I just wanted to transfer all of Garran's journal entries from his caringbridge since Tx. Mostly for my own benefit of having them in one place, but some people cant get on the caringbridge site, so it is all here chronologically from day one, but backwards...:)
Vik
Tuesday, May 19, 2009 6:34 PM, CDT
So although all of Garrans numbers were great the other day, including fantastic PFT's, at 104%, this morning he woke with a fever. And it hasnt gone down very much all day.He is feeling tired and puny. :(We called the clinic and for now he is back on some Zyvox for any infection and tylenol for the fever.Lets pray that it is just a virus and goes away fast.Thats all I have for now.
Thursday, May 14, 2009 7:35 AM, CDT
It has been a while since I last updated here. Garran is doing pretty good. He is maintaining his weight. He has another Bronchoscopy this month to recheck the rejection. We got a puppy a few weeks ago. This was a promise to Garran post transplant. He wanted a black puppy and he was going to call her Fudge. but instead we got a copper colored chow/collie mix. She is adorable.He is now officially done with pulmonary rehab. He still does his exercises at home. Even though he complains about it....But mostly running around outside is enough exercise most days.I finally graduated from college this weekend, and we all traveled up to VA for the commencement. Most hotels were booked...There is nothing like staying in one room with six people to test your love for eachother...lol...It wasnt bad really, the kids were extremely well behaved the whole time. Anyway, that is about it.I will update later this weekend after his appointment Friday.
Thursday, April 16, 2009 6:17 AM, CDT
So not a whole lot has been happening since I last wrote on here. Garran had a great birthday. His grandparents came into town and his Grandfather made him a lego table to build all his legos on. He loved it!All the kids were so excited to have them in town. They talked about it for a week.Tuesday Garran had a bronchoscopy to recheck for rejection, as the last one had some acute rejection. We got a call late last night with the results.Hsi Right lung looked good, and the left lung had some inflamation and some acute rejection again, but it was less than last time, so it looks like it is getting better. He will more than likely do a small burst of high dose steroids this time orally in stead of IV. And then a taper down to where he is now.Hopefully this will kick the rejection.Otherwise, he is doing good, no symptoms, no drops in PFT's. Still gaining weight, and loving life.
Thursday, April 2, 2009 12:44 PM, CDT
HAPPY BIRTHDAY GARRAN!!!!!!!!
8 years old!
I love you son!
Friday, March 27, 2009 2:12 PM, CDT
Yet again Garran tops the charts at 99% on his PFTs!!!!
He has gained weight again! and is now 54.1 pounds! and has also gotten taller. I just can not tell you how happy we are today.
So many things to be thankful for.
Friday, March 13, 2009 6:19 PM, CDT
93% !!!!!
Garran did his PFT's today for the first time since last June. He has never been above 65% FEV 1 in all the times he has ever done PFT's even when he was well. He did so good!!!!
He has gained weight again and is up to 52.8 pounds! It was a good day!
Thursday, March 5, 2009 2:16 PM, CST
Garran is home from the hospital. Everything went fairly well. We should find out if the steroids worked in about 6 weeks when he has another bronch.
He goes in next friday for a clinic appointment and has PFT's, that will the first time he has done PFT's since his collapse last July.
It will be interesting to see.
He also lost his first tooth yesterday. He was so excited!This tooth has been loose since before tx, and we were worried that it woul dbe knocked out by the vent, but alas, it would not come out, and there was even the adult tooth already growing in behind it.
Anyway, nothing else to report.
Monday, March 2, 2009 3:51 PM, CST
Good News is that the cultures have come back and he is free and clean of all bacteria. There is nothing growing in his lungs!
So that being said he is not going ot have to be on any Abx first so they are bringing him in tonight for the three days of IV steroids for the acute rejection.
We are just waiting for them to get him a room ready and we will head up to the hospital.
On another note, Garran played out in the snow today and went sledding with his dad. He had such a good time. The kids all had a blast playing in the snow since there was no school today.
Thats about it, I will update if anything happens after he is admitted tonight.
Friday, February 27, 2009 7:08 PM, CST
Garran had his one month biopsy and bronchoscopy today. He didnt have alot of secretions, but they took a sample of what they did find to culture.
He is having a small amount of acute rejection in his left lung. They have to wait until the cultures come back so we can see if there is an infection that needs to be addressed first, then they will bring him in for 3 days of IV steroids. These are alot higher dose than what he is on now, so they need to be able to watch his sugar levels etc...otherwise he could stay home and go in once a day to get them.
But That being said. He is still doing good. He is not showing any outwad signs of rejection. And to be honest this is the best he has felt in years.
I am trying to figure out how I feel about all this right now, when I get a chance to think about it, I might come back and post. But for now we just need to get over this hurdle.
Monday, February 23, 2009 1:35 PM, CST
He had his first therapy today post transplant. It is amazing to me still to watch him as he runs on the treadmill, and jumps on the trampoline without ever getting out of breath. So amazing!
What can I say about everything that has transpired over the past few weeks? In many ways I am completely speechless. But, those of you who know me, know that I am never speechless...lol... Last night I sat and watched Garran eat his dinner. A strange thing to say, unless you have spent the last four years watching him NOT eat his dinner. I watched him eat his spaghetti like it was going to run away from him. And I smiled. I notice that since his transplant he is happier. Not that he wasnt happy before, but there is a joy deep inside of him that just seems to have erupted, and it shows in his eyes. He feels good for the first time in his life. He can breathe. I just about cry everytime I say that. He can breathe. Watching him struggle for breath for so long, we lied to ourselves, and tried to make things seem not so bad. We would look for the smallest improvements and rejoice, and there was such satisfaction in that. Yet to look at him and to listen to his quiet breathing, I reaffirm the choice we had to make to allow him to be listed. So scary the thought of him having to get a transplant. So much of the unknown. And still so much is so new to us, and everyday is a learning curve. And I sit and think about the decision we had to make, for this child. How hard it was to make that choice. And the things we tossed up in the air and said what if this and what if that. Will he have a better quality of life, or is the quantity of life enough? Do we have the right to choose for him? I reaffirm this decision as I look into his beaming eyes, and see the joy that shines through him. He is so happy, so full of life. And I love him so much. I didnt have very much to write today, just a random thought or two on how this experience has made me feel. I am so grateful for this gift that was given to my child. I pray for that family that lost their loved one. I pray for peace, and comfort. And I pray that they know how thankful we are to them.
Saturday, February 21, 2009 11:04 AM, CST
Garran had his first tx clinic visit post transplant yesterday. It went well. His Tac levels were good. They took an X ray and it was looking like the lungs were expanding well and have expanded even more since tuesday.
They took him off of the extra antibiotics. So he is no longer on Zyvox, Levaquin, minocyclin, and the extra vitamin K and D nor the zinc.
He is doing well on the anti rejection meds. No odd sideeffects. And he is tolorating everything without any nausea.
He has gained some weight, and is eating really well. He has his first months Bronchoscopy next Friday. He has to go in Thursday for blood work and then Friday morning for the Bronch, but he wont have to stay over night, just an out patient procedure.
They will take a biopsy this time provided there is not infection like the last time.
That is all there is for now. Will update after his Therapy on Monday.
Thursday, February 19, 2009 10:01 AM, CST
We are home. He was discharged from the hospital at 4:30 pm on Tuesday February 17th 2009. The last few days has been getting used to new meds and schedules.
It isnt so difficult just different. He has to have vitals each morning, which dont take very long. And there are some meds he absolutely cant take together, and some things he cant take at all while on these meds.
All in all he is doing fabuous! his SpO2 has been at 100% consistently, he is tolorating more and more exercise, and surprisingly enough he doesn not require pain meds. His inscision site is looking good, and the line is looking smaller and lighter everyday.
He is eating great! The "lego master" is making so many lego creations I cant keep up with him. He is so good at it! he calls himself the Lego Master...lol...Maybe some day he will become a structural engineer. :)
He starts back up with his homebound schooling on Monday. He will stay on that until the next school year then he will go to regular school.
anyway, thats about it for now.
Monday, February 16, 2009 1:08 PM, CST
Garran is officially tube free!!!!!!!
All chest tubes have been removed! and he should be going home tomorrow! what was the first thing he did when they took them out you ask? Layed on his belly...lol...He was so tired of being on his back.
He is super excited to go home and his siblings will be so happy when they get home from school and i tell them that he is coming home tomorrow.
So all good news right now. Both lungs are nicely expanded after the removal, no more fluid leaking. He is satting at 100%, with no oxygen. And is so happy to be free from the O2 tube. he wanted to have a ritual burning of the O2 tubing at the house but I already threw all that stuff out...lol...
When I told him that they people came and picked up all the tanks, he was elated! So happy he was almost giggling. :) I bet he wishes he was here to see it go...
anyway, good news all around, and I will post some pics when he comes home.
Friday, February 13, 2009 1:36 PM, CST
Garran is doing well today. He had to go to radiology this afternoon to have a Xray done, and yesterday had a swallow study done to check for aspiration. All tests were fine on that. But the X ray was showing a slight collapse on both lungs which is not uncommon, so they have him back on suction on his chest tubes, and also added some lasix to try and relieve some of the fluid retention.
So far the bronchoscopy cultures have come back only growing the stenotrophomonas in his upper airways, which is what he grew out predominately before transplant, and some common cold bugs in his lower airways that were in the donor lungs prior to tx. So, it is possible he may be able to go home without a PICC line and only on oral meds, but just in case he is sceduled for a PICC for Monday. He has to have it placed in the radiology department because he has very few veins left.
Otherwise, his grandmother on Chris' side has come into town and he is looking forward to seeing her tonight. He has asked her to make him a roast with mushy carrots and greenbeans.
Our good friends Meghann and Tiffany came by yesterday and today and brought him soe cute little toys, He was also very blessed with a special gift in the mail from the lego company yesterday of two big sets for him to build when he gets home.
I had written to them asking if I could buy legos in bulk so I could surprise him with a big bunch of them when he gets home, and they surprised me with a package for him. How very nice. :)
So many of my friends online have been sending him cards etc and he is loving them, Thank you all. It really keeps his spirits up. Especially now that he cant really get up to even walk around the ward because he is on wall suction again.
Anyway, I added a photo from today to the welcome page. Showing Garran without O2 and happily playing his DS.
Wednesday, February 11, 2009 9:03 AM, CST
So He had his bronchosopy yesterday morning. they were unable to do a biopsy this time because there is infection in his upper airways. So they took some samples and sent them off for cultures so we can be sure we are getting him the right Abx for them.
He did really well following the procedure, and did not require O2. this was really wierd for me because for so many years every procedure he has ever had he was always on O2 for a while after. but he was satting at 97% on room air.
So they did not get to take the last two chest tubes out, in fact there was a slight pheumo thorax and they put them bac on suction but hopefully they will go back to water seal today and he will be one step closer to having them pulled.
Once the chest tubes are out he should be able to go home. they want to have a PICC line placed however so that he can get IV antibiotics for the next 2-3 weeks to kick this upper respiratory bug.
Once the PICC is place and chest tubes are pulled, and he is able to get off of the IV pain meds he can go home. Maybe Friday or Monday. It all depends.
anyway, thats about it. nothing much else happening.
Monday, February 9, 2009 8:22 AM, CST
We are on Day 7 post transplant. Garran is doing so well! Today the surgeons came in and said that after the bronchoscopy tomorrow morning they will look at taking the final two chest tubes out. If they cant get to it tomorrow then they will take them out Wednesday. And possibly by Friday he could be going home!
Yesterday he had a visit from some college students who were going around the ward dancing for the patients. He saw them as we did his second walk yesterday, and they were in the hall dancing for another patient. So, Garran being Garran, stopped in the middle of the hall and asked them to dance right there for him...lol...He was so happy. He said "Mom they made my day!"
Of coarse he also asked them for their autograph, and phone numbers. He was beeming with joy as they danced a second time just for him outside his room. And then he made them a valentines card. He talked about it all day.
Sicne he has been allowed to have his siblings to visit, he has had such a good outlook, and the depression that he was having in the PICU is not prevalent. They have always made him feel so much better when he is sick. Even if they are fighting, he has more spunk and joy when they are there.
Anyway, I will update when and if things change.
Sunday, February 8, 2009 9:42 AM, CST
He finally went! He can now drink! Adn tonight he can have a regular dinner! He is so happy! He has asked me to find him KFC Mashed potatoes and gravy. I think the closest KFC is about 30 miles from here,but if my baby wants KFC I will find it. :)
He is down to half a litre of O2 and his X ray looed really good, much of the fluid if draining from surgery, and he is doing great clinically. And now emotionally he is feeling fantastic!
Thank you Lord, this is such a blessng! I can noteven express how thankful we are, for everything, and his quick recovery is just an add on.
Well, I will be heading up to the hospital in a little while. Thank you again to everyone for all the prayers and warm thoughts.
Saturday, February 7, 2009 8:47 PM, CST
Two Chest Tubes down Two to go. He has gotten the NG Tube pulled as well.
He is doing well. He still s not able to eat yet, and now that the NG tube is out ice chips have been taken away as well. He is pretty sad. But soon, he will be able to eat and drink.
Anyway. Not much else going on besides that. I will update if anything changes.
Friday, February 6, 2009 9:13 PM, CST
Garran is now up in the CICC. The step down unit. He is very happy to be out of the ICU. they did not get a chance to take out the two chest tubes, but they plan to do it first thing in the morning.
Otherwise he is doing well, watching TV, and playing legos. He is happy that we are out of yellow gown land. for some reason that always makes him depressed. I guess he thinks maybe we are afraid to touch him. he always gets a scowl on his face when he sees the yellow gowns.
I am going home tonight, and i am going to go get something to eat. I forgot to eat yesterday. I know how do you forget to eat. well, I was trying to wait till he was asleep so he wouldnt be upset that I was eating and he couldnt, so I waited and then by the time he went to sleep, it was way late at night, and I just went to sleep myself. and today was pretty busy, so i didnt get a chance to go down and get something to eat today. But chris is coming up to stay the night and I am going to go get something to eat and go home and take a much needed shower.
hense the reason I am not in many of the pictures I post from here, I pretty much look like ick...lol
Garran is now playing his harmonica. And I am going to go hug him and tell him stories before I leave for the night.
Will update when my cable is turned on tomorrow....silly cable guys came today and didnt have the things they needed to set it up, so tomorrow it is.
g-night.
Friday, February 6, 2009 12:39 PM, CST
Today they are talking about taking two of his chest tubes out. He has four total. They have put them to water seal, and we are waiting for the surgeons to decide when they can do it.
Once this happens he can go up to the step down floor and is one step closer to home. He is doing wo well. Still no gas, but soon. :(
They also might be taking out the NG tube today, he will be happy for that.
Today he is talking about food alot! usually it is a struggle to get him to eat anything, but when you tell him he cant have anything, he wants it all the more.
We are watching Wall-E and he has been playing on his Dad's laptop this morning, along with the legos he brought him. He loves legos.
I will be going home for a few days and Chris will be staying up at the hospital.
Garran says that he misses his family, I cant wait to get to the other floor so the kids can come see him. That will boost his spirits more than anything.
When they take the tubes out I will update.
Thank you again to everyone.
Thursday, February 5, 2009 8:27 AM, CST
No farting yet. His little friend who is 8 said that there is a candy that is supposed to make you fart, so he is going to have his mom go to the store to look for it. Wouldnt that be a crazy idea...lol
He is doing well today. Trying to get used to coughing with his new lungs. He doesnt feel like he has to cough becuase they cut that nerve, but he does need to. He is getting chest PT right now. Nothing compared to the vest he used to get.
He has been walking 3 times a day. yesterday he walked a long way all the way to the other end of the ward, and stood in front of the kitchen. He wouldnt move for about 5 minutes, just stared at it...lol...
Today is a new day, and we are praying for a little gas (funny to pray for gas), so he can eat and drink... Poor kid keeps seeing commercials for food and drinks and starts crying. :(
Anyway, he has had the urine catheter removed, his arterial line removed, and yesterday they had him off of O2 for a while and he was satting at 100% still, but when he went for a walk we had to go back on 1 litre. which is a far cry from the 3-4 litres pre tx. He is clinging to it, tho. He is a little afraid not to have the O2. He has had it for over a year.
they are just waiting to remove the NG tube, and a couple chest tubes before they can send him to the step down unit. He cant go there with 4 chest tubes.
Otherwise he is doing fantastic. And yes I am sleeping. some. There is a recliner here in the room by the window, and I get some sleep when he sleeps. I will go home tonight and switch with Chris, poor guy is trying to move in at the house with a broken foot.
But so far Garrans meds are doing good, he isnt having any wierd side effects yet. He was cranky yesterday to his nurse, but mostly that was because he wants to eat and drink. He is s little depressed, which I am told is one side effect. I sat up last night and we told stories, that made his day, and he smiled alot.
Chris bought him a harmonica, and everytime I told a new part in the story he would play the harmonica. He said that the biggest difference he can feel so far, is that he can HOLD HIS BREATH. He couldnt do that before. He cant wait to go swimming. :)
I asked him what he was most grateful for, or excited about concerning his lungs. He said he was excited that he did not die. that just about broke my heart, he was so brave going into surgery, all the while the weight of that thought fully on his shoulder, and he laughed and played, and did everything to make us feel better. What a great kid, and wonderful role model to me.
Well, thats it so far today, I will update tonight after todays events.
Again, Thank you all for your prayers, and Thank you to his beautiful Donor family, without whom my baby would not be here. Please be sure to pray for them, for peace, and comfort during this time.
Victoria
Tuesday, February 3, 2009 10:49 PM, CST
Well, Garran walked three times today. Got up at 12 noon and walked about 50 steps around the halls, then at 3 pm got up again and went a little more than that, then at 9 pm got up again and walked even further!
He is one tough cookie! He is scnookered now, and is sleeping. He is down to 2 litres O2 and weining, hoping to be down to 1 litre by morning and maybe off O2 by tomorrow night. I am told that this is really fast, and most adults dont get off O2 and extubated for a few days. much less get up and walk around the ward as much as he has. I am so IMPRESSED with this little tough guy!
He is so strong and brave! I am sooo proud of him! His #'s are phenomenal! the last Blood Gas they did was PERFECT. He is satting at 100% still as they wein him off O2, his RR is still in the teens, his heart rate 110 or so. He is just doing sooooo goood!!!!!
Thank you LORD!!!!!!!!!!!
He still has not been able to eat or drink. His surgeon came in and told him to FART...lol...he cant eat til he does so. He has been trying very hard. Hense the walks. He is a stubborn kid, and really wants some apple juice...and soda....told the nurse he wanted 5 gallons on apple juice and some ice water. then some sprite, and later on some starbucks mocha with etra whipped creme. lol
He is a trip!
he also said that he needed to see spongebob jump off of a building in order to be able to go to the bathroom...lol..I think that was the morphine talking... He is so funny. Most of the day he has been cracking jokes when he isnt angry about drinking. When his Dad came up he was so happy, and beemed with joy!
Chris is staying here tomorrow night, I will go home and get a little rest. maybe.....
This is about it for now. I took some pics of him walking and will post them on facebook later on when I get a chance.
For those of you who are on the other CF sites with me can someone please post this for me on those sites, I am a bit tired, and just need to get some rest for now. Thanks.
Love Vik
Tuesday, February 3, 2009 10:35 AM, CST
He has been extubated! At 9:23 am . He is on 3 litres of O2 still but is satting at 100% and Resp Rate of 16! He cant have anything to drink or eat til he passes gas, he is not very happy about that. :(
The first thing he said when he got the tube out was "Hi Mommy!"
I cried!
He is going to be getting up to walk at noon, chest tubes and all. He isnt very happy about that but he has to.
He keeps saying ice water to everyone that comes in...poor thing.
Anyway, thats the news.
Vik
Tuesday, February 3, 2009 5:07 AM, CST
I am sitting here in Garran's room in the PICU. He is doing very well. They did a Bronchoscopy after Transplant and it looked terrific. He sounds sooooooo great! He still has the breathing tube which we knew would stay for a little bit, but that will come out tonight or tomorrow.
He has four chest tubes. two on each side. an IV in his right arm, and a central line in his juggular for blood gasses etc...He also has a tube in his nose to drain his stomach but that will come out soon.
He is such a brave boy. He is smiling in his sleep. Chris took the kids home to rest while I take the first shift here. I dont mind, I didnt want to leave him anyway.
thank you to everyone who has been praying, thinking about him. We know that without such he wouldnt be here to smile in his sleep today.
Giving all the praise to God.
thanking to fabulous team at UNC and their wonderful Transplant team and Surgeons Thank you Dr. H. We know this road has just begun and this is step one, but thank you for getting us through this door.
Thank you to the beautiful Donor Family, and their unbelievable gift. Without which Garran would not be breathing and sleeping peacefully. I am so sorry for your loss, and so thankful that you were able to give of yourselves in such a loving way. Thank you.
Tuesday, February 3, 2009 2:29 AM, CST
Just got a call from the OR and they said that he is looking great, and they are just about finished. They asked us to go to the other waiting room and wait, and the Dr. shoudl be out shortly to fill us in.
I will update when we go back and see him.
Monday, February 2, 2009 10:17 PM, CST
We got here at 2:30 this afternoon, and did all the pre op stuff, labs etc. Waited a bit and they brought him up to the pre op staging area. We prayed before leaving for the preop area, We waited there a while and they decided it was time, and gave him some versed and he got loopy and they took him back. At this time they werent ready, and brought him back out for a few more hours and we came back and hung out with him and played.
Garran went into surgery at 8:05 pm. He was happy and energetic. We played and he wrote all over us with skin markers. we have the pictures to prove it. He played with baloon gloves. and drew on his surgeons hands as well. WE all told him we loved him and hugged him and.
They gave him some more versed and he got a little loopy and they took him back.
We are waiting in the waiting room, I have my laptop and will try to get on the chat rooms sometime tonight.
He is such a tropper, and is so brave. Much braver than I.
Hard to type beyond these tears. So have to close for now.
Love Vik
Monday, February 2, 2009 11:47 AM, CST
GOT THE CALL!
have to be up at the hospital around 4. I will have my laptop and will update from the hospital when things change. or if things change.
He is very excited, we are a little nervous, scared, all of the above... :)
It is a new beginning.
Updates to come.
Wednesday, May 27, 2009
Sunday, January 11, 2009
Who is Grace?
I just couldnt resist blogging about this:
This morning I was singing with my daughter. She is practicing to audition for a school play, they are doing High School Musical. So, we were just singing some songs to get warmed up so she could rehearse what she had prepared for the audition.
Anyway. We were singing "Amazing Grace". And all though the song I notice this perplexed look on Kaits face. so when we are done, she looks at me and says with all true sincerity "Mom who is Grace?"
LOL!
Anyway. Things here are ok. Garran had an appointment at the Transplant center last Friday. He has gained some weight, and a little in height. He isnt eating more we just figured out a new way to do his feedings. Since we had an abundance of his old formula because they switched him to chocolate Carnation instant Breakfast 1.5. (they were no longer going to carry the just for kids 1.5)
So we do Just for Kids 1.5 at night 4 cans, and he drinks two cans of carnation with each meal, cause he actually likes it. He will eat a little bit here and there, but the feeds and the carnation are boosting his calories enough that he gained 2 pounds in one month!
He is still on Minocycline, and if that doesnt start to work on the bugs he has they will put him back on the Zyvox. he hates Zyvox it makes him nauseas.
Personally, it has been pretty quiet here. not a whole lot of calls. sometimes it is a little lonely. But I stay busy. Chris works second shift now so we dont see much of him. And I have an interview Monday for Tax season.
I finish my Accounting degree this semester. I should have been done in December, but they added a class to my plan. So I wont be done until May. But technically I am. I have completed all the required Accounting coursework for my Bachelors. this class is just a university requirement.
Is waiting really the hardest part? I dont know. we have been waiting now for almost 6 months. There have been some real hard patches. Times when he has asked some very hard questions. Things I didnt know the answer to. We have met alot of fantastic people, some that are no longer here. Some that we are very grateful to have with us and learn from still.
Anyway. Have a great day.
This morning I was singing with my daughter. She is practicing to audition for a school play, they are doing High School Musical. So, we were just singing some songs to get warmed up so she could rehearse what she had prepared for the audition.
Anyway. We were singing "Amazing Grace". And all though the song I notice this perplexed look on Kaits face. so when we are done, she looks at me and says with all true sincerity "Mom who is Grace?"
LOL!
Anyway. Things here are ok. Garran had an appointment at the Transplant center last Friday. He has gained some weight, and a little in height. He isnt eating more we just figured out a new way to do his feedings. Since we had an abundance of his old formula because they switched him to chocolate Carnation instant Breakfast 1.5. (they were no longer going to carry the just for kids 1.5)
So we do Just for Kids 1.5 at night 4 cans, and he drinks two cans of carnation with each meal, cause he actually likes it. He will eat a little bit here and there, but the feeds and the carnation are boosting his calories enough that he gained 2 pounds in one month!
He is still on Minocycline, and if that doesnt start to work on the bugs he has they will put him back on the Zyvox. he hates Zyvox it makes him nauseas.
Personally, it has been pretty quiet here. not a whole lot of calls. sometimes it is a little lonely. But I stay busy. Chris works second shift now so we dont see much of him. And I have an interview Monday for Tax season.
I finish my Accounting degree this semester. I should have been done in December, but they added a class to my plan. So I wont be done until May. But technically I am. I have completed all the required Accounting coursework for my Bachelors. this class is just a university requirement.
Is waiting really the hardest part? I dont know. we have been waiting now for almost 6 months. There have been some real hard patches. Times when he has asked some very hard questions. Things I didnt know the answer to. We have met alot of fantastic people, some that are no longer here. Some that we are very grateful to have with us and learn from still.
Anyway. Have a great day.
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.
:)
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 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!
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!
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.
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.
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.
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.
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