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.