Saturday, October 18, 2008

Adventure's, and friends

Took the kids to this place in Raleigh called Adventure Landing. They have putt putt and arcade games, and go carts and all that stuff. Well, we just did the putt putt and the arcarde games. The picture on the welcome page is from the beginning of the putt putt coarse.

We took the adventure coarse, which has some very large steps in the middle of hole 13. And poor Garran could not make it up the steps. So he was carried. He did very well for most of the journey through the putt putt coarse, tough little guy.

The kids had a blast. It was good to see them smile, laugh and have fun. I had fun too... :)

Tonight I took them to a chinese restaurant down the road. We were going to get take out because we were out and about and it was getting late, and they were all hungry. But then they all had to pee, so I said lets just go in. It was a nice chinese restaurant, the kids got their "training chopsticks" And Surprisingly they all ate their food, even Garran. He loves Lo Mein. me too. That and General Tao's Chicken. I like the spicy stuff. So does Garran.

The other two kids got the sweet honey chicken. I am not big into sweet chicken. something about mixing sweet and salt, I just cant do it.

The other day we were very priveledged to meet a fantastic woman who has had two double lung transplants. She has CF as well, and her charm and graceful demeaner was a peace that I really appreciated. She was able to give insight on how Garran is feeling about things, and what he is going through. things he won't talk about, or just cant because he is too young to understand how to talk about them.

I am very grateful to be able to meet her.

Last week in Support group, another CF'er who had had his Tx was there, and Garran was of coarse being Mr. talkative. as usual. which is good. But at the end of the group, he asked the man if he could see his scars. And surprisingly, he showed him. this was so great for Garran. I dont know if the gentlman really knows how much this helped him. He got into the car and said "Mom did you know that the scars were going to look like happy faces!"

So a big thank you to him!

What a great bunch of people we have met in the last few weeks. emails from friends and instant messages, with warm thoughts, and offers of help. I can not express, how much it means. Sometimes weeks will go by and there will be nothing, and it gets very lonely, for all of us, Garran will go to the mail box and say, "no mail" I cant wait to have my mail forwarded so he can start getting the mail out, even if it isnt addressed to him, he loves it..... He makes me laugh, I will get a bill from the insurance Co. and he will say "Mom that has my name on it!, it's mine!" and yet there are weeks that there is so much going on that we cant move without the phone ringing or the door knocking. So it is hit and miss.

Anyway, Today was a good enough day, and we are happy. that is what matters.


Monday, October 13, 2008

random thoughts

It has been a busy weekend. Chris and Brendon came down for the weekend. This was very exciting for all of us. Garran enjoyed having them at his Pulmo Rehab today. Maybe too excited. He didnt get very much accomplished. He was a bit too distracted.

He had his three week followup with the transplant clinic on Friday. We didnt get any X rays done, because they didnt have any in the system down stairs to be done, so maybe we wil have some done sometime this week. But He did lose some weight. about a pound and a 1/2. I figured he had lost some, he has been looking a little puny, and with all the exercise he is doing and the lack of eating, It adds up. Yes he gets tube feeds but with out eating enough to sustain the difference in the calories he is putting out just breathing and then exercising three times a week and then the stuff we do during the week at home, he is bound to lose weight.

We talked with the Nutritionalist for the CF clinic, and she said maybe get him back on the Boost during the day in between feeds to supplement the fact he isnt eating as much as he should. He likes Boost. The chocolate kind. It is just so darn expensive. She said she is going to talk to the Social Worker about seeing if Tricare will cover it. I doubt they will since they are covering the formula for his enteral feeds. but it is worth a try. Other wise I will just go buy a bunch of it, and deal with it. If he will drink it, and he gains weight with it, it is worth it.

He is still in the 50th percentile, but that is because he is tall for his age. skinny and tall. all my kids are skinny and tall. well all but one. Shawn is built like his dad, short and stocky. I dont know where they get the skinny and tall stuff. certainly not from me. I am only 5'6" and well we won't give out the weight stuff here. there is such a thing as TMI. :)

They started him back on the Zyvox (Linezolid) and Rifampin for 30 days to keep the MRSA at bay. he hasnt cultured it since June but we want to keep him clear. they took a sputum culture but it takes a few days to get it back, we will know something by friday I think as to whether he is cultering MRSA again. And if so we are already kicking its butt...:)

Anyway, I spoke with The Dr at Clinic about getting someone to talk with Garran about these feelings he is having. I talked about the stuff Garran said about wanting to go and see the graveyard, and the talking about dying alot. They have a psychiatrist that works with the transplant clinic. I hope that they can get Garran to talk. He is very worried about all of this.
The other day we talked as a family, and Chris let Garran describe what will happen during the transplant, he had him draw on Chris's chest with a marker how they will take out the lungs and put the new ones in and put the chest tubes in, and talked about the breathing tube, and everything. talked about the scars. Garran explained everything to us, this seemed to help him alot. And it helped the other kids because they were having alot of anxiety about the surgery as well.

We have had the talk with Garran about what will happen during the surgery so he knew, but the other kids didnt, so this demonstration was very beneficial to all of them. Even Brendon.
Shawn has been having problems adjusting at the new school, and I have already gotten a call from his new teacher about his school work. She is concerned that he isnt doing well academically. Well, Shawn was advanced at his other school so there should be no reason that he isnt doing well here other than the fact that he is under alot of stress being in a new school, with his brother getting a transplant and his dad and other brother milies away. He has alot to be thinking about. And he is very sensitive, and very close to Garran. He takes all this to heart.
We finally have about all the paperwork all set up with COTA for Garran. they havent set up his Website for fundraising yet, but if anyone wants to donate to him they can go to their site and click on the donate now button and they have a drop down list and search for Garran's name. They send out a receipt for tax purposes and everything. I guess you can do it where it comes out periodically as well out of your paycheck.

Anyway, things are moving along slowly, no new offers for lungs. Garran doesnt have another appointment until October 31st. His transplant Coordinator wanted him to come in on Halloween so she could see him in costume. I told her we were going to dress him up as a Mummy because the apartments were having a costume contest and party and since there are so many other Tx patients he will have to wear a mask anyway, we can incorporate it into the costume and it will fit, with the Mummy costume. the kids will all be up here by the 31st I should have them all dress up that day and go in to clinic, that will be fun. Maybe we will all be Dr's. :)

If anyone from his clinic in VA reads this, the transplant team here as well as his PT team that does his Pulmo rehab are all going to the CF Conference on the weekend of the 23rd-26th, so if you are going you might see them there.

We will be up in VA on that weekend packing a moving van and driving it back down how fun will that be. Can I tell you how much I do not like driving my husbands pick up truck. Since the time I damaged it in the drive through in the bank, I am very leary of driving it. So I really dont look forward to driving it back down... :(

But I cant wait to be an entire family again.
But that wont be until Nov. 7th when Chris will be with us. It almost feels like a Deployment. This weekend driving in the same vehicle all together felt very odd.

Well, my random thoughts are about at an end. The children are asleep, and I am going to join them. Thank you all for continuing to pray for our family.

God Bless you all!

Friday, October 3, 2008

Update 10-3-08

So i am still tripping over that really cool donation of the sat monitor. OK I sounded like a hippie there, yes people I am only 32.

Today I had to go to the DMV to get a NC ID so I could register my van becuase my VA tags are expiring and I dont have time to go up to VA to get them renewed. So in order to do this I needed to A. get a NC license, or B. get a NC ID. So I opted for an ID.

And as in all DMV's we waited, and waited, and waited........seems to be our lot in life lately. waiting. But we met some interesting people in the lobby. yes I am one of those people that if you talk to me in the waiting room I will talk back. I didnt used to, but living in the south for so long I have almost driven all the NY out of me.

People always have questions when they see Garran with his oxygen. Sometimes I am not in a great mood and dont really feel like answering, but I know that they dont mean any harm by asking. And I can further knowledge about CF and organ donation.

By the way as of today I am officially an organ donor. Surprisingly, I thought I had been on my VA license, but I wasnt, what a bum transplant mom I am. So now I am officially an organ donor.
So anyway, as we are leaving the DMV Garran sees this cemetary next to the office. And he says "mom thats a really big graveyard" I said "yes it is" he said " can we go visit one of those someday?" I asked him why, and he said " I just want to see what is on the stones" Then he said, "why do some have flowers and some don't" and I said "well people bring flowers to graves of people that have passed on that they loved so that they can remember them." then he said "did you know when we go to heaven we will get a new body that will never die?"

What alot of thought for a little boy. He really has alot on his shoulders right now. I sit and think, hmm this is alot for me to handle, but he is the one going through this. And he is handling this with such grace. I can not even express it.

God really shines through him.

Thursday, October 2, 2008

very cool

Something Fantastic happened today.

No, not lungs, but something good just the same.

Anyway, So since we have had to relocate here we had to switch medical supply companies, and our old company in VA has asked for us to ship some of the equipment back that was on rental contract.

One of these items is Garrans Pulse Oximeter. Obviously we need this item. So I called our new company and told them that we need to get one, and how we really liked the one we had because it was the only one we could find that actually worked on Garran. We even have to take it to the hospital because it works better than the hospital equipment.

Unfortunately the current carrier can not get this specific Pulse Ox. So I decided to email the company that makes it to see how much it would cost to buy it outright. I told them whats going on and why we need it. How it is the only one that works for him etc...We really like this Pulse Ox did I mention that.

Anyway, I get a call this afternoon from them and they want to send one to Garran as a Donation. It is from their warehouse and is slightly used but just for demonstrations etc, but still WOW!!!!!!!

I can not express to you all how amazing this is. What a blessing! Right when we needed it!
So thank you to GE the company that is donating this machine. We are so very appreciative that we can not even express it!

I actually began crying when he called I was so happy.

So it is a Good Day.