Just Need a Place to Talk

[SINYMom]

Feeling a little overwhelmed at the moment which is kind of funny as this may turn out to be nothing, but with my son's track record, you never know.

My Joseph (who is 10), one of a set of identical twins was born with cystic hygromas and lymphangiomas. He had his 11th surgery this past May, weeks after his 15th hospitalization. The thing with these hygromas is they become infected. Most of them are in his left hand and arm but, he was born with a large one on his torso that cost him the lymph nodes under his left arm along with tissue and muscle in his upper left arm and on the left side of his chest.

So when Joe gets an infection in his left hand, his body has no way to fight it short of IV antibotic therapy and hanging his arm in the air to literally drain the infection out of his hand and arm.

We had Joe's surgery early in May for two reasons, the first and most important being the infection, the second was so we would have time to see if another post-op infection would occur. Well, we leave for Disney in just over two weeks and now it looks like Joe's getting another infection in the same fingers he just had surgery on.

I'm taking him to our pediatrician shortly and am now trying to move up my appointment with the surgeon from the 20th of this month to something sooner.

Oh yeah, and he probably has another cavity thanks to all of the medication taking it's toll on his teeth again. He is the only one of my three boys that has had cavities and the dentist says it's because of all the medications he has been on since birth. So we are off to the dentist on Wednesday, the soonest we can get to see 'his' dentist.

It's just been a rough year, my husband had emergency surgery right before Halloween for an intestinal blockage that turned into a perforated intestine with severe infection (three days in ICU on a respirator). Had to have a colostomy for five months. He had the reversal in early April, the surgery went well but the hospital sent him home with a fever and an infection. We had nurses in three times a day to check on him and change the dressings.

This was when Joe's infection occurred and I had to leave a sick husband at home with my other two boys to spent a few days in the hospital with my son.

I was hoping we were finally on our way to good health and now this. I know we will get through this as we have gotten through everything else, but, sometimes, you just need a place to talk.

 

[mommasita]

Boy that is a lot to deal with, you poor thing..

Praying this is not a large infection, and your trip goes off without a hitch. You all certainly deserve it..

Large amounts of prayers, hugs, and some pixie dust.

 

[mom2aredhead]

...from our home in SI to yours.

Sounds like you've had a really tough year - I can't even imagine going thru all that and still trying to keep it together.

Hope you are all able to go on your trip healthy and (relatively) worry free.

 

[escape]

Awwwww, poor little guy. Sounds like you and your family have been through so much already.

Like mommasita said, maybe the infection can be dealt with and you can still go on your vacation. Sounds like you all could use one right now.

I'll keep my fingers cross and I'll also send some and a prayer your way.

Please keep us informed.

 

[SINYMom]

Thank you for listening and checking in, I do so appreciate the prayers, hugs, pixie dust and support. Mom always needs to be strong, so it's good to have place to gather strength from other Mom's (and Dad's).

We saw the pediatrician last night, and yes, he has another infection in his hand, mostly in the fingers. Two of the fingers are so swollen the skin is starting to get blisters and breakdown. Not good, as these breakdowns allow other bacteria in. So he started mega antibiotics, don't know how my DS gets those horse pills down but he does, thank goodness, without a fuss.

Spoke with the surgeon's office, and I need to wrap his fingers and then his hand in Coban (kind of like a sticky paper ace bandage). This will help with the swelling along with elevating his hand and arm. He isn't going to be happy about this as it really limits what he can do. This is a boy who likes to be active, can't sit still, gotta keep moving. Then at night, he sleeps like a rock, it's his body's way to heal. So I'll stay home from work tomorrow, make sure he does what he needs to do and then we see the surgeon on Friday. I'm hoping for some progress by then, Joe knows we're heading to Disney so he will do what he needs to do to get better so we can go.

And this, I tell my husband, is why we go on vacation and why I pushed for DVC. My little guy needs another trip to the Happiest Place on Earth!!

 

[LuvOrlando]

I don't have any advice but here is a DIS

I hope everything gets under control for you and your family soon.

 

[Mackey Mouse]

HI....I do hope all is well with your son and that your husband is doing better too..

When my husband had his cancer surgery and he was in his first recovery, we bought DVC. We figured it was time and wished we had done it years ago. It seems everytime Tom had a break from chemo and/or radiation, just a week, we would head to WDW for some sun and some magic. We knew where everything was and we knew that if he was feeling ill, I could get help back to our resort. We never pushed it, just sort of walked around a little and soaked it all in and then he would come back home and do battle again rejuvenated.

Hugs to you and yours and please come and talk here anytime you want, this is why this board was created..

 

[Dancin Desert]

I'm speechless. All I can say is

Dave