Tuesday, June 29, 2010

"Little Boy Blue"

Dedicated to all those children who didn't survive

The little toy dog is covered with dust
but sturdy and staunch he stands
The little toy soldier is red with rust
and his musket molds in his hands.

Time was when the little toy dog was new
and the soldier was passing fair
And that was the time when our little boy blue
kissed them and put them there.

"Now, don't you go till I come back," he said,
"and don't you make any noise."
So, toddling off to his trundle bed
He dreamt of his pretty toys.

And, while he was dreaming an angel's song
awakened our little boy blue.
Oh, the years are many, the years are long
but out little toy friends are true.

Aye, faithful to the little boy blue they stand,
each in their same old place.
Awaiting the touch of the little hand,
the smile of the little face.

And they wonder as waiting these long years through
in the dust of that little chair,
what has become of our little boy blue
since he kissed them and put them there.

----- Eugene Field, 1872

An excerpt from "Silenced Angels, The Medical, Legal and Social Aspects of Shaken Baby Syndrome" by James R. Peinkofer

Monday, June 28, 2010

Jack is back

Jack has improved dramatically from last week as the clorazepam gradually works its way out of his system. He is smiling and laughing a lot although there is still quite a bit of fussiness. It may take a few more days for it to be completely gone. His therapists reported good progress today and we are still scheduled for discharge on July 2nd. Needless to say, we can't wait to get home.

But, it is good to see the old Jack back saying "busted" and "boo" to all the nurses and therapists. We hope for continued improvement.

Friday, June 25, 2010

One more week

The care team met yesterday and determined that Jack needed an additional week at Levine. He is still hallucinating but received his final does of clorazepam this morning so we should see the effects begin to diminish and hopefully be completely gone by Monday. So, that would give him a good 5 days of therapy before they let us go on July 2nd.

Obviously, the hallucinations have completely interfered with his therapies. I know the therapists are all anxious to make good progress with him next week. They are all wonderful with him and it has provided a great distraction from "the snakes".

Keep good thoughts.

Wednesday, June 23, 2010

Update on Jack

We've had a bit of a setback at Levine. A couple days ago, Jack began hallucinating. Mostly, he complains of seeing snakes and naturally, he's terrified. There's not much anyone can do to comfort him other than try to distract him. The cause appears to be one of the medications that he was on. They are now tapering that and he should be off by Saturday am. Yesterday was probably the worst day and today he seems a bit like his old self. Hopefully, we should begin to see these episodes subside.

So, obviously, we won't be going home tomorrow but more likely, will be early next week. Jack is sleeping better and is napping right now.

Thanks again to everyone for all the support.

Monday, June 21, 2010

Jack's journey in pictures

four days post-op in the PICU

Jack and CAYLIE

green cupcakes and Aunt Jolene's birthday

a visit with therapy dog Gus

pt at Duke

the critical care team

leaving the floor at Duke

the ambulance was huge

leaving Duke in the Critical Care ambulance

working in therapy with Anne

Jack and Steve Smith on a recent visit to the Panther floor at Levine.

Here are a few pictures from Duke and Levine. Jack is progressing, but can't sleep well at all and is quite fussy. We hope to be home on Thursday.

The care we received at Duke was amazing. It has been a hard recovery for monkey, but he will be okay. Levine is our comfort zone. We have been in this hospital four times. The doctors and nurses are kind and loving.

We appreciate all the prayers, gifts, food and visits. We are very humbled by the love we have been given. Thank you all.

Thursday, June 17, 2010

Encouraging news

Just spoke with the social worker and doctor. Jack's care team met this morning to discuss his progress and plan. He has made significant progress already and is really just needing to build endurance. They feel we may need to stay just another week! We are very excited. We were told it could be up to 6 weeks.

As far as the steroid withdrawal, his last dose was yesterday and he seems better already. His therapy sessions were good yesterday and so far have been good today. He still has periods of "fussiness" but that will linger for a couple days most likely.

Emily, one of the excellent physical therapists here, was prompting Jack as to what his big brother Kris did here at CMC. Kris, as many of you know, is finishing up his 3rd year of med school at UNC. After much discussion, Jack decided that Kris was responsible for parking cars.

Monday, June 14, 2010

In it for the long haul

Jack had his first day of intense therapy today. He is still very fussy and is not sleeping well at all. We are not sure if it is because of the tapering of the steroid from surgery or some other reason. He is wanting food constantly, another problem with steroids. Hopefully, things will settle down soon and he will be able to fully concentrate on his therapy. Course, it's also possible that he is just tired of the whole experience and wants to be in his own home. It's just difficult to tell.

Regardless, we are in it for the long haul.

Friday, June 11, 2010


After a day of travel, Jack is sleeping soundly in his bed on the 4th floor of Levine Children's Hospital in Charlotte. He began the day by taking a very long ambulance ride from Duke Hospital down to Levine. Lisa rode with him while I packed up and picked up Maggie at Jake's apartment.

Jack did very well today. He ate well and seems to be feeling pretty good. Tomorrow the therapy starts. This will include physical, occupational and speech. We are not sure how long he will be here. A rough estimate right now is 2-6 weeks but the team here has to meet to discuss what the goals are and come up with a plan.

Jack loves to see visitors any of you are welcome to come visit or call anytime.

A special thanks to certain neighbors that made coming home even more special.

Talk soon....

Wednesday, June 9, 2010

Late breaking news...

Heading home on Thursday! Jack will be transported via critical care ambulance to Levine Children's Hospital in Charlotte. He will be under the care of his current rehab doctor who he has seen since he was 20 months old. We are excited about going home.

Cautiously optimistic

Jack started feeling better yesterday. He is now eating, drinking and participating in his therapy sessions. He walked a bit further today and the pt said that she had to do less work for him. The head pain does return if the pain meds aren't kept up with though. He is resting comfortably in bed right now watching a movie.

Rumor has it that we may be heading to Levine Children's Hospital (as planned) in Charlotte on Friday. They will continue to strengthen him and get him off the IV meds in preparation for that. He will be transported by ambulance to Levine.

Caylie has been as good as gold here. She just lays at the foot of his bed all day with occasional potty breaks. She has become a real celebrity on our floor. The kids love her.

I hate to even say it because it is too early but Jack has not had any seizures since the surgery. There is a long way to ago according to his neurologist so he cautions not to expect too much too soon. But, he hasn't startled even once which he was routinely doing several times a day prior to surgery.

We remain cautiously optimistic.

Monday, June 7, 2010


Jack moved into a regular room about 2 hours ago. He had his drainage tube in his head removed finally. He no longer has to have the huge wrap on his head which has been bothering him ever since the surgery on Wednesday. Both doctors feel that he progressing very well from a medical standpoint. Jack is still pretty lethargic after complaining quite vocally for several days about his head hurting. He is now very quiet and hasn't eaten all day. He is getting fluids through IV though. Dr. Grant feels that the likely cause of this behavior is steroid withdrawal. The steroids were vital to reducing inflammation from surgery and are now being tapered off. He may want to taper them more slowly to reduce the withdrawals. Hopefully, Jack will feel better tomorrow.

Sunday, June 6, 2010

Out of PICU hell

Finally today we are out of ICU. We have been moved to a stepdown room. His head drainage tube has been clamped and hopefully, will be removed soon. He is still fussy but is sleeping more. In this room, we can all visit at the same time, CAYLIE included. When the tube is removed, most of the head wrap should come off which serves as a great irritation for him. Will keep you updated...

Saturday, June 5, 2010

Update on Jack (Sat.)

Last night, one of Jack's eyes was dilated. Catscan was negative. Dr. Grant says all is well. The dilation is caused by fluid levels in the brain and isn't a great concern. Also showed a small bleed in the catscan but again, not a concern. Dr. Grant wants him moved to a room today and the head dressing removed. I think this will go a long way to making him feel better. CAYLIE can also visit. :) Lisa and Jo back to RMH for rest. I'm on duty.

Friday, June 4, 2010

New update on Jack

Jack is spending his 3rd night in ICU. The doctors/nurses want to monitor him closely just one more night before sending him to a "step-down" floor where there is less one-on-one nursing care. He is still a bit combative and we're not sure whether it's pain related or just Jack being Jack. He reacted a bit negatively to a couple narcotic pain killers so they are trying others to try and manage the pain. Hopefully, we will be in a room tomorrow and CAYLIE will be able to snuggle with him in bed. Lisa's sister Jo, nephew Mitch, Kris, Shannon, Jake and Nat have all been great support for us as we pull these all nighters. We will keep you posted as always.

Thanks again to all for positive thoughts and prayers.

Wednesday, June 2, 2010

Update on Jack's surgery

Jack is out of surgery and resting comfortably in pediatric ICU. The surgery went very well and as expected according to the neurosurgeon. He has spoken and articulated several things about what hurts, etc. which is good. We were worried about his speech. Also, he moved his right leg. Also a concern. Thanks for all the prayers and good wishes from everyone. We will be at Duke for at least a week before continuing on to Levine in Charlotte. We'll keep you posted.

Update on surgery

Jack's surgery started on time around 9am this morning. All updates so far indicate everything is progressing as planned.

Tuesday, June 1, 2010

Jack's surgery scheduled

Jack's surgery is scheduled for Wednesday, June 2nd at 8:45 am. He is expected to be out of surgery and in ICU around 2pm. I will try to update as time permits.