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.