Justin (Fri)

[Lynlw]

Hi, just wanted to touch base. We are still at CHOP, but thing are going really well, consderring his 2nd surgery was just a week ago today.
I don't think we will be here much longer, he only has 1 chest tube left. His antibiotics(bactrum) have been switched to oral, which is great, since Cooperstown is in about 3 weeks, so really wasn't looking forward to dragging the IV around. Mainly he is just on his pain med, (and even then he isn't taking that many of) bactrum(lots 4 times a day), vitamin, baby aspirin. He HGB has gone up and he has good color which surprises me since he really hasn't been hungry, since the last surgery, he's doing great on his spig, walking and has gotten alot more range of motion inhis right arm, (the side w/ the muscle flap from his pec) he's working hard at accomplishing thse things and in the past couple days, seems more of himself, cracking jokes laughing ect, the one thing I "like" about him when he doesn't feel good is he loves and asks for random hugs, which I miss since he got "older'. All in All we were very Blessed how things happened and were caught so early and that on top of having a top cardiac center, CHOP also have very good plastic surgeon, infectious disease and I'm sure i'm forgetting others. AND is close, since he was home and it was over 1 week post op. Also this reminds me of why it is important that where you go has a couple outstanding heart surgeons, when we found out Justin needed emergency surgery AND HIS surgeon was in Mich, It gave me alot of peace to know that Dr.Gruber is also excellent and does alot of the heart transplants and major surgeries on the kids with complex CHDs.
Thank you so much for all the prayers, sorry I haven't been the best at updating, but a couple days there were pretty tough and Justin was up many times each night, so I'd sit down to update and my brain was too jumbled. But we slept all night and didn't have any nightmares either SO I slept all night, oh I sleep about 4 feet from him. and as much as we love each other and enjoy spending time together, we are both looking forward to being home with 2 stories, heck different rooms on the same floor will be nice
Keep up the prayers, I remember after the 1st surgery when we were home, I kept mentioning prayers since w/ Justin's history I never feel "safe' until about 1 month- 6wks at home. I hope everyone is doing pretty good, I've been thinking of all the members having surgery this week, and getting ready for surg next week and recoverying from surg and other thing, (How are you doing Mary? Gina?) thanks again, Lyn

 

[geebee]

Great update, Lynn, and so very happy to hear that things are going well. I hope you will be home very soon and you still get some of those random hugs.

Did you get to see some fireworks?

 

[WayneGM]

Thanks for the update. Glad to hear things are going well. I hope Justin is home soon.

 

[Phyllis]

So glad to read this update, Lynn. I am going to send you a pm with a link to Cooperstown article from the NY Times today. We are looking forward to hearing that Justin is there and having a ball!

 

[KatieD]

Lyn,

That's so great to hear! I'm glad things are going so much better!

 

[Guest]

Lyn,

Thank you for taking the time to update us! Good to see you posting.

Thoughts/prayers continue, of course, for Justin and a SUCCESSFUL recovery ... and a wonderful trip to Cooperstown .


Hmmm...speaking of updates, anyone heard about Andrew ... or did I miss something?



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
WRMNshowcase.lego.HO.model.MCs.RT.CHD = http://www.chevyasylum.com/cort
"I think it's time to give this game a ride" ... John Fogerty ... 'Centerfield'

 

[Mary]

Hey Lyn,
I'm glad you've updated. I've kept Justin in my prayers all this time, so I was hoping to see a positive post that he's making good progress.
I'll stay tuned, so let us know when he's going home.
Love,
Mary

 

[Lynlw]

HOME HOME HOME now lets STAY here

HOME HOME HOME now lets STAY here

Saturday, July 7, 2007 10:50 PM CDT

So I hear 7/7/07 is supposed to be a lucky day, works for me. the last tue came out and shortly later we were OUT too. Of course ti didn't go THAT smoothly, it only took 3 seperate scripts for the pain meds,to the pharmacy (Down the elevator and across to the other building,to get it right. The most frustrating time was when we dropped his scripts off they said they would have them reay by 12, because then they would be closed for an hour, (it's Sat) BUT since it was written wrong, when we went to pick it up and found out, it was time to close for the hour. Which we used to pack and load the car. So it opened we picked up the meds and when they wrote the 2nd script, they accidently wrote for 1/2 the amount, SOOOO, we had to get the 3rd one, which of course since 1 script was just filled insurance wouldn't ok it, luckily i thought to ask how much it would cost just to pay cash instead of drivng back in a couple days, parking, gas and bridge tolls AND it was only 12 dollars so I said fill it.
About 9am plastic surgery pulled the last tube, (with out his pain meds again, well technically min after he swallowed them)around 10 Dr Chin and the herd of docs stopped by and asked when did the tube get pulled, Justin said about an hour ago. Dr Chin asked how does it look, and Justin said like I was shot and opened his shirt w/ the gauze w/ blood on it. Dr Chin laughed and said, it does, how do you feel about going home? Justin asked when and he said how does lunchtime sound. Justin got the biggest smile. So we got home around 3 (we live 1/2 hour away lol)
I came in the house first and got to the kitchen before Zero saw me, he licked my leg, looked for Justin, then ran down the steps and out the door to see if I had Justin with me. Justin looked scared when he saw this 120 pound of pure love and enegery racing toward him, BUT Zero, stopped just in time. Comet on the other hand was sleeping on the couch downstairs, Justin started petting his head and Comet looked up saw Justin and got so happy.Of course Zero had to jump on the couch walk up Comet's back and sit on his head so HE could get the pets.
Soon Justin was sitting on the couch watching TV with a Dog on either side of him. I have been waiting to see that again, everyone back where they belong. We really are Blessed and know it.
Monday i have to call and make follow up appts with his adult CHD doc, Plastic surgery and infectious disease and he has to have blood work pretty often just to make sure all the bloodwork shows his infection is not returning. I really like Proof, at least when he had the endocarditis they could do blood cultures to make sure everything was gone, but with this infection, they can't really tell if it is all gone. The day he was admitted his chest xray and echo looked normal, they didn't see the infection until (Thank God) they decided to do a CT scan to check for a clot in his lungs, but if they did a CT scan this close to surgery it wouldn't really show if it there was a small infection or all the normal things you'd see this close to the surgeries. So they rely on blood work, check the white blood cell counts and other markers that your body is fighting and infection and go by symptons, do his fevers low grade come back? incision look good? ect. Of course the part that makes us nervous is by the time he had symptons last time, he already needed emergency surgery. "They" say they cleared out all the tissue that looked infected and a little it around that and IF you follow the protocal it SHOULD kill the weird Staph and "hopefully" IF there still is an infection or it comes back it doesn't necessarily need surgery. But we all know how Justin doesn't follow any of the rules in books. So we will just say lots of prayers and take 1 day at a time.
The other thing we have to keep an eye on, is there a little bit of muscle, that looks like a lump under his arm pit that had the muscle flap. But it doesn't hurt or anything, we didn't even notice it until Thurs when he could finally lift his arm at the shoulder a little bit. He has been making great progress on getting that arm working again, they said it will take some time, but he should end up 100% movement, so that has him happy. ALl in all, for having 2 majory surgeries in 10 days and the 2nd one only being 10 days ago, everyone is thrilled with how well he is doing. I am so happy and grateful to everyone.
The one thing that had him a little bummed yesterday was they called to see if he would be able to do the load in and load out for the Police concert in philly, it is a big outdoor stage, so it takes a few days just to build. When he had to stop working and surgery was supposed to be June 5th, that would have been when he was allowed to work again, so they were pretty surprised when he said, Sorry, I don't think I'll be able to, Ihad a 2nd surgery and am still in the hospital. I could probably carry the mikes onto the stage lol. BUT there will be plenty of shows for him to work and it will probably feel so good to push all the heavey things around, with out having his pulm artey almost shut and actually have his blood being able to leave his heart and get to his lungs. He already looks so much better, even with being inside for the past 3 weeks, he still has more color to his cheeks than he did for the past few months. Well i'm tired and ramblin again, so will end. PLEASE keep the prayers going, that the infection is completely GONE, there are no more little bumps in the road and that when he is walking around Cooperstown in 18 days he feels really good. I hope Cal realizes how much some of his fans will go thru to be able to share in his day. I know Cal is called the "Iron Man" for breaking the long record for most consecutive games played, but personally I think Justin is the real Iron Man. I love him and am so proud.
Love lyn
ps please keep all the kids in your prayers and say an extra prayer for a young man John at CHOP who is a few years older than Justin and was born with many of the same CHDs. He has been having a really really tough time, and has been at CHOP since I think Oct, he got a new heart in Feb and still has many issues to overcome before HIS Mom can take him home where HE belongs.

 

[geebee]

Oh, Lynn, I am so happy to hear Justin is home and surrounded by the dogs. It sounds so perfect. I have been and will continue to pray for your entire family (and the other kids) so that things stay good and Justin's recovery stays on the upward trend.

Thanks for the update.

 

[Karlynn]

There's no place like home. I'm so glad to read that Comet and Zero have their boy back where he belongs.

 

[WayneGM]

Glad to hear Justin is home. Best wishes to Justin and all the other kids.

 

[Phyllis]

So glad to hear you are all home- prayers will continue for Justin and all the other kids. Find some time to rest up Lyn!

 

[adamsmom]

The news I was looking for!

The news I was looking for!

Hurray!!! We are so glad to hear you are home. Adam says to tell Justin to keep up the good work. You guys remain in our prayers that the infection is gone, and that the flap heals well.

 

[Guest]

Woo hoo! Ssssooo glad that Justin is back HOME!

Thoughts/prayers coming your way, Justin ... and, of course, for you as well, Lyn.



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
WRMNshowcase.lego.HO.model.MCs.RT.CHD = http://www.chevyasylum.com/cort
"It's time to take a leap of faith" ... Steven Curtis Chapman ... 'Dive'

 

[gijanet]

OH, Lyn, thank God!

OH, Lyn, thank God!

I am so glad y'all are home. We've been out of town and I haven't had a chance to check your site (for some reason, too, I don't get messages saying Justin's page has been updated. I do Niki's, but not yours! ) Anyway, I am thrilled and have not let up on the prayers one little bit. Even now that y'all are home, I'm not as the last "visit" at home was much too short...................and, hey,can I please take Justin's place working the Police concert. Puh - lease????? I'd even turn over the paycheck to him? Huh, how 'bout it?

Please keep us posted as always. Much love. J.

 

[ToFMom]

Lyn, so glad to hear you guys are home! And hopefully things will go very smoothly until the big trip! I will keep Justin in my prayers. Hope that arm starts to feel better & the infection stays away! Get lots of rest now that you guys are home! Yippeee!!!

 

[Susan BAV]

Hope things are still going well. Post again when you can.

 

[Andrew'sMom]

Hi Lyn, Glad to read you all are home again. I hope Justin is continuing his recovery with no further complications. Sending best wishes for continued good health. Just got back from vacationing in the Philly area (during the heat wave!). Anyway, we got to Philly Sunday and Justin was already home. The thought crossed my mind to stop in at CHOP to meet you & that awesome kid of yours if he was still in the hosp. ... sounds silly to say, but I am glad to have not had the opportunity, as it means Justin is doing well enough to be home!

 

[francie12]

I've been looking for this post and am so relieved and happy to see it. Justin went home on my birthday, 7/7/07 (someone called it the luckiest day of the century). This news is a lovely gift!

 

[cocoalab]

Great to know you are home. As you know we hope to be joining your ranks soon. Hope Justin is continuing to feel pretty good and that there is nothing that gets in the way of his plans for Cooperville.