Wednesday, October 17, 2007

Cast #2

Sorry it has taken me so long to update. Sometimes when things don't go as planned, it takes me some time just to process and compose my thoughts. John said on the way home, "I feel like I should send out an email, but I don't even want to. I'm sick of delivering bad news."

That night was fairly uneventful. Immediately after the cast was cut off, he couldn't walk. He would pull to the right side, where his curve ends, and couldn't seem to balance well. He felt so small, so frail in our arms. I was afraid of hurting him. There was a little stone embedded in the top left of his chest. It was from the girls' Superman shirts that they wore to the Relay For Life this summer. I don't know if it got in his cast through his own clothes in the washing machine or just something he picked up crawling around, but John squeezed it and it came out.

We walked to radiology (down the hall) and took the x-rays, and the resident let me come into the conference room to look at the lightboard with him. I pointed out how skewed his pelvis was, because he was thrashing, and questioned whether or not the numbers would be accurate based on that. He agreed that it could change things, but wasn't sure how much. At that point his curve was back up to 70° and the RVAD had increased to 50° from 45.

We drove along in the rain toward the hotel. I hadn't printed directions from the hospital to our hotel because I didn't think we were going to have his cast cut off the day before. So, we attempted to navigate the streets of Chicago based on reverse directions and miraculously found our hotel. We decided since Jack was wiped out from the trauma of the cast saw, it was best to let him sleep as long as we could and get some dinner. Then, we headed back to the hotel to check-in that evening.

There were few parking spots left, and a long line at check-in. After getting settled into our room, went to the grocery store nearby to pick up a few things. There was an underground parking garage where guests could park through closed doors, sbut it scared me down there - very isolated, very dark - unsafe. So, John dropped us off and went to park.

When we got back to the room, we gave Jack his first bath in 9 weeks. His skin was rough, and flaking through his clothing all over us. We made the mistake of both wearing black and we looked like we had been caught in a snowstorm. The hotel bathtub was shallow, and we thought he'd be okay taking a bath by himself. I unpacked his new pirate ducky and we filled up the tub. The second his feet touched water he shrieked - he was kicking his feet, terrified, thrashing around. We pulled him back out and I got in to hold him. He still wasn't happy about it, but he let me bathe him. I gently washed off what I could with warm water, being careful not to scrub his sensitive skin. After the bath, John put lots of calendula on his skin and got him dressed for bed.

That night he wasn't supposed to eat past 1AM in for the anesthesia. Of course, that night he slept until after 2, and missed that nursing. He cried, and didn't want to go back to sleep, but John finally got him to settle down. Unfortunately, at that point we were up and couldn't fall back asleep, so we tossed and turned for another hour. At 4:45 he was up again, and so were we.

We made the drive to the hotel, astounded by how many people were out in Chicago at that hour. Ours was one of three cars in the parking lot at the hospital. We got in around 5:30 and headed to the same day surgery ward. We had to wait for a bit in the surgery waiting room because the nurse wasn't there yet (we were early), but once she arrived she got us all settled in. Kathy was great with him, totally patient and understanding, and had a great disposition.

For the next three hours we sat - and waited - and waited. Although we were guaranteed we'd go first, something came up in the middle of the night and we got bumped. At least a dozen people came in to apologize. Jack finally fell asleep in John's arms and I noticed my shirt was soaking wet. Luckily it dried before long, but I don't think I've been that miserably and painfully engorged since he was a newborn. I was sure I'd end up with a plugged duct or mastitis after that!

Around 9, we were led over to the pre-op area. We got settled in with our good buddy Ruby, who is so great with the grumpy NPO kids. She gave Jack stickers, a teddy bear, played with him, read him books - just above and beyond what we could have hoped for. Anesthesia came out and chatted with us for a bit, then we got to talk to Jack's doctor and care team. They gave Jack Versed again, and he sang songs, laughed, and played until it was time to go back. We kissed him goodbye and they wheeled him back without a tear.

We hurried downstairs, with Ruby's insistance, to get breakfast but we were too late. They were closed by then. So, Jack wasn't the only one who hadn't eaten all day. We returned to our room and waited for his doctor to come and update us. Within the hour, he came in and talked to us about the results. He had gotten Jack's curve from 70° to 25°. He put it on a bit tighter, hoping that it might help the correction hold, but he reiterated that it wasn't likely going to be the end for him. We talked about his surgical options, and asked some questions. I asked if re-casting more frequently might help, and he said he thought it might. Since at his 7 week follow-up we still saw it down to 55°, I knew that we had to get another cast on him more frequently than 9-10 weeks. But, Dr. S feels that he'll likely end up having surgery either at age 2 or 3. He thinks the curve was just too far progressed (being past 50°) when this all started. He spoke with another doctor who has been doing the early intervention for several years and consulted with him regarding Jack's care. The other doctor agreed that it may just be too far advanced to see correction through casting. We also talked about the risks of a curve this bad and the effects on his lungs and heart. All of us are in agreement that casting is his best option at this age, and the surgical methods are just not made for babies this age/size.

So, now we wait. We return in 3 weeks for x-rays to see if this cast is holding him. Either way, we're going to keep doing this for at least another year or so. Even getting it down to 65° is better, surgically, than starting at 90° (which is where Dr. S. thinks he'd be if we hadn't casted this past time). His options include Growth Rods - which are inserted by scraping the outer layer of the spine off and inserting screws and rods into the vertebrae. The problem with this is, he's so small and Dr. S. says that there's only so much of that outer layer - eventually, the vertebrae start fusing together on their own (almost like as if they were healing) and then the spine stiffens. So, they don't know how many years that would buy Jack to grow - he may end up not growing any further once he hits a certain age, if we do rods. In essence, it stunts his growth signifcantly. They also telescope in the middle for expansion, but we would have the major spinal surgery (that lasts 3-4 hours) to insert them, then every 6 months they go back in and do a 1.5 hour surgery to expand them.

OR we could consider VEPTR - which is like a growth rod, but it attaches to the ribs and the bottom of the spine. It is better because it doesn't cause the spine to stiffen, but they just don't know what it will do to the chest wall. And, in a child like Jackson, who has no other health problems and doesn't have a chest wall deformity, we don't want to put that on him - they just don't know what the longterm effects of stiffening around the ribs and chest would mean for his lifespan.

Right now, Dr. S. said there just aren't a lot of good options. He said, within 8 years or so, I think there are going to be better things on the market, but right now - there just isn't much. He added, "We have to try to fit a treatment to the curve, not fit a curve to the treatment - every child is different, every curve is different." And, he's so right. It's reassuring to know that this care is Jackson's treatment. And, we'll continue to get that for him in whatever forms we can.

4 comments:

Becka said...

Sandi, I just want you to know that I have agerly awauted every update. My prayers have been with you.

The slide show was precious. Jack is such a sweet child...it makes me smile just to see his face. Spend some time to hug on your girls, but when your up for it, lets get together again.

Gwen said...

25 degrees is pretty significantly smaller than 70. I hope and pray that it holds at least better than the last one.

(((hugs))) mama (and daddy and jack and girls )

Kimberlee said...

After we lost our baby I had people tell me "I just don't know what to say" And so they said nothing.

Your emotions are so raw right now as you care for your sweet baby boy, that it is hard to know what to say. I thought about what I could say to help last night.

But you know what. All I can say is I am thinking of you and Jack and praying for you. You are doing a great job. But it must be so hard.

{{{HUGS}}}

Tara said...

That is an amazing reduction in curve they got. I pray that it holds. I pray that at the very least with each cast it gets smaller and smaller.

We almost showed up on your doorstep today. But unfortunetely I remembered something I had forgotten. Alas, next week?

I spy

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