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.

Tuesday, September 30, 2008

Update 9-30-08 and New Photos Caring Bridge site

Yesterday Garran had his therapy and he did very well. He had a rough patch at the end and desatted to around 88 but was able to bring his numbers back up in a few minutes when we bumped his O2 up to 3 litres of continuous.

We were able to get the van fixed yesterday. The guy that delivers the oxygen came by and I guess he fixes cars on the side, and mentioned that it might just be the battery. I didnt think it would be the battery cause the van is only 4 years old. But sure enough it was.

But I was able to meet one of my neighbors in the process, as she over heard us trying to figure out things and offered to lend us some jumper cables. Then the O2 guy got his van stuck in the lawn at the apartments, (dont ask) and so I wound up using the rental car to, yes, pull this huge van filled with liquid O2 out of the NC mud. imagine, a little PT cruiser pulling a big van out of
the mud. but it did.

I have to laugh cause I was so scared at the time that it was going to trash the rental and I was going to have to pay for damages. Either way, my van is now working, and there are two big holes in the lawn in front of the apartment. And I have a rental car until Saturday.

But since there is no gas station in town that has gas it is worth having two vehicles with full tanks just in case. Yes no stations with gas. Is that crazy or what.

My daughter asked me if this was the end of the world like in the bible. I told her it just might be. Things are really looking close to it.

Anyway, not much else going on. Just waiting. Garran is back on his eating trip again. I like it when he is eating. I told my mom that he is a depression eater. Like his mother. He eats when he is sad. When he missed the kids and his dad he ate, when they first got her he didnt eat. But lately when he started thinking about dying, he started eating again. wierd.

So updates when they happen.

Saturday, September 27, 2008

I don't know all the answers.....

Well, Garran did well on Friday at Pulmonary Rehab. He did the treadmill for about 3 minutes and the the stair master for 2 minutes, then went to the trampoline for a few jumps. He wasnt as active as he was the day the kids came with him. He dropped pretty hard on his sats too. By the end of his Therapy he was satting at 88% on 3 litres. Which went back up after he calmed down and his heart rate dropped. But still.

He is alot happier with them here. That is good. They started school down the road. They were quite nervous the first day. But so far they have already started to make friends.

Tonight, I went out to go to the grocery store with children in tote. And stopped at a oil change place to see how much it cost to get an oil change. The shop was closing so I got back in the car to leave, and well, my van didnt want to start.

Convenient that I was in front of a mechanic shop though. I was blessed enough to have a very nice man who worked there come out and take a look at it, and jump start the engine. It sounds like we need to get a new alternator for the van. Great. Just one more thing to add....

I am hoping maybe this is covered on the warranty, but I am not holding my breath. I will call Monday. Unless of coarse the van doesnt start again tomorrow and I have to call the 24 hr road side assistance tomorrow. Then we will know for sure huh... :)
Either way, things can only get better.
We are trying to stay possitive here.

Garran has been worried lately. He came to me yesterday and said "Mommy, I don't want to die" What do you say to that? He's 7. I shouldnt have to have and answer for that. He asked "why did God give me lungs that didnt work?" These are big questions for a kid his age. I told him that I didnt have a perfect answer for him. That maybe someday after all this is over, and he has new perfect lungs, he will tell his story to someone and they will come to know God because of it. He was very happy with that.

I dont know all the answers, Only God knows all the answers. But someday, when all this is in the past we will look back and say 'hmm, thats why' ....Otherwise, I really cant rationalize any of this for him.
Anyway, thats whats happening today.

Wednesday, September 24, 2008

home again home again.........

So, We are back in NC, Garran had a good trip to VA. Uneventful medically. As usual rain followed me, so it rained the first day we were home. But the rest of the weekend was good.
Today he went to Pulmo Rehab, and I have to say it had to be the most productive he has had thus far. His brother and sister had to come becuase the school wasnt ready to admit them yet, so they cant start til tomorrow.

But because they were there, Garran did 5 minutes on the tread mill, rode the tricycle around the hospital for about 10 minutes, and stayed above 90 % sats, and then played on the Wii for the remainder of the time. He did fantastic. By the end tho he was real tired, and his sats were barely getting above 90 on 3 litres, but he was really trying.

The pharmacy up in VA started carrying the 7% saline which is very cool, so we were able to get a 3 month supply before we left, I am glad for that. It makes things easier. Mixing it to make the 7% isnt hard, just time consuming.

We decided to start fundraising with COTA. So soon we will have a website set up with them. I will still have this site. But there will be a separate site just for fundraising purposes, and for anyone that wants to volunteer to help fundraise, and help on the events.
Anyway, Thats about it for now, nothing else new to report.

Sunday, September 21, 2008

Update September 19, 2008

So, we are back here in VA for a few days, and Garran was able to go and visit his old school and see some of his old teachers and the principal. And lets not forget the person he saw the most, the school nurse. This made his day to see them all, and then we went up to the hospital and saw the CF clinic team, and the PEDS ward to see the nurses and the Child Life person up there. He really considers these people part of his family since he has spent so much time at the hospital there. I mean we have been here since he was 2 years old, these people have watched him grow up. It is hard leaving.
He of coarse had to buy a special present for his fiance and his girlfriend on the PEDS ward but they were not working. So hopefully they will get his present and maybe write something on here to let him know that they got it. hint hint.....I think he would like that alot. ;)
It is nice to be home for a few days. Strange, honestly. I couldnt sleep last night. I wasnt used to the normal sounds of my own house, and everything was waking me up. There was no hospital beeps and no nurses coming in and waking us up, No children running back and forth upstairs. And oddly enough the apartment is erily quiet compared to my house. So the noise here is albeit comforting, something I have to get used to again, after being gone for so long.
Altogether Garran and I have only spent 3 nights in our own house since July. And sparcely in June. Some things are almost unrecognisable at this point.
Garran is doing fine medically today, he is a little tired from the days activities. Alot of walking. By the time we were done with the PEDS floor his Dad had to carry him to the car. It was just too much for him. But after a quick nap on the way home he was raring to go tonight with the kids. We watched Speed Racer. Which he absolutely Loved! He loves race cars. And he was racing his hotwheel cars up and down the couch as the movie was playing. We might have to go buy that movie.
All in all, it was a good day. Thank you to everyone who has been keeping up with us. It really means alot to us. Sometimes it feels a little lonely and discouraging here. And It helps when you get on and someone has written a little note just to say 'hi was thinking of you'.
Anyway, I will update when we get back to NC or if something else happens between now and Monday.

Friday, September 12, 2008

Check up---9-12-08

Today we went in for his two week check in with the transplant team. He also had an X-ray. The X-Ray didnt look all that great. Close to the same as last time. maybe a little more cloudy in the right side up top and some more white in the bottom if that is possible, since the bottom was just about completely white before. The Right lung is less than half the size of his left.

He has lost a bit of weight, with his shoes on and jeans he weighed in at 52 pounds. I know that this is expected, but it isnt that great to see.
He was satting at about 92% on the pulse ox, on 2.5 litres of oxygen.

The good news is that he is no longer on any oral or IV antibiotics and they took the PICC line out today. Mostly since it has been in since August 4th and we dont want it to cause any new infections that could mess his chances on the transplant.

Nothing new on that end, no new offers, just waiting.

He has had this really bad itch on his bottom for the past few weeks and we cant seem to figure out what the problem is, there is nothing to be seen that could be causing it, and no new meds that could be causing any irritations, so the doc put him on an anti histimine to help the itch to see if that will alleviate it.
As far as the storm we got by ok, just alot of rain, and our home in VA was ok, just rain as well. The cats were scared, but got over it. It will be so nice when everyone is all in one place.

Thats about it for now.

Tuesday, September 9, 2008

Donations/Website Updates

Some of you have asked where you can send donations to help Garran and help offset the costs associated with transplant. There is a link to the right on the screen that says donate and you can send them via paypal.

Garran was discharged from the hospital on August 12, 2008, after spending 35 days in the hospital. We are currently staying in the area near the hospital waiting for lungs. He goes in for therapy a few times a week and in to clinic every other week for follow-ups, but now it is wait time. He has had three offers since he has been listed but the first two sets were damaged and were subsequently turned down. And the third was too small. You can still keep up with his status at the website below:

Thank you for stopping by and God Bless!



I update this site with Garran's status as much as possible, but there are no RSS feeds for this site. It does send email updates to subscribers of his journal but thats about the entent of it.