2hearts archive
Close WindowKaston
January 27, 2006 at 01:24 PM CST
We have a date!!!!
Kaston's cath & fenestration closure is scheduled for Thurs. March 30th! It's longer than we wanted to wait, but Dr. Zellers is a very busy man and it's the 1st date that worked out. ...We are still very excited to see the changes that this will bring to Kaston's body. Dr. Young & I & his nurses were talking the other day how cool it's gonna be to see 90's when we check his O2 instead of 60-70's! And we're hoping that the change will make him happier. He seems to be in a sour mood most days & is pretty cranky & irritable. It's hard to tell if it's just his age or his heart. I keep thinking back to before his Fontan & we were dealing with the same thing. He was just so cranky and threw fits non-stop. After the Fontan, he was a totally different kid. So, we're hoping to see some attitude changes this time as well! I can only imagine what this summer will hold! I'm gonna have to keep him on a leash, or get a shock collar for him!!!!! But seriously, it is going to be so awesome to see him playing non-stop & not having to rest so much & be a somewhat "normal" 3 year old. I guess that's what we want as heart parents, some normalcy on this crazy rollercoaster we ride. The ups are refreshing and allow us to anticipate what's coming up next, the downs are sometimes scary and give you an adrenaline rush so you can get thru the valley. But sometimes you just want it to slow down & go straight and be "normal"; whatever that is!
Please keep Kaston in your prayers for an uneventful Feb & March and that all goes well until then!
Many Blessings!
The Snyder'sJanuary 21, 2006
Kaston got through the flu just fine & ended up not having strep. No big deal - woo hoo!We went to Dallas on Thursday & spent the night & had his cardiology appointment with Dr. Zellers at Children's yesterday. It was really strange being there again, as when we left last time, we thought it would be our last visit there, ever! But, it was a wonderful appointment and "Dr. Ellers" was so patient and answered all of our questions and addressed all of our concerns regarding all that's been going on the last 3 mos. His O2 sats were about 82% on his finger and 76% on his toe (they don't ever do his toes at home). Also did a chest x-ray & EKG. During his echo (which was about an hour long; at home it's like 10 or 15 minutes) he fell asleep so the tech had an easy time and got all the info we needed.
Basically, Dr. Z wants to close up the fenestration from his Fontan. The procedure itself is minimally invasive (compared to open-heart) and will only require an overnight stay in the hospital. Basically, he will go in his groin via catheterization and will take a look around 1st and see if there's something else they didn't catch on the echo. If there's no other indications of problem areas, then he will put a patch over the fenestration and see how his heart reacts to it. If the pressures are good and his O2 reaches 95%, then it's finished. After being monitored overnight, he should get to go home the next day. If he isn't stable at 95%, then he will have to go in and remove the patch and we'll try it again at a later time, when he's a little bigger.
So, we are very hopeful that this will work and praying that there are no other issues when they go in. We have not yet set a date, but he wants it done no later than April, preferrably in Feb. So, we just need to look at our schedules & go from there. We will post again once we have a date.
I've learned that "mother's intuition" was given to us by God for a reason. Always listen to that little voice that says, "you know, something's just not right here."
Many Blessings!
JamieJanuary 14, 2006
"He has the flu and possibly strep." "What?! How is that possible - he had his flu shot and I am a psycho when it comes to germs & hand washing?!!?!" "It happens. We'll get the strep results back later."
My morning conversation with Kaston's pediatrician.I decided that I would take him in since he was running fever all night & got up to 104. We thought it was a reaction to his synagis vaccination (for RSV) he got yesterday, but it wasn't - he has the FLU! Poor guy - he is absolutely miserable. He did laugh a couple of times when he was on the pot and some - well - air - came out - both ends. No matter how awful he feels, he is always happy, even at 104 temp.
So, we're still planning on taking him to Children's on Friday. He should start feeling better within a couple of days & be over it by Friday. Just pray for no complications. He's never had the flu or strep, so we're not real sure how he's gonna react to it. He's "big, strong & tough" and will take his "deer huntin' medicine" and it will all be good.Many Blessings!
JamieDecember 22, 2005
Just a quick update to let everyone know that Kaston is to be at Children's in Dallas on Jan. 20 for a cardiac work-up. Not sure what all will be done testing wise, but Dr. Zellers (cath doc) wants to see him and see if we can't find out what's causing these lowered O2 levels & cyanosis.So, please keep Kaston in your prayers that we find the culprit of this dilemma and that it's an easy fix. Also, for him to stay free of infection and for a miraculous healing between now & then!
And....since I probably won't have time to post between now & Christmas, hope everyone has a truly wonderful Christmas and we pray many many blessings on each of your lives!
God Bless!
The Snyder'sDecember 3, 2005
Kaston has pretty much has had one thing or another for the last couple of months. But he is actually not on anything right now! (besides his heart meds, of course) So we're praying for him to stay healthy. We are still trying to figure out what is causing his cyanosis and lowered O2 sats. He was at 74% today (normal for him is 84%). His ped. received a call back from the doc in Dallas and it looks like we will be making a trip down there before too long to see what's going on. I'm praying that it's nothing and am really trying to stay positive!
edited from Care page
November 11, 2005 at 12:56 PM CST
Kaston is hanging on to this cough and there is no indication that he should be coughing. I took him back in Wednesday beacause he was getting worse. His ped. is stumped - he cannot figure the source of the cough and cyanosis, although he is treating him with breathing treatments and continuing with the Singulair to see if this will help. The cyanosis is progressively getting worse & the other day his palms were the color of his nail beds (has never happened before!) Kind of like a good mix of purple & blue, and not just a light tint. And his nurses freaked out when I took him in on Thursday because he was soooo purple. But, I think the breathing treatments are helping somewhat. He does pinken up, but he is still coughing - not as bad - and then, after a period of time, he's back to the same cyanotic color. So, his ped. is trying to treat him to the best of his ability and has placed a call directly to Dr. Zellers -the heart cath doc at Children's. Hopefully we'll get a call back sometime next week on what we should do.In the mean time, he'll get his 1st synagis vacc. (for RSV) next week and we're still praying for it to freeze here. I'm still holding on to the prayer that this is just allergies & it will improve with the weather.
So, with that said, please continue to keep him in your prayers.
November 04, 2005
I went ahead & took Kaston to the pediatrician today to check out this cough. He couldn't go to sleep last night because it got so bad. He pretty much conferred with the ped. card. & feels that he does have some minor allergy issues but that it seems to really be affecting his O2 sats and energy level pretty dramatically. He put him on Singulair to hopefully help him out until winter. He advised that if when winter rolls around and we don't see any improvements or if this cough hangs around, then we can call Children's to further evaluate. I asked if he thought having a pulse oximeter at home to moniter his O2 levels better would be a good idea. He said that because Kaston's heart rate and O2 levels change so dramatically and fluctuate so much, that it probably would cause us to stress out even more. And he figured insurance wouldn't approve one coming from him. He did say that if I could maybe find one on ebay, that he could use his FDA stuff to get it for me - to think about it. But, I looked & the good portable ones are all like $300.00, so I think I'll pass for now! I just gotta remember that he is a chameleon!I am feeling at ease about this decision & God has given me a peace about it. I have all the confidence in the world in his pediatrician and I know that if he feels that we're not seeing any progress when winter arrives, he will find answers for me. So, I guess the plan for now will be what I posted before; just wait & see.
I am praying for a hard freeze to hit very soon so I can have my little boy back to himself. It's so hard to see him sleeping all the time again and not wanting to play much. And it's finally hit me that this just may be how his life is going to be; many ups and downs & sickness & never a constant anything and ALWAYS watching for something to be wrong. I guess I had this picture in my mind that after his Fontan that he would just be a "normal" heart kid; yearly check-ups and no contact sports! I didn't think that I would have to be questioning so many things going on with him. And I didn't realize that just the smallest little anything would affect him so very much. I expected that before his surgeries, but for some reason, figured all that would go away after. That he would be "normal".
Such is the life of parent of a child with CHD.Thanks for listening and hoping that everyone has a wonderful blessed week-end.
Jamie
November 02, 2005
Just wanted to let everyone know what I'm thinkin' and how I'm gonna handle all this. First off, Kaston went to the dentist today for some work & his O2 was at 78% - great news - still not 84% though. Second, he's developed this cough - started Monday night & has progressively gotten worse. It's not a bad kinda cough that's constant or that really bothers him. SO - I think I'm gonna watch him for a couple of days. If he's not better by next week then I'll take him in to the ped. At that point I can ask some questions - kinda get a feel for what he has to say. Plus, I know that Dr. Young will stay on top of this and watch him VERY closely. He treats him aggressively and has a personal interest in pediatric cardiology & has actually been in the operating room with Dr. Nikaidoh, Kaston's surgeon. So, I tend to usually trust him a little more than the p.c. since he knows him better and we see him so often (I was kidding with someone the other day that there's some weeks I see him more than I see my husband!) I'm also going to request that I get a pulse oximter to have at home (for my own sanity!) but to be able to tell where he's at when his color is off and just chart it so I can have something to go by. I'm thinkin' I'm just going to watch him very closely for now and wait until we get some good hard freezes that kills all the allergens and see if he improves. If he does improve, we will know that it's just those seasonal allergies-and then I can eat crow & get on with my life! If there is no improvement with an acceptable amount of time, or if it worsens, then I'll be making some calls and getting this thing taken care of on my own.I guess the issue I have with getting another opinion just right now is that I would have to call Children's in Dallas (6 hours away-it's the closest cardiologist to us) and they really can't make a diagnosis over the phone and I'm sure they would agree that at this point, he's not bad enough to justify making a trip down there. They basically already have the information that the p.c. has here and would confer with him anyways because of his affiliation with Children's. So, I guess for now, it's the wait & see game that we're all so familiar with! Praying for some cold cold weather to come our way!
And thank you so very much for all the words of encouragement and advice that so many of you have left. You have no idea how much it means to me to have people thinking and praying about this with me. I think I have been more distraught the last week than I have since we found out he had heart problems! His surgeries didn't even make me this stressed out! Anyways, all I can say is thanks for putting up with me right now and listening to me be a whiny-butt, but as I ALWAYS say, better safe than sorry!
Many Blessings to you all!
JamieNovember 01, 2005
Well, I'm feeling a bit frustrated right now - so bear with me! Did the usual chest x-ray & EKG, all which came back fine. O2 was at 72%. Liver is normal size and he's not retaining any fluid. Feels that echo showed nothing unusual and everything looks fine. Says that he is probably just dealing with seasonal allergies?! WHAT? So, I guess that's good news. Don't get me wrong, I don't want anything to be wrong with him and allergies is definately something that is manageable. However, I haven't seen any signs of allergies for a while and he isn't having a problem with them today. So, I'm just wandering how he's figuring it's allergies and how it's possible to bring his O2 level down THAT MUCH.My parental, motherly instict tells me seasonal allergies can't be it and I have so many questions that can't be answered. The advise given is that Fontan kids fluctuate a lot in their cyanosis and O2 levels, even that much (so why is it just now happening and hasn't before now?). I'VE NEVER HEARD THIS BEFORE FROM ANYONE!!!!! I guess the frustration is, as a parent, you want the best life for your child. As a heart parent, you want the best QUALITY of life for your child and I see no improvement, which the Fontan was promised to bring (his O2 was higher pre-Fontan than it is now!) All I see is an increased struggle and a DECREASE in the quality of life for him. I don't know if I'm having a hard time accepting that this is just him and what life has dealt him, but most of me, that parental instict, feels that there's gotta be more that we can do for him to improve his O2 level and his quality of life. I'm of the opinion that there's always room for improvement and feel that Kaston's just not getting the chance that he deserves to have the best life he can, despite his differences. And maybe I'm wrong. Maybe it is allergies. But how can his pediatrican, that sees him 1-6 times a month, miss an all of the sudden allergy problem? Anyways, so many more questions....
I still have so much to be thankful for; I shouldn't be complaining about his quality of life, at least he's still alive, right? And I'm willing to do anything I can for him to give him the best quality of life he's capable of having - whatever it takes.
I'm open to any words of encouragement or suggestions about what to do and any comparisons to other Fontan kids is much appreciated. I have searched & searched & searched on the internet about post Fontan outcomes and the norm or average; there's NOTHING. The only information is from us parents sticking together & talking about what our kids have gone through and making our own comparisons.
He goes back in 6 mos. Just please please pray that his ped. card. is right about this and he's not missing something. I would rather me be wrong than him.
Jamie
55 October 31, 2005
I've been debating on posting or not for the last couple of days, but we really need some prayer for Kaston. I started noticing about a month ago that Kaston's color was just not what it usually is but just kinda ignored it - not wanting to see into things. His nail beds & lips have continued to worsen and last week he started getting that grey ash color that is all too familiar. I finally mentioned something to Bob about it and even he saw the difference. He's been sleeping alot more and when he does sleep, it's like he's been put under - there's no waking him until he's ready to wake up - Bob carried him around Wal-Greens the other day & he never even stirred; basically a rag-doll. Also, he just has no energy and is getting out of breath way to quick. And, he's been sweating as he falls asleep. SO - with that said, we figured it was better safe than sorry to take him in to his pediatrician to see what's up. His nurses immediately commented on his color (I told them he looked normal to me) and checked his O2 level. It was at 68!!!! He normally runs mid 80's. So, after examining him from head to toe & listening extensively, the doc feels that this is definately heart related and need get this taken care of ASAP. We go see Luckstead (ped. card.) tomorrow at 10:30 to see what's going on. I'm sure he'll be doing an echo & hoping that we'll see something there that is causing this. We're just praying that this is something that can be treated with maybe an increase in the meds he's already on or adding something else to help with function.I've never heard of any other kids having such a drop in O2 this far out from the Fontan (14 mos. post op) but am anxious to hear from anyone that has heard of this occuring.
Anyways, please just keep us in your prayers. Bob & I are a little nervous about this and we've handled previous stress really well. But this is totally not anything that is expected(we knew he was supposed to go into failure before & that the Glenn & Fontan were imminant). Tonight deems to be a very long night! I'll post as soon as we know something.
Many Blessings!
The Snyder'sSeptember 16, 2005
Kaston's doing great & doesn't go back to the cardiologist until Dec. We're going to try & get him approved for the synagis(RSV) vaccination again and I'm just praying for an uneventful fall & winter. We'll see how that goes with us going to mom's day out & gymnastics on a trial basis. Oh, and about the infection we thought he had (from the last post), it ended up being a viral thing and he ran fever for about 5 days straight and had a head to toe rash. Luckily, it was not the scrape on his back that was infected! Woo Hoo! We just kept him as comfortable as possible and drugged him to manage the fever. But he bounced right back to his happy little self, as usual!
August 27, 2005Running fever all day (103 - not good) but nothing else. VERY CRANKY. Only thing I could figure was he fell down the steps Tues & got a big scrape on his back (4 1/2 inches!) but not really deep & I've been keeping triple A on it since. But, it was kinda red today & he was complaining about it. So, to the doc, as usual. He had a red throat so he checked him for strep - negative. Doc says he was really hoping it was strep, because if not, scrape is probably culprit of fever (not good). So hopefully the CBC will show something for us to figure what it might be. So, he gave him big fat antibiotic injection and a 10 day oral amox-clav & wants me call the next 3 days to report back progress. If he gets ANY worse, bring him in immediately. So, just please keep him in your prayers that this doesn't get in his blood stream and get to his heart (not good - see a pattern!) if this is actually the problem.
We are getting a team together for the American Heart Association's Heart Walk for Oct. 1. Our team is Kaston's Lane and our goal is to have 15 members & raise $1,000. Also, I am hoping to solicit some people to help start this area CHD support group and raise awareness for CHD (and walk in honor of Kaston being a survivor and in memory of all the heart angels). So far, I have 1 mom that wants to help get the support group going & she happens to be on the board of the AHA - so that's great news. I can see God moving in this even more & am really excited to get this going! Anyways, if you want to participate in the walk or donate to our team, we would love for you to visit our AHA webpage at:
http://heartwalk.kintera.org/faf/r.asp?t=12&i=93664&g=1074596
Take care & God Bless!
JamieJune 13, 2005
Kaston's doing good health wise. It simply amazes everyone how well he keeps up with the other kids and he just keeps going & going. Bob & I can see some differences, like breathing & resting periods & just not being able to run very far, but it's just because we're looking for it. I guess the only noticable thing to other people is his blue fingers & toes. Most everone makes comments on his coloring & some kinda over react, but we just shrug & say that's just Kaston! Heart wise he seems to be doing great and he hasn't been sick for a while now (knock on wood) thanks to the warm weather. Just pray for the summer to last as long as possible!
There are lots of heart kids having big surgeries & procedures right now (due to the warmer weather) so just keep them all in your prayers. God knows their names! He will be taking some of them home, so keep those families in your prayers as well. It seems as if every day I read about another child's heart tiring out. Just know that these children will never be forgotten and that we thank you for giving us the opportunity to "know" your precious children through these carepages.
Hope everyone continues to have a wonderful & blessed summer!
God Bless!
The SnydersMay 13, 2005
Awesome Cardiology Appointment last Thursday (May 5)!!!!!Kaston saw Dr. Luckstead and everything looked great! They did the usual, BP, height & weight (he gained back the 2 lbs. he lost! - so, back at a whopping 27 lbs!) His EKG looked great and he took him off of one of his doses of lasix! WOO HOO!!!! We eliminated the night time dose, so at least he's not soaking his bed every night! He pretty much indicated that what he's on now he'll be on indefinitely (lasix 1x daily, baby aspirin 1x daily, enalapril 2x daily for blood pressure).
I also asked him about the closure of the fenestration from the Fontan and he didn't seem too concerned & didn't feel that it would ever be a problem, whether it stayed opened or ever closed. Also asked him about stuff I've heard & read about heart, lung, liver transplants and he said, yeah, maybe when he's 40!! Pretty much just like every thing else; let's not worry about what might not happen; deal with it if something comes up; live life as normal as possible. And....we don't have to go back for a whole 6 months!!!! Yet another WOO HOO!!!! This will be the longest we've ever gone without seeing him! He told me that we could try a gymnastics class & hopefully start pre-school in the fall. He just indicated to be prepared for him to be sick more often than not and he'll just not be able to go if it becomes too much for him. So I guess we'll just have to see how it goes.
Hope everyone enjoys their summer vacation, I know we will! As Korah always says, "It's lakin' time, bebe!"
God Bless!
The Snyder'sMarch 31, 2005
Kaston is doing well. We're still just trying to keep him well. He had a small eye infection for a couple of weeks, but eye drops cleared that up. And of course, he still has the nose thing. Everyone's heard the expression "snot nosed kid". Well I have one! There's always something coming out of that thing! So, he was on a antibiotic treatment last week and it's already back with a vengence! I'm thinking I'll probably take him in to the ped. again tomorrow just to get this cleared up before it becomes a problem and I guess I'll just keep those kleenexes handy because he has figured out that he can blow his nose into his hands without a kleenex!
Keep praying for all the heart families out there. So much goes on that no one ever knows about. We just thank God every day for allowing Kaston to have such a good, healthy life and providing healing for him and allowing us to have the opportunity to be his (and Korah's) parents for the short time that we are here.
February 09, 2005
Kaston’s kept me pretty busy the last month. He had some blood work done at the first of Jan. It just seemed like he was so tired all the time and just sad. He was pretty withdrawn and just not really himself. So Dr. Young did some labs to check his potassium levels and other things that I can’t remember right now, but they all came back just fine. So that was a real relief. I guess he was just having a few bad weeks. ..... He was on breathing treatments twice a day for 10 days a couple of weeks ago. They thought he had RSV but it’s just a viral thing going around that presents itself like RSV. Pretty much the same symptoms, just not as severe I guess. He does real good with them the first 2 minutes then he’s done. So it’s been a fight to get him through them. He’s still somewhat congested, but his chest is clear.
He had his ped cardiology visit Thursday. Did the usual blood pressure check, height, weight (he’s still at 25 lbs - been that since Sept!) temp, O2 is still at low 80’s. Luckstead is still beating it into my head that he will NEVER BE 90%!!!! His physiology make up will not allow him to be at 90%, even if he has had his Fontan. Some kids just don’t get that high! So, I’m still trying to accept that. Chest X-ray was clear and his EKG was good. Wanted to bring him completely off his digoxin, so he wanted to look at heart function first. His ECHO was good and didn’t see any reason to keep him on the DIG. So he’s still on both daily doses of lasix and enalapril and of course the aspirin. He did so good for all of his tests and didn’t once cry! I was so proud of him! He was singing and just talking away during his ECHO. The tech was sure getting a kick out of him! He had his feet crossed and his arms behind his head and was just having a grand ole time! We go back in 3 months to hopefully start weaning him off the lasix. Then maybe I can get him fully potty trained!
.... Speaking of getting him out more, we’re still under “house arrest” because they just really want him to stay healthy through the rest of the winter & spring. There’s so much stuff going around right now and the hospitals are full of kids, so Dr. Luckstead reminded me, once again, to keep him in as much as possible. Oh how we’re ready for spring to be here! No more synagis and finally it will be time to start heading to the lake again! ...........
Take care & God Bless!
The Snyder'sDecember 19, 2004 edited from Care page
....I basically just asked her the reason for his O2 being at 80% and was it a concern. She said that with the type of procedure he had, the Fenestrated Fontan, that the "fenestration" or hole in the baffle, will eventually close up and he should have higher O2 levels (the hole is put there as a pop off for pressure until the body adjusts to the extra flow) It could take another 6 months for the hole to close up; could be next week. Also, we are about 3,000 feet higher than Dallas in elevation, and that plays a little part in decreased O2 levels from when we left there. She saw no reason for concern and said that she predicted he would maybe be around 85-89% eventually. Again, each kid is different. The sleeping part is just normal. She said most heart healthy 2 year olds should be getting about the same amount of sleep he is. I guess most kids are probably sleep deprived!
She discussed the long term affects of cyanosis from what she has learned, but says that it just depends who you talk to and how you interpret the information. Some suggest that there may be a possibility of having a lower IQ (maybe by just a few points), but it's hard to determine if it's from long term cyanosis or just from other factors, but really nothing to be concerned about. Also, it seems as if there's a higher possibility of them have ADD or ADHD, but again, that could be from the fact that alot of parents tend to go easier on heart kids - so really nothing of concern.Other than that, she felt that Kaston was right where he needs to be and that he should continue to improve with time.......
Kaston finally is getting caught up with his vaccinations. He got 5 last week and gets 4 more this week! Then he goes back mid-Feb to ped card and will continue with synagis vaccinations monthly until April. Korah was able to get the flu shot because of Kaston being high risk. She would rather have not had one, but we at least didn't have to chase her around the room this time!
We're having fun with the kids during the holidays. Every time Kaston sees a Christmas tree or lights on a house he says, "Hissmas ights!" He's done real good about leaving the packages alone, but likes to bring me his Elmo ornament from the tree. Korah's anxious about Christmas morning and can't wait to see what Santa brings.
Hopefully this will be our last post for a while! We hope that everyone has a truly blessed Christmas and a safe and happy New Year!
God Bless!
The Snyder's
The Snyder's
December 05, 2004 edited from Care pageWe really didn't want to have to post this soon, but we are needing some prayer for Kaston. Nothing that's really serious, but can be a big issue if not watched closely. For about the last 3-4 weeks, he's had a bit of a runny nose, but with no other problems; no fever, no irritability, no changes at all. So, we decided to just let it run it's course. Well, he started coughing last week and I figured I'd better go ahead and take him in 3 days before his 2 year well-visit. Needless to say, I got a very polite 'you know better than to wait' from Dr. Young. He reminded me that the flu and RSV can kill these kids much quicker than others and that got my attention. I do know better, but sometimes you just want yours to be like the other kids! Anyways, his chest was clear, but he's got Strep Pneumo in his nose and is on a high dose, nasty smellin', antibiotic that he takes 4 times a day. Of course, this ends up in the dreaded diarreah episodes. So, right now, we're trying to keep him hydrated, which is not so easy when there's more going out than in!
Also, now that we're almost 3 months post-op, Bob & I have kind of re-evaluated Kaston pre-surgery and post-surgery condition. We realize that it sometimes does take a while to get readjusted to new plumbing, but we just want to know what's going on. I've posted earlier about our concern with his sleeping. We figured he would eventually not have to sleep 15 hours a day, but still is. Also, we've noticed his color was improved once we got home, but within the last month & 1/2 he has been back to pre-surgery color, meaning lower oxygen levels.
Our expectations were to have him be running around more like a normal 2 year old, but he doesn't. Occasionaly, he will walk really fast, but still doesn't run. He does climb more, but not even close to what he did pre-surgery. And he just hasn't improved much on his stamina. And you would think that after having this last surgery that his quality of life would improve somewhat. It's hard to see your kid go through so much just to be back where he was in the first place, or even worse. Maybe our expectations of him are too high. And maybe this is just part of the laid-back Snyder personality that runs in the family! So, we have many questions for the docs at the next visits (pediatricain on 15th & ped. card. on the 9th) and we just ask that you say an extra prayer for our little guy!
I'm hoping that maybe some of this is just due to the fact that he's been sick, so we'll just have to pray that we get some answers this week! Hope everyone is doing well throughout the Christmas Season!
God Bless!
November 22, 2004 edited from Care page
HAPPY 2nd BIRTHDAY KASTON!!!!
Wow! It’s so hard to believe that 2 years ago, Kaston was finally here and our world was dramatically changed forever! What an amazing journey it has been! Thank you God for allowing us to be parents of this wonderful little boy.
We are having a birthday party for Kaston today at Pizza Planet. It’s the only place we could think of that we could invite a few kids and not be exposed to so many germs. (I know, I sound like an obsessive compulsive!) We thought about having it here at home, but I don’t want all those GERMS being on Kaston’s toys at home, plus Pizza Planet has the best pizza in town!!! So, we’ve invited all the cops kids from Bob’s squad and a few other friends, along with NEMO to help celebrate this little boy’s amazing 2 years on earth! He’ll get to have another party on Thanksgiving day with family since we will all be together.
As far as his health is, he’s doing exceptionally well! He had his first synagis vaccination (for RSV) this season last Thursday and he goes back to Dr. Young (ped.) for his 2 year check up on Dec. 2 and to Dr. Luckstead (P.C.) in mid-Dec. He is talking up a storm and has so much energy. He runs around everywhere and is starting to climb a bit more, like before his surgery. It was so good to see him sitting on my dining room table again! He’s still sleeping about the same as before his surgery; 12 hours at night and about a 2-3 hour nap in the afternoon. So, I’m gonna ask Luckstead if this is normal next time we go in. He still has a light blue tint to him, but I think that will just be his natural color from now on. His hands & feet get a little darker at times, but they aren’t near as cold as before. His chest and belly looks really good and the scars are starting to lighten up some and smooth out. And he’s not had any illnesses since the last infection right after we got home from Dallas. So that’s a very positive note. Just pray that we continue on that path for the long winter ahead!
We’ve been trying, little by little, to potty-train him. I think he’s too young just yet, but he has every indication that he’s ready (and Dr. Young says go for it!) He goes at least 8 times every day on his potty and always goes before he takes a bath on the big potty! He tells us every time he is dirty and tells us most of the time when he is wet. The mornings and at bed time are tough because of the lasix he takes makes him pee so much. He looks so cute in his little Nemo and Bob the Builder “unnerweer”! His legs are so dang skinny that they just hang on him. I’m sure you guys don’t much care about potting training, but this is a huge step for this little guy! He’s just got the best little personality and is really a good little boy. He makes us all laugh so much with the little things that he says and does. Everytime I tell him to do something or not do something, his response is, “Ohhhh tay!” He and Korah get along really well and love playing together. Korah is such a good helper for me and really tries her hardest to be the best big sister she can be. They are very affectionate of one another and Kaston is always wanting her to hold him and give her hugs. He tells her, “wuv ou” all the time. And whatever she’s doing, he copies. He loves to dance to the Wiggles and sing on Korah’s karaoke machine. It’s so fun to watch them together!
Kaston and some of his heart buddies are featured in a Saving Little Hearts calendar. His picture is in November. All proceeds go to helping raise awareness of CHD's. Calendars can be purchased online at: http://www.cafepress.com/slh. Also, heart parents with carepages, there is a new way to help spread the awareness of CHD's. You can place your carepage name and child's defects at www.savinglittlehearts.com under the SLH community section, carepage category.
Also, Kaston’s little heart buddy, Hannah (HLHS), whom we met while in Dallas and requested prayer for her, is finally home and doing wonderfully. Her mom, Amanda, set up a carepage for her: hannaholiviacollie.I hope when Kaston is old enough to understand everything that he’s been through and reads all the messages left for him (and us!), he’ll be blessed all over again knowing that so many people prayed for him and shared his story with others. Hope everyone has a wonderful Thanksgiving!
God Bless!
The Snyder’sOctober 4,2004 edited from Care page
Kaston has a staff infection in his nose (probably because he won't keep his finger out of it!); basically the same thing he gets about once a month. He's on a 10 day anitbiotic treatment for that. I guess I misunderstood about the blood results. They have to let the culture grow for 7 days to figure out what strain it is & how best to treat it. The wound site is looking better, but the skin around it is still a bit red. He pulled his remaining 2 steri-strips off last night. I guess he just figured he was tired of them and told his daddy "I did it!" So we just put some butterfly closures on it for now, just to make sure that if he hits it or falls that it doesn't get busted open. It's pretty much grown together, but there's one area that looks like it needs a little reinforcement. Right now, he's eating his sister's pudding with a fork and dancing around to the karaoke music. Earlier he & Korah were playing in the rain and puddles. And then we watched a beautiful rainbow appear. Only God can make things happen at the perfect time at the perfect place.Cya
The Snyder'sOctober 3, 2004 edited from Care pageSaw Dr. Young again today. Got a reduced mG antibiotic shot and still waiting for cultures. Will call office in am to get results (yea! no more shots!) and prescription for 10 day treatment. Doesn't think it's sepsis, but has to rule it out. If it is, will be placed on IV antibiotics at home.More tomorrow!
October 2, 2004 edited from Care page
Quick update...
Last night when we changed Kaston's band-aid from where his chest tubes were, it smelled and the scabs were moist (I know, gross!) Dr. Young said it could possibly be cellulitis, basically skin infection that hasn't yet entered into the blood stream, causing sepsis. Still has a possibility of having a nose infection. As soon as cultures come back (hopefully tomorrow, probably Monday) he'll know exactly what to treat it with. So, another antibiotic shot today and go back in tomorrow. He's pretty cranky today and doesn't want to walk because his leg is sore from having 2 shots in the same leg (he's had 3 in the last 3 days!) We're controlling the fever still and the highest it's been in the last 24 hours is 101.7. So his heart is getting some rest from that.As Kaston always says, "c-ya!"
October 1, 2004 edited from Care pageAnother Prayer Request for Kaston! ..... Started running a fever for again and it spiked to 103.7 this morning at 1:15am. Was close to taking him to the emergency room, but very hesitant since there's so much sickness at a county ER...... We're hoping that it's just a nose infection (since he gets them all the time) but we have to treat it very aggressivly.......There's such a high risk of infection around his heart right now and just pray that's not the case. .... We are trying our best to keep him out of the hospital for now - he's very close to being admitted. ....
Right now he acts like he feels OK and is his same sweet little self.
God Bless!
The Snyder's
Sept 27, 2004Kaston is home and making remarkable progress. see his CarepageSept 18, 2004Kaston is making wonderful progress. You can get updates on his CarepageYou will be asked to register.
Sept 13, 2004 (edited from Carepage)Long day, good day!!! Sorry we're just now posting, but there's no where to plug in at the hospital so we're just now getting supper and getting plugged back in. Everything went extremely well today, needless to say. Dr. Nikaidoh had the chaplain come pray with us before they took him to the OR and he held hands with Kaston! Very impressive for a man of his stature. They took him in at about 7:45am - thanks for all the prayers that began at 7:30! It helped. They called about 6 times during the surgery and was out at around 1:20. Dr. Nikaidoh said everything looked as perfect as it could get and no complications. We saw him for about 15 seconds when they rolled him to his room (cardiac ICU) and it took about an hour to get him cleaned up & plugged in. He's got 2 chest tubes, a foley in his pee-pee, an arterial line and IV in his left hand, IV in foot, central line by his collar bone, and his ventilator. He's doing very well on the vent and he's it's down to about 8 breaths per minute, so basically he's doing all of it on his own. This coming off of about 24 breaths per minute. Hopefully he'll be off the vent when we get back after shift change. Should be in ICU for a couple of days. Chest tube drainage is a small amount (good). So let's just keep praying for good advances!He looks very good and is sooooo pink! And his feet aren't cold anymore! His O2 level is at around 84-86 (coming from 74-75). He's of course on lots of meds for pain and gets it quite frequent. But I think he's more frustrated at the vent than anything. It's hard when he wakes up and looks around, like "help" and he's got these huge alligator tears, but we just give him his "Bassil" puppy and he rubs his floppy ears and they get him his drugs & it's all good!Tomorrow promises to be a good day and we'll update everyone when we can. I'll post a couple of pictures now & the rest probably tonight when I come back. Bob's staying tonight at the hospital and I'll stay tomorrow because he'll be more alert, and everyone knows how he's such a mama's boy! Thanks for all the prayers today; the good Lord knows it helped!God Bless!
The Snyder'sSept 11, 2004 (edited from Carepage)Just wanted to let everyone know about Kaston's recovery after his cath. Bob just kinda touched the surface last night. We had a very long day yesterday! They gave him some of the silly juice (verset) and he thought everything was soooo funny! He went in about 9:15 & got out around 11:00. He was pretty mad in recovery and he started bleeding from his groin area because he was trying to move around too much, although he was restrained. He lost enough to change his sheets. But it wasn't too bad. They just gave him about 3 doses of phentinol(sp?) - kinda like morphine but it kicks in quicker, just doesn't last as long. He was in recovery for about 3 hours and then was moved to the extended care area. He was pretty fussy at first, but he finally calmed down and was able to drink and eat. He had 4 juice boxes and some chocolate pudding. He received an echo for the chest tube study and was really relaxed. It seems to always calm him down & I'm sure the techs appreciate it. We left the hospital about 3:45 and he slept the rest of the afternoon. He was pretty fussy when he woke up and didn't want to walk or move his neck but I imagine he was quite sore. The cath was inserted in his neck to access the previous shunt and also through the groin area to the ventricle. He's pretty bruised in his groin area and at times grabs it and says "owie". His neck looks worse than it really is because the band-aid ripped part of his skin off. It's just a little bruised.He's had a really good day today, eating well and playing around. ...... We have to be at CMC at 6:30am Monday. Surgery is to start at 7:30 & he should be out by 1:30. Said to expect to be in ICU for about 24-48 hours. He has a higher risk of having another collapsed lung, since it happened with his last surgery, and that could keep him in ICU longer. So we'll just pray the good Lord keeps it clear and open and he can move to the floor sooner, rather than later! He should be on the floor for about 2-3 weeks. They have a lot of drainage (2 chest tubes) & it just depends on how he does with that.It helps knowing we have such a wonderful support system. It means so much! Please feel free to email us if you have any questions. We have nothing else to do for the next day & 1/2!Take Care & God Bless!
The Snyder'sSept 10, 2004Well the cath is over and it went very well. Dr.Zellers, who did the cath, said if he had to pick a perfect patient for the fontan surgery that Kaston is it. He said all of his pressures were perfect, and there is no reason not to go ahead with the surgery. No more doctors or pokes untill Monday morning at 0630. We were asked if Kaston could be in two studies and we said he could. The first is a study on asprin resistance on children with heart disease, and the second is a study on the drainage of his chest tubes after the fontan surgery. We will update again later. Keep the prayers comming!!August 27, 2004Still on for leaving 9-9-04, cath & pre-op on 9-10 and surgery 9-13-04. Will give times & info later on.
Take Care & God Bless!
Jamie
August 11 , 2004UNBELIEVABLE!!!
Kaston has an upper respiratory infection (developed from allergies). They have had to place him on a 10 day antibiotic. So, what that means is.....they've had to yet again reschedule his cath & surgery! He has to be off of antibiotics at least 14 days before surgery. So, we will be heading to Dallas on Sept 9, cath on Sept 10 & surgery on Sept 13.Once again we find ourselves in the "hurry up & wait" mode & God is teaching us to have patience once again! We're planners & this, once again, was not in our "plan". Korah is delighted, needless to say. Everything happens for a reason and it's better to let his little body have a rest after this infection before we go & put him under major trauma. Better safe than sorry....Thanks for all the prayers & support.
God Bless!
The Snyder'sJuly 19, 2004Kaston had a cardiology appointment last Tuesday. Did the usual EKG & Chest x-ray. Dr. Luckstead listed for a long time & had quite a long discussion. Kaston is doing very well. No changes thus far. Most changes we see at home are still the usual; bad color, poor appetite (weighs 24 lbs - not really too bad for heart kid), fatigue. He slept 20 hours out of 24 the other day! Most days are between 16-18 hours. I find myself checking on him lots! He gets very irritable at times; I think it's just the fatigue though. He so wants to play all the time. We discussed in depth Kaston's future physical activity and participation in sports. Also touched a little on surgery info. Dr. Noubani, Kaston's other cardiologist, is leaving soon. We'll sure miss him and his thick Lebanese accent!
Still on target for surgery on Aug. 23. We will be leaving for Dallas on Wed. Aug. 18 (2 days after Korah starts Kindergarten!) Cath. scheduled for 19th, pre-op 20th & surgery 23rd (7:30 am - 1st case). We will be staying at Studio 6, an extended stay hotel. We're still expecting to be there for about a month total. (5 days before surgery & 2-4 weeks after).
Prayer requests:
**good health for Kaston
**smooth transition to Kindergarten for Korah
**peace and understanding for Korah while we're away
**reassurance & perseverance for mom & dad
Let you know more next month!
Thanks & God Bless!
The Snyder
June 21 , 2004Just wanted to let everyone know that the date of Kaston's surgery has changed. I guess there's a couple of other kids that are a bit more critical than Kaston & so they've bumped him out to August now.He's currently scheduled to have his heart cath with Dr. Zellers on August 19, pre-op on August 20 and surgery with Dr. Nikaidoh on August 23.Kaston is still doing very well. He's been on an antibiotic for yet another bacterial infection in his nose. Last week, he cut his leg open at a friend's house & had to have 4 stitches, but it has not bothered him a bit. We went camping this week-end and he fell out of a lawn chair and has scratches all over his forehead! And to top it off, today he fell and bumped his cheek on the recliner and has a nice bruise! So, other than all that he's great! He tends to be falling alot more often now, probably just from not having enough energy to keep going, but he is so determined! He still sleeps alot and we've been having a hard time getting him to eat good. Color is still getting worse and sometimes he is VERY irritable. He has his good days & bad days (like most people).We'll keep everyone updated as we go! Just keep us in your prayers.JamiePS If you haven't already, we would appreciate it if everyone could put Kaston on your prayer lists at your churches! Thanks!May 5, 2004
Just thought we'd let everyone know what's going on with the little guy. Kaston is tentatively scheduled to have a heart catherization on Monday, July 12 and if he's ready for his next surgery (the Fontan) based on what they find there, they will operate Tuesday, July 13. We will have to go down on Thursday, July 8 for pre-op on Friday. The average length of stay for this particular surgery is 10 days to 3 weeks. So we're planning to be in Dallas (Children's Medical Center of Dallas) for about 2 1/2 weeks. Of course, everything is tentative and subject to change at any time, but at least we have a time frame we're shooting for now!As far as how he's doing, it's hard to tell there's really anything wrong with him! He's your typical 18 month old little boy, doing little boy things. He climbs EVERYTHING! The only thing we can really notice is that he still sleeps more than most kids his age, his color is more blue than usual, and he just doesn't have much stamina. Most kids by this age are running, but he only walks, and very slow at that (most of the time). He loves playing in the water and being outside, like most kids. We can't keep him off of grampa's tractor and 4-wheeler and he loves playing in his daddy's truck! It's just so hard to believe that he already needs his 2nd surgery!So, please just be praying that the next couple of months go smoothly and we'll keep everyone updated as we know more! Thanks for all the prayer and support thus far in our journey -Take care & God Bless!
Bob & Jamie
7 April 2004Just wanted to let everyone know how Kaston's cardiologist appointment went yesterday. For those of you who didn't know, his pediatrician was concerned with how much time Kaston was sleeping throughout the day & wanted us to schedule an appointment with the cardiologist (he wasn't supposed to go until July)So, basically, Dr. Noubani ran the usual EKG and echocardiogram. He said he felt the structure of his heart looked very well and did not see any problems there. However, the echo does not show the pressures in the heart, so he contacted Dr. Zellers at Children's in Dallas and is forwarding information to him. He feels that he will more than likely want to do a heart cath and depending what they find there, of course, will depend on if we go on to the next phase (surgery). The earliest they like to do the "Fontan" is 18 months - so we have at least a couple of months before they would even consider surgery (unless immediate danger). But it may be that we could wait until he's just a bit older. Dr. Noubani also had Dr. Young (pediatrician) run labs for anemia, as iron deficiency can also lead to fatigue. He hasn't been eating well and losing weight, so it is a possibility that he is anemic as well. But, that is also a sign of congestive heart failure.Based on the information that Dr. Noubani presented us, we figure that Kaston will have his cath. in a month or so (in Dallas - will be a 3-4 day visit) and then we'll just go from there!I'll keep everyone updated as we get new info. Until then, just keep little Kaston in your prayers and God Bless!Jamie
23 March 2004David,
Just wanted to give you an update on Kaston & just asking for a little prayer for him. We went to see his pediatrician just for his 15 month vaccinations and monthly synagis (for RSV) vaccination & his well-baby visit. But Dr. Young was concerned with how much Kaston is sleeping. He sleeps 12 to 14 hours at night and takes 2 - 2 to 3 hour naps during the day. Also, we have been playing outside lots (spring is finally here!), but he only lasts about 45 minutes and is always out of breath, then he's ready to sleep. And he's not been eating well & has not gained any weight the last month. So, he feels that he may be in the beginning stages of failure. We go to see his cardiologist on April 6. He's not actually scheduled to see him until July. Hopefully it's nothing, but we just have to make sure.Thanks for all of your continued support and may God bless you & your family!JamieThis is an archive page for 2hearts.
To go to the main site... http://2hearts.org.uk