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Braydon had his annual pulminology check up yesterday. I feel like I need to write down my feelings of the pros and cons of this appointment - feel free to skip this post unless you really want to read on.
Braydon had his first pulminary function test (PFT) done during his TRP/VEPTR evaluation at age 5.5yrs old. He has maintained about a 50% total lung function percentage. This is 50% of normal - meaning there are many variables involved including wing span measurement instead of actual height, etc. 50% of normal kids his age.
Last year Braydon's lung function measured 47%. About "normal" for him - he's maintaining his lung function. With each VEPTR expansion, his lungs are keeping up with the minimal vertical and circumferential growth. Yesterday, his lung function was 42%. Again, there are so many variables. His wing span measured 150cms (about 59 inches) which is 6+ cms from the measurement last year. He's grown. His actual height hasn't grown quite that much, but he has grown. His actual height is 54 inches, which means because of the fusion and because of the curved spine, his torso is 5 inches compromised.
Another variable they look at is the amount of air expelled in one breath. Last year Braydon blew out 1.20 ltrs of air. Yesterday, he blew out 1.22 ltrs of air. The doc said that because of his significant growth, this number should have gone up - meaning he should be able to blow out more than 1.2 ltrs of air. Not enough change in the quantity of air blown out to match the growth he's had.
Now, with his latest VEPTR expansion (Dec. 27) he did NOT have his chestwall rod expanded. His chestwall was last expanded on May 31, 2007. Maybe this is a factor? The pulm. doc. wants to re-do PFTs in 6 months to see if he has any improvement or if this is going to be a slow pattern. Braydon may have an expansion before then, so maybe that will make a difference?
The other thoughts weighing heavy on my mind have to do with his endurance. He has ZERO endurance. Since his leg surgery last September, he fatigues easily, he doesn't run (he's re-learning the motion of actually running), he is not at all active like he was last summer before the surgery. We are hoping that the lung function measurements are because of his lack of endurance rather than structural. He's going to work on being more active. He has an appt with the PT next week. We'll discuss activities he can do to increase his endurance but not hurt his foot/ankle. Hopefully. The goal is to get him active again this spring and summer so by late August/Sept his PFTs will reflect a more accurate reading. If boosting his endurance doesn't help, I'm not sure what the next step in the "plan" will be. BTW, his oxygen sats are great - 97-98 always. So, his body is oxygenating well.
Braydon has never had pneumonia or any respiratory problems other than sinus congestion once in a while. Even then, not for several years. Braydon's lungs (tissues) are healthy. He has never needed supplemental oxygen at home. Another something I wonder is that because his body is growing and getting heavier, is gravity going to be an enemy? Is his body working harder at breathing because he is getting bigger/heavier? How much will this impact his ability to build up endurance?
Braydon wants to go back to school next fall (we've been doing homeschooling this year because of the trauma of the leg/foot surgeries). He wants to do 3 classes at school, then the rest at home. At this point, he wouldn't be able to tolerate 5 days a week, 3 hours a day. He just doesn't have that endurance at all. This week, for example, he did 3 hours of homeschooling. Then the next day he played with the basketball (shooting hoops) and a little ping pong. After that much physical activity, he was exhausted. Didn't eat dinner because he was too exhausted. Fell asleep an hour early and slept 12+ hours. Woke up feeling fatigued still. Didn't feel up to doing anything.
Another thought is hormones. He will be turning 13 in May. How much of the fatigue factor is hormones? I have 2 older children so I should know something about this, but I don't. Braydon (and all our kids) throw the teenage textbook out the window. He is still pre-prepubescent. However, we are seeing some signs of maturation. A very few. One of the signs is hormone-related migraines (controlled by maintenance meds daily). Another is the growth he's had this past year (not quite 2 inches but about 7+ pounds).
Maybe my problem is pre-menopause hormones... I've been thinking about this all day. Re-reading it seems like I'm anxious about this for not very good reasons. I don't know. I just know I hate seeing him this inactive and pale. He has zero color in his face most days. He's not anemic, all bloodwork looks good, etc. It's just a nagging UGH with me.
Location: Sterling, NY
I'm sorry I don't have experience on my side with the VEPTR issues and lung capacity but I can say this...
I ran for 4 years until I was 3 months pregnant with Chloe,4 miles 6 days a week, that and swam 3 times a week and cycled 6 miles every other day... wow, it was so, so easy. After cramping into my 3rd month, I stopped it all and started walking. After Chloe, walking 1.5 miles a day was exhausting... tried to run and my lungs burned after 1/2 mile... I have a girlfriend who is a national synchronized swimmer; she can swim 4 lengths of the 25 yard pool underwater with no breaths. All with training.
Lung capacity definitely changes. Braydon has had a difficult year. He needs to rebuild and slowly, speaking only of typical situations.
I think you hit it right on the nose with increasing activity slowly. He needs to rebuild. With that, comes increased blood flow and hence color, and more energy.
It's hard to recover from teh things he has had to go through.
I think you are right... so what about protein drinks? Maybe get him excited about weight training his arms? Protein gives energy but I know you will have to monitor protein intake with the renal issues? Just a thought. What about swimming at your local pool? So hard to say I think when spring comes the choices and motivation get easier with sunlight and grass.
Location: Orange County, CA
Just wanted to say I can feel your pain and frustration/uggg feeeling. Not knowing if something else should or could be done is very overwhelming. There is so much medically going on with all our kids that it just consumes us and every little off thing makes us want to help fix it even if we are doing the right thing now we want to have all the answers. I get this feeling alot with Cole and think, is there something I am missing? I think you are on the right track with slowly increasing his activities and most likely moving in the right direction-it just may be a slow process that you will just have to cope with. I think that Braydon wanting to start school next yr is a good sign even tho right now he is not ready. Strange to be trying to give you advice, the Mother of all the great advice! Hey, maybe I should tell you one of your great lines "take a deep breathe and breath breath" hehe
All will be fine and I bet it helped to get it out on here huh-I know it does me.
Oh and BTW-Cole is 53 inches in height so they are about the same height and Cole now reached 60 lbs-yippee! Cole started his puberty at around 12 yrs old, I bet Braydon is reaching that goal now too and who knows that could definitely be affecting some things.
|Hi Carmell, It definately makes sense that due to all of the trauma of the leg surgery and recovery that Braydon's endurance and energy level would be greatly affected. The fact that his oxygen sats are where there are is wonderful and a relief I know. Maybe he could have a work-out routine devised by a PT that he could do several times a week. The use of a treadmill or elliptical(sp?) machine or recumbent(sp?) bicycle could be something that perhaps he could do without any aggravation to his leg. I have a friend who has a son(age 4) with CP and he dreams of growing bigger and running faster. He is working with PT and swimming is something that is going to be added to this child's "workout". |
He'll be "extra" in my prayers.
Location: nixa mo
|Carmell, I have to agree that Braydon has been through so much this year. If I remember right he had pseudomonas and was on iv abx for a while after the leg surgery. That by itself takes a huge toll on the body. Then to have an expansion with anesthia a few months later another surgery to drag him down. Noah is almost 3 and already I'm worried about depression he told me how sad he was after his implant. I cried and cried wondering why I did this to him. He's back to himself now and I feel much better, but I just wonder if Braydon may have a little of the winter blah's and / or a little depression. I'm sure school would help a little with him able to be around his friends more, but I also understand a mothers worry. |
Braydon and your family will be in my thoughts and prayers.
Edited by Diane17 2008-02-21 9:25 PM
Location: Chittenden County Vermont
|Hi Carmell- I am not sure if I have anything to add but I know that Maggie's pulmonary function seems to get better the more she swims. Braydon has had a tough year it makes sense that his functioning would be reduced while he is recovering- on the other hand your mommy instinct needs to be heeded if you are sensing something is not right it needs to be pursued. Perimenopause does not cloud your mommy senses ( I am in it fullblown so I can totally relate). |
Location: Plymouth, Pennsylvania
BRAYDON HAS BEEN THRU SO MUCH...THE RE-TETHERING, AND LEG SURGERIES,
THE EXPANSIONS...HIS BODY HAS CERTAINLY HAD A "FULL CALENDAR" OF PROCEDURES, AND MY
THINKING IS, HE IS TIRED...HE NEEDS, AND I KNOW HE WILL GET STRONGER...
HE PROBABLY WANTS TO "GAG" WHEN HE HEARS THE WORD "THERAPY", AND I CAN'T SAY I BLAME HIM...
I WAS THINKING SWIMMING, BUT THEN BEING SOMEONE WHO HAS A BREATHING PROBLEM, THAT IS SOMETHING, UNLESS IT IS OUT DOORS...I JUST CAN'T BREATH IN THE INDOOR POOLS...
ONE OF THE BEST PROGRAMS I HAVE SEEN AROUND HERE, WOULD BE THE CARDIAC REHABILATATION...
BILL HAS USED IT, AND HE WAS MONITORED THRU IT ALL, AND HE WORKED AT HIS OWN SPEED, AND DID WHAT HIS BODY ALLOWED HIM TO DO, UNTIL, HE CAME BACK TO FULL SPEED...USED THE ROWING, THE LIFTING, AND WALKING MACHINES...
I WAS THINKIN, IF SOMETHING LIKE THIS COULD BE PUT INTO PLAY FOR BRAYDON...BUT THEN AS I AM TYPING THIS AGAIN I COME UP WITH "GAGGING ON THE WORD THERAPY"...
I KNOW THAT YOU MENTIONED GOLF AT ONE TIME CARMELL...
ANY INDOOR VERSIONS OF THAT THERE? SOMETHING HE CAN TRULY ENJOY INDOORS, BUT GET BENIFIT FROM ALL OF IT AT THE SAME TIME...?
THE PULUM. TEST...
ZOE HAS HAD THEM DONE, BUT SHE "IS NOT" GOOD AT THEM...
SHE ONLY WILL COOPERATE TO A POINT, THEN IT FRIGHTENS HER...
SO I AM NOT SURE HOW WELL HERS READS...
AND WE HAVE NEVER GOTTEN INTO NUMBERS UP IN BOSTON WITH HER DOCS...WE DO KNOW
HER BASE LINE SATS ARE 95-96, AND I HAVE EVEN SEEN HER GET IT TO READ 100, SO I CAN'T BE OF MUCH HELP...
WINTER MUST ALSO BE HARD ON BRAYDON AS WELL...I KNOW OUR WINTERS HERE ARE TUFF, AND YOURS ARE MUCH TUFFER...HORMONES, MIGHT ALSO BE AN ISSUE...MY KIDS COULD SLEEP THRU "THANKGIVING DINNER" IF I HAD LET THEM...THEY LOVED SLEEPING WHEN THEY WERE TEENS, ESP EARLY TEENS...
CARMELL I KNOW THIS IS A ISSUE THAT IS PROBABLY ONE OF THE HARDEST..."BREATHING"...
THIS IS THE GREATEST FEAR FOR US ALL, FROM THE BEGINNING...
YOU HAVE A REASON TO BE CONCERNED, BUT I THINK YOU HAVE ANSWERED ALOT OF YOUR OWN CONCERNS..."EXPANSION OF THE RIB TO RIB", LACK OF ENDURANCE...AND SO ON...
HANG IN THERE...I CAN TELL YOU THIS...
THESE ARE KIDDOS THAT DON'T EVER GIVE US MUCH REST...LOL...
|Carmell- Adam hasn't developed the slow down bug yet, but I know I have. I use to be a long distant runner and since the last 2 babies I haven't had the chance to run. I have started to run these last couple of months and I have no wind or lung capacity. But the more that I work, the better I get. Braydon has had a lot happen this last past year. I am no expert, but it seems like Braydon has the motivation to move mountains! I am sure in time with PT he will gain the energy he has had in the past. He has a great Mom! Hang in there! Thinking about you! Maryjane|
|I don't think you are being overly hormonal. Just staying on top of things because you know things can go south pretty quickly. You and Braydon do a great job of handling the challenges that he faces. We just had a conversation with Dr. Price about keeping those lungs going to get maximum growth. I would agree with you about the 13 year old hormone thing. Most 13 year olds that I know (I have one right now) are quite reflective and are changing in many ways. They seem to like to spend lots of time alone in their rooms doing who knows what That is just 13. You are right though about trying to keep him active. The winter seems to be going on and on and Eli seems to be getting her maximum lung function from knocking me out in boxing on the wii. She takes this quite seriously and if she doesn't win she cries like I've just run over her dog (crying is good for lung function also ). I hope Braydon's leg issues come along so that he can get back to enjoying the things he loves. |
You are at a stage in this game where it gets a little sticky. We also worry about Eli out growing her body. It is very scary, but you will find a way. It's these reality checks that cause me the most trouble also.
You do a great job and I know you will continue to find things that help Braydon.
Boy, that kid is handsome!
Location: St.Albert, Alberta, Canada
That boy has been through so much this last year it's no wonder his body can't catch up! I honestly believe, with time he will come around. He's a teenager...I remember wanting sleep for more than 12 hours at a time and even then waking up like I could sleep another few days.
A quote from my Dad who is a child Psychologist, "Almost all teen-agers, as they reach puberty, become walking zombies because they are getting far too little sleep". Meaning, even if they LOOK like they are getting enough sleep..sometimes they really aren't.
Could Braydon have mild depression? That could cause the lackluster issues..
(((hugs))) Deep breath...things will be ok..I promise
Location: Southern California
|Hey Carmell, |
Had some thoughts... Is Braydon on any type of daily inhaler??? I ask because Alex's pulmonologist started him on daily treatments of Xopenex (via inhaler) just this past November. (Xopenex is similar to Albuterol) Alex did a series of PFT's (pulm function tests) at our annual visit w/the doc... He did them twice. The second time was done after some "puffs"... His numbers and function improved by about 15 percent... Prior to the puffs, he was just below normal - but with the puffs it put him into normal range. As such, the doc suggested Alex use the inhaler daily -- as much as four times a day, but at least 2 times... Her theory being, "use it or loose it". She felt that in addition to some exercise, which helps endurance and strengthens the lungs -- the daily inhaler would help him open up and use more of his little lung branches (aveoli?) that he might not normally use... Over time, she suspects it will help his lungs develop more fully to their potential... I asked her if there were any adverse affects with using this for the long haul over his lifetime or growing years - and she felt there wasn't any significant concern, noting that many with severe respiratory illness use inhalers for many, many years with no significant problems... Anyway... Alex does two puffs, twice a day. And, if he plays sports or something, we try to have him use it beforehand -- which should help him breathe/recover easier...
Beyond that... I'm sure that Braydon's leg issues have slowed him down alot this year, despite his growth spurt -- and I can definitely imagine how this may be part of the reason you're seeing the low numbers... Its too much of a coincidence, don't you think? Esp when his blood work is good and his saturation is good... I think your thoughts of improving his endurance -- is a good one and I'm sure he'll be back to normal soon!
Edited by Wendy 2008-02-23 12:21 AM
Location: Vancouver, Canada
|Hey Carmell |
I read your post and am so sorry to hear that you're worried about Braydon - After reading about your thoughts in getting him active again, my first thought was swimming, as swimming can be a great way to exercise, gently and have fun too, but I'm not sure how that would affect his breathing?? especially in an indoor pool - those places can be hot and airless! Also, is he self-conscious? If so, do you have friends that have a pool he can hang out in? (In the summer tho, not now LOL)!!!!
I then read all the replies, and agree with them all LOL
Braydon has been thru so much in his little life, and way more than his fair share in the last year - His body needs to heal The fact that he is thinking positively about school is a sign that he's "on the mend".
Also at 13, I'm sure his body is changing.... he probably does need more rest/sleep as he grows, and more so for him to recoup from the last few months...
For us mums to watch and worry about our kids is so hard - Harder too when we just can't get rid of that UGH feeling.
Am sending you all lots of cyber hugs to you all
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