A quiet day of healing

The second day of recovery went pretty well overall.  She was quite restless last night, complaining of pain and seeming more distressed than she had yesterday, so I was happy that she slept intermittently for a lot of today, including as I'm writing this.

Other than sleeping, it was pretty much the Disney Channel all day today.  She hasn't shown any interest in being read to yet.  I brought our I-pod and speakers from home, and she listened to an Indian music playlist which helped her get to sleep for one of the naps.  A Child Life specialist came by and brought an easel that fits over her stomach so she could paint, but she hasn't been comfortable lying flat on her back enough to do that yet.  Mostly she is lying on one side or the other.  The nurses have to turn her two at a time in a multi-step operation.  She was able to talk a little bit on the phone with Grandma and Grandpa, and later Aunt Sarah, and then she was teasing and laughing with some of the nurses, but mostly she's still pretty sluggish. 

As far as medicine, earlier today they took out her PCA (a continuous drip of pain medication) and it's a good sign that she was ready so early to do that.  Now they are giving her Tylenol, Oxycodone, and Valium orally.  When she complains of pain, she says it is in her back, which makes sense given the size of that incision.  Otherwise I know she doesn't like lying still, but she doesn't seem to be in much visible distress.

She wanted to show you guys all the apparatus she's hooked up to, so here's a picture:

The little blue things are all part of one cord that is connected to the IV.  Here's a picture of her watching the cool TV that is attached to a movable arm so you can position it wherever you want:

Not much else to report.  I'm doing a lot of reading.  I still don't like to leave her for very long, although she has no trouble summoning the nurses when I am out.  I'm feeling positive about her progress so far.  I can tell that she is going to enjoy being here once she feels better.  There are other kids here using similar equipment to what she will be using, and they look like they're having fun.  Oh, and we got a visit from a therapy Golden Retriever named Trooper.  This was much more therapeutic for me than Suchitra.  When people ask her who else she lives with, she'll mention Tiller if they ask about pets, but she never fails to add that he is "annoying."  Clearly I'm the only one who is missing him!

Out of surgery

She did great!  Dr. Dunn came out to update me after it was over, while she was in the recovery room, and said that everything went great, and that she cut 33% of the nerves, which she said was an ideal amount.  After that I was able to go back and be with Suchitra.  Here's a post-surgery picture:

Super zonked.  She hasn't seemed very distressed or in much pain, and the nurses have been doing a great job all day of staying ahead of the pain.  She has a continuous IV drip of pain meds.  We came up to our room in the Rehab Unit around maybe 2 pm and met a lot more nurses.  She has to lie flat, switching between her back and her side, until Saturday, I think.  After that she will lie on her stomach on the prone cart, which can be wheeled outside of the room.

She has the IV and a Foley catheter in, plus some other monitors, of which she is tolerating quite well.  She wants to sit up and she has talked all day about being hungry, but she was only allowed to eat ice chips a little earlier this evening and she just had one saltine cracker.  She can also drink some water.  They plan to dole out the liquids and foods a very little at a time, so that she doesn't throw up.  Earlier we watched Guys and Dolls and she was singing along as best she could.  The Disney Channel has kept her occupied the rest of the time.  I am worried that tomorrow or the next day she's going to get pretty antsy and fussy.  I'm really proud of how well she has done so far, but I know the Valium is helping!

She has to wear these styrofoam tube sort of things that go from her thighs down to her ankles, called knee immobilizers:

Apparently these will stay on for a long time, the point being to keep her aligned, help her back heal, and stretch out her muscles.  I saw the incision in her back when the nurses were checking it and it's pretty big.

I stayed with her the whole time until about 6:15 pm when I went to get dinner at the cafeteria.  I really did not want to leave her, but I missed lunch so I was getting super hungry.  The food options are very limited, especially non-meat, and I'm hoping that after a few more days when she starts to get busy with therapies, I will have enough time to take a cab to a grocery store and get some stuff I can actually eat.  However, there is only minimal room for refrigerated or dry storage.  I just got a tour of the Ronald McDonald Family Room, which is a large, homey kitchen/dining/living room that patients' families can use.  It looks like a great space.

I don't anticipate getting a lot of sleep tonight, as the nurses keep coming in and out every half hour or so to check her vitals and monitor medication.  The anesthesiologist stopped by and said she is doing great.  She's only dozed off a little bit, mostly watching TV.  Keep your fingers crossed that in the next couple days she stays calm and keeps healing as well as she has done today!

Oh, I also figured out how to ratchet down the comments setting so you no longer have to register or have a profile.  That should make it easier.  Thanks so much for all the messages and positive energy, it is making a big difference and helping a whole lot.

In surgery

We made it to the hospital on time this morning, but got very lost while trying to find the surgery unit again.  This hospital is super confusing to navigate, with several sets of elevators that each take you to different levels.  Especially difficult for someone as directionally challenged as me.  So I got as far along as I could while carrying all the luggage, but finally gave up and called the surgery unit to ask for someone to come help us.  They brought a red Radio Flyer wagon that fit all the luggage quite nicely.

Once we got into the pre-op area, things got much better.  Here's a photo of her in the pre-op room. 

I should have waited because a few minutes after I took this, she got all hooked up with a coloring book, stickers, Disney Channel on the TV, and a bed warmer that shot warm air into her gown that she could control with a little dial button on a remote.  Being the gadget- and button-obsessed child that she is, that was her favorite.  She also got a stuffed bear, and she gets to keep that pink fuzzy blanket.  She got to pick out a flavor of lip gloss that will be smeared onto the mask that they will use to anesthetize her with, so that it smells like watermelon instead of whatever anesthesia smells like.  She was visited by the nurses, another Child Life specialist, the anesthesiologist, and finally the surgeon, Dr. Mary Dunn.  Dr. Dunn was looking quite dapper in a smart silver-gray suit.  She told us it was her birthday today.  I think that's pretty lucky.

Suchitra went off to be watermelon-anesthetized around 7:40 am.  The Disney Channel put her in a really good mood and when they asked if she wanted me to come back with her while they put her to sleep, she said no.  I wasn't too upset about that because it means she was pretty comfortable with the situation.  I took the luggage up to our room on the Rehab Unit, then went to the cafeteria for some breakfast.  I'm now camped out in the surgery waiting room.  They have a big screen where your patient's name is displayed (in code to protect privacy) and some icons that light up to indicate what stage the patient is in, from pre-op to in-op to all done.  I also have a pager so they can get in touch with me as needed.  At about 9:10 I got a call from the anesthesia nurse who said that everything is going well and Dr. Dunn had just begun the procedure.  It is expected to last about 3.5 hours.  Once she is in the recovery room, they will let me know when she begins to wake up.  Last time she had surgery, she was really upset when she woke up and I wasn't right there, so I asked them to let me come and see her as soon as possible.  I got another call at around 10:15 saying her vital signs are good and all is going well.

Waiting kind of stinks, and I'd really like to take a nap, but I do have a good book to get me through the rest of the wait:  What Is the What by Dave Eggers.  It's a novel about the Lost Boys of Sudan.  Very good for perspective.  My ankle is hurting again (I sprained it a couple weeks ago) probably from carrying the luggage, so I have it propped up.  More later!

Ahoy from St. Paul, mateys!

We made it successfully to St. Paul and are having a great time so far!  This time we are staying in a Holiday Inn, which we like better than the Best Western where we stayed in June.  Downtown St. Paul seems to be mostly a collection of extremely large buildings, e.g. Travelers Insurance and the West Legal Publishing Company.  And directly across from our hotel is the Xcel Energy Center, a giant event center where the professional hockey team plays and Madonna is giving a concert in November. 

And down the street a little way is the Science Museum of Minnesota, where we spent the morning before heading to Gillette in the afternoon for appointments.  The Science Museum had a super cool exhibit on pirates that Suchitra and I both loved.  This guy named Barry Clifford has spent the last few decades bringing up artifacts from a pirate ship that shipwrecked off Cape Cod in 1717.  It was called the Whydah (pronounced "widow"), named for the west African city of Ouidah that was a hub of the slave trade.  The Whydah was first a slave ship.  Then a young pirate captain named Sam Bellamy attacked and commandeered it.  He sailed all around the Atlantic Ocean, making a fortune by pillaging and plundering.  But on the way home to Massachusetts, the Whydah got caught in a massive nor'easter and sunk.  All but two pirates were drowned.  Bellamy had several other ships in his fleet, and the survivors plus the other pirates headed for Rhode Island, which was a pirate safe haven.  But almost all of them were eventually caught, put on trial in Boston (where Cotton Mather tried to convince them to repent) and hanged for their crimes.

Apparently pirate ships were totally egalitarian, unlike the military and merchant vessels also plying the seas at that time.  The merchants were busy stuffing African slaves into their ships' holds, and the navies treated their crews terribly - harsh discipline, bad food, little pay if any.  Whereas pirates all got to share the booty and everyone was treated equally, whether of European, African, or Native American descent.  For example, only if there were enough hammocks on the ship would everyone get to sleep in a hammock.  If there weren't enough, everyone slept on the deck.  Not surprising that when pirates captured other ships, many of the captured crew decided to join the pirates.  Sam Bellamy's ship even had a nine-year-old pirate named John King.  He was on a ship that was taken by Bellamy's crew.  He demanded to join them and when his mother protested, he threatened to kill her.    Unfortunately (or maybe appropriately) he didn't get to enjoy piracy very long before sinking with the Whydah.  Found in the wreck, and displayed in the exhibit, was all that remains of him - a silk stocking, a fancy shoe, and a little tibula.

The other items brought up from the Whydah's watery grave were amazing too - weapons and cannons, the ship's bell, and of course lots of gold and silver!  Both of us thought the coolest part of the exhibition was the replica pirate ship that you could go inside, complete with creaky floors and seagull cries.  Suchitra also got some pirate trader cards, one depicting a fierce female pirate named Mary Read.

Aaaargh, I'm getting totally off topic!  Back to Suchitra's surgery.  At Gillette today, we learned a lot about what the upcoming weeks will hold.  We toured the surgery area and the rehab unit where we will be living.  A child life specialist explained the surgery in great detail and answered all of Suchitra's questions about it.  She was fitted for knee immobilizers that will keep her legs straight, and we saw a prone cart where she will be lying on her stomach, to stretch out her hips and also until she gets strong enough to sit up.  The cart can be wheeled around.  I'll have to post some pictures, it's hard to describe. 

She also had baseline evaluations for occupational and speech therapy.  Speech therapy she doesn't need, of course.  I'm excited about OT because there is a good chance she will be able to dress herself as a result of this surgery.  Right now, it's a huge challenge given that her legs are so tight.  So OT will help with that.

The rehab unit looks like a typical hospital unit.  The rooms are quite small and will be shared with one other patient with only a curtain between.  I think this is going to be a big challenge for me - no privacy and probably not much quiet.  There is a Ronald McDonald unit in a different wing that we didn't get to see, but apparently has a nice kitchen and dining area.  As when we were here in June, the hospital is a very busy place with lots of people going and coming at all times.  We did learn that there will be lots of activities to keep Suchitra busy.  Each day will be scheduled with physical and occupational therapy, school, and evening fun activities like birthday parties, dog shows, and games.  I know she will love it.

Okay, time to sign off as I have to give Suchitra a shower and get her to bed if I can pry the TV remote from her little clutches.  We have to be at the hospital at 6 am tomorrow for her 7:30 am surgery, along with all our luggage (two suitcases, two backpacks, and one duffel).  I am fighting off a cold so trying not to infect her, which would not be helpful.  Thanks for reading and we love getting your emails and comments!

Why am I writing this blog?

I'm creating this blog as a way to keep family and friends updated on Suchitra's selective dorsal rhizotomy (SDR) surgery and rehabilitation.  Her surgery date is August 29, 2012 at Gillette Children's Specialty Healthcare in St. Paul, Minnesota.  We will be flying from Portland to Minneapolis/St. Paul on August 27. We plan to return on September 30, 2012.

Here is some background on SDR. It's a neurosurgery that is done to relieve symptoms of spastic diplegia, which is the type of cerebral palsy Suchitra has.  (Spastic refers to the muscle tightness or "tone" and diplegia refers to the fact that only her legs are affected, not her arms.)  Research over the past couple decades has shown SDR to be safe and effective.  In this surgery, an incision is made in the spinal cord through the back, and the nerves that cause spasticity are isolated and then cut.  There will be enough healthy nerves left to allow her muscles to function normally without the spasticity.  However, her muscles will be much weaker, and she will have to relearn all of her motor skills, including normal movement and daily tasks, during an intensive recovery period.  This is why we will have to stay at the hospital for four weeks after the surgery.

While there are several hospitals nationally that specialize in SDR, Gillette is one of the best, especially for their rehab program.  We traveled there at the end of June for an evaluation.  After examining Suchitra, a team of doctors including a neurosurgeon, an orthopedic surgeon, and a physiatrist told us that she would be an excellent candidate for the surgery.  We had a long discussion about the risks, benefits, and potential outcomes.  Obviously there are no guarantees with any medical procedure, but I feel like we're making the right choice with the best chance of improvement for Suchitra.  One thing that is kind of cool is that on Gillette's website and some others, you can see before-and-after videos of kids who have had SDR.  While the degree of improvement depends on how severely affected the child was before the surgery, for many kids the difference is quite noticeable.

While we are there, I'll be staying right in the hospital room with Suchitra and helping out during her recovery.  She shouldn't fall too far behind in school because Gillette has a teacher that works with the kids who are patients there.  Most of the time will be spent in physical and occupational therapy.  Gillette's approach is to start with the most basic motor skills, e.g. rolling over and sitting up, and then progressing to more complex skills as each is mastered.

Once we return home to Portland, Suchitra will have to do physical therapy five days a week for at least a month, then tapering down to three and two days per week afterward for probably a year.  This is a lot more physical therapy than we do now so it will definitely have a big impact on our lives.  The doctors also said that we will need to return in a year or so as she will very likely need orthopedic surgery to correct muscles and bones that have been pulled out of position by the spasticity.  If we did not do SDR, she would probably have to have multiple rounds of orthopedic surgery, possibly up to 15 surgeries.  So doing SDR now will avoid having to undergo a lot more surgery later on.

My impression is that the main benefits we should eventually see for her are a steadier, more normalized gait and less effort to take each step, so much better endurance.  At the evaluation, Gillette measured Suchitra's oxygen consumption level and found that she uses 3.8 times the amount of oxygen that a non-disabled person uses to walk.  This means that for her, walking is like taking the stairs two at a time would be for us.  After SDR, her oxygen consumption should go down 30% and after further orthopedic surgery, it could go down 50%.  The surgery will also help avoid increasing pain and decreasing function as she gets older.

I am optimistic that Suchitra will work hard with a good attitude as she does during her physical therapy sessions here at home.  She's very excited about the surgery and realizes it could make a big difference for her.

If anyone feels inclined to send mail, she would love it!  The address is:

Suchitra Goracke
Rehabilitation Unit
Gillette Children's Specialty Healthcare
200 University Ave. E.
St. Paul, MN  55101

If you have any questions, let me know and I'll do my best to answer them!  Thanks for reading and following our journey!