Wednesday, March 28, 2012

J-Man and Zoey round out the month-spent-at-hospitals

Whew...this March has been the month we have spent driving to hospitals.

Thankfully, yesterday was our last of four trips to Shriner's for Zoey's new leg. I think it turned out pretty cool.

Her plaid leg is on the left. It never fit quite right, so they made her a new one.

They put an old foot on the plaid one so Zoey can use it this summer at the beach. Last year at the beach, the sock and liner would get soaking wet and if we tried to go anywhere afterwards, the poor kid had to slosh her way around. This summer, she will have a dry leg to switch over to. Yay!

Making adjustments to the foot

Chloe also went to Shriners with us for her yearly check-up. They monitor her leg length discrepancy to try to predict when to do surgery on her growth plate in her longer leg. The doctor said that they are about 90% accurate at figuring it out through hand x-ray's. Amazing! He predicted that her surgery would take place around age 12.

J-Man went back to school on Monday. He was bored stiff at home and missed his teacher and classmates. I was a bit nervous for him to go but everyone at school has been very careful about not bumping his ear. He has grown accustomed to his bandage helmet and said he can't even feel it anymore. He is such a trooper! He gets a new bandage every Friday for a few more weeks.

We have a few sick kids and are hoping that it doesn't travel through the family. Two separate viruses. Oh goody. Not sure which is worse...the one with the high fever or the barfing...


I'd prefer the fever. At least there is nothing to clean up. And nothing to smell.

Sunday, March 25, 2012

A Friend who needs a bone marrow donor

I am trying to help a sweet friend spread the news that they need to find a bone marrow match for their newly adopted daughter, Abby. Abby is from China and specifically needs people from the Asian community to be tested. Testing is just a quick swab in the mouth. Here is Abby's mom's blog with more details.

Friday, March 23, 2012

The Big Reveal

Jordan is doing great! I am so proud of him. He has not complained ONCE about having to wear his padded helmet. He hasn't needed any pain medicine since Sunday.

Yesterday we went to Shriners because Zoey is getting another new leg. Her second one has never fit quite right and they decided to just make her a new one. It was pretty comical when we walked in. The receptionist looked at us--Jordan with his head wrap--Zoey with her prosthetic leg--and said, "Which one of them has an appointment?"

I forgot to take my camera (gasp!) but took a few photos at her last visit before Jordan's surgery.

The inside of the leg...

Getting the leg length correct as well as standing on it long enough to make sure it feels right.

She happily shows off the baseball cards she got. She chose them over stickers at the end of her appointment.

Today we went to Boston for a post-op appointment for Jordan. We were excited to be able to see his ear!! The doctor warned us that it would look a lot bigger than normal because it is still swollen. I expected it to look a lot worse than it did.

BEFORE surgery:

So ready to get rid of those hanging drains!


More anticipation...

And there it is! The next surgery will be to make a lobe out of what Jordan already had and connect it to his new ear. I'm kinda diggin' the cute little buzz cut around his ear. :)
Getting the drains removed. He sat so still and never made a peep--although winced when some of the stitches came out. He has some sutures that will stay in for at least 4 weeks but the sutures that held the drains in place came out today.

Getting his first look in the mirror. That smile almost makes me cry. He told me later that he was a bit disappointed in how it looked because it was so big. I explained to him that it wouldn't always look that big--the swelling will come down and the ear will get smaller.

The ear is under the skin on the side of his head. The skin will eventually stretch enough that it will conform to the new ear and become the skin that covers it just like yours and mine. Amazing, huh? And the cartilage that they used will actually GROW with him so that his ears will stay equal size.

He had quite an audience in his tiny exam room. There were seven adults besides me all watching the big reveal.

His doctor takes pictures to help him get the correct symmetry for subsequent surgeries.

His third and final surgery will bring the ear out so that it sticks out the same as the other ear.
But doesn't he look cute?! :)

His head got a short breather and then it was back into another helmet. He will get a new one every Friday for the next few weeks. I was so proud of him. He didn't complain or whine...just sat there and let them do their work.
There go the bandages...
And more bandages....yet he retains his good attitude!

And on top of it all, this funky looking cheesecloth kinda thingy. They had to tear out the front to let his face peek out.

Then we went for a walk because we had a bit of time to kill before we had to pick up the kids from school. Harvard Medical School is right next to Children's Hospital so we walked over there. Jordan says he wants to be a doctor--and I think he would make a great one! I had him pose for a picture in front of the main building.

And I think all that good behavior deserved a a Harvard Medical School t-shirt did the trick. Plus, they were on sale...Score!

A little hold-out-the-camera-and-take-your-own-picture-to remember-the-day moment. We are so thankful to live near such amazing doctors and facilities. God knew what He was doing when He moved us here--despite our great reluctance to live so far from family.

Friday, March 16, 2012

We're Home!

Jordan started off slowly in the morning...but finally turned a corner with the nausea. By lunch time he was able to eat some soup and he got better and better from there.

They originally made the decision to keep him overnight because he was still in so much pain by early afternoon. However, once he was able to eat lunch and get his pain under control, he pushed himself to get up and walk around. He really wanted to go home!
Working hard to exercise his lungs

He was sitting up in a chair when I got back from grabbing some lunch and sat up the rest of the day! The 'helmet' is really annoying to him but he's not a complainer and is making the best of it.

By late afternoon, the nurse thought the plastic surgery team should re-evalute him to see if he could go home. Thankfully, they agreed that he had made a dramatic turn-around and said he could go. Woohoo!

Right before we left, he got a surprise from our church! Thank you so much for brightening his day with the balloon, Lego's and stuffed monkey!
Here he is...all tucked into his chariot and heading down to the car.

And here he is this morning with his doting sister who is helping him do Lego's. His siblings are surrounding him and wanting to play and help so he will have no lack of care at home. Right now they are all working hard on sympathy cards for my uncle.

I will be heading to my cousin's funeral Saturday morning. Jeff told me to go and that he could handle things at home for three days. I was so torn about what to do and Jeff made the decision for me--for which I am very grateful.

Thursday, March 15, 2012

Jordan update

Poor Jordan had a rough night of vomiting. UGH. Three different anti-nausea meds were tried with very poor results. He seems to have turned the corner this morning though. I think maybe the anesthetic had to work itself out of his body.

He is totally mortified at the 'space-man helmet.' No amount of, "We can pretend we are spacemen,' was comforting. He does NOT want to go to school wearing it. I have emailed the school staff to see what we can work out. The helmet is really bugging him so I hope he can get used to it. I feel so bad for him.

The good news is that the doctor said that if he can eat and drink, he can go home today instead of tomorrow. After a wretched night of our roommate's nurse not using her 'people-are-sleeping-so-perhaps-I-should-speak-quietly,' voice, we are TIRED.

Have I mentioned that I think having two patients per room should be out-lawed? Oh, yes, I think I mentioned that the last time we were here. Urgh.

In the midst of my great annoyance last night, I did come back to reality with the thought that my uncle would give anything to be in my place rather than planning a funeral for his daughter. So I will just be thankful and count my blessings--that my child is alive and well--and this is so very temporary.

Wednesday, March 14, 2012

J-Man's surgery

Our little man now has two ears! So amazing..

He wasn't a bit nervous when we arrived at the hospital this morning (at an hour that no one should have to be up.)

Shortly afterwards, our pastor and the children's ministry director at our church arrived to pray with him. (The fact that they were also up at an hour no one should be up was very appreciated by us.)

After he got all prepped, they asked what he wanted to play with. He said a DS. I would type out the whole name if I knew what it was.
I am such a nerd.'s a hand held video game.

Note to self: Do not, under any circumstances, EVER, buy him one.
I would never see his face again.
He was completely glued. He zoned out and heard nothing around him. He took it into the operating room and continued to play after they put the mask over his mouth and nose. Even as his eyes started to droop, he was STILL playing.

Good grief!

He was in surgery all day--about seven hours. The surgeon came out and showed me pictures of the ear before he put it in and then what it looked like after it was in. It looks really good!

We will not actually see it for awhile because he has to wear a pressure dressing over it. I had no idea what a pressure dressing looked like.

When I walked into recovering and saw him lying in the bed with his head all bandaged, it made my heart flip over. He was so pitiful. Poor little guy.

He has been such a great little patient. He is really nauseous and has been vomiting or dry heaving quite often. They just gave him some anti-nausea meds, so I hope that helps. He has an incision in his ribs where they took out the cartilage, so it really hurts when he is vomiting.

The red tubing are drains that are taking the fluid away from the ear so that it can heal better and keep the swelling down. He will have those in until next week.

Hopefully he will be feeling much better tomorrow. The nurses have strict instructions to stay ahead of the pain and I told the night nurse about poor Zoey's dreadful 2 hour pain chase. So I hope Jordan will rest well and pain-free tonight.

Good news and bad news.
Good news is that no one is going to see his bad hair cut for 4 weeks.
Bad news is that he has to wear this pressure bandage for those same 4 weeks.

I had no idea he would have to wear it more than one week. UGH. I'm not sure how he is going to feel about wearing it to school. I decided to post these pictures so that everyone can get used to seeing him wearing it. I don't think he can hide in the house for the next month. The surgeon told me today that his teenage patients refuse to go to school (I can see why!) and get tutored instead. He is hoping Jordan will be willing to go to school.

I don't know... I'll show him tomorrow...and pray that he doesn't get too upset.

Tuesday, March 13, 2012

Painful Week

I am heading to bed soon so we can get up at 4:45 AM to get Jordan to the hospital for surgery, but just wanted to post a memorial to my cousin, Catlin, who we lost on Monday. Our family is in total shock. We would so value your prayers for her parents and brother.

1987 - 2012
Hold her tight for us, Jesus.

"HELD" by Natalie Grant

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
Were asking why this happens to us
Who have died to live, it's unfair

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held

If hope if born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior?

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held

Friday, March 09, 2012

Jordan's Big Month

J-Man had a birthday this week. He was pretty excited about turning 7. Woohoo! He is really into Legos this year and that was all he asked for. He choose his favorite for birthday dinner--spaghetti and meatballs, and chocolate cake with chocolate frosting for dessert.

Obviously the victim of yet another bad haircut from Mom. Sigh...

But his truly big news is that he is going to begin the process of ear reconstruction. He will be having three surgeries over the next 18 months. The first one is next Wednesday and it will be a 7 hour surgery! UGH. He will be in the hospital for two days. The surgeon will take cartilage from his ribs and make an ear out of it! It will be placed under the skin where his ear should be and stay there for the next 18 months. The final surgery will release the ear from it's "protective pocket' and Ta-Da! he will have an ear!

We would love your prayers for the surgeon and for Jordan. This isn't an easy surgery. I found this description online for what the surgeon is up against.

9. Why is the repair of microtia with living tissues so technically challenging?

For long-term success in microtia repair, one must create a 3-dimensional ear sculpture from living cartilage in an acceptable time under operating room conditions, then develop a “pocket” under snug 2-dimensional skin to house that framework— without cutting off the circulation to that skin. It is like trying to place 5 lbs. of plaster into a 2 lb. bag, but doing it with living tissue! Furthermore, since cartilage can’t be visualized by X-ray as bone can, one never knows what the rib cartilage configuration will be like before surgery. Therefore, the surgeon must “make do” and sculpt a realistic ear framework with the cartilage encountered at surgery, no matter how difficult that may be.

I will of course be taking my laptop to the hospital and will be updating everyone on Jordan's condition. I asked him yesterday after his post-op testing, "Jordan, do you feel scared, excited or neither?"

Typical for a male, he said, 'Neither," and continued eating his chocolate cupcake.

So there you go! Just another day for him.