Children's Hospital: Take 2

Apologies in advance that our friends/family are learning about this via our blog- we're exhausted and have not had a chance to call anyone besides my parents.

So, when I said in my previous post that we are so thankful for this hospital, it did not mean I wanted to require their services anytime soon! C, of course, had other plans...or at least his little body did. He woke up at 3:30am screaming in pain, completely inconsolable. All we could get out of him was his neck hurt, his head hurt, and we saw that he could not move his head. When he wasn't making any improvement and could not be calmed, I knew we were in trouble. Of course, it didn't help that I just read a parenting article on menningitis the other day either.

We decided since C was still vocal (screaming) and there wasn't any blood involved, we'd head back to CHKD since we've not been impressed with our local ERs and our "doc-in-the-box" office we love for after hours care is not open in the middle of the night. Off to CHKD we went, thankful for no traffic due to the time of night and that we knew the drill...where to park, where to go, etc. C was immediately triaged and admitted in the emergency department.

I'll save you all of the details (I'm too tired to go through them), but we got to see lots of docs and they systematically ruled out some pretty scary things (menningitis, tumor, aneurysm, migraine, etc.) and figured out that the poor child sprained his neck. Who knew? Evidently, "active kids" can sustain a muscle injury, shake it off/not mention it, go to bed where they are immobile for hours and then the muscle contractions set in and spasm (torticollis). So think of the worse "crick" in your neck, or throwing your back out, and that is what this is like. In C's case, it's keeping him from being able to turn his head or lift his chin from his chest and left shoulder.

The good news is we went from screaming and being inconsolable, with pain all over his head, neck, and shoulders, to getting some relief with pain meds and muscle relaxers.

About five hours after all of this started- no longer screaming

Totally high on Valium- there's a smile

C has been released and we are back home; he is resting. He is still having pain, but we are seeing improvement. He is on the pain meds and Valium for the next 48 hours, no activity, and we are to see his pediatrician tomorrow for follow-up. For our prayer warriors out there, please pray for continued pain management/control and healing of those little muscles/regaining a range of motion in his head and neck.

He must be feeling a little better- he finally wants something to eat and has asked if we'd make an exception for McDonald's...I think that can be arranged. :)

Children's Hospital

My child was EXCITED to learn he was going to the hospital this week. Not just happy or giddy, but slap-your-mama excited. His sweet little face peered over my bedcovers around 7am, already bright-eyed awake and dressed. How disappointed he was to be reminded that his appointment was not for another 7 hours. It has been a couple of weeks since our last ENT visit and this visit was a 2 month follow-up from our last plastics visit. If you're now lost, the back story is here.

C was thrilled when I picked him up from school and we set out on our adventure. From taking a bridge-tunnel (really, people, the tunnel will not swallow you whole; enough with the brakes!) to navigating in the city, parking in the garage, figuring out how to get from the garage to the hospital, checking in, pushing the elevator buttons, getting our parking validated (once a city girl, always...), and having his run of the place. Here are our highlights...

Being sweet in the waiting room

C took this photo of one of the wall murals

Practicing our states and capitals

Having fun

Making faces for the surgeon

Love that toothless grin!

You can't see them, but this man has angel wings!

Looking out of the 5th floor "crown" and enjoying a sucker

Playing in the lighthouse

King of the castle

Not quite ready to head home

Playing on the lawn before leaving, after cafeteria pudding of course

The FANTASTIC news is that C is healing beautifully. The scar from 70+ sutures is fading and looks even remarkably better than 2 months ago. We continue to hear, and know, how blessed we are that C is coming through this unscathed: no impact to his vision and full facial muscle control is regained. His surgeon kept remarking how pleased he was, especially considering all that could have gone wrong, a hair one way or the other...feeling abundantly blessed and thankful for such talented medical care and the healing C has experienced. And I cannot talk about this place without saying please, support your local Children's Hospital. You know it's one special place when kids get excited to go to the hospital!

When the Bough Breaks

You know there is a difference in you child's cries- the I'm-really-hurt-and-going-to-make-you-panic-cry versus the I'll-get-over-it cry. We had the former this afternoon, that which makes even the toughest mama's stomach drop and panic rise. Before I get to that, let me give some background.

We have a frequent flyer pass with our local ER and the annual Thanksgiving tradition here isn't just the turkey, Macy's parade, and football. Historically the holiday has included an ER visit for C...EVERY year. And JUST TODAY a colleague asked me about this tradition and I responded that I hope we break that one tradition this year, and just enjoy our time in Hilton Head. Well, we hope we broke the tradition and that our ER visit this evening takes the place of a Thanksgiving visit.

My boy must be part monkey; he cannot be outside without climbing a tree. As much as we say "that's dangerous" and "get down" the result is temporary. C will get down for that moment, but once your back is turned, he's at it again. As a mom, I am torn- aren't boys supposed to be climbing trees, catching bugs, chasing frogs and the like? I think this is one lesson that teaches itself though. Frankly, I'm not even sure the result of this fall will be a permanent deterrent for the little guy who likes to do his own stunts.

So, what happened? C decided to climb a tree after school and took quite a spill. He's broken both the radius and the ulna in his left arm, has a shiner forming on his eye, and a large goose egg on his head. My mom and I both knew when we heard his cry, then saw the limp arm, that we were headed to the ER immediately...and C wailed and wailed, which indicated even more that something was seriously wrong. C is finally resting (thank you Tylenol with codeine) with a splint and sling and we're visiting the orthopaedic surgeon in the morning.

Once we returned from the ER my mom and I visited the "scene of the crime" and realized how blessed we are that this was not even more serious than it already is. From where the branch broke and landed, it appears that C was at least 10 feet up in the tree...that sits between our stone driveway, stone walkway, and construction fencing (ditch work being done). There was also a metal landscaping light right there. We are so blessed that C did not hit the stone, the light, the fencing, the car- it's amazing he hit the patch of ground and nothing else, and for that, we are overwhelmed with gratitude. The branch is strewn all over the stone and I'm just so thankful we didn't have a compound fracture or more serious injuries.

I told my mom that I just don't know that my heart will ever be strong enough as boyhood marches on and leaves its nicks, scrapes, and ER visits. Tomorrow we'll meet with the orthopaedic surgeon to learn more, but for now, I'm just thankful my little snuggle bug is nestled in and feeling some pain relief. Thank God it wasn't worse than this!

Post-Surgery Update on M

Surgery #7 is crossed off the list and MANY, MANY thanks go out to our awesome family and friends that have supported us with the blessing of prayer, kind words, and positive thoughts. We are humbled by having such a fantastic support network- thank you from the bottom of our hearts. The technical update is that M was in surgery a little over two hours yesterday. A long segment of Barrett's remains (not the news we really wanted) but it was a smooth enough of a segment that it could be treated with radio frequency ablation (RFA), versus cryo. In regular terms, they used a wand to zap off the bad cells, instead of freezing them off. M had two rounds of RFA during yesterday's surgery and he will need at least 1-2 more surgeries to continue to treat the high dysplastic (bad) cells, then another surgery to biopsy. Yes, we are on the frequent flyer plan at this hospital. After some time in the recovery room, a very groggy M was too tired and sore to eat dinner and he's up and around today, but still very sore. Despite requests to see M in his lovely and fashionable hospital gown (can't imagine why he refused those requests), I hope you got a chuckle out of the cartoon I found.

We did A LOT of waiting yesterday...but now instead of feeling like we are waiting with a bunch of strangers, we have folks coming by to say hello, check on us, ask if we brought pictures of "that cute little curly headed babe," and to ask how M has been faring. I like that it is the same support team and that they make you feel at home, in a place you probably don't want to consider anything like home. M and I both jest that we really should have platinum level frequent stay cards by now, and shouldn't there be some perks to go with that, beyond the free ginger ale and sneaking me back into pre-op and recovery?

The downside to tertiary care at a teaching hospital is that it can seem very disorganized and frightening at times. I will never forget M coming to after his first surgery last year, opening his eyes and asking me "WHAT DID YOU DO?" I turned around to see two armed guards in the recovery bay five feet across from us, with their prisoner. Nice. M, of course, thought I raised some kind of ruckus re: waiting and waiting and waiting some more and that security was called. We have to call REPEATEDLY to get appointments scheduled, typically with no callback, and it takes me emailing the surgeon directly (thank goodness for university email search) to ask what it takes to get a surgery scheduled that he mandated? I'm confident the admin team has my photo on a dart board somewhere- so be it. We've learned you have to be an advocate for the care you are prescribed; no one is going to do it for you. M's local GI specialist called the other day to tell me he still has no records, after 12 months of treatment with this hospital, so the poor GI intern got to take that down in his pre-op notes when I explained that I really didn't know what else we could do beyond the multiple requests and releases that have been provided. *sigh* At times, yes, managing a medical condition in this care space feels at minimum like a part-time job.

M and I had a "we are getting old" moment yesterday when the intern for anesthesiology came in. The attending we'd met a few minutes prior was what we expected, the intern, however, looked like he was about 14 years old. And 14 is being generous. Wow, did we feel O-L-D to cross that threshold into our caregivers are now younger than us. In Doogie Howser's defense, he did an excellent job answering my barrage of questions and even gave M a shot of lidocaine before inserting the IV. Where was he when I was being prepped for my c-section? Our next young one to arrive was the GI intern who would be performing the surgery, with the attending at his side. This one looked like he just gave up the tricycle for the two-wheeler, so it is a bit unnerving. All went well, and I am sure they are very talented young men, it just throws you for a loop to think, is this kid old enough to have a beer, let alone perform major surgery?

And just like the trusty specials menu at your favorite restaurant, we're thinking Mondays must be prison day at this hospital. We had the added bonus of two prisoners in our four person bay area, with three armed guards. Yes, prisoners need care too, but preach to me when the guy is five feet away from you and you wonder what he's doing time for. Makes you wonder when you are packing your hospital bag if you need to start adding "personal protection" to your list. Frightening.

In closing, I assume the admin team is tired of me calling for the following surgery the doctor always prescribes, so this time they pre-empted me and sent a note to recovery with M's next surgery appointment. Sweet- and really, about time. We'll be back in early December for surgery #8, and #9 will likely be in February 2011, be it for additional treatment or for biopsies. On a positive note, we are blessed that this condition was not quickly discovered in M. Had his Barrett's been diagnosed just 3-5 years ago, the treatment was radical (removal of esophagus). Despite all of the little annoyances, we are thankful to use new technology to treat this condition, in the hands of the world's best pioneers with it...we're just ready to get things "fixed" and get on with our next adventure. As always, thank you for your concern, care and support- it's priceless.

Lucky #7

Yep, that's right...we're hoping the 7th time is the charm! M has surgery #7 tomorrow, for treatment of his Barrett's with high dysplasia. Not much else to update at this point- it's been a busy couple of weeks and we know the routine when it comes to tomorrow...make the drive to the university hospital, get settled in, and wait...and wait...and wait some more. For our prayer warrior friends, please keep M and his physicians in your prayers. Our hope is this is one of the final surgical treatments he will need to undergo for Barrett's. We should know more after surgery tomorrow. Since the nursing staff is sweet enough to allow me back in pre-op, walking with M to the OR, then hanging out in recovery, I've had to swear holy not to turn on my cell phone. Assuming all goes as planned, I'll update here Monday night.

The fact that we are on #7 makes my head spin. For those wondering how we got to seven:

1. Emergency surgery/impaction/initial biopsies and diagnosis
2. Follow-up/additional biopsies- referred to tertiary care at research hospital
3. New hospital- additional biopsies for high dysplasia
4. Mapping for treatment
5. Failed session (reaction to anesthesia)
6. Cryosurgery
7. Radiofrequency Ablation or Cryosurgery (they make the decision once they see current state of the esophagus)

For those just catching up on all of this, some of the backstory is here. We are often asked, how did you guys even find out M has this condition? And really, the story is humorous to hear M tell it. The short answer is, "my mother-in-law tried to kill me at Sunday dinner." We were all eating pot roast and M started to choke, and choke, and choke. Of course, being stubborn and unable to speak, he's still trying to insist that he's not really choking, but maybe a piece of food went down wrong. My dad finally put his foot down and inisted M go with me to the local outpatient center, or we were calling 911 from the house. He got in the car, we arrived at the outpatient center, and they ended up calling 911 almost immediately. That won him a trip in the ambulance from the county's finest, to the ER, to the OR. When the surgeon went in to remove what he thought would be a food impaction, he quickly discovered the impaction was caused by a narrowing of the esophagus (stricture), which is caused by Barrett's, which is caused by severe and chronic acid reflux. So, there you go, my mom tried to choke him. ;)

So, What Do You Eat?

I get that question...a lot. There seems to be a perception that if we are eating clean foods, then we must be tree-hugging, tofu-eating, make-your-own-clothes type of folks. Nope, not us. The hubs and I both work full-time (and then some) for Fortune 500s, so we really don't have the time to fuss over complicated meals. I included the photo above, because if you are struggling to get a balance of vegetables and fruits into your kiddos, I highly recommend you check out these sneaky recipes. Bonus: I picked up the book this week at Kohl's, as a $5 "Kohl's Cares for Kids" special. My kiddo has been eating pumpkin pancakes with flaxseed meal, wheat germ, and protein powder added in, and the best part is he has no idea I packed all of that into his morning pancake. Victory!

Planning is critical! I think there's also a misconception that if you practice clean or organic eating, you must be skinny and fit. Again, not true here, although it would be nice. The fat and calories of a fresh avocado count and stick to you just like sitting down with some chocolate chip cookies (although the avocados are a healthy MUFA fat). I'm trying, again, to lose weight and the old adage of "if you fail to plan, you plan to fail" rings true. Or, as my friend Amber's dad told us, "Follow the 7 Ps- Prior Proper Planning Prevents Piss Poor Performance." Well, he should know; he is a retired Marine Corp General. Ooh-Rah!

To that point, I take time each week to plan out our menu, sample here, and shop for the necessary goods. I like this menu format, as it breaks out each meal, prep that is needed for the next day, and upcoming notes. It seems silly I list "milk" at each meal for the little guy, but it's a great reminder if I'm not home and the hubs has dinner duty (we do try to eat every dinner together, at the family table, but it is not always possible). The lunches listed are C's- I usually will eat a small portion of leftovers from the night before, or something light. However you start to make improvements, just rememeber you don't have to make a radical change overnight. Thing big, start small, and all of those small changes add up for a greater impact!

Mmmm Mmmm Good!

It's been such a busy couple of weeks that, sadly, I've neglected one of my favorite outlets- this blog. Someone even reminded me that I never finished blogging about vacation (will do). So, while I play catch up, let me share a little gem...

Darling son used to eat all types of healthy and exotic foods- he'd try anything at least once. Within the past year, he's become somewhat picky and it's been a battle getting the right balance of fruits, vegetables, and "eating the rainbow" into him. About 6-7 years ago we went to clean eating; organic, real food that is not processed and is purchased from local farmers and growers as much as possible. Our home is probably as chemical free as it's going to get, and if the hubs wants to sneak a box of Twinkies or something like that, totally his choice. I just ask that he stash them somewhere the little man will not find them. He also sneaks in fried chicken, but again, totally his option. I get many questions about personal care products that are chemical free, so I will try to post a list this week of what we are using, and more importantly, why. In the meantime, I've declared war, a silent war. If my son can wage the battle of turning his nose up at fruits and veggies, game on.

I've decided to sneak as many fruits in veggies as possible into his foods, and the first battle was a victory. He had no idea! Last night I played up the fact that it's the first day of fall today, so let's have a harvest breakfast. What he thought were pancakes were actually multigrain pancakes made with soy protein powder and a cup full of pumpkin puree. And not only did he eat them, he asked for seconds, which the child never, ever does. In hindsight, I would not have placed the pecan halves on top of the pancakes (he removed them), but I should have chopped and added to the batter.

Last week I was able to trick him into spaghetti squash being spaghetti..."This tastes a little different from spaghetti mom." To which I replied, "Oh, it must be a different brand." Yes, it's deceptive, but so far, so good. Tonight's menu? Spaghetti squash, cauliflower coated chicken parm, and tomato sauce full of finely diced zuchinni, carrots, peppers, onions, and mushooms. Stay tuned; I will be posting recipes and results.

Spinach brownies anyone?