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.

Back Home

We got back home on Monday evening. We were very tired so didn't post then. While in St. Louis Kyle's heart rate remained normal without any arrhythmias. He got his two doses of IVIG and lab work on Monday and then we were dismissed. He has gained 9 lbs. since we first came home and is looking much healthier. He had some irregular beats again last night that lasted for several hours. We recorded it and sent it to St. Louis. It was better by the morning. I talked with Jamie today and after the doctor looked at it they determined it was just a sinus arrhythmia and were not worried. Basically his heart was just beating irregularly. I asked her if this will get better with time or not and she wasn't sure so we will have to ask Dr. Canter when we go back out there.
They are planning Kyle's next cath and biopsy for the week of Feb. 11th. They want to do it on the 11th but I asked them to reconsider another day that week if possible. Kyle was selected to be on the math team with his best friend and their competition is on the 12th. If he has his cath on the 11th we wouldn't make it back in time for the competition but if we have to go then we will. Tomorrow Kyle will be 8 weeks out from his transplant and can again start some physical activity and be off of the lifting over 5 lbs. restriction. He is very happy about that. We have been discussing healthy eating lately and now that he is gaining back weight and has an appetite I am encouraging him more than ever to eat healthy. I have been looking for heart healthy recipes and if anyone has any to pass along let me know.

I found out this afternoon that little Luke Sulley ( their blog is families are forever, on my followed blogs section) passed away sometime yesterday. I called Kenton as soon as I found out. Luke was in the hospital
many of the times when Kyle was. He was a beautiful little red headed 3 year old boy full of life when he was feeling good. He had his heart transplant a week or two before Kyle's. I remember watching him in the hall of 7 West in the little tike's car, peddling along with his little legs. The last time we saw Luke he was sitting up in bed dunking his chicken nuggets in his yogurt and licking it off. Kyle was laughing at how cute Luke was. Kenton and I got along really well with his parents, Troy and Jamie. They are amazing and beautiful people.
My heart is breaking for them. Their faith in our GOD has so inspired me. They are wonderful parents and stayed with Luke the whole way, keeping their family strong and being there for each other. Luke had been out there in St. Louis a lot longer than Kyle. Please keep them in your prayers. There is a very special new little angel in heaven now. I know we will never forget him or his family.

Back to St. Louis in less than 26 hours

We got home from St. Louis on Thursday night and all had went well, we thought. On Wednesday Kyle had his cath and the biospy results were good, 1R, which means just inflammation. A few changes in meds and we were dismissed with a heart event monitor so we could record any arrhythmias that Kyle had at home and send them into Dr. Canter per telephone. After the 7 hours trip home we were sitting at the table Thursday night, not home yet an hour mind you and Kyle tells me, " Mom, my heart is racing." We recorded and sent per telephone. 35 minutes later it was still at 165 beats per minute so I called the cardiologist on call. If no better in an hour I was to call back. It finally settled down. Kyle's heart rate was normal in the morning so he went to school and I went to work. I called and talked with Jamie the transplant nurse and told her about the night before. She had the doctors look at the strips we had recorded and sent. Dr. Canter wanted Kyle back in St. Louis by that night. So here we are. We got here last night about 9:30 and although Kyle's rhythm has been normal they gave him his dose of IVIG during the night and he will get a second dose tonight. His prednisone has been increased back up to 50mg bid. The doctor today said we need to stay until Dr. Canter can see Kyle on Monday and possibly then go home. They are being extra cautious with Kyle. We have teased him that his heart just likes St. Louis!

We looked for our new friend little Luke and his parents when we got here but thought maybe they had been dismissed to home only to find out later he had a bad night the day we left and was back in CICU, and is back on ECHMO. Please pray for him. I wish you could all meet him and his parents. He is a neat kid and such a character.

Don't know when I will get to post again. I am using the computer in the Ronald McDonald room here at the hospital right now. It is usually pretty busy. Hopfully I will get to post Monday night if we get to come home.

Back to St. Louis

Wow, it has been a busy week or so and I have found little time for the computer. Kyle is back at school and I have been able to go back to work at the hospital some. We are scheduled to go back to St. Louis tomorrow as Kyle is to have another cardiac cath and biopsy on Wednesday. If all goes well and the biopsy is again negative we will come back home on Thursday. We had to take Kyle to the ER last Friday evening. I had to go to St. Joe to pick up some of his medication so I left work early. One of his meds was a compound mix and couldn't be done in Maryville so I had to go to Bender's in St. Joe to get it. As soon as I left the pharmacy Kenton called and Kyle was having an irregular heart rate again so after calling St. Louis they told us to take him to the ER for an EKG and have it faxed to them. Turned out his heart rate was irregular but not as rapid as it had been on previous episodes. St. Louis was not too concerned after seeing the EKG but he has had the irregularity some over the weekend also. Dr. Canter thought before it could be from irritation or inflammation of the heart so we will see what he thinks when we get out there. Otherwise Kyle is looking and doing well. The nausea is finally better and his appetite is back. He is eating like crazy now. He has gained about 5 lbs. since we returned home. We are learning to adjust to our new routines. Hoping for good news on this trip to St. Louis. I will post when we get back.

Back to School

Today I took Kyle back to school for the first time since we left in the first part of October. They had talked with his class this morning about Kyle returning and we came in around lunch time. He was smiling from ear to ear and obviously very happy to be back. He immediately went to the lunch table and set down between two of his friends. He stayed the rest of the afternoon.
Tomorrow I am planning on taking him in the morning and seeing how he does. He wants to try and stay all day but we will see. I don't want him to get worn out but if he is doing OK we will probably let him stay. He has had a runny nose the last few days but feels fine and no fever so we will continue to watch and monitor. Iwas so proud of him. He actually packed a hand sanitizer in his pocket without me even asking before we left today!

The transplant nurse called again today. Kyle's lab work from Friday was back and the level for one of his meds is a little low so we are again increasing it and I will take him down again on Wednesday morning for another lab draw. If all goes well I will try to go back to work later that morning.