Reflections

Kyle and I are still here at Childen's Mercy in Kansas City. They finally got the first dose of IVIG started last night at 9:30 p.m.
It finished about 3:30 a.m. He slept good and when we got up this morning he was feeling well. We were waiting for the other dose of IVIG and were planning on going home later tonight. After breakfast Kyle started to not feel well. His stomach started to hurt and he became nauseated. Right after they premedicated him for the IVIG treatment he vomited a large amount. Since then he has not felt well. They went ahead and started the IVIG but I doubt we will be going home tonight.

I have been able to spend a lot of time reflecting on where we have been in the last year. In the spring we were worried that Kyle could be getting close to time to have the additional open heart surgery and valve replacement he was going to need. I had noticed he was becoming increasingly short of breath. In June we came to Children's Mercy for a check up and things didn't look too bad. Medication was changed to help Kyle's heart. In August we noticed Kyle was not feeling as well. He had decreased appetite, stomach pain and nausea and vomiting. Several trips to the doctor and and ER visit found enough information to see Kyle was in heart failure. He spent about 5 days before Labor Day in Children's Mercy and again meds were changed but the cardiologists decided Kyle needed to be evaluated in St. Louis by the Transplant team as he was having both right and left sided heart failure. A valve replacement was not going to be the answer.

We went to St. Louis on Oct. 5th planning on spending the week there to get tests done. We were hopeful that other options could be done for Kyle's heart but the thought of a transplant loomed over our heads.

Kyle didn't do well during the cardiac catheterization. They called a "Code Blue" on him but it was only for a short time.
Later that night Dr. Canter took Kenton and I into a small consultation room to tell us what I had feared we would hear.
Dr. Canter put it plain and simple. Kyle's heart was no good and he needed a transplant. He would be put on the transplant list the next morning. When he left the room we broke down and cried and held each other. At that moment our lives changed.
We went from long days at work, kids ballgames and activities and being together at home to living apart, worrying about Kyle's health and waiting. Hospitals have become all too familar. We know what food is good to eat at each one, what the alarms mean and don't even blink at the sound of overhead helicopters.

Kyle received his new heart on Dec. 4th in the middle of the night. The ICU doctors said I was smiling the whole night and I was. We will forever be grateful for the donor's family. I will write them a letter when I can but now it is still too new and fresh.
One journey was over that night as Kyle got his new heart and survived the operation. We are on another journey now. We are trying to help Kyle's body not reject his new heart. We are learning lots of medications, precautions, nutrition and what to expect. Our battle is not yet won so we enter 2009 with grateful hearts but also being very cautious. We met many wonderful people through out our journey and many we will never forget, especially Macy, Luke and their families. What 2009 holds for us remains to be seen but I am thankful to GOD that Kyle is with us.

I want to end by telling you about something that happened to Kyle and I when we were in St. Louis. The week before Christmas I had to take him back to the hospital because he was so sick. His heart was racing and he was miserable. We were sitting outside of radiology, Kyle in a wheel chair, and an attractive well dressed lady came into the department with her toddler.
I noticed her right away. She seemed very happy. As she was leaving she walked by Kyle and stopped, turned around and came back and stood in front of Kyle. She bent down and put her hands on his knees and told him he was going to get better and he would be home for Christmas. She said, " I know you don't believe me, but it will happen and you will remember this lady told you that you would be home for Christmas." I knew how sick Kyle was and as I thanked her I doubted what she said.
We left St. Louis on December 24th and arrived home that evening. I don't know who she was or why she told Kyle what she did without knowing anything about him but I if there are angels truly among us I think she was one.


Thank you for all of your support and prayers in 2008 and may all of you have a blessed and safe 2009.

Cath Results and Back to the Hospital

Kyle had his third post-op cardiac cath and biopsy yesterday at Children's Mercy in K.C. He got through it fine and they dismissed us about 7:00p.m. He had told me earlier in the day he didn't want to stay in K.C. for the night waiting for the results and just wanted to go home. He really felt the results would be fine. We got home around 9:30 p.m. He slept the whole way home. This morning he told me he didn't remember anything after going for the cath until I got him out of the van when we got home. This afternoon Pam, the nurse called me with the biopsy results and they had come back showing some imflamation and after calling Dr. Canter in St. Louis he wanted Kyle admitted for another 2 doses of IVIG treatment. She told us we needed to come back to K.C. so here we are. Pam said Dr. Canter said he thinks Kyle has some vascular rejection going on. Kyle was pretty upset and down about coming back in the hospital and was pretty tearful. He is getting tired of all of the IV's. But as usual he doesn't let it get him down for long and is already on the phone with his best friend for their nightly conversation. He will get a dose of the IVIG tonight over 6 hours and again tomorrow. We are hoping to go home tomorrow but not sure if that will happen.
Pam told us yesterday we will be coming to K.C. a lot in the next 6 months. We are trying to adjust to this new way of living and I know with God's strentgh we will.
I read today on Luke's blog that he had to go back to the hospital. He is back intubated, back on plasma pheresis and echmo. Please send your prayers up for him as well as Kyle.

Update

It was a quiet Christmas at our house, just what we wanted. We are still trying to get everything unloaded and put away. Last night Kenton and I sat down and went through mail and bills that had piled up since we had been gone. Our drive home from St. Louis went well. We had worried all day on the 23rd about how the weather would be but the weather and the roads were OK. I even made it up our road with the van thanks to continuous prayers. The drive home gave me much time to reflect on where and what we had been through the past three months. There will be so much I will never forget and so much I hope to never see again. On the 24th we went to St. Louis Children's Hospital for what I hope was the last time. Kyle had a CXR which showed the pneumothorax was resolved and he had a little fluid in his lungs but nothing concerning at the time. His breathing was better and he was less short of breath.
We had one last question for Dr. Canter. Kyle had read on another heart child's blog some statistics about how long a new transplanted heart would last. He was a little upset and concerned. We had never really talked about it as we were just focused on getting through the surgery itself so we addressed Dr. Canter with our question.
Dr. Canter told us the half life (meaning the time a new heart last for half of the people who get transplants was 14 years). I asked Dr. Canter what happens then,"Do they get another transplant?" He told us it depends on the reason for the failure of the transplanted heart. If it is because of coronary artery disease then yes another transplant is what is done. If it is because of rejection than another transplant is usually not attempted. Kyle was upset about this at first before we asked Dr. Canter. I guess he figured once he got a new heart it would last the rest of his life. We had read that the longest a transplanted heart had lasted was 27 years. Dr. Canter told me that Kyle needs very close surveillance right now as his heart has already had one positive biopsy and with the irregular rhythm Kyle has had he is sure the cross-match from the donor's lymph nodes would have been positive (they were unable to do this test on the donor lymph nodes for whatever reason). Kyle is high risk for rejection. The longer out we get the more Kyle's immune system will settle down and he should feel better. He told Kyle the next few years will be difficult in some sense because teenagers who get to feeling better (and as teenagers do feel they are invisible) don't always follow the strict regimen like taking the pills exactly as scheduled and living a healthy lifestyle. On the way out to the van we were both pretty quiet. I knew this was a lot for Kyle to take in. I waited to talk about it if he brought it up and finally he looked at me and said," Mom, I am going to shoot for this heart to last 30 years!" That's my boy. He doesn't stay down for long. We continued to talk about how no one really knows how much time on earth they have and the important thing is to live each day to the fullest. We are trying to practice it the best we can. There are times I want to just break down and cry and I do, but usually late at night when everyone is asleep. It has been so hard to see my little guy suffer. But that doesn't help Kyle. My job as a parent is to help guide him through this. So we will learn to live a "healthy heart" lifestyle, learn everything I can about transplants and try to live each day to the fullest. I still have a hard time worrying about how we will handle it all but I know with God's strength we will make it.

Jamie called us today and one of Kyle's blood test detecting a minimal amount of CMV. It was so low it didn't even register a number but they want to treat Kyle with an antiviral medication to prevent an active CMV virus which can happen immediately after transplant due to his decreased immune system. CMV is a common complication for transplant patients. So we got more medication. Kyle has another pill to take twice a day.

Kyle is doing well otherwise. He has been busy playing with new video games he got for Christmas. Tomorrow is the Annual Christmas Bird Count for Taylor County. For the past two years Kyle has spent that day with his cousin, Kelly, counting all of the different birds they can find and then record them. He won't be able to go outside and do all the walking at the Lake that they usually do but we filled our feeders tonight and we will drive him around some tomorrow also.

I'll Be Home For Christmas

You know what kind of year you have had when you are just starting to wrap your kids Christmas presents at 9:00 p.m. Christmas Eve and the only tape you can find is bandage tape.....and you are happy!

We made it home safe and sound. I will post later in the week. Right now family needs attention and also the cat and dog (who thought we had left for good.)

Packing for Home

It has been a long day.  We had to have Kyle at the hospital at 7:30 a.m. for a CXR and then get him ready for the cardiac cath and biopsy.  He went in about 9:00 a.m.  He was in about one and half hours and then returned to the recovery room.  He was pretty sedated most of the day, more so than after most of the caths he has had.  The biopsy results didn't get back until 5:30 p.m. It was negative! A 1R, which means inflammation present but no rejection noted.  We were very excited.  I noticed that Kyle's breathing was faster and he seemed short of breath.  Jamie the Transplant Nurse Coordinator checked him out and talked with Dr. Canter.  They did another CXR.  The doctor who did the cath had told us she had some difficulty going through the vein in Kyle' s neck and apparently the CXR done after the cath showed the lung was nicked and Kyle has a small pneumothorax.  Jamie said it wasn't too concerning and would heal on its own but they want another CXR in the am before we head back home.  YES, we are returning to Iowa tomorrow pending Kyle's CXR in the morning.  He is so excited as I am.  The two of us have been here since Oct. 5th and we are all home sick.  We are concerned about the weather though and watched the weather channel most of the afternoon as Kyle recovered.  We originally had planned to go back together in one vehicle and Kenton would drive.  But since he had to come back down so urgently last week we have the van and truck here.  So I will drive the van home.  Kenton didn't really want to do it that way, (he knows my history of driving when the weather is bad!).  So everyone pray for good road conditions.  

The neatest thing happened when we left the hospital tonight.  Luke, the little boy who was in the CICU room next to Kyle when Kyle was there, and his family was being dismissed also.  In the wee hours of the morning when Kyle first got out of surgery and was getting settled in the CICU there was a code blue.  I was scared to death it was Kyle and began crying.  It wasn't Kyle but Luke.  He received his new heart on Nov. 22nd.  He is a beautiful three year old with red hair and big blue eyes.  Today after his cath he was up and about riding in the a little Tike's car pushing himself down the hall with his feet.  He has to stay in St. Louis for a week before he can then return to Missouri Valley.  We had got to visit with his parents quite a bit.  I thought it was pretty neat that Luke and Kyle after spending some time in the CICU next to each other were getting to leave the hospital at exactly the same time and on the same elevator.  A true Christmas miracle for them both.

Waiting for Tuesday

So far we have had a quiet weekend.  Kyle is feeling well and his heart rate is remaining at a normal rate.  He still notices some irregularity but nothing like before.  He is tolerating the cardizem well and it seems to be helping.  We have been going out and trying to get some Christmas shopping done.  We don't dare take Kyle into too many stores.  Kenton wanted to take him to Cabela's yesterday so we did do that and he wore a mask.  Kyle enjoys going there as he always finds things to look at and liked having Kenton along as he knows so much more about all that hunting and fishing  than I do.  Today Kyle and I stayed at the apartment while Kenton took his mother out to do some shopping.  Kyle worked on some home work and watched some television.  Like me he enjoys staying at home and can usually find things to keep himself busy.

It has been a little hard for him to take all of the medications he has right now, especially those 8:00 a.m. doses as he did not want to get up this morning to take them.  He is taking 22 pills a day now and 4 doses of liquids.  It is important that the anti-rejection medication be taken the same time every day.  We have set the alarms on my phone as well as Kyle's, although I have never had too much trouble remembering to give him his meds in the past.  His cheeks are getting rosy and filling out from all of the steriods.  We are anxiously waiting for the cath and biopsy on Tuesday.  The results will be the deciding factor if we get to come home or not.  When I woke Kyle up this morning he told me he didn't think he could take staying out here much longer.  We said a little prayer together to help keep us strong and for the biopsy to be negative.  The waiting is definitely the hardest part as with anything.  I  had a hard time today, not sure what to do.  I have packed a few things up but I'm afraid to do too much, I don't want to jinx our chances of getting to go home.  

I have been thinking a lot about the children and their parents who are still at the hospital.

I know one child has been there since we came in October. Another child,  Kyle's roommate he had before he left, had the same surgery that Kyle had as a baby, a Ross procedure, which is an open heart surgery.  This little kid was 7.  He was having a rough time the night we were in the same room.  After testing the next morning the doctors finally came and told the parents that he had a stroke. My heart broke for them.  Hopefully he will get better and regain most of his strength back.  I had told Kyle the night before I was worried that was what was wrong with his roommate.  Kyle was very good and didn't complain when the little guy kept repeating the same things over and over and cried most of the night.

I watched another little girl who the nurses said was three years old walk around the halls with the nurse one evening.  She had her binky in her mouth and was carrying a little purse and a doll, or " her daughter" as she called it.  The nurse had taped a pair of play earrings to the little girl's ears.  The nurse was walking with her pushing her IV pole.  The nurse then told me this little girl was getting her one hour out of the room that she was allowed each day. It was  no wonder she kept trying to take off running.  

It was beginning to bother Kyle to see other sick kids.  He was worried about all the "what ifs"

for himself.  I told him what he needs to do it look forward, to the future.  I told him kids like him and Macy are needed to lead the way and show all the other children how much better it will get and how they can all get back to a normal life someday. They are all truly fighting such great battles.  If you have never spent much time in a children's hospital you are lucky but it does give you a "big dose of what is really important in life".  Just like the times Kyle spent at Children's Mercy in K.C. as a baby I will take all we have seen  and experienced here in St. Louis with me.  All of the children here will be in my prayers daily.  

Trip Back to the Hospital

We were scheduled to go back to the hospital this morning for lab and then get one more IV steriod infusion later in the day.  Kyle woke up about 3:00 a.m. and came in and woke me up.  He was again feeling the "fluttering" of his heart in his chest.  I checked his pulse and blood pressure.  His heart rate was irregular again but not real fast.  He wasn't complaining that it hurt just that he could feel it.  It continued for a while so I called the cardiology fellow on call.  Of course he responded with  "he just went home last evening!"  I told him yes I knew but the irregular rhythm had returned.  We discussed it and felt to just watch it here and take him in to see the Transplant Nurse when we went in for lab early this morning.  He fell back asleep but I didn't.  I went ahead and showered and got around and spent the next few hours over him frequently checking his pulse to see if it was getting worse and we would need to go back through the ER.  When he woke up the rate was back up to 140 beats per minute.  We seen the Transplant Nurse after labs and an EKG was done which showed his rate at 155.  They started him on another pill, cardizem, to help control his rate.  We had to stay around so they could monitor his blood pressure to make sure he could tolerate the new medicine.  He got his last dose of steriods while we were there also.  It ended up being another long day at the hospital but he is doing better tonight.  As I have posted before they say the arrhythmias can happen after transplant due to numerous things even just irritation from the surgery.  He might not need the cardizem forever but will get it three times a day for now.  We are hoping for a quiet night tonight as we are all pretty tired.  

We here the weather back home has a possibility of getting pretty bad.  We have just had rain late this afternoon but the sidewalks were slick.  

Know if I don't post tomorrow things are quiet just like we want them to be.   

Out of the Hospital Again

Kyle received his infusion of IVIG  last night as well as his first dose of IV prednisone.  We had little sleep last night.  We were back out on the floor and in a semi private room.  Today he received the second dosage of both meds.  He hasn't had any more arrhythmias and is feeling better. Dr. Canter dismissed him from the hospital today and we are back at the apartment.  We have to be back at the hospital tomorrow for more labs and another dose of IV prednisone.  We talked with Jamie, one of the Transplant Nurses, about the rejection and how they rank it.  Both 2A and 3A ( also called 2R and 3R) both are considered acute rejection and require the IV steriods.  She said she rarely sees 2's and that they usually come back at 3's when they show acute rejection.

I was worried about what this meant for Kyle in the future.  She told me it doesn't change anything.  He still can live a long life and we will just need to treat the rejection as it occurs and try to stay on top of it.  He has a cardiac cath and biopsy next Tuesday on the 23rd.  If it is negative we will hopefully get to go home.  If it is positive he will again need treatment.  

I have tried to upload pictures tonight but the Internet hasn't been working well at the apartments.  Kyle got a special package yesterday that I took to the hospital for him to open.  Suzie Boyd and the Ritters from Colorado sent Kyle an autographed Denver Bronco's football signed by Brandon Marshall.  Govenor Ritter is a distant cousin of ours and he got Brandon Marshall to sign a football for Kyle.  We ahd a wonderful time with the Ritters this past summer at the Untiedt Reunion.  All of the Untiedts, Ritters and Lukes have been so supportive to us as our family has gone through this.  And Suzie, thank you also for the Christmas ornament.  I have a thing for ornaments and thought this one was just beautiful.  Kyle loves his football!  

We are all hoping and praying Tuesday's biopsy is negative.

Biopsy Results

We have had a busy day.  As soon as Kyle woke up his heart rate started its irregular rate again ranging from 120-130 beats per minute.  They took him for his cardiac catheter about 8:15 a.m.

Dr. Canter came in about 9:30 a.m. and told us the biopsy was done and sent to lab and he thought from the way things looked and the measurements they took that the biopsy would be negative for rejection.  Dr. Van Hare  worked on Kyle then.  He deals with the electrophysiology of the heart.  He tried to manipulate Kyle's heart into producing the arrhythmias he was having when he was awake. By doing this he would then be able to see where in the heart the arrhythmias were coming from and if possible do an ablation which could stop the arrhythmias.  Despite what he tried he couldn't get the arrhythmias to occur.  Kyle was brought back to CICU to recover and the plan was to watch and see if the arrhythmias occurred again and if so they could put him on medication, probably cardizem to help them.  At one point in the day Dr. Canter came and told us we could plan on going home "Iowa-home" in the next couple of days.  Kyle was moved to the floor by 5:00 p.m.  One of the transplant nurses and then Dr. Canter came in to both tell us what we didn't want to hear.  The biopsy did show some rejection.  It was a 3A and would need to be treated.  They are not giving the plasma pheresis again but Kyle will need to stay in the hospital for a three days for IV prednisone and the IVIG therapy.  The IVIG infuses over 6 hours.  He is getting the prednisone right now and then they will start the IVIG yet tonight.  We were all so disappointed because Dr. Canter stated another biopsy will be needed next week and he will not let us go home until the biopsy is negative.  I don't know if we will make it home by Christmas now or not but we will make Christmas on a day when we do finally get to go home.  Kyle is handling it well, probably better than I am.  

Kyle did get a special gift in the mail today and I will post about that tomorrow.   For now he is doing fine, feeling better and heart rate is normal and at a regular rate.

Waiting

It is 4:38 a.m. and Kyle has had a fairly quiet night in CICU.  He did have one episode of SVT with a rate of 160 not long after we got over here.  Prior to the move from the floor his rate in and out of atrial fib with a rate 120-130.  He has been in sinus rhythm most of the night.  Kenton got here about 2:30a.m.  He is pretty tired so I gave him the chair that lays back.  It wasn't a big sacrifice for me, I hate that chair- it is so uncomfortable.  I'm sitting in the upright.  You don't get much sleep here anyway.  It is always busy in the CICU.  Dr. Tiob is working in the CICU tonight.  He knows Kyle and Kyle likes him so I think Kyle felt more comfortable being over here.  Dr. Canter came in before he left last evening and asked Kyle how he felt.  Kyle told him he felt better than in the morning.  Mind you, Dr. Canter is brillant but not known for his social skills.  He told Kyle that he better feel better because he was causing a lot of problems.  He didn't smile or anything. Then he walked out.  Kyle and I are getting used to him though and find  him to be a very interesting person.  The plans changed frequently last night but as of  latest, Dr. Canter feels the arrhythmias could have caused the decreased heart function and how sick Kyle felt.  It happened so suddenly it makes since to me.  Kyle is scheduled for a cardiac cath this morning as well as lots of blood work to continue to check for rejection.  The cardiologist who deals with the rhythms of the heart is suppose to be here also.  While awake tonight I did do some research online for what it is worth.    I read that about 38% of heart transplant patients have arrhythmias post transplant but most are atrial not ventricular.  I don't know how accurate that info is, it is from online you know.  Anyway, Kyle just woke up and says he feels fine.  It should be an interesting day.

I did have my moment of feeling sorry for myself about an hour ago when I swore my butt couldn't take sitting in these uncomfortable chairs any longer.  I finally got the cards out that we received in the mail on Monday.  Reading them helped and knowing we have so much support and love from back home somehow makes me feel stronger.  Thank you.

Back in the Hosptial

Kyle had a good weekend back at the apartment.  Gramma fixed him some very good meals and we are looking forward to going home by the end of week.  Kyle woke up  about 3:30 a.m. this morning complaining of his foot cramping which happens sometimes.  We put the heated corn bag on it and it took him a little while to get back to sleep.  At 8:00a.m. our alarm went off as it was time to give his anti-rejection meds.  We did that and he laid back down.  He got up around 8:40 and ate some toast and took the rest of his pills.  I went and took a shower then came back and found him asleep on the couch.  When he woke up about 10:oo or so he was chilling, shaking and told me he didn't feel good.  I took his temp., 98.9 and checked his heart rate and blood pressure.  His heart rate was 140 beats per minute, much faster than it had been.  He also felt nauseated.  I called Kathleen the transplant coordinator and we were told to bring him in.  By the time we got there his temp was up to 100.4 axillary.  Dr. Canter came in and the decision was made to admit Kyle back to the hospital.  A CXR and echo have been done.  UA and nasal swabs have also been done.  We didn't get put in a room until about 3:00p.m.  He is on the heart monitor.  I started to notice some irregularity in his rhythm.  At one time he had a run of what I thought was SVT with a rate of 160 beats per minute.  It didn't last long but Kyle could feel it.  He is going in and out of an irregular rhythm, looked like atrial fib to Sinus rhythm to me.  I went and told the nurse and one of the doctors and they have come and checked Kyle.  They are meeting with Dr. Canter right now and they might put Kyle on something to control his heart rate.  He feels these irregularities and is having some chest pain, like someone is pushing on his chest.  Dr. Canter has told us the echo showed Kyle's heart isn't functioning as well and they think it is do to rejection.  Plan as of now it back to the CICU, they thought he could be having rejection and would need another week of plasma pheresis.  Now Dr. Canter just came in and told us that the decreased heart function could be due to the arrhythmias.  Back now to CICU.  Please pray for Kyle to have a good night  A heart cath is scheduled for in the am.

Discharged!

Yes, after a long day Kyle was finally dismissed from the hospital about 5:45 this evening. He was scheduled for a cardiac catheritization this morning at 8:30 a.m from which a biopsy of his heart would be done to check for rejection.  I didn't sleep as well last night as I was anxious about how it would all turn out.   Dr. Huddleston smiled on rounds this morning and said "Today is the day Dr. Canter starts having small pieces taken out of the new heart we put in you." 

The procedure was delayed as Dr. Nicholas who was to do the catheterization, was helping with an emergency this morning.  Kyle finally went in for his cath around 11:00.  He was out and in recovery around 12:30.  The cardiology secretary literally ran the specimen over to Barnes Jewish to get it to pathology in time to get the results by the end of the day.  Around 5:30 Dr. Canter and Jamie, one of the transplant coordinators, came to tell us the biopsy was negative and we could be dismissed.  Dr. Canter made another adjustment to Kyle's meds.  He has 7 different meds to take each day,  several of each, to equal 15  pills and 4 liquids total.  We will have to go back in morning to get more blood drawn.  They monitor the blood levels of the rejection medication he is on.  He is scheduled for another biopsy next Thursday and will need to stay the night at the hospital then to receive IV medication on Thursday and then again on Friday.  If everything is still good we will be able to make the trip back home.  We are very tired tonight.  So much to take in with all of the discharge instructions.  Kyle is doing well but like the rest of us has had a lot to take in.  He gets tearful sometimes.  He worries about all the information they have given us.  I try to remind him that we are here with him and that he is not alone.  There will be lots of adjustments but we can do it.  We are just so thankful that Kyle is doing so well.  That in its self makes it very emotional.

Once things get settled down I have lots of thank you cards to send out to all of you for all the wonderful support you have given.  I can never thank you enough but please know we feel so grateful.

More Education

Today we received more education about the biopsies. A heart biopsy is done at intervals to check to see if Kyle's body is rejecting his new heart. It can tell rejection even before he would be showing symptoms. Tomorrow Kyle will have his first biopsy. It is done by cardiac catheterization. They go in just like they do for a regular cardiac catheterization and take a tiny piece of Kyle's new heart and then it is sent to lab where they are able to tell if rejection is taking place. If his biopsy tomorrow is negative we will be dismissed from the hospital but required to stay here in St. Louis. Next week Kyle will then have a second biopsy. If it is negative they are telling me he will then have an IV infusion of IVIG to further prevent rejection. He will get half of this infusion on one day and the next half on the following day. If all goes as planned we will then be able to dismiss to home by the end of next week. He will need biopsies every week for the first month, and then every 2 weeks for the next month and it will continue to taper down.

The PICU/CICU had their holiday dinner for families downstairs tonight and we were able to take Kyle for a while. He had to wear a mask. His appetite is slowly improving. We sat and visited with another little boy's parents. Their little guy is here in CICU after a transplant. Please pray for little Luke, he is only three and a beautiful boy. He has been very sick.

Kyle had a CXR, EKG and echo today. We have not heard about the results yet. We will probably hear more tomorrow. We also went down and got his medications from the pharmacy. It is a good thing he can take pills well because he has a lot to take.

I also wanted to remind everyone about the blood drive that will be in Bedford on Monday.
It is being held at the Bedford Legion from 11:00 a.m.-5:00 p.m. Appointments can be made by calling Julie at 712-370-2135 or Carolyn at 712-537-2200. So many people can benefit from the gift of donated blood. Kyle's hemoglobin was 6.4 the morning after he got out of surgery. He required 3 units of blood to improve it. Because he had an antibody and the donor heart had an antigen he had to undergo plasma pheresis to help his body not reject his new heart. He had 1 of these treatments pre-operatively and 5 of them post-operatively. The first few times he averaged needing 8-9 units of plasma for each treatment. The later pheresis did not required as much plasma. My point is that transplant patients need quite a bit of blood after surgery.
Many of the these patients are children like Kyle. I encourage everyone who can to go donate blood. So many can benefit.

I will try to post tomorrow night about how the biopsy went.

Starting Our Education

We had a good first night out here on 7 West last night.  I found out I sleep much better in a chair that turns into a bed instead of just a hard chair!  Imagine that.  Things are also much quieter out here than they were in CICU.  Kyle was up ambulating in the hall 3 times today as well as once to see these dogs who were visiting.  Kyle is a dog lover.  He misses our dog, Ralph and can't wait to get home to see him. 

Kathleen, the Transplant Coordinator, came this afternoon and worked with us for about an hour educating us on the meds Kyle will be on.  He will go home on many different medications, all with several side effects we will have to watch for.  Over time some of them will be tapered and discontinued.  There will be two anti-rejection medications that he will be on the rest of his life.  It is very important that they are taken at the exact same times every day.  We have talked about setting the alarm on Kyle's phone and getting him a watch with an alarm.  I probably need one too.  Many of the side effects can be severe but we will just have to watch him closely.  

We will talk tomorrow with her again and the first thing we are to discuss is the biopsies.  The biopsies done of Kyle's heart will tell us if he is rejecting his new heart, even before he has symptoms.  The plan for now is to have his first biopsy on Friday and if OK he will be dismissed from the hospital but we will have to stay in St. Louis at the Ronald McDonald apartments. 

The following week he will need another biopsy.  If it is negative Doctors are telling us he will be able to go home.  We are so excited because that would put us home the weekend before Christmas!  What a miracle!  I wasn't sure we would get to go home for Christmas and we are keeping our fingers crossed that everything continues to go well so that can happen.  We will be coming back frequently to either here or Kansas City where Kyle's original cardiologist is for additional biopsies.  Because Kyle has an antibody to an antigen the donor heart did have he is at higher risk for rejection.  It is likely that he could have a bout of rejection within the first year and if so would be hospitalized to be medicated for that.  There are also other complications that can occur that we will have to watch for.  Washing hands will be very important for all of us and for those who are around Kyle.  We also have to limit visitors and not being in large crowds for now.

We were told a little about the donor heart.  It was from a female and her age was 24.  That is all that they can tell us.  After one year we will be able to write a letter to the family if we want.

I am sure I will but don't know what I will say yet.  How can I ever thank them.  I pray for them and will daily for the rest of my life for the beautiful gift that they gave in their time of grief.

Kyle is doing so well it is hard to believe and also scary.  I worry for and watch for something to go wrong.  While walking in the halls today I noticed that he wasn't short of breath at all. 

It is still so amazing to me.  

 I heard the Daily Forum had a nice article in the paper today about Kyle.  Thank you Megan and to the Daily Forum for doing it.  Here is the link:  

http://www.maryvilledailyforum.com/homepage/x1009162690/Just-in-time-to-make-the-Christmas-wish-list 

Thank you for your prayers.  Kyle is living proof of the power of prayer!

Moved Out of CICU

We had a good day today.  Kyle received what we hope to be his last plasma pheresis this afternoon and then the large catheter his groin which was used for the pheresis was discontinued.  His arterial line in his wrist was discontinued also.  He walked in the hall also.

He is doing amazingly well.  Kenton and I are in awe.  Before his surgery his chest was bowed outward and uneven due to the increasing size of his heart.  Now it is flat and seems to appear more symmetrical every day.  I got several pictures over the past few days of the some of the brilliant people who I will forever be grateful to.  This is Dr. Amir Toib, he was in the CICU back in October when Kyle was there after his cardiac cath.  That night the CICU was very busy and as a sat there awake I watched this man go from room to room working with each of the little patients.  He was so busy.  That was the night that Kyle's cath site started to bleed  and 

Dr. Toib rushed in and took down the dressing and put pressure on the site and stopped the bleeding.  He is a big guy and if you needed pressure on something you would want him.

Kyle enjoys his accent.  We asked the nurses tonight where he was from and they thought he was from Israel.  

This was Kyle's nurse today, Barb.  Although this was the first day she had Kyle as her patient she had already been in to visit with him and answer his light several times in days earlier.  We liked her a lot.  She is very thorough and passionate about her work as are so many others.  She reminded me  a lot of our Barb Runde back at home.  

This is Kathleen, the Transplant Coordinator who arranged everything for us from the beginning.  She is the one I talked to on the phone numerous times before we came out here.

She is also the one who made the call to us last Thursday that they had a possible heart for Kyle.  We laughed today because I told her she was so calm when she called me and she told me she thought I was so calm.  She hasn't seen the video that Kyle taped of me as we were trying to rush around and get here!

And finally, this is Dr. Huddleston the surgeon who did Kyle's surgery and replaced his old heart with his new one.  To show you how dedicated these people are,  this picture was taken when Dr. Huddleston came around about 8:30 or so tonight to check on Kyle.  I can't imagine what expertise it must take to do his job and I will forever be grateful.

The truly amazing thing is that I see these people along with Dr. Canter here all of the time.

They are so dedicated to their work and to all of their little patients. They must have so much inner strength, faith and dedication  to do their jobs.  I know not all days are good for them and there are some very sad days but I hope they know they are special people and so many children have better lives because of them.

On another happy note we heard that Macy was dismissed from the hospital today! We are so happy for her.  She is such a strong little girl!

Rest Finally

Last night Kyle finally was able to rest.  This is something he really hasn't done well since surgery.  The night before I thought for sure he would rest but he was up the whole day without a nap and as the night grew on he only slept 1-2 hours.  He sat in bed quietly most of yesterday.

He had little interest in anything, including football on TV, he didn't even care to watch the Bronco's game.  I had never seen him so sad.  He is usually so bright and cheerful.  We talked last night and I think he was just overwhelmed with all that has happened.  Even though we tried to prepare him how can you really totally prepare a child for this kind of surgery.   It was after midnight last night and Kyle was still awake and I could see we were headed for another sleepless night.  I knew where we were headed so I went out and talked to the CICU doctor who was working.  She had been very nice to Kyle when he first came in.  We discussed his sadness and not sleeping and she said it was common.  She had the nurses give him a benadryl and about 30 minutes later he finally fell asleep and rested good until about 5:00 a.m. when radiology came in to do a chest xray.  After they left he was able to sleep for another couple of hours.  He took a short nap this afternoon while I went back to the apartment to shower. 

His oxygen has been discontinued and he continues to do well.  They are planning one more plasma pheresis tomorrow and then they will take that catheter out of his groin.  We will probably be moved to the floor then.  He has been up in the chair and moves well.  He hasn't been out to walk yet because the catheter used for the pheresis is so large and painful if moved.

This last picture shows you how well he now looks.  I gave him a bath and washed his hair with a shower cap. (it is a neat device that is a cap you heat up and put on your head and rub around.

The solution in it is a no rinse shampoo.  Very little mess and works well) I thought about Melissa Daly back at work at St. Francis while doing it, she is always making time to wash a patient's hair to help them feel better.  I kept the package it came in Melissa so I could show you when I get back to work!  Anyway, after getting some rest Kyle is feeling better today and a little more himself.

We just had to listen to Kyle's heart again today.  We are totally amazed and excited to hear no murmur and to not see it beating as we sit across the room.  Kyle enjoys listening to it also.

Thanks again for cards, packages, donations and phone calls.  We miss you all and know we will see you again soon.

Sunday December 7th

I had to post the date as the title here.  I am having trouble remembering what day it is as they seem to all run together.  Kyle only slept for about 1-2 hours last night.  I asked him if he was having pain but he stated he wasn't, said he just couldn't sleep.  We are all very tired today.

Update for today: Kyle is doing well.  He has not needed the pacer hooked up.  He got the oxygen mask with the nitric oxide stopped this am and is now on nasal cannula sating at 100%.

They changed his dressing to his chest today and I had to show them how I could do it tonight.

The chest tube drain was discontinued.  The IV in his subclavian (upper chest) was discontinued.  He is starting to eat a little.  They were worried during the night that he was getting dehydrated, he wasn't drinking much and they drew some labs to check but they were OK.  Tonight he is doing better at eating and drinking.

 He sat up in the chair for about two hours today and did so well. He also had his plasma pheresis again today and is on the schedule for it again tomorrow.  He only napped for about 1 hour today and I know he must be tired.  He has been pretty quiet today also.  This is so much for him to adjust to.  

All is going well though.  The CICU has been quieter today hopefully all of GOD's little angels here will also have a very healing night.  Keep them all in your prayers.  

  

Pictures

We have been taking lots of pictures and video.  Here a couple of picture from the past two days.  The first one is of Kyle and I right after he got out of surgery and back to the CICU around 3:30 a.m. December 5th.  He was awake some.  They were trying to keep him heavily sedated to keep his blood pressure down but he didn't cooperate real well.  A few hours later he was wanting to talk to us and we used a paper and pen to communicate his wants and needs.  Mostly he just wanted to talk.

This next picture is from today.  Kyle is still on the nitric oxide through his oxygen mask.  They are tapering it down and I am hoping by morning he will be off of it.

He still has a chest tube drain and his PICC line, one peripheral IV site, an arterial line, a central line IV and the pacer wires. He did have to go back on the pacer for a while today but is currently off of it.  He got rid of the foley catheter today also.  He is drinking a little but not much of an appetite.  He did well with the pheresis and is currently getting the thymoglobulin again.   He is also on several other medications.  The surgeon asked him if the pheresis made him feel funny as most kids are heavily sedated when they get it but Kyle didn't seem to think it bothered him today.

The ICU is quieter at the moment.  There was another code this morning.  It is the saddest place to be.  So many little ones fighting to live and so many parents who look so beaten down.

I pray for them all.  There are amazing nurses and doctors here.  They are so brilliant and work so hard.  I hope Kyle doesn't remember much about this time.  I think he might not because of some of the medication.  He did stay awake through the Northwest Bearcats game this afternoon and was happy to see that they won.  His buddy Luke Lancaster who plays for them called and left a message and when Kyle is able he is going to call Luke.  Kyle had a lot of fun playing video games with Luke when he came down to see Kyle.

Kenton and his mother are still here.  They are taking good care of me.  I feel so blessed to have them in our lives.  

I will try and wait to post tomorrow night unless anything out of the ordinary happens.  

To friends and family back home: we love and miss you.  Thanks for all you have done.

Exhausted

Just a quick note.  Kyle is now starting his second day in the CICU.  He is very tired.  He is still in and out of it.  He doesn't remember everything and I am hoping that he won't remember most of it here in the ICU.  

They started the his anti rejection  medication yesterday.  He received his first dose of IV thymglobulin.  It is a very strong anti rejection medication which can have some severe side effects.  About 2 hours after he got his first dose he started running a fever which is one of the side effects.  The doctor was considering stopping it if the fever did not stop rising but luckily it did stop rising and although he still has a fever they feel it is safe to give the medication.  He will get the second dose today.  Last evening about the same time we noticed the fever we also noticed a change in his heart rate in that he was having some irregularity.  He looked to be in a junctional rhythm.  This was not a severe or unexpected occurrence.  He still has pace wires in so they just hooked up the pacer on him for a while to help his new heart out.  They said it occurs sometimes just because of inflammation of the heart due to the surgery.  This morning they have taken the pacer off again and he is back in a sinus rhythm.  The CICU doctor who was just in told me that his urine output has been down a little.  Kyle has been complaining of some shortness of breath and is having to have the head of the bed up.  The doctor said they would probably give some additional diuretics today.  Just another expected occurrence after heart transplant.  

I was finally able to get a little sleep last night in between the CICU alarms and nurses in and out.  Last night was definitely the most exhausted I have ever felt.  

Kyle continues to have a long road of recovery ahead of him. He keeps asking when can he go home and how much longer do I think it will be.  He is awake now so I am going to read him your blog comments.  He always likes to hear them.  Keep praying for him.  It is working.

  

Update

I will do my best to post about the day but it has been long.  I have been awake going on about 36 hours with out sleep so bare with me if something doesn't sound right.  

Kyle was brought to the CICU about 3:40 a.m. this morning.  They wanted to get him settled in his room so they had Kenton and I waiting in the little waiting room off of the CICU.  We had not been sitting there too long when a "CODE BLUE" alarm went off and people began rushing into the unit.  I immediately thought it was Kyle and broke down in tears.  The ward clerk tried to reassure me that it wasn't us but the tears still kept coming because it was still someone, some little child who was in danger.  Needless to say it has been a busy and rough day here for the staff.  They have worked so hard, especially Kyle's nurse.  This morning he had a little NG tube inserted for his morning meds.  He received 3  units of PRBC's so far since surgery.  He got a unit of plasma as well as the 8-9 he got with the plasma pheresis they did this afternoon.  His HGB was down to 6.4 this am and that is why he needed the blood.  He was looking quite pale.

He was suppose to be sedated but didn't cooperate well.  Anyone who knows Kyle knows how he has the gift for gab and he kept wanting to talk to us.  I finally gave him a pen and paper and he wrote, "I love you guys so much" and pointed back and forth to Kenton and I.  We were both in tears.  He hugged the night nurse good-bye and gave the day nurse a hug when she let him have ice chips.  He was pretty restless most of the day with all of the noise and things going on here in the unit.  This afternoon they took the breathing tube out and he is on mask O2 with the nitric oxide.  There was some concern early on about the amount of bleeding from his chest tube and the fear he would need to go back to the OR.  It has slowed down though. He has had sips of water and has been talking to us this afternoon.  Finally now he is sleeping well.

This experience has been amazing.  His chest looks smaller and you can not see his chest throbbing anymore.  We got a stethoscope and listened to the beautiful quiet and normal sound of his new heart.  For 12 1/2 years he has had such a loud murmur and now it sounds so healthy.  One of the night doctors told me I couldn't stop smiling this morning. I am so happy and excited.  For Kyle it has been a good but exhausting day.  

But there is a sadness in the air as there is in every ICU I have been with Kyle.  

I found this poem by Mattie Stepanek

which for a child I think best describes what it is like here:

Intensive Sense

In the PICU I see bright lights.

But there is no sun.

and almost a loss of time.

I hear machines alarming.

But though they are ringing warnings

Lives are not always saved.

I feel pain, intense at moments.

But I also feel the hurt of anxiety,

And neither anguish is good for the spirit.

Someday I will leave the PICU again.

I will see the sun,

Rising into new days.

But I will know it must set too soon.

I will hear music sounding 

Ringing from so many instruments.

But most of all will be memories of my Heartsongs

I will feel my spirit rejuvenated,

And I will be filled with hope again.

But I will feel a sad sense of loss 

For the children

who will still be with the anguish sounding loss of time.....

in the PICU.

Thank you for your comments and prayers.  We feeling so blessed that Kyle is doing so well.

Done With Surgery

The donor heart arrived about 11:25.  Kenton and I were sitting alone in part of the waiting room and heard the helicopter come and both wondered if it was Kyle's heart and it was. 

The surgeon, Dr. Huddelston, came out a few minutes ago to talk to us.  The surgery is over and Kyle is doing well.  The donor heart started beating right away and there have not been any problems yet.  They did bring back lymph nodes from the donor that they use to check to see how strong the antibody that Kyle carries will affect the new heart.  There was a glitch with the nodes that were brought back so they are unsure about how strong the antibody is.  More than likely he will have to have the plasma pheresis daily for the additional 5 days to be safe.  They have him on nitric oxide right now to keep his pulmonary hypertension under control.  They are going to keep him pretty heavily sedated for the time being.  He is on the ventilator of course and we don't know for how long. 

 

Kenton's family took Jess with them to go get some sleep back at the Ronald McDonald Apts.

My parents told me not to worry about them and they would be back in the am.  Not sure where they are staying and told my dad I didn't like the idea of him roaming around St. Louis in the middle of the night but I'm sure he will be OK.

Kenton and I are staying here.  We can see Kyle in about one hour.  I don't want him left alone and want one of us with him all of the time.  I am still wide awake but know I will eventually crash.

Thank you everyone for your prayers today.  We are very blessed things are going so well.

Keep praying for Kyle.  He still has a lot to go through yet but he is a strong boy and he has taught us all so much.

The Day is Here

At 8:21 this morning we got the call!  We were getting around to go to our clinic appointment with Dr. Canter and Kathleen the transplant coordinator called us telling us they had a possible donor heart for Kyle.  We had 30 minutes to get to the hospital.  Luckily, Kenton has been here the past few days with us.  We arrived at the hospital and Kyle was admitted.  They did a CXR and then took 8 vials of blood for testing.  The rest of the day went rather quickly.  About 1:00 pm we found out that the donor heart did have an antigen that Kyle has an antibody to so Kyle was going to have to have plasma pheresis before the transplant.  He was taken to ICU and another peripheral IV site was started.  He was sedated and a catheter was inserted into his left groin.  The plasma pheresis took about 3-4 hours. It basically took his blood and took out the plasma, gave him back the RBC's and then he was given about 9 donor units of plasma. The purpose was help him not reject the new heart.  Not all heart transplant patients have to have this done.  This is a picture of the machine. One special nurse is in charge of this process.

They had to monitor Kyle's calcium level frequently and at one time right after the process was started Kyle started having tingling on his chest.  They checked a calcium and it was low at 2.29.

Normal for kids is 3.9-5.1.  Immediately two doctors who are in charge of the pheresis were there and he was given additional calcium through his IV.

We were finished with this about 6:00p.m.  Kyle was then taken to the OR about 6:30 p.m.

Surgery was then delayed for a little while.  I was worried because at any time during this process they can changed their minds and decide the heart is not good enough.

At 7:57 p.m. Kenton and I kissed and hugged Kyle good-bye.  I told him how lucky I am to be his mother.  He gave me "Eskimo kisses" and they took Kyle into the OR. 

Luckily, my parents, Kenton's mother, his sister, Krystal, Kenny and nephew Kody, and our Jessica were here to tell him good-bye before he went to surgery.

The nurse just came in and told us that Kyle went to sleep very well.  He is doing well.  They made the first incision 9:07 p.m.  She said the new heart should be here about 11:00 p.m.

Thank you for all your prayers, keep them coming and I will update when I can.

More Pictures

 This is Kyle making out his Christmas List.  He did this on Monday. 

Here are some pictures of our little trees we put up.  Kyle spent most of last night decorating them.  We had some little ball ornaments that my friend from work, Beth Davis, sent us.  They were perfect for our little trees.  And Beth, Kyle used all of them.  Thanks so much for them and the fiber optic tree you sent.  I got him some little tractor and fishing ornaments too.  You can see one of the tractor ornaments here.

I was trying to talk some seriously sweet pictures of Kyle putting on  the ornaments but ended up with several comedy shots like this.  This is typical Kyle.  He is not too serious!

I got a surprise in the mail this morning.  When my friends, Brenda McQuinn and Sandi Walker were here to visit, Sandi had this cute purse that I just loved.  I was so surprised when I opened a package from them this morning with a purse like Sandi's in it. I was so excited!  Thanks girls!

Isn't it cute?  I think Sandi said they found them in Stanberry at some store there.  I so love it!

                                               Finally, a picture of our finished trees.  

I love decorating for the holidays but we are going simple this year.  If we are still waiting and not in the hospital by the weekend I hope to go to the St. Louis Science Center.  They are having a Children's Holiday Festival to benefit the hospital.  They are going to have 12,000 square feet of winter wonderland with more than 70 holiday trees decorated by the area's top artists and designers.  

Kyle still has his cold but no fever.  The home health nurse just left and thinks his lungs sound clear also.  Good news.  We are trying to have him take it easy today hoping he can get over his cold.  He is enjoying his time with Kenton.  It is amazing how close they have become. 

Other Weekend Visitors and Good News for Macy!

I wanted to add that we had other visitors this past weekend also.  Dean and Tam Meyer and their children came out to see us.  They too were headed to see the Spoofhounds play football at the dome.  Thanks so much for the visit guys!

Kenton made it out last night and we were so happy to see him.  These past 3 weeks have been the longest he and I have ever been apart.  Kyle was so excited to see him.  This morning they worked on Kyle's new puzzle together.  After lunch we went out to do a little shopping.  When we got back we took Kyle down to the McGift shop downstairs.  Every year at Christmas time any families who are staying here can go to the McGift shop one time to get some Christmas presents for free.  We let Kyle do his shopping for people he wanted to get gifts for and the volunteers helped him do the wrapping. I was afraid if he goes to the hospital soon he wouldn't be able to do any shopping for xmas and this way he would be done and feel good about it. 

Tonight we put up the little trees we got.  At home I usually put up a huge tree with the ton of ornaments we have collected over the years.  This year will be more simplified though.  Even if we would get to go home by Christmas I don't think we will put up the big tree.  Too much work.   

I went over to the house tonight and was told that Macy, the little girl from Omaha, who is living above us, got her new heart last night!  The person at the house said her family got the call about 7:00pm and her dad flew out here and made it to see her right before they put her under anesthesia.  She had her surgery during the night and was recovering this am.  I had to cry.  I don't know them well, but know she has been here since the beginning of August.  I was so excited I couldn't eat dinner!  I kept telling Kenton about what we needed to get around and ready in case we get the call for Kyle.  Pray for Macy that she has a full recovery and will get to go home before Christmas!  

On a side note, Kyle has come down with a little cold but no fever.  I called Kathleen yesterday and it won't affect him getting a new heart.  She said he would have to have a bad infection before it would stop a transplant.  We bought a humidifier for the apartment and are encouraging fluids, hoping that will help.  He is faithful about washing his hands and using hand sanitizer when we are out and about.

I will try to post tomorrow pictures of our little trees.  Kyle worked quite a while decorating them and they look really cute.

Busy Weekend

   We had several weekend visitors.  My step-sister Chris and her husband, Mike came out for the Maryville Spoofhounds game.  Their son, Brad, and their daughter, Mikayla also came along.

Mikayla is in the third grade at Jefferson.  She and her fellow students worked very hard on a fund raiser for Kyle.  They had a penny war to raise money.  They did wonderful and raised a good amount of money for Kyle's medical expenses.  Mikayla brought one of the penny jars with her.   I am not sure how she carried it because it seemed so heavy to me.  Her class won the contest.  I know she herself worked very hard collecting pennies.  She is a very special little girl.  We had a great weekend with them.  Mikayla's big sister, Nicole, couldn't come because she is is nearing her due date(xmas), expecting her and her husband, Chris's first baby.  We are all very excited for them.

Two friends of mine from work, Nancy Lewis and Barb Runde came out to see us also.  They brought us many things for us to use while we are out here.  They also had gotten on the Ronald McDonald website here in St. Louis to see what donations were needed and did some shopping.

This is them with some of the things they donated.  We helped them carry it over to the house.  The House was very happy to get the donations.

On Saturday we went to Hard Rock Cafe with them.  That was a place Jess has wanted to visit.

On Sunday we went to Dave and Buster's with Mike, Chris and Makayla.  After eating and playing some video games we said good-bye to them.  They took Jessica back home with them.

It was hard for Kyle and I to let Jess go back home.  It has been 8 weeks since we came out here and we are both getting homesick.  Kyle had a hard time the past few days. The good thing is that Kenton is on his way out.  Because of the snow back home he has a few days that he can't do a lot at home so is coming out to see us.  He wants to be here on when we go to the doctor on Thursday.  

The benefit in Bedford went well.  Thank you for all those who attended and participated, volunteered and donated.  My family said it was a lot of fun!