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.

Happy Day

Kyle is doing well. He is still having some nausea and we continue to adjust his medication. The transplant nurse called 3 times yesterday and again this afternoon. His appetite was a little better today so I am hopeful that things will continue to get better. Yesterday afternoon I went into to meet with the school about Kyle returning back to classes. While I was there he spent some time with Kenton riding in the combine. He was so happy and it was great to see him excited about something again. If you are wondering, that is a mask he is wearing on his chin. Doesn't do much good there and not sure why he just didn't take it off for the picture. He really doesn't need to wear it but we felt safer having it with him. He wanted to stay longer with Kenton and I let him for couple of hours. Yes, Kenton is still trying to get crops in as so are some others around here. This last year was pretty tough on farming. But we are hopeful for a better year in 2009. We are hoping for a better year for all of us. My biggest goal for 2009 is to help Kyle live his new life to the fullest. We will have to be cautious. They tell me it takes a full six months to recuperate from his transplant. We have so much to worry about, rejection, viruses, other illnesses and all the side effects from taking all of the medication he is on. I so wish we could say it can all be behind us now but it never will be. Kyle has a new life to lead, one that still requires scheduled medications, frequent doctor visits, blood work and an unknown future but provides opportunities to do so much more than he could before. The last part of 2008 was very rough for Kyle and I want to make 2009 as enjoyable as possible. We are planning on taking Kyle camping and fishing more this year and just spending more time together as a family.

There is so much to worry about. I read somewhere "if you are worrying too much you are probably not praying enough." (Anyone who knows me knows I worry all the time)- so I am praying more now!

Made it Home

We made it home last night around 8:30 p.m. Kyle and I both slept well. That is the first time I have slept in a bed in a week.

Kyle is doing well. The nausea was a little less today. I talked to Jamie the transplant coordinator twice as she relayed what Dr. Canter wanted me to do about Kyle's meds in regards to how much to give. I am suppose to talk to her again tomorrow in the afternoon. We go early in the morning to lab for another blood draw to check levels. I am going to talk to Kyle's school tomorrow. Hopefully he can go back sometime next week. We are going to try half days to start depending on how he feels. I will probably try to get back to work a little next week also. Today I spent doing laundry and trying to sort through and put things away. Basically our house is a mess. It kind of looks like when you move, which Kyle and I were gone for three months. I also boiled a lot of water today. You might of heard. Right after Kyle and I went to St. Louis last week several counties in our area where issued a boil order on the water. Something happened at the plant and now water needs boiled for dishes and they tell you to drink bottled water. As if the stress of bringing home a newly transplant child who is immunosuppressed wasn't enough. We are taking all precautions and Kenton took Kyle to Kenton's mothers to shower. She is not on our rural water. We are using paper plates and such as much as possible. Kyle's spirits are better since we came home. I know he wants to get back to school soon and really wants to go ice fishing with Kenton and his uncle Kenny soon. He is afraid he might get sick and be back in the hospital before he gets to go so hopefully they can do that in the next few days. Kenton and Kyle looked at Cabela's in St. Louis for an ice fishing shack but they didn't have any-too far south I guess.

We are happy to be home and get back in the swing of things. Again I want to thank everyone for all the support.

Good News

The biopsy results came back good!  We didn't get a number out of Dr. Canter before he left but he said it was good and if he could get the prograf level straightened out we can go home tomorrow.  Prograf is one of the anti-rejection medications that Kyle has to take twice a day.  It was high last night so they held it this am and re-checked a level tonight.  It was 15 tonight.  The range that they want it at is 10-15.  So he is getting a smaller dose tonight and another lab check in the am.  Poor Kyle is becoming such a pin cushion.  Guess we had better get used to it.  He is still having problems with nausea and stomach pain but it has not been unbearable and he still has been able to eat some and drink.  He is getting zofran for the nausea as needed and will probably need some to have at home.  They think the stomach upset is all due to the drug level being high.  

Kyle  and I both slept better last night.  We really needed it.  He was getting pretty down and being tired didn't help.   We are looking forward to going home.  Dr. Canter stopped me in the hall this morning and talked to me about the option of coming back here for follow ups for now until things get more straightened out.  Kenton and I had already thought about this.  Dr. Canter thought this might only be for the first three months and then hopefully things will be more stabilized.  Kyle will need another biopsy in two weeks.  So that is the plan for now.

Thanks again for all of the support, blog responses and phone calls.  

Plans Change

The plans have changed for Kyle several times since we came back to St. Louis. As more tests are done and more information is obtained the doctors have again changed what they want to do with Kyle. This morning we thought Kyle would have an ablation during his catheterization to try alleviate the arrhythmias he was having. He had only a few arrhythmias while out here and nothing like when we were in K.C. They talked to Dr. Van Hare this morning and it was felt the ablation could not be done unless he was having the arrhythmia. So they considered another medication called solotol( betapace). If they were going to put Kyle on it he was going to need to be here for 3 - 5 days because it does have more serious side effects. When we told Kyle about this he just laid there and tears rolled down his cheeks. He did not feel good this morning. He is getting so tired of being in the hospital.
The cardiac cath was done and Dr. Canter just came in and told us the latest plan. The cath looked good and showed measurements that were even better than last week. The final biopsy will not be back until tomorrow afternoon. Because Kyle's arrhythmias have settled down for now they want to wait before starting him on any new pills and keep him off of the anti-arrhythmics. So we will wait and watch. If the biopsy is negative, no more arrhythmias, and the nausea resolves he could go home on Wednesday. Dr. Canter thinks the that when he upped Kyle's medication last week it could have caused some stomach upset. I 'm sure plans could possibly changed again depending on what happens but I like the idea that we wait and see how he does before starting him on some new medication. Hopefully things will continue to progress well. Kyle lost another pound when they weighed him this am so he now weighs 78 pounds.

I will post tomorrow when the biopsy results are in. We are keeping our fingers crossed.

January 4th

Kyle remains here at St. Louis Children's Hospital. Dr. Canter and Dr. Van Hare looked at the rhythm strips and EKG from Children's Mercy and they feel Kyle's heart is having multiple focus areas in the atrium of his heart. Essentially two areas are trying to take over as the natural pacemaker of the heart. This is the same thing Children's Mercy felt was going on also. The plan is to go for a cardiac catheterization tomorrow, do another biopsy and Dr. Van Hare will again try to ablate the area that is causing the problem. To do this they have taken Kyle off of the cardizem and will probably give him some drugs during the catheterization to increase Kyle's heart rate and then if they are able to find the area ablate it. With in three hours of not giving Kyle his scheduled dose of cardizem this morning his heart started its irregular rhythm but has not been as bad as it was in K.C.
The highest rate has been in the 150-160 range. He has had some stomach ache, nausea and decreased appetite since he was at Children's Mercy and that seemed worse this morning. The nurses have really encouraged him to drink so he won't have to have an IV. Kenton talked Kyle into a subway sandwich and went and got it for him late this afternoon. I was concerned about the symptoms he was having could be the rejection getting worse. These were similar symptoms he had when he went into heart failure earlier this fall. Dr. Toib and Dr. Canter went ahead and ordered an Echo this am and I am happy to say the heart function looked good, even better than his last one here. Please say a prayer for Kyle that tomorrow will go well and the ablation will be a success. The tech that did Kyle's echo today told us the Dr. Van Hare is know nationally for his work so we are feeling hopeful.

Back in St. Louis

Yes, we are back at Children's Hospital in St. Louis. Last night Kyle's heart rate went back into its irregular rhythm and its rate was all over the place from 90 to up to 200 again this morning. Sometimes he was in a sinus rhythm sometimes he had some atrial tachycardia. They increased the dose of cardizem hoping it would help. This morning Dr. Hubbell and the group came in and told us Kyle was going in and out of some heart block also. Another cardiologist who deals with the arrhythmias came and seen Kyle later. After some discussion back and forth with St. Louis it was decided that we should bring him back out here. At first they talked about transferring him but then decided he was stable enough that I could bring him in the van. We left K.C. about 1:30p.m. and Kenton was about 2 hours behind us coming from home. We arrived here about 6:20. Dr. Toib was in the hall and told us he was suppose to see us and to get to admitting and come upstairs. We got to the room and Kyle no more than got his shoes off and Dr. Canter showed up. We are not sure what the plan is but I suspect they will try to do another cardiac cath and Dr. Canter mentioned having Dr. Van Hare try to do an ablation again. Good thing is that Kyle is feeling OK.

Brought the New Year in with a BANG!

Kyle and I had a lot of excitement last night, more than we wanted. Kyle continued to feel nauseated and had stomach pain throughout the day. They finally started giving him benadryl IV and zofran IV scheduled around the clock to help him. The IVIG finished up about 8:30 or so. His IV site is still good but with all that has been going through it, it is sensitive and hurts every time they flush it or mess with it. Kyle slept quite a bit yesterday. I finally tried to lay down and do the same about 10:30 and I had no more than shut off the light when his cardiac monitor started alarming. I turned it my way to see if it was just a loose lead again but it wasn't. Kyle's new heart decided to get excited again and was beating at about 200 beats per minute. I had the light on and was checking on Kyle when the nurse walked in. She had been watching the monitor outside. Kyle could definitely feel the fast rate. He is so thin and little his entire chest, neck and head were bobbing up and down due to the rapid rate. It was very scary for both of us. Several nurses and the doctor (intern ) on call were in the room checking out Kyle. They did an EKG and the doctor ended up calling the attending. I told him how concerned Dr. Canter was about Kyle and that we would have to watch him very closely due to the increased possibility of rejection. The doctor ended up calling the attending Dr. on call, Dr. Hubbel. Dr. Hubbel did Kyle's cath on Monday and has know Kyle since he was first brought here at 2 weeks old. The nurses were surprised the doctor called Dr. Hubbell but I wasn't. Dr. Hubbell told them what to do and that he would come in this morning himself and do an echo on Kyle. they drew labs and did a CXR to check the size of his heart. The whole rapid heart rate episode lasted about 25 minutes but seemed much longer. It settled down on its own but they did give Kyle some digoxin last night to help control the rate. My biggest fear was that the increased heart rate and vomiting were all due to increased rejection. Kyle was too. At one point he tearfully asked me if this was it, or as he put it "the end of the line" for him. He remembered Dr. Canter telling us they do not usually do another transplant if your first one fails due to rejection. I tried to reassure him that there were many other things that could be done yet and his immune system just needed to settle down and would over time like Dr. Canter had told us but we were both scared.

We finally slept and Kyle is feeling better today. He still has some nausea and looks wiped out but has kept his pills and some fluids/crackers down. His heart rate has remained stable at about 90-100 beats per minute. Dr. Hubbel did come in and with a room full of other doctors and nurses and did the echo. He felt the function of the heart looked good. I am somewhat reassured but his last echo all looked pretty good too and then we found out later from the biopsy he was having some rejection. They called Dr. Canter in St. Louis. The intern told me he didn't know if they would be able to reach him there because of the holiday. I knew it wouldn't be a problem. We only saw Dr. Canter for a few months but he seems to live, eat and sleep caring for his transplant kids. He told them what meds to try so we will be switching his cardizem that he takes three times a day to a long acting version twice a day that Dr. Canter thinks will give us better control. He told me in St. Louis that he thinks the irregular rate is due to irritation. They tried to do an ablation there during one of his cardaic caths but were unable to do it.
That might be another option for the future. We are currently waiting on the pharmacy to fill the order. The pharmacy is pretty slow here. Probably a good thing I don't work here or I would be constantly calling them. We have to stay again tonight to see how Kyle tolerates the med change.

What a way to bring in the new year. I didn't go party but boy do I feel like I did. Kyle is watching his Hawkeyes game today.
Hopefully he will continue to improve today. We were thinking he could go back to school even half days next week and I would go back to work half days but unsure now. I have to have him back at the end of next week for another cardiac cath and biopsy.

Our journey continues and I think I am starting 2009 with a few more gray hairs than I had last night.