Post-Op Recovery

Here's the scar from the decompression surgery Madeline had about 2 weeks ago.  The incision is actually very straight but I can never get Maddy to hold her head still for a picture.  The hair is already starting to grow back where they had to shave it.  Other parents have told me that it should be barely noticeable as she gets older.

Maddy had a follow-up appointment with the neurosurgeon yesterday.  Everything's looking good.  He used absorbable sutures so there weren't any regular stitches to remove (yay!!).  When the doctor was done examining her, he turned to the other doctors (because there are always more than one) and said, "She's the only patient I've ever had who woke up after surgery and smiled at me."  Our sunshine girl.

The whole point of the surgery was to prevent problems associated with spinal cord compression.  She didn't have any symptoms to resolve.  So while other kids go through this surgery and their parents see improvement like better appetite or moving around better, all we have is the peace of mind that we are hopefully helping to prevent those problems for Maddy.  The one issue she had before the surgery that we thought might be compression-related was her unexplained vomiting.  Unfortunately she is still throwing up about once a day.  Kind of a bummer that we still don't know what's causing it.  The neurosurgeon was disappointed that the surgery didn't help with that.  We are still taking her to a GI specialist who she'll see again in February.  She's still growing and gaining weight, so no one is overly concerned just yet.  And really, most of the time Maddy doesn't seem to care that she throws up.  As long as we give her more food when she's done, she's pretty content.

Since she's been back home, Maddy has been moving around just as much as she ever did.  She's still combat crawling and trying to climb the stairs.  Sometimes when she's on her tummy she puts her forehead on the ground and flexes her neck like it's sore and she's trying to stretch it.  But she really hasn't given any other indication that she's in discomfort or pain lately.  In the first few days at home we gave her a couple doses of the heavy-duty painkillers.  We gave her milder pain medication daily, as needed, for about a week.  This past week it's been every other day that we give a dose of Tylenol or Motrin.  

The biggest post-op problem she's had has been with sleep.  Before the surgery she had been sleeping through the night.  The last two weeks have been like her newborn months.  She got up, on average, 5 times each night.  Sometimes nothing I did would comfort her.  After talking to lots of people, we're thinking that these are the negative effects of the experience of going through surgery and being in the hospital.  It makes me sad to think that she has undergone trauma.  But I know it's better than the alternative of doing nothing and watching her suffer the effects of compression.  Last night she only got up once.  Of course, I woke up half a dozen times thinking that she was about to cry.

Decompression Surgery

One week ago Madeline went to Cincinnati Children's for her decompression surgery.  She got her first pre-op bath at home Monday night and another bath at 3 a.m., the same time her strict fasting started.  We drove to the hospital at 4 a.m. to check in by 5:30.

She got measured and monitored in the intake room.  We waited there for a long time.  Then a whole bunch of people came in at once, just like our nurse predicted.  The nurse, several anesthesia people, and the surgeon explained what would happen over the next few hours.  They were all awesome.

Mike & I got to walk with Maddy all the way to the O.R. doors.  We handed her to the anesthesia team, said goodbye, and walked out to the waiting room.  And then I cried.

The procedure was technically called something like "posterior fossa decompression with neural monitoring."  That's a fancy way of saying the surgeon scraped away some of the bone at the opening at the base of the skull, to make the hole bigger so it's not squeezing the spinal cord.  There are, like, 800 things that can go wrong if your spinal cord is pinched.  Maddy also has cervical spinal stenosis, the fancy way of saying the vertebrae at the top of her neck, where the skull sits on the spine, are also part of the squeezing problem.  So relieving that pressure is called "cervical laminectomy," which means the surgeon cut away a section of the bone of the very top vertebra.

The anesthesia folks (seriously, we talked to at least three - 2 anesthesiologists and a nurse anesthetist) had described their part of the process.  They would put her to sleep with a gas mask, then start an IV in one of her hands for the anesthetic medication (just like she had for the MRI).  Then they would intubate her, start a second IV in the other hand, and start an arterial line to monitor stuff like blood pressure.  The breathing tube would be through her nose or her mouth.  Then they would set her up for neural monitoring to be able to see what was going on with her spinal cord at all times.  That would mean a bunch of little needle-like monitors all over her, and they might leave marks that looked like mosquito bites.  They told us that as soon as the surgery was over, she'd be taken to the ICU where we could see her.  They also warned us that we might be shocked at Maddy's appearance.  She might still have the breathing tube, and her face and head might be swollen and discolored because she had to be face-down for several hours.  It sounded awful.  So we were relieved when we finally saw her.

In the ICU shortly after surgery, looking much better than we expected.  They had her on an adult-sized hospital bed.  It was so strange to see this little baby at the top of this gigantic bed.

She was so tired and in some pain.  She was unable to move much for several hours.  They had her on some pretty strong painkillers the first day.

There were boards strapped to each arm that she absolutely loathed.  She figured out how to pick up her bottle with her left hand pretty quickly.  She spent about 24 hours in the ICU.  We were really lucky - she was placed in a "parent room" that had a pullout bed so I could stay with her overnight.  Though the monitors and alarms kept either one of us from getting much sleep.

On the second day she was transferred to the neurology floor, which had fewer monitors and was a little brighter and more kid-friendly.  I was hoping she would be allowed to lie flat in her crib since she sleeps so much better that way.  Nope, head had to be elevated.  She was in that room for two nights; I took one shift, then Mike took over until she was discharged.

It was hard to see her so tired, sad and uncomfortable.  We're used to seeing our sunshine girl who smiles all the time.

Shortly after getting to the crib in neurology, she started moving around a lot more.  She shook her head "no" a lot (especially when the nurses came in) and was able to roll onto her side.  Sleep was easier for her that way.  We never lost her pacifier because she almost always had it in her mouth.

Here's the best shot I could get of the incision site.  They took this bandage off and told us to leave the steri-strips alone, they should fall off in a week or two.  We have to wash around the area.  I told the surgeon I was scared to pick her up because I didn't want to hurt her neck.  He encouraged me to pick her up and said she'd heal better if she moved around like usual and we should just be careful with her in a common-sense way.

When they took out the IV from her left hand she could roll around much more easily.  She could almost roll onto her stomach but the board on her right arm got in the way.  She really, really hated that thing.  But she did sleep pretty well like this.

This was the night before she was discharged.  She had started out eating formula after surgery (even though she's graduated to whole milk at home) and we added some solids.  She did throw up twice, but that could have been an effect of the surgery and anesthesia.  They sent her home with prescriptions for Tylenol and Motrin, and some oxycodone if we needed it.  Oh, and she picked up a cold that kicked in right after she got home.

Her recovery has been amazing to see.  She moves around like she did before the surgery.  I thought it would take some time for her to pick up her head and crawl around, but she did it right away.  Having said that, she still has some discomfort or outright pain.  When she's lying on her back and we pick her up, she grimaces.  We use the OTC meds most of the time, only used the oxycodone once so far.  Sleep has been rough, and her congestion isn't helping.  She's not back into her usual routine just yet.  But considering that she just had neurosurgery one week ago, she's doing fantastic.

MRI

Yesterday afternoon we arrived at the hospital for Maddy's MRI.  They weighed her and then brought us to an exam room.

Madeline is not waving at the camera here.  She's trying remove the ID bracelet on her wrist by waving it around wildly.

Then she pulled on it, still trying to GET IT OFF.  Maybe I should have put it on her ankle.

A nurse came to talk to us about what to expect.  He also told us that we'd be waiting awhile.  The schedulers I spoke to on the phone failed to tell me that our arrival time was at least an hour before the actual scan.  And they were running behind.  Because it's a hospital.  (By the way, those same schedulers both urged me to get Maddy a morning appointment because of the fasting requirements, then told me that there weren't any morning appointments for the next month.  Very helpful.)

Still waiting.  We were in that room for an hour.  At some point the anesthesiologist came in to answer our questions and explain what she was going to do.  This was the person I had been waiting and waiting to talk to.  Over the last few weeks, every time I asked any other hospital staff about what kind of anesthesia Maddy would need, everyone was really vague and told me I'd have to wait to talk to the anesthesiologist we had on the day of the MRI.  I found out from other parents that some kids just get sedation (meds taken orally).  Other kids have to have general anesthesia (meds given through an IV).  The ones who have anesthesia often have to be intubated to keep their airways open.  

When we first scheduled the MRI, we were told that Maddy would have to have general anesthesia instead of sedation because of her problems with vomiting; they didn't want to risk her throwing up the medicine during the scan.  They said we'd get more info on the day of the scan.  Since most people I talked to had kids who had general and intubation, and some of the hospital staff led me to believe she'd require intubation, I was preparing myself for the strong possibility that Maddy would be intubated.  But our anesthesiologist said they would try general anesthesia alone, and if she vomited during the procedure or there was some other problem with her airway, then they'd intubate.  (Intubation scares me because it's an intervention, and it comes with its own complications and risks.)

They told us that starting the anesthesia and performing the scan would take an hour, and that it might take up to 30 minutes or so for her to wake up afterward.  We walked down the hall and I got to put Maddy on the scanner table.  They led us away before they put the gas mask on her.  I'm grateful for that.  Hearing her cry for us was hard enough.

Mike and I waited for an hour.  The nurse called my cell phone to let us know we could come back to recovery.  She was already awake and alert.  Mike told her to say "cheese" for the camera and she smiled.  We weren't expecting her to listen!

She was hungry enough to drink Pedialyte.  That stuff's nasty, and Maddy doesn't even like to drink fruit juice.  She must have been starving.  The anesthesiologist assured us that everything went fine and that they didn't have to intubate (yay!).  The nurse (in the background here) said they were prepared for everything and therefore didn't have to do anything out of the ordinary.

It was 6 pm when we left the hospital and got to sit in Cincinnati traffic.  We stopped for a quick dinner and let Maddy have some juice because she was still quite hungry.  Here is Maddy looking shell-shocked at the sandwich shop.

Playing with the band-aid where the IV had been.  That pacifier was her best friend yesterday.  She was a little off her game like we expected.  Her eating and napping have been a bit weird today, but she's doing fine.  I know that she will probably have many more MRI scans during her childhood, that she will require anesthesia again, and that she might have to intubated at some point.  Plus she is having surgery soon and that will be much scarier than this MRI.  But I'm glad we are easing into all the scary things she's having to go through this fall.

I'm guessing that it will take a few days for the neurosurgeon (Dr. M) to get the results of the MRI.  Maddy also has a sleep study on Friday, and the results of that will take about two weeks.  We're not sure what happens next.  Dr. M might get the MRI results and put her on the surgery schedule right away.  Or the sleep study might reveal something obviously urgent and they plan surgery based on that.  Or Dr. M might wait until he has the complete sleep study results weeks from now before he decides on a plan of action.  The uncertainty and waiting is frustrating.  But regardless of what happens, I am so grateful that we have the ability to bring Maddy to such a great hospital.  I feel like she's in good hands.

Waiting...

Okay, here's an update on Madeline's latest medical stuff. Back in September I took her to a pediatric GI doctor to see if there's a reason for why she throws up so much and still eats such small amounts of food. The doctor did not have any answers. But he did order some diagnostic tests.

First was the modified barium swallow. Maddy did fine. The speech therapist who was there did give me some tips on feeding her to reduce the vomiting. Since then, her eating has slowly gotten better but still isn't great. Anyway, the speech therapist and radiologist could find nothing obviously wrong with her digestive system that would cause her the problems she's been having.

The second test was a CT scan of her head. The GI doc ordered it because vomiting can be a symptom of things going on with the brain or spinal cord, and achon kids are more prone to have those problems. My big fear with the CT was that they might have to sedate Maddy to get her to hold still. But she was an angel and they just had to strap her down. That's why I knew something was up when the CT tech needed more pictures, even though Maddy hadn't moved at all during the scan. Turns out the radiologist saw evidence of spinal cord compression. He saw that the foramen magnum (the opening at the base of the skull) was a little too narrow, but since a certain amount of narrowing is expected with achon kids, they couldn't tell if it was a problem. The GI doc called me to tell me all of this a day or two after the scan. He didn't want to freak me out, but we needed to see a neurosurgeon.

So even though we already had a scheduled appointment with a neurosurgeon in December, we got bumped up to the end of October. (When neurosurgery makes time in their packed schedule for you, you know it's kinda serious.) We headed to Cincinnati Children's. I was a little concerned when the intake nurse seemed to have no knowledge of what achondroplasia is. He was asking all these questions about her development, and I could not seem to get through to him that there is a totally different developmental growth chart for kids like her. But then we met Dr. M who does have experience with achondroplastic patients. He got to the point pretty quickly: he looked at the CT scan, and Maddy has cervical stenosis and spinal cord compression that warrants surgery. He emphasized that it's not an emergency, but that we don't want to wait many months. He said there's a 99% chance that he'll want to operate by the end of the year. But first he wants her to have an MRI to confirm that that's the right course of action. He also wants a sleep study to see if she has any central or obstructive sleep apnea. After he gets the results, they will find a spot for Maddy on the surgery schedule.

Getting these tests done has been slow and frustrating. She was supposed to have the MRI last week but came down with a cold. She has to have anesthesia during the MRI and they can't intubate her if she's congested, so we rescheduled for next week. Part of me was disappointed that we didn't just get the MRI over with last week. I've been so anxious about it, and I just wanted to get it over with.

Then there's the sleep study. I finally took her to the initial appointment at the sleep study clinic today. A nurse practitioner examined Maddy and took a look at the results of her sleep study done in Germany when she was only 2 months old. The NP said that she thought the sleep apnea had been more serious than the report indicated and that we definitely should do another sleep study. But of course they have a full schedule and they're trying to find a time to squeeze us in next week. Then it'll be another 2 weeks before they get the pulmonologist's report. At one point the neurosurgery department thought they might be able to get Maddy into the O.R. at the end of November, but I don't see that happening without these tests getting done quickly.

So there you have it. Now we wait - wait for tests, wait for results, wait for surgery. The word "neurosurgery" nauseates me. But like Maddy's pediatrician told us last week, this kind of surgery is easy compared with other procedures that neurosurgeons perform. It should only (haha, only) take about four hours, with a three- to five-day recovery time. It's still scary stuff. Finding other parents online who have already gone through this with their kids is helping a bit. This is a whole new world that I'm just not prepared for.