bones. We knew to expect this at some time during the process, and were not terribly alarmed. We were so anxious about getting x-rays, we didn't worry too much about his skin. Clearly, it's far more permanent to fix his spine - the skin will repair in time.
L chatted with us for a moment about the next day's cast and loaded us up with a baby wash, skin protectant, and powder for his skin as well as a roll of cotton padding to protect his shoulders. She was no longer going to be able to be in the operating room during the casting because it was too crowded and she was needed down in the cast room, so we were taught how to protect his neck from the sharp edges of the fiberglass. This way no matter how long it took her to trim up his cast, he would not be injured by the cast in the meantime.
The x-rays were terrible again. Jack screamed and thrashed and was hysterical, as always. Luckily they were able to stabilize him and got two good images on the first try. We lucked out this time. They sent us back to the cast room - where no one was left - and then we hunted down L2 (the doctor's right hand woman whom we ADORE). She said we were free to go, but let us use an exam room to get Jack dressed (he was still in a gown). I asked if I could see his x-rays and she put them up on the lightboard. The bottom one was from today - the top from last casting, just out of cast number 1 (70°). Although it looked significant still, it was obvious that the curve was closer to the center of his body and appeared smaller. L2 said, "IT HELD!" We were jubilant!
We drove to our hotel and checked in. The parking was ridiculously expensive and it wasn't even connected to the hotel. We had to take a random, dark elevator to the ground level, then walk to the doors of the hotel. I swear, if there is an ideal hotel it isn't in Chicago. We went up to our room and dropped off our bags, then went out to find some dinner and a grocery store. On the way, I stumbled upon the hotel we stayed in last trip and the grocery store we had been to. We got coffee for the next morning (at the grocery store) and some things to fill up Jack's belly.
After returning to our hotel, we immediately filled up the bath. For the first time, we set him down to walk. He fell. It was like his legs were Jello. He couldn't support his own body weight at all. It was scary, seeing him so helpless, and we wondered what he would be like after a year of this.
Jack was hysterical (yet again) and terrified of the water. I may as well have been pouring acid on him. I was sure security would be knocking on our door at any moment. I always cringe checking into a hotel, looking around for "neighbors" and realizing how poorly everyone nearby will sleep that night because of us. The bath ended quickly because of the shrieking, and John took him into the bedroom to get him dressed for bed. His skin was already looking so much better, and we slathered calendula cream on him again.
Once jammies were on and bedtime was approaching we started trying to get him to eat. I bought two bananans (it would be cruel to eat in front of him in the morning, so just enough for him to take one, drop it on the floor, and have another). Luckly he didn't drop one this time, but he didn't eat it either. He ate about half of a banana, then abandoned it. After a few bites of a cookie, he ate two bites of a second banana. Oatmeal cookies, usually a favorite, were a bust as well. It was as if he knew we wanted him to eat it and was not just to challenge us.
We set the alarm for 2AM, the last hour he could nurse, and went to bed. Since the cast was off, he was so hungry. And with the repeated trauma of the day he needed the comfort. So, he ate. Then rolled around. Then ate. Then laid on John's chest. Then ate. Finally he fell asleep after 10. I wish I could say the same for us. The room wasn't terrible - the bed was comfortable and the same size we have at home. But, John could not fall asleep and I slept very lightly, so every fifteen minutes (as soon as I'd fall asleep) I'd see flashes of light as he would flip channels. I was getting impatient, knowing how little sleep we'd get, and I barked to turn off the TV. Then I hear click, click, click-click-click. It's the Blackberry! "WHAT ARE YOU DOING?! GO TO SLEEP!" I think it was after 1 that he finally slept. Then, at 2 the alarm goes off. Of course, this is the night the boy sleeps. I had to wake him up to eat. At 5:14 we heard the familiar scream of a hungry boy who has just woken up. 16 minutes before the wakeup call.
I got up and got out of the room - knowing my presence would just aggravate the issue. John got up with him and walked around. He finally stopped crying by 5:30 but we had to keep our coffee cups and any remnants of food or packaging hidden. He doesn't understand all of that yet and asks for things now. It's so hard to say "no, you can't have that" when you know it's a basic need. I watched the weather, anxious to see if the ice had come in the middle of the night as predicted. The windows showed puddles and drips, not icicles and sheets, so we persevered.
As it was nearing 6, we headed out the door to the hotel. We were told even though we were going second, we'd have to arrive at 6 ("In case the other baby doesn't show up or isn't cleared for anesthesia"). It made no sense, but we've learned that our feelings about a policy won't change that policy. However, we knew that the other baby WAS going to be there so we took our time on the roads.
When we arrived we went up to the second floor where we were last time. Immediately, we were told that we had to go downstairs, to the inpatient wing! The nurses are different, the care is different - it just isn't the same down in the dungeon. I was disappointed, tired, frustrated, and knew we'd be sitting there for over three hours waiting to go into the pre-op room.
Do you know what babies who are tired and hungry love? They love having strangers come into the room - especially babies who HATE anyone and anything to do with the medical profession. If you have a stethescope or a white coat you may as well be a chainsaw weilding murderer. So, please, come in - spend as much time as you can with us - and comment how he doesn't need to be scared and that you aren't going to do anything that hurts. He totally understands that, being a rational and mature individual at the ripe old age of sixteen months. And when the blood pressure cuff doesn't work, come in and do it again - and again - and again. Oh, and while you're at it, have a resident and a nurses' aide, and an assistant nurse, and what the heck - the cleaning lady come in and do it again. The screaming is fun, isn't it?
Despite the drama, we deliver a huge tray of biscotti and a pound of locally-roasted coffee to the nursing hub in the inpatient area. I see nurses walking the hall, munching on biscotti and drinking coffee. Somehow we made a lot of friends that morning. The power of food.
Finally, it's time to go upstairs. We convince them that we are competent enough to carry our own son and that putting him in the tiny baby crib with bars and a huge glass hood over the top is going to add to his pleasant demeanor this morning. Ah, at last, the familiar faces of upstairs! We are so glad to be up there again with Jack's buddies. (Or maybe it's just the realization that the end is near and Versed is coming.)
We go through the typical paperwork and authorizations. The anesthesiologist explains to us that they normally want 6-8 weeks between a virus and a breathing tube. She does her job of terrifying us into thinking his airway may be hyper-reactive and that he may be left on a ventilator for a day. We smile and nod and sign while our gut reaction is to grab him and run away from this nonsense.
His surgeon came in, greeted us, and we chatted about Jack's skin, bruising, and a new bump we hadn't seen before. He was unusually optimistic when he announced that the second cast had gotten the curve down from 70° to 47° - even out of the cast! This was huge. The progress is usually much slower, and he had told us last time that he didn't think this would be the end for us. However, hearing this news a new light entered the room. We were thrilled.
Jack got the Versed this time, but didn't really settle down. I told John to lay him in the bed - like we always do - and then they wheel him out and he's none the wiser. But, this time someone offered to carry him - says she loves babies. We should have known. Bless her heart, she thought it would be best - that she was being nurturing and kind. But, remember - she's got a stethescope. So, about three feet from us he started crying. The Versed doesn't help this time, and we leave the room with the last image of our son screaming for us as he's being carried into the OR.
Once again, we make our way down to the cafeteria and they are closed for breakfast. This happens every time - you think we'd learn. We head back upstairs to the OR waiting room and see the other baby's mom and dad. It's so nice to sit and talk with parents who REALLY understand. We aired our grievances and shared in our triumphs and setbacks. Their beautiful baby came out first. Her improvement was HUGE! We were utterly thrilled for them. Sometimes it's hard to hear of another baby improving or being cured, but in light of our progress that morning we were ecstatic. It was working for both of us!!!
Then, it was our turn. Dr. S came out and said he had done very well - no respiratory issues whatsoever. And, drumroll please, it was down to 22° in this third cast!!!!! He was downright giddy - so obviously pleased with himself (I imagine it's hard not to be with two parents gushing and singing your praises in the hallway). His entire demeanor regarding Jack's spine has changed. Just as we were asking if we could stretch out visits, now that we're seeing improvement, he was suggesting the same. We always seem to be on the same page. We asked if there was any way to have a local doc do x-rays and send them up, and he mentioned he knew someone here (He went to Wash-U) and owed him an (unrelated) email anyway. So, he may be able to call in a favor and have us established here with a local doc as well. (AND - he said the underground rumblings are that perhaps this doctor may do casting in the future, and he wants to get him up to Chicago to see how it's done!) Fantastic.
We waited for a while and were surprised we hadn't heard any crying yet. I asked a nurse to check on him and she came out and said, "He's great. He's sleeping!" Sleeping?! MY son? Wow. When they brought him out, he was groggy, but mostly quiet. Then, as they turned the hall I saw John standing over him in the crib, trying to give him a binky. He was coughing. If you're a mom - you know this cough. I said "turn him on his side, he's going to puke." The nurse looked at me like I had three heads, John didn't react. I said, "TURN HIM ON HIS SIDE." She said, "no, he's fi...." BLAAAAAAGH!!!!!!!!! He threw up in the bed, coughing and choking. John picked him up and he threw up again. The nurse was alarmed, "What IS this? We didn't give him anything!" I said, 'It's orange, it's Versed." She said, "There's way too much here to be Versed," and he threw up again.
A few minutes later, we were carrying him back down to the inpatient wing and he was settling down. He had a 7 year old, very active, very loud, bipolar room mate by this time. Every time he'd close his eyes, the boy would scream that he wanted to move the bed, that he wanted music on, our would operate the bed himself with a loud clunk and hum. His mom wanted to chat and we just wanted silence so Jack could sleep off the nausea. No such luck.
I finally nursed him, despite his nurse downstairs saying to wait, and he was fine. He would fall asleep, then startle awake in a fit of screaming and crying, then fall asleep again. We had to take him to casting ourselves to get his cast trimmed up, but L did a fantastic (and super fast) job and we got out of there in record time. Back in the room, I hunted down Jack's nurse and got our discharge papers just as he drifted to sleep on John's lap so she said she wasn't worried about vitals. Hospital policy - you must be escorted out - so someone came to walk us out AND, why not, let's wake him up and take his vitals for the 9,473rd time of the day!!!! So much for that.
We get up to the car and the roads are wet and cold but no ice!! We cancel the hotel room, check out via phone, and hit the road. The drive was long, it got dark early and the last two hours were particularly hard after an emotionally exhausting day and very little sleep. We sort of operate on adrenaline all morning and then the fatigue hits when we're stuck in the car all those hours. It was a much longer drive home because of the rain, but what a blessing to JUST have rain! All the prayers, all the positive thoughts, were answered. We arrived safe and sound that evening to a warm house full of children and a pan of brownies! (And they were still hot)
