HAPPY BIRTHDAY!

Kyle turned 14 yesterday! We have had a busy weekend. Friday night he graduated from the 8th grade. We are so proud of him. He had a long hard year and was away from school for about 3 months but still passed with all "A"'s. We are so proud of him.


We spent most of Saturday at Rainbow Iris Farm for "Bloomfest". Kyle enjoys helping out there and esp. likes driving the golf cart. Last night we had birthday supper for Kyle with Kenton's family and today Kyle is spending his afternoon with two of his friends having a video game marathon which included pizza and pop. Things continue to be good for us and we are ever so thankful.

Happy Belated Easter and National Organ Donor Month

We have been busy, busy, busy! Kyle is doing so well! I don't know if you can tell or not but he has gained about 15 lbs. He has so much more energy. When he is not as school he spends most of his time outside with Kenton.

It is National Organ Donor Month. We want to encourage everyone to become
registered donors! I hope to post more about that in the weeks to come!

Update

It has been a long time since I have posted but we have been busy and as the saying goes, "No news is good news."  Kyle continues to do well.  He is gaining weight and seems to have lots more energy.  We continue to have monthly cardiac caths and biopsies as well as the IVIG.  All is going well which is good.  Spring is a busy time of year for us and we all have lots going on.  Kyle is enjoying being outside and being Kenton's side-kick.  It is good to see him have so much energy.

It is becoming easier to not dwell on where we have been in the last year and to try and enjoy life again.  I will probably post less on this blog unless things take a turn.  I will still use it for medical updates and as I am able to help more with the blood drives and the organ donation, post that information here also.  

Liz, thank you for your comments.  I want to get your email address, I'll try to call you sometime to get it.  I think about you often and we hope to see you again also.

We are back home and doing well

Kyle was released from the hospital on Saturday morning. He heart rate has remained stable and I am praying constantly that it continues to remain that way. He and I drove back home Saturday. The roads weren't the best and we heard that I-70 was closed for a few hours but had opened back up by the time we got to Columbia. The interstate just east of Kansas City and the roads up to north of St. Joe were bad but we took our time and made it safely.

On Sunday the Make a Wish foundation people came out to the house to visit with Kyle. Kyle wasn't shy at all and was very excited about having a "wish" granted. He seemed to sleep better Sunday night, at least better than I did. This last visit to St. Louis was really hard.

Good news- Jessica got one ratings on both of her entries at speech contest and will now be going to the state competition. We are so proud of her!

For now we hope things remain quiet and routine for us. I have to take Kyle down to the hospital for labs in the morning and then to school before I go to work. We don't go to another doctor's appointment for several weeks if things remain quiet.

Our day started out busy but good.  I was dressed and planning on going to work.  We have had a busy week at our hospital with Joint Commission there for the annual visit.  I was looking forward to their visit being over today and to hopefully have a good day at work with things settling down there for the weekend.  I had planned to run some errands after work, get groceries( we were eating what crumbs we could find at home), working on paper work and cleaning house this weekend.  Everyone else had busy plans also.  Kenton is still playing catch up on the farm and tending to new baby calves daily.  Jessica had play practice again tonight and leaves early in the am for individual speech contest in the morning.  Kyle was planning for a good day of "boom-boom kick ball" after lunch and the a middle school dance tonight.  Our plans all changed rather quickly.  I woke Kyle up about 6:30 as usual.  By 6:40 he came to me to tell me his heart was racing and he had already made a recording on his event monitor.  I got my stethoscope and listened to him.  Sure enough, his heart rate was about 200 beats per minute.  I called the event monitor number where his recording can be sent by phone.  The lady sounded very tired but after I sent the strip she woke up rather quickly asking if Kyle was OK and to send another strip.  After several phone calls back and forth between St. Louis it was decided that we needed to bring Kyle back out here.  Dr. Canter felt since Kyle was not showing any other symptoms but the fast heart rate I should bring him by car so I did.  I felt like a crazy woman.  Here his heart rate was 160-200 and I was driving him by car 6 1/2 hours to St. Louis. We stopped and pulled over a couple of times on the way to check his heart rate and report to Jamie the Transplant nurse when she called to check on us.  To the doctors and nurses surprise when we got here his heart rate was still up.  It would go down for a short period of time then back up.  The plan was to take Kyle to the cath lab for an ablation.  Dr. VanHare would do the procedure.  He is known throughout the country for arrhythmias and ablations to help control them.  He and Dr. Canter were in the room and Dr. VanHare told us he needed the heart rate to stay up when he took Kyle into the cath lab so he could find the area causing the problem.  Kyle told them he could make it go back up by taking deep breath.  I don't think they believed him but he then showed them.  He took a deep breath and the monitor rate when up to 190.  I think they were quite baffled as to how that would cause it to go up but it did.  

Kyle went into the cath lab about 5 pm.  We knew he couldn't have much for sedation as he needed to be awake for the heart rate to stay up so they could find the problem.  With sedation the rate goes down.  We were both nervous when I walked him to the room and kissed him good bye.  I found out later it was extremely painful.  They did give him some sedation medication but wanted Kyle somewhat awake.  Kyle told me he screamed so loud when they put the catheter in that he was surprised I didn't hear him.  That made me sick to my stomach.  We both cried a little and I told him how sorry I was he had to go through this.  Dr. VanHare was able to do an ablation but stated he is cautiously optimistic it will work.  He said Kyle does have a lot of scar tissue and the cath did hurt him and he apologized for that but it was the only way.  I knew that it would be rough before he went in.  Now we wait and see if his heart rate stays down.  Hopefully it will, but if not Dr. VanHare says we will need to try a new medication.   

Kyle has to lay still now on his back for a total of four hours.  Hopefully we will get to go home tomorrow.  Please keep Kyle in your prayers that the ablation did work.  He has been through so much but and his nurse with him in the cath lab today said, "he is such a brave boy."

He really is a brave boy.

Good Day

We left Thursday for another trip to St. Louis for a scheduled cardiac cath and biopsy on Friday. Friday was a "good day". Kyle's cath went well and the preliminary biopsy results came back as a "0" for rejection. Awesome news! We originally thought we were going to stay in the hospital overnight because Kyle would need a IVIG treatment on Friday and again on Saturday but Dr. Canter came and told us "because of Kyle's good behavior he would make him only get the one on Friday and then he could be dismissed. We ended up staying out there again Friday night as we already had a hotel room and they wouldn't refund our money. We drove back today. We had to stop and get Kyle some new jeans and shoes. He now weighs 93 lbs. and everyone at the hospital commented on how much weight he had gained. Dr. Canter was so pleased with everything that they are releasing him back to Kansas City and he won't need another cath and biopsy for 4 weeks. Although we will miss everyone at St. Louis we are so happy Kyle is doing well and we hopefully won't need to make the long trip anymore.

While we were there we dropped off pop-tabs to the Ronald McDonald House where we stayed at. Our good
friend, Doc Wayne Haidsiak, from Lenox, and his family have had a collection box at the bowling alley in Lenox. They collected over 17,000 pop-tabs and they weighed around 10 lbs. We were told the pre-school kids at Lenox counted all of them! How impressed we were to hear that! The Ronald McDonald House staff was excited to get them. Thank you everyone who has been saving them. I brought back some small collection boxes and hope to continue to collect them.

Oh, and Kyle did get to go to his math contest and he did really well. He didn't know what his team scored but they didn't make the top ten. It was a very tough competition. He was told that there were about 400 kids there and he scored 75th. Not bad for missing 3 months of school. We are so proud of him!

I am planning on going to Bedford's blood drive on Tuesday. I am excited to donate again and help encourage others who do so also. Kyle and others who have been in his situation benenfit from blood donations. With Lent coming up I thought that donating blood would be a something I could do for myself and to encourgage others to do. People are busy and giving blood takes time and isn't always fun to do but I encourage you to take the time to donate if you can so others can be helped.

Thanks for all of your continued prayers!

Update

It has been a while since I last posted but we have been so busy. We just got back from another appointment in St. Louis. Kyle had another cardiac cath and biopsy done yesterday. It came back as a 1R again,which is pretty good. They decreased his prednisone again and we had to adjust his anti rejection medication again due to the levels. Sure seems as if we are having a hard time getting the right dose but I have talked with other transplant patients and this is not uncommon. We go back again on the 20th of February for yet another biopsy and his monthly IVIG. If things continue to go well Dr. Canter mentioned that we would be able to start going back to K.C. for follow up. We have put so many miles on the van with all of the frequent trips.
We decided to trade it in for a different one. Not new but like new. It is a 2007.

Kyle woke up c/o a sore throat this morning. He doesn't have a fever so we are just watching him and trying to help him get enough fluids and rest. So many viruses have been going around lately. I knew he was bound to eventually pick something up. He does a really good job using his hand sanitizer and keeps it in his pocket.
I have told him he might need to stay home tomorrow if he still isn't feeling well. Thursday is his big math competition so hopefully he will feel well enough to go.

Good thing is that the irregular heart beats have stopped for now. We will see how he does this next week as the closer he gets to needing his IVIG is when they tend to occur.

That's all for now. I hope everyone enjoyed the good weather over the past few days. I know it has given everyone at our house a little dose of spring fever.