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 here....wow 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!