Merry Christmas!

We hope everyone has had a fabulous Christmas! This is the first year that Ben really seemed to get what was going on. When we woke him up, he was grumpy at first, but then we asked him, "do you want to see the presents?" and he said, "Oh, presents!" And was happier. We then got the girls up and went downstairs. The first thing Ben and the girls saw, was Ben's new kitchen. Ben did not want to open any other presents. He just wanted to play with his new kitchen.We finally convinced him to open his other presents as well.

New kitchen for Christmas

He also got a Thomas movie from Santa, and reusable sticker pad from us. The girls were also excited about all of their presents from us. Kara got a new Lego Friends and something that is similar to a marble run. She has had a little trouble putting together the marble run, so she is working on the Lego Friends right now. Abby got a Gear set which she has already used to make a light and then to try to make a phone. The phone didn't quite work out, but the light did. She also got a book with 10 science experiments. She brought it to my aunt's house today and asked her if we could make some experiments there. We weren't really there to do experiments though.

Abby's gear set

Klara's Lego Friends 

We had a nice time, though it would have been better if my mom had been able to be here. She has been sick since Sunday and is still in Indiana. She will be here on Friday and we will celebrate Christmas with her on Saturday. The girls (and we) were disappointed, but they understood. Ben meandered around my aunts house today. He was attached to me at first for about 30 minutes. Then he finally let people talk to him. So, he didn't really notice a difference. On the way home from my aunt's house, we took a ride and looked at some of the Christmas lights. Now the kids are all playing with their Christmas presents. Joe and I are relaxing. I have to work tomorrow, just 2 or 3 clients, so not a busy day. From our family to yours, have a very Merry Christmas, or happy holidays, or Festivus. :)

Biopsy and ear tubes!

Ben has finally, finally been healthy enough that they scheduled him for his biopsy and ear tubes! And it couldn't have come at a better time. Just last week at his ENT appointment, the doctor said he had fluid in his ears again. So he is probably on the verge of another ear infection. He does have a little bit of a runny nose. But, they understand that they NEED to get him in for his ear tubes, so, no better time than now to do his biopsy as well.

So, we stayed at Ronald McDonald house last night, knowing it was going to be an early day today. It wouldn't have been such an early day, if it wasn't for the fact that his meds are due at 6:30 in the morning. This mean they have to draw labs before his meds are due. His procedure was not even until 9:30. Which confused the nurse as to why we were there so early. He escorted us back and said "you know, you're a little early?" I said, "Yeah, they told us we had to be here at 6:30 for his meds draw." He said, "oh, yeah, they won't do that until around 9 though, but you can come on back." I had to explain to him that no, they in fact needed to do it right away or his prograf level would be off. He got a lab tech up there by 7.

SO, after his labs, we had quite a while to wait. I had given Ben some jello at 6:15. He was allowed liquids all the way up until 6:30. He was able to be held over by that until about 8:30. Then he was pissed and wanted "a food" and " a pretzel". We wandered the hallways a lot!

I'm outta here!

Ben seemed to think he could just leave and go get his own food ;)
He had a really great APN that took care of him. She even got down on the floor to examine him, since he was so crabby and didn't want to get back in bed. And she examined his Thomas train first, and then examined Ben after.

Thomas has an exam

Then Ben has an exam

At about 9:30 Ben was called back. He had already had some meds to calm him down and was sleepy. But, he still cried when they took him away. Everything took about 2 and a half hours to do. The ear tubes were the easiest part. His cath and biopsy went smoothly as well. He did have some mild rejection. Status 1a. They do not do anything for this. They just will monitor him more closely. If the rejection worsens at all, they may add in a steroid, or up his immunosuppressants. But, for now, we are just monitoring him and calling if he has any new symptoms at all. It's so hard with a kid his age though. We have to be extra vigilant, because, he can't tell us "I have chest pain" or "I'm feeling kind of out of breath" or things like that. So, we have to look for things that are out of the ordinary.

When he came out of surgery, he had to lay on his back and stay still for 6 hours. I know! HAHAHAHAHA! I was highly amused as well. It was not easy keeping him still. And at one point, one of the APN's was in the room with me when he kept just using his ab muscles to get up and the his nurse came in and said "mom, he really has to stay on his back." I said "I know, but he keeps getting up! If you can make him stay down, please do!" The APN said "I saw him, he just used his abs to lift himself up, she didn't lift him up at all." So, they really strapped him down, and gave hum tylenol and he slept for 3 hours. Then it was time to go get an x-ray and go home.

Eating chicken nuggets on the way out

The next day, he was playing, albeit a little slower, like nothing had happened. He still has a bruise on his legs from where the cath was done. Darn aspirin! And we think he got a big bolus of antibiotics during his ear tubes because he had some horrendous diarrhea for about a week following the procedures. And now it is gone. But, other than that, he did very well!

Playing in the snow the next day

Thanksgiving and putting up the tree

Ben celebrated his first Thanksgiving feast at his school. Well, he celebrated last year with his sisters, but this was the first time he got to take part as part of a class. He made his own hat and everything! And he got to help his class make applesauce. He had a fun time helping out and also helping find garbage to clean up afterwards. We celebrated Thanksgiving just the 5 of us at home.

Abby and Klara helped with the green beans. They helped snap them apart and put them in a colander. Ben helped by watching and staying out of the way. :) We had a nice Thanksgiving and enjoyed some hot chocolate after dinner and watched a movie. We Also visited with my mom and grandma yesterday. Abby interviewed my grandma for a family tree she has to do. Today, Joe took Ben to get his second haircut. It was time, his hair was getting long enough that people were asking if we had 3 daughters. So, while they were away doing that, the girls and I put up the tree and some of the more delicate ornaments.Ben was so excited to see the tree when he got back home. And of course, he put some of the less fragile ornaments on as well.

Abby putting on some ornaments

Klara putting on ornaments

Then we got to visit with my mom and aunt and some of the kids cousins that they don't get to see as often, because they live in Nevada. They had a very nice time. So nice, Klara did not want to leave. Ever! So far, Ben has been doing pretty well, health wise. He has an ENT appointment this Friday. They will decide if he needs tubes or not. Because of the fact that he has been getting such frequent ear infections the pediatrician referred him to the ENT. If they decide to go ahead with the tubes, they will also go ahead and do his heart cath and biopsy at that time. We are hoping to be able to get it done the first week of Jan. That way he has had off for Christmas break and can stay healthy because he won't be around kids much, if at all, and have less of a chance of getting any bugs. Hopefully we can keep him healthy enough to get everything done. If not, well, there is always spring time. Happy Thanksgiving to everyone!

Ben's second birthday

Happy birthday to Ben!

It has been a whirlwind 2 years! He woke up this morning to his favorite, chocolate cheerios

Then later for dinner had his favorite PB&J















After dinner we sang happy birthday. Well, first, Ben had to Shhh his sisters so we could get started.

We weren't able to go anywhere special for any of the kids birthdays this year due to how many illnesses Ben has come down with over the last 3 months. So, we celebrated at home. After Ben was done Shhing his sisters and they quieted down, we sang Happy Birthday. Ben even sang a little too.Then, he dug in to his cupcake. Joe got him a cupcake from Panera and the girls each a brownie

Yummy cupcake!

Almost done!

All finished! 

He had a really great night despite not going anywhere special. The next day he went to school and we brought 3 pictures in and his teachers did a walk around the sun with him. I haven't gotten the pictures from that yet. But will post them when I do!

No biopsy, again

Well, the biopsy was cancelled once again. This time for a cold. But, it wasn't cancelled outright. I had posted how at first the cardiologist said that Ben should be ok to have it if he was just having nasal discharge and a cough. Well, on Wednesday I got the pre-op call from Lurie. The receptionist went over everything and asked "is he ill right now with a cold or fever?" I said "yes, he has a cold. But, I had talked to cardiology on Monday and they said he should be fine to go ahead." She asked if it was a wet or dry cough. When I told her it was a wet cough, she replied "well, they are most likely not going to do it with a cough and nasal discharge, but they will want you to come in and be looked at." I told her "well, no thank you. If it is most likely not going to happen, I am not driving 2 hours to be told no, it's not happening. We will just cancel." So, she let me know that a nurse would be calling me back. She then called me 5 minutes later to tell me she had paged the nurse to call me, but that they had a note in the computer that they had talked to me on Monday and knew he had a cold, and they wanted him checked out even if they did not go ahead with the biopsy. I told her "I understand what you are saying, but I really can not afford to drive 2 hours, pay for Ronald McDonald house, pay for parking and come in all while KNOWING you are going to say no it can't be done. I want to cancel if you are pretty sure it won't be done." I think she was a bit irritated with me at that point.

After a bit of confusion on their part with the nurse calling Joe back instead of me and trying to schedule the biopsy for Halloween (also Klara's birthday!) and then trying for the next day, I finally got hold of the scheduler. We have the biopsy now set for Nov 21st. I am not even holding my breath that he is going to make it that long without getting another cold though. He is in the toddler classroom. He has 2 sisters that go to school. We go shopping. He is exposed to germs everywhere. And, his teachers are amazing! One of the teachers that helps out in his class told me, "I was supposed to help out in Ben's class last week, but I asked Miss L to help instead because I had a cold and didn't want to get Ben sick." So, everyone really tries to keep him healthy. He just is around a lot of kids, and being immunosuppressed, he is bound to get every single germ. It was funny, when I talked to the scheduler, she was the same one I had talked to the last 2 times we rescheduled. She told me, "I thought you were going to put him in a bubble!"

So, now we are doing our best to keep him as healthy as possible, as well as get him over this cold as soon as possible. And, it makes me a little sad. Yesterday, I was able to take Klara and Abby to the Halloween Happenings at the Park District. Klara has a bit of a cough too, but she is able to cough in to her arm and avoid germs a lot better than Ben. Ben could not go. There was too much risk of him getting or giving germs. More risk of him getting more germs though. Same thing with tomorrow, we were invited to a friends first birthday party and we can not go because Ben is STILL sick and Klara is still coughing. It's just things like that that make me sad. He takes so long to get over things and he has to avoid so much and miss so much because we need him to either get or stay healthy. He also missed a friends second birthday due to illness a few weeks ago. There were so many little kids playing games yesterday. I kept thinking, "man, I wish Ben was better so he could be here and enjoy this. He would love this!" It just made me a little sad not to have all of the kids there.

Add to that, we will probably need to take Ben and Klara in to the dr either tomorrow or Monday (yes, our dr is open on Sundays. How awesome is that!?) and it gets a bit frustrating sometimes. Still, we are glad for how well he is doing, overall. Even with being sick, he doesn't have a fever this time. So, no need to be admitted, yet. And he is pretty happy, even with waking up coughing multiple times a night. Although now he is getting kind of cranky and pulling on his ears. He is really tired, but keeps pulling his ears. So, we will most likely take him in tomorrow instead of waiting until Monday.

So, now we wait. We wait until tomorrow to see what the dr says. We wait to see if he is better in time for his biopsy. We wait and see if he catches anything else. We wait for Nov 21st and see if we can have the biopsy then. Crossing fingers once again.

With his silly sister, Klara

One week

We have been okayed to go ahead with Ben's biopsy next week even though he had antibiotics in the hospital while he was inpatient over the weekend. As long as he does not get any fevers, or come down with another illness. So, we have one week left until biopsy time. One more week. It is scheduled for next Thursday, Oct 24. We are still on the schedule to be at Ronald McDonald House next Wednesday evening for a (hopefully) early morning biopsy on Thursday. I am crossing everything that I have that he will make it to this biopsy without getting sick again. We have already cancelled 2 biopsies. He is now about 2 months behind schedule for his biopsy. I guess the good news with him being admitted at Lurie this weekend is, since he was there, his cardiologist was able to do an echo and EKG and labs, and they got a good look at his heart and cardiac wise, he looks great. His BNP looked the best they had ever seen it. So, he is now looking really good, except for a minor cough. We are hopeful that now his biopsy can actually happen this time. It is important for him to be able to get these done so they can check for rejection and check his coronaries. The EKG and echo are good, but not as good as looking with the biopsy. It makes us feel better every 6 months to hear that everything is ok, and there are no signs of rejection. Especially with how sick he just was. I really would like to get this over with and know that there are no signs of rejection at all. Cross your fingers, everyone!

Discharged from Lurie Children's

So, on Friday, Ben still wasn't getting any better. He still had fevers that were not being controlled by Tylenol. He also started throwing up after every dose of iron. He also was not drinking or eating very much. I called the Cardiology APN to see if we could hold iron to see if that would help his appetite. We got to discussing the situation. She called me back a few minutes later and said our cardiologist wanted him at Lurie. They wanted to make sure that his fevers were not heart related-possibly rejection or a heart infection. So, Klara and I went off to Lurie with Ben. Abby was at school. Joe arranged for her to stay in after care and he picked her up later. I have to say, for having to stay in the hospital with me and Ben for over 7 hours, Klara did amazingly well! She played a bit on the iPad, watched some tv, had lunch and dinner there. But she was amazingly well behaved.

When we got to the ER, they got us immediately back to a room. Ben still had a fever even though I had given him tylenol about 2 hours before that. They started with taking blood for labs and swabbing his nose for viral infections. Then they started up some fluids. The cardiology fellow came in to talk to me a little bit later and suggested we put him on antibiotics, *just in case something grows in the bacterial cultures*. I did not like this idea at all since he had been on antibiotics SO much over the last couple of months and I let her know .She was sympathetic and said we could wait a bit to see. The cardiologist and a whole team of people came in a couple of hours later. The cardiologist also wanted him on antibiotics in case something grew. He was very very definite about this. Because of his immunocompomised status, he didn't want to wait the 24-48 hours for something to grow, he wanted to start them right away. I was very unhappy with this, but decided to do it.

About 5 pm, we got up to our room on the CCU. Klara was actually, technically, not allowed up there because Ben was on isolation precautions. But, being that we had come through the ER and I had no where else to put her, they understood. And she stayed until 8 when Joe picked her up. When we got up there, I again wanted to talk to the dr, because in the ER, they discovered Ben had thrush. Which is due to antibiotics. My thinking, why give more antibiotics? Obviously antibiotics are causing bad things. And, today (sunday) we found out that nothing grew anyways. Which makes me more frustrated that they gave antibiotics for nothing.

Feeling pretty sick

Friday he was very sick looking. Saturday morning and part of the evening he still seemed pretty sick. BUT, he had his last fever register at midnight Friday/Saturday. So, that was good. By this morning, Sunday, he was doing a LOT better. He was stealing Joe's breakfast. When I got there he was sleeping. But, when he woke up, after resting a little more, he was hungry and ate 2 and a half chicken nuggets and 10 tater tots and some fruit snacks. He also drank about 4 oz of water. He was doing really well and his fever had not really come back. The doctor decided that we could go home today. We left around 6 pm today. On the way home, he was laughing at Abby in the car. He was SO happy to be unhooked from all of his wires. He is sleeping now. Has been since around 9:30. Hoping he will sleep the rest of the night. He still is a little weak. He doesn't really want to walk anywhere and he sits down. We have to have labs done and follow up with the pedi this week. We are just so glad to be home!

Ready to go home!

Day 3 of a viral illness

Ben and Klara went in on Monday, Oct 7, to have their ears checked to make sure everything was ok after they had both had double ear infections. They were both pronounced over their ear infections. Ben still had a little fluid in his ears, but nothing that was looking infected. Just left over fluid from his ear infection. Klara was totally fine. I mentioned that that day he had been running a low grade fever of about 99.5 and had been acting kind of lethargic. Just generally laying around. His appetite had slightly lessened, but nothing terrible. The dr looked him over really well. His heart rate was a tad elevated, but nothing worrisome. She sent us home and told us we would have a very low threshold for coming back. Any higher fever, any vomiting, more lethargic or not eating or diarrhea and she wanted to see him again. She also suggested keeping him home the next day even if he was feeling ok, just to get him over the hump.

Well, the next morning, around 7 am, he spiked a fever. It was 101.5. I gave tylenol and watched him. He only ate 2 mini muffins for breakfast. I called all my clients that I had scheduled that day to cancel. I, obviously, was not bringing him to school, and was going to need to bring him to the dr. For lunch, all he ate was a small bowl of cereal. After his nap, at 1:30, his fever spiked to 102.5. I gave tylenol again. Our appt was at 4:10. We got there and his fever was still at about 100. The dr looked him over. He was really lethargic by then. She was checking him over and he was pretty much just sleeping in my arms, which she did not like. So, Dr. B called the cardiology fellow to let them know what was going on. She came back in and told me, "well, I called the cardiology fellow and I didn't like what he said, so I made them get Dr. G on the line. I asked what was said and apparently the fellow wanted us at Lurie for a 48 hour admit and Dr. B advocated for us and said "no way. That is unnecessary. This is looking very much like a viral process which can be handled with labs and chest x-rays and if necessary we can have them go to CDH." Dr. G agreed with her (we love our cardiologist!) and said we could take care of everything in the suburbs. Dr. B thought it would be a good compromise to go to CDH ER and get some rehydration as well as get the labs and x-ray done there.

So, off to the ER we went. But, first, I took all 3 kids home to get Ben's meds. I did not know if this would be an overnight admit and I wanted to be prepared. I like to make sure I have his meds with me just in case. Sometimes the ER doesn't have them right on time and I can just give them out of our stash and keep theirs when they eventually come up. We got to the ER and Ben was NOT happy. Once he realized what was going to happen, eh started screaming. But, once they let him eat, he did eat 8 chicken nuggets. So, at least that was progress. They had a child life specialist come in and she was GREAT with all 3 of the kids. She brought the huge bubble machine and an iPad and played Elmo for Ben. It helped a little, I think, when he had his IV put in. They got him rehydrated and got labs done. The labs showed he was definitely dehydrated and definitely has a viral process going on. Which one, could take 24 hours to determine. So, we were sent home (see! No need for 48 hour admit!) with orders to keep up with tylenol every 4 hours. And when they say every 4 hours, they mean it! I missed his 2:00 am dose by 30 minutes. All of a sudden he woke up and started throwing up and was burning up. Temp was 102.5 on the thermometer, under the arm. Gave the tylenol. By 3:30 it still was 102.5. I stripped off all his clothes, down to his diaper. By 6:30, it was finally down to 101. Gave his 6:30 dose of tylenol and Joe said after that it stayed pretty low.

During the day, he had been reasonably ok. But, not eating a ton of food. And, as soon as his dose of tylenol is due, his fever starts creeping up. He was looking pretty good around 6, and I thought, "hmm, maybe I can see if we can skip his 6:30 dose. He looks ok." Sure enough at 6:25, his fever crept up to 100. So, no skipping that dose. I gave that, along with his other 6:30 meds, which include cellcept and iron. (we are skipping aspirin until he is fever free-off of meds- for 48 hours). Then exactly 20 minutes later, he threw up. A lot! So, I called the on call cardiologist, who said to redose only the cellcept, and if needed the tylenol. So now, I wait. to see if the fever creeps up to where he needs more tylenol. I am hoping he absorbed enough that it won't go back up. And I am hoping some good sleep will help him geto ver this tonight.

Canceled biopsy

Ben was supposed to have his biopsy this Thursday, Sept 12. Unfortunately, it has been rescheduled. He has had a long month of illnesses. It started off with a simple cold that turned in to a sinus infection, which they also were riling out pneumonia. He was on breathing treatments and antibiotics and probiotics. As of last Thursday, Sept 5, he was pronounced good to go. And he looked really good. We were all set to attend one of his little heart buddy's birthday party and then school for the week and then his biopsy. Unfortunately, those plans changed.

On Sunday, very early morning, around 3 am Ben spiked a fever. It was not too bad at first. Around 100 degrees. But, we obviously could not go to his buddy's party. She is also a transplant patient and can not be around anyone who is sick. At the time, we had no idea what the fever was from either. Could have been teething, or he had recently started on an ointment that had fever listed as one of the rare side effects. That day he continued to be crabby and his fevers got higher and higher  until at one point they got as high as 101. We gave tylenol at that point and watched him. The next morning, we knew we were not taking him to school anyways, so we called the pediatrician. That morning around 4 am, his fever was 102.5. He was able to see him later that night and diagnosed him with an ear infection. How he got an ear infection after being on antibiotics, who knows? Maybe it was a viral one? But either way, he is now on Amoxicillan for 10 days. He was on cefdinir before for the sinus infection. But, after about the 11th day on it, his mouth started bleeding every time he took it. So, they didn't want that one again, and it probably didn't work for the ear infection, especially since the dr said it was a pretty bad one.

So, he was home again today. He had another fever this morning at 5 am, of 102.5. He has been pretty tired most of today and threw up once at 7. Though we think this was due to forgetting to give his meds with food. Won't make that mistake again! We are hoping to have him back at school tomorrow. He is looking better now. But, if he spikes a fever again at all, obviously we will keep him home. Also, the dr wants to have him get labs done if he has anymore fevers. So, he wouldn't be able to go to school if that needs to happen. We are waiting to find out when we can reschedule his biopsy for. The dr likes them to be off antibiotics for a certain amount of time before doing the biopsy. So, we have to wait to find out. Just one more bump in the road. Hopefully this is the last illness and he can stay healthy until his biopsy!

"I wear green for the organ donor who saved my life!"

Sick again, or is it still?

So, we knew that there would be germs coming home from everywhere. School, me working with young children, possibly Joe (though that's less likely) the girls classroom. Ben has once again gotten another cold. Though, this one seems to be hanging on a lot longer. He has seen the pediatrician many times so far. The first time was because we got an email from the director of his school stating that roseola was in his classroom. Well, w took him to the pediatrician that day due to him having some congestion and being worried since one of the symptoms of roseola is congestion and a cough. The pediatrician said that it was not roseola, but just a cold. That was Aug 12.

When he had not gotten any better, about 10 days later, I took him back. Because he is immunocompromised, they decided to start him on antibiotics because it looked like his cold was heading towards a sinus infection and it was better to head it off sooner than later. They also started him on breathing treatment. We started doing a nebulizer 3 times a day. Oh man, he did not like that at first! We had to hold him down. Now, he will usually watch part of a cartoon while I do his treatment and sit still. But, he still tries to take it off after about 5 minutes, and tell me "all done!" It takes 10 minutes, so we can't just be "all done" after 5 minutes :) We also have followed up every 2-3 days with the pediatrician. Well, he is still sounding junky in his chest. So, we had a follow up again tonight. The pediatrician said he looks pretty good overall, but he still sounds junky and she would like his cough to be sounding better. So, now we are going to have an inhaler with a spacer to take with us when we are out and about and also possibly leave one with the school if he isn't getting over this cold soon. We also have to follow up again with the pediatrician in a week, once he has finished his antibiotic to see if he is any better. She is hoping once has finished the full course that he will be a lot better. I'm crossing my fingers. But, I'm unsure. I mean, if he has had almost a weeks worth of antibiotic in him and isn't better, well, how much better is 10 days worth going to get him? But, we will hope for the best.

So, needless to say, colds suck for this little guy! And as if that wasn't bad enough, not only did he get a cold and have a miserable time of it, he is such a giving little kid, he decided to share it with me. And, it couldn't just stay a cold, nope. I had to have it turn in to bronchitis and asthma exacerbation for me. Which came with it's own set of medicine's and medical bills. Luckily, the pediatrician said Ben's x-rays did not show any bronchitis or bronchiolitis, and she did not hear anything in him that would indicate such things. It also did not show any pneumonia, or an enlarged heart or anything like that. So, everything looks good on that end. He just can't kick this cold easily because he has a very low immune system. And, that will probably be what happens for the rest of his school days. One cold after another. Hopefully, when he gets over this cold he can stay well for a good long while! He has his biopsy coming up on Sept 12, and we need him to stay well so that we don't have to reschedule that.

getting his breathing treatment

Reaction to the news article about the GA teen denied a heart transplant

So, this article http://www.foxnews.com/health/2013/08/13/atlanta-teen-being-kept-off-heart-transplant-list-family-says/ has been all over the news and FB, and I am sure, twitter and any other media outlet, today. It's a sad story indeed. A 15 year old GA boy has been denied a lifesaving transplant. It appears his diagnosis is most likely Dilated Cardiomyopathy, from what I can gather from the article. It also appears he only has 6 months to live. I sympathize with being heartbroken and wanting to do anything and everything you can to get your son that heart. Really I do.

What I do not sympathize with is trying to put the blame on the doctors for not listing him. And, this is the part that has me a bit fired up! Yes, it was the doctors choice not to list him. But, not for the reasons in the article. And it was not due to race, bad grades or a prison record. No good dr, (and from what I hear, Children's Hospital of Atlanta is a really good hospital) would keep a child off the transplant list just due to bad grades. That is a ridiculous thought. Nor would they keep them off the list due to their race. That is also a ridiculous notion. If they were a current prison inmate, I can *maybe* see that being a problem due to there being so many cardiology visits. This was none of those things though. This was due to non-compliance. Current non-compliance with medicine. He has (most likely) dilated cardiomyopathy. He is most likely on many meds and sees a cardiologist.

The mother admitted, in a few other articles, that he was non-compliant with his medicines. The mother also states that they would not be able to go to the dr appointments due to not having a car. She also states that she thought that the dr's were afraid that they would not be able to afford the medicines. Now, the medicines can be quite costly the first 6 months or so. There are a LOT of them! But, from my understanding, you can usually work something out with either medicaid or another insurance plan. The pharmacy also sometimes has copay cards that help out with payment of the medication to make it cheaper.

The appointments are another thing. If you are not going to comply with either the medicine OR the appointments, then yes, they are going to deny you a heart. The first 3 months, there are quite a lot of appointments. We took Ben twice a week the first month, then once a week the second month, then twice a month the 3rd month. And so on. If she is already stating she won't be able to go to doctor appointments due to not having a car, and apparently does not have a lot of money (therefore a taxi is most likely out) I am guessing they would be non compliant with appointments as well.

Therefore, all these things together lead me to believe, that in fact it is not the teens grades or race that lead to the doctors decision to not list him. It was the teen, and parents non-compliance to transplant life. When you are listed you go through a series of interviews with a social worker. They ask many personal questions, they talk to you many times, they make sure you are mentally and emotionally ready for the life ahead. If you are not, you will not be listed. You go through interviews with a financial advisor. They make sure you are of financially stable and are set up with some form of insurance, whether that be medicaid or a private insurance plan. They make sure you are going to be able to pay for the medicines and be able to attend all appointments on time. If you can't, they may help you out to find funding to help pay for everything. If there is no way to pay for the transplant, you may not be listed. You also talk to a transplant pharmacist who will tell you all of the medications you will be on (or in our case, your child will be on) and make sure you will comply with that and that you will take them on time all the time and that you will come in for monitoring as needed. If you are not willing to do this, you will not be listed. Our transplant pharmacist actually told us, "90% of my day is spent counseling teens on why they NEED to take their medicine." You also meet with the transplant APN's on a daily basis to talk about any concerns you have.

ALL of these people are constantly assessing your ability to care for your (or your child's) impending gift of life. If you are unwilling to comply with all of the rules, then they will find someone who will, to give that very precious gift to. Every day 18 people die waiting for an organ http://www.organdonor.gov/index.html 119,163 people are waiting on an organ right now. The doctors that are looking to list new people on the transplant list are not going to list someone that has already been shown to be non-compliant with his medicine regime. And whose mom has said she would probably not be able to make it to all of his appointments. Here is one article, detailing what happens before you get on the transplant list http://www.ucdmc.ucdavis.edu/transplant/learnabout/learn_eval_process.html Based on number 11 and 12 alone, they would be ineligible, from the articles I have read about the family.

So no, this was NOT about race. It was NOT about bad grades. It was NOT about a previous prison record. What it is about, is the rules for transplant. You must be compliant. You must follow the rules. You must work with the doctors and take your medicine and attend all appointments. Again, I am very sorry that the family is facing such sad circumstances, and I hope the best for this teen. I hope that they are able to find something to help him live as good of a life as possible for as long of a life as possible. Hopefully even during this time he can receive medication counseling and they can put a plan in place to help him and his family so that he CAN get on the transplant list. But, until then, I wish the best for them.

It's been a pretty good month

I last wrote right after Ben's clinic appointments. I just realized I haven't updated in a while. Ben started school the first week of June. We liked having him start in the summer because there are less kids there and it's less likely he would catch anything serious. So, we could get him used to being around other children and other germs. The teachers are so wonderful with him and extra cautious about sanitary precautions. I watched one day while he was eating breakfast there (we had been running late and he was sleepy and didn't eat at home). Another child tried to come up and  take his breakfast and the teacher was right by Ben and not letting the other child touch his bowl at all. The also take any toys that are mouthed at all and put them up high where the kids can't reach them until a teacher is able to sanitize it. Ben did catch a cold within a few days of starting school, which we kind of expected. His cold lasted about 3 weeks. But, he seems to be feeling better from that now.

The teachers are also really good about not calling us about things that are medication related. One example is, they have a policy of if a child has diarrhea, vomiting or a fever, they must stay home for 24 hours. Well, Ben's meds make him have diarrhea all the time. So he would never be in school if that were the case. We had explained that to the teachers and they do not call us for that. But, there was an incident where he did throw up a lot at school and had to stay home the next day. We think it ws mot likely due to phlegm because he still had his cold at the time, as well as possibly from the meds, since they can make him nauseous. Now, if Ben is just a little spit-uppy or has a tiny bit of vomit, they don't call us, but if it is a lot, they still call us due to the fact that it could be illness related. We still do have to rule that out with him as well since he easily catches any GI bug around, unfortunately.

In other good news, Ben saw his physical therapist on Thursday. It went very well. He had recently gone down from once a week to twice a month. Well, when she came in and saw him running around and picking things up off the ground and able to throw a ball to her and many of the other tasks she had as goals for him, she was just amazed. We decided that we are going to go down to consult only for now. We can always go back to weekly or bi-weekly if needed. But, she told me, "this is NOT a kid who needs weekly or even bi-weekly therapy anymore. But, I definitely want to keep tabs on him." So, she will be emailing me some exercises to do with him to increase his low trunk strength and help with his pronation in his feet. But, other than that, she will only see us every other month, just to check in and make sure he is still on the right track and doesn't need orthotics or further therapy.

All the kids also just completed one session of swimming lessons and have just started another session. The girls advanced from level 2 to level 3. They are now jumping in the water and swimming back, with the help of an instructor. They have to go under water numerous amounts of times and have to float. They are really loving it. Ben is still in level A of the babies class because he does not love going under water as much as his sisters do. In fact, as soon as I give him the prompt to go under water, he starts screaming and clawing for me. I don't think he's going to advance after this session either. But, we will keep trying. I want all of the kids to be comfortable around the water. And, Ben is pretty comfortable, as long as no one makes him go under :)

We also had some fun at my mom and stepdad's house for the 4th of July. The kids got to spend a lot of time with their grandparents and cousins, who happened to be staying there for the summer. And they got to play outside a lot. We also let them stay up late and watch the fireworks. All 3 kids loved it. Ben kept saying "wow! pity" (His word for pretty) I was glad we got to stay for so long, not only because I love seeing my mom, but because the first day, Ben was a little skittish and nervous since it had been about 2 months since he had seen her. But, by about the second day he was fine and having a ball. the girls, of course, know their grandparents and remember them no matter how long it has been.

So, that has been our month. It has been pretty good. Hoping that the rest of the month goes just as well!

Benjamin-Heart hero!

NICU follow up/Kidney Clinic

On May 29 Ben had his NICU follow up and Kidney clinic. Well, Joe and I both thought it was a good idea to get both over with to minimize times going downtown. Yeah. it saved us gas. But, not frustration. Ben was not a happy camper by about 12:30. His NICU follow up was at 10:30. I dropped the girls off at school at 8:30 and he slept the whole 2 hours until we got there. Well, it was about an hour and 45 minutes until we got there, then another 10 minutes to actually park and get in to the hospital.

I gave him a snack inside and the nurse weighed him and measured him. 9.74 kg or 21.42 lbs and 31 and a half inches. This is important to note, because when we went to kidney clinic later, they weighed him again. The NICU follow up is basically the same as his annual assessment through EI. There was an occupational therapist, a Speech therapist, a Physical therapist and a doctor ( a doctor does not come out through EI).

The OT went first and he performed best for her. He was talking to her a little bit. Well, as much talking as he does. Telling her hi, no no, bye bye, more. She wanted him to get a duck out of a clear box that was only open on one side. The open side was right in front of him. Ben kept trying to use brute force to get it out. trying to lift it up, o push her hands off, or bang it. Finally, he figured it out and got the duck. She had him do some other tasks like pretending to feed a baby. He had to also stack some very small blocks, which he stacked 8 of (his age should be able to do 3-4). She also had him try to draw with a crayon, he made a few marks on the paper and that was that. He wasn't very interested. Possibly because every time he gets a crayon, his sisters yank it away and say "no, no crayons for you! You'll eat them!" Might need to work on that...  Overall, he performed very well for her. Then the speech therapist came in and he would not talk for her at all. She tried engaging him, but he would not say a word. Of course. SO, she did everything via parent report. After her, the dr and the PT came in together. The PT wanted to see him walk, but Ben was not having any of that. Every time I would put him on the floor, Ben would scream and tell me "up up! mama! no no!" Oh sure, talk when the SLP is gone, and then you won't walk when the PT is here! The PT did see him standing and measured his legs, and a few other things, however they do that. Then she left and he told her "bye bye!" The dr stayed, and we were talking about his recent admissions and such. And OF COURSE, Ben sees blueberries in the stroller and WALKS right over to them and gets them and brings them over to me! Of course, the PT was gone for this! The dr just laughed and said, "don't worry, I'll tell her."

So, after all of that, Ben was exhausted! That took about 90 minutes. They came back and gave me the results. Everything came back in the average to above average range. Except speech. He is in the low-average range for speech and they just want to keep an eye on his speech. If at 2 years old he still doesn't say 2-word phrases or doesn't follow 2-part directions and doesn't have at least 50 words, they want EI to evaluate him again. They also are glad PT is still following him. His walk looks good, but it's always good to keep up with PT. So, our next appt with NICU is in December. I am going to make sure there are no other appt's following it. That is too much for him. Especially with missing a nap.

After that, we went and got some lunch. Ben had had quite a few snacks during the NICU visit, but was still hungry. He had some yogurt with bananas in it and some bread. But, he was also getting very tired. He started just randomly throwing any food I would give him and screaming. When we were done with lunch we went back to Kidney. That was a much shorter visit. But, Ben screamed pretty much through the whole thing. The nurse weighed him for that one and he weighed 10.12 kg. or 22.26 lbs. Somehow he gained almost a lb. Probably because she didn't make me strip him since he was a screaming flailing about baby. :D She also took his blood pressure and it was 140/100. Higher than mine even is! She wrote in the notes "Patient is crying and extremely fussy. Mom reports he is tired." Yeah, that is not his normal BP. Never could get one. He wouldn't settle down. His norm is like 85/50 or so. So, we went to see the dr and they said he is looking really good kidney wise. His levels are really stable except when he gets a GI bug. Then his Bicytra levels dip down. They are going to repeat labs at the same time he has labs for cardiology. Depending on those levels they will determine whether they can lower his cytra he is on. or possibly take him off it except when he has a GI bug. AND, he only needs to see kidney once a year now! Hooray! One less appt to deal with. Yay!

So, all in all good news for the day. We were done there by 2. Got our discharge papers and left. By the time I put him in the car at 2:20, he was about to fall asleep. So, I gave Ben his meds 10 minutes early and he was out. Crashed completely and did not wake up until 4:30 when Joe picked him up from me. Like I said, it was a long exhausting day!

Having a snack before the OT came in

Practice day at school

So, this past Thursday, May 16th, Ben got to have a practice day at Montessori. They wanted him to have a little time in the classroom to test it out and see how he would react. Just to get him used to the idea of being in a classroom and around other kids. Well, he did fabulously! In fact, he walked in like he owned the place. Abby and Klara walked him in to his classroom because they were afraid he would be scared and they wanted to help him. Well, Ben walked in to the class, slapped his hand on a table and said "HI!" to the entire class." When no one really responded, he screamed a little louder, "HIIIIII!!!" Then a few kids came over, and the lead teacher came and introduced him to them. Ben grabbed a toy and sat down and got started playing. It's like he had been there all along.Then he looked at the  teacher, waved and said "bye bye!"

The teacher and I observed him. Ben would look back at me every so often to make sure I was there, say "mom?" and go back to what he was doing. He explored a few different toys, spent a few minutes in the gym (he didn't like the gym very much. Which is ok. Some kids don't like it.) and "talked" to some of the other kids. The teacher and I also talked over their procedures and how they sanitize everything. She mentioned that if a child mouths any toy, they immediately take it away when the child is done with it and put it away for sanitizing later. So, there is little chance Ben will get germs that way. There are 3-4 teachers in the class at any given time, depending on numbers. They also sanitize the toys at least once a day. And the whole class is up to date on their vaccinations. The director will be sending out a note at the beginning of the year, stating that there is an immunocompromised child in the class and that if their child comes down with anything more serious than a cold, they are to call her immediately. Even on the weekend. This way, we can call the transplant team for advice.

We only stayed for an hour on Thursday, though I am sure Ben would have stayed the whole day if I would have let him. We planned that his first 2 days will only be until 11:30. That way he gets used to it in smaller doses. Then Monday June 10, will be his first full day. With naps. On a nap cot. That should be interesting. I did mention that he still sleeps in a crib and the teacher said they would work with him. They have other kids that start out not really wanting to sleep, but give in to the peer pressure. Here are a few pictures of his first practice run

Playing with stacking rings 

Putting coins in the fish

Watching the ball go down

Ups and downs the last few weeks

So, Ben has had some ups and downs over the last couple of weeks. He started off about 3 or 4 weeks ago with a cold. We knew what we were in for, as he never gets over those quickly. We prepared fo at least 2 weeks of him having a cold with the usual symptoms of nasal drainage and coughing and sneezing. I think it may have been made a bit worse because the pollen count was so high as well during this time. Well, he never got over it. It just kept going on and on. And then eventually he got so phlegmy that he was vomiting because of having phlegm in his throat all night long. Finally I took him in to his pediatrician who also diagnosed a GI infection as well as a cold. She wasn't sure if he had a GI infection, but gave him zofran anyways. It seemed to help. Meanwhile, he had his neverending GI issues that are due to his medicines he takes.

So, we started him on zofran. It seemed to help. He really only needed it in the morning, when he was most phelgmy from the cold. All seemed to be getting slightly better. He even seemed to be eating slightly better and resting a little better at night. Then last week we had a really exciting week. Not in a good way. Monday was when our pediatrician saw him and put him on Zofran. Then later that day, his sister was pushing him in the stroller and accidentally pushed him over a bump and he went down flat on his face, the stroller went on top of him, and she went on top of the stroller. There was blood everywhere. Bruises and cuts all over his face and arms and I could not tell if he had a concussion or injury to his teeth. So, off to the ER we went. All 3 kids and me. Joe met us there shortly after we arrived. We were there for maybe an hour, if that. The dr informed us that his biggest worry was if he had impacted a front tooth. The front of the skull is the hardest part, they worry more when they injure the side where it is softer. So that was good. No major injuries and he has healed up nicely from that.

Thursday, back to the dr because he was sounding yucky again and he had a fever as well the night before. The dr wanted to run some labs because his lungs sounded a bit junky, plus him having a fever was concerning. But it sounded junky higher up, not in his lungs, so she was not concerned about pneumonia. We did those labs at the hospital, so we went to the hospital after school. That was a mess. We decided to come back after gymnastics. Joe met us there later. Apparently it took 3 sticks and 2 different techs to get the blood from him.

The next day,  Friday, I had to take Klara for an ear recheck, so I asked about Ben's labs and they said everything was clear. He looked great on paper work. So, we headed home and ran some errands. I always pack Ben's meds in the morning because I have to give them at 2:30 and I pick the girls up (or on Mon and Fri it's just Abby) at 2:30. So, I had the meds in my bag to give him at 2:30. At 2:30, we were waiting in car line when I got out to give Ben his meds. Klara was asking me some stuff, so I wasn't really paying attention. I gave him his prograf like I always do, and then his cytra. After I gave him his cytra, I looked at it and thought, "that looked a little cloudy." Then thought" SHIIIITTTT! I think I just overdosed him on prograf!!" I immediately called Joe freaking out because I wasn't positive I overdosed him, but I was pretty sure. I mean there was no way to be positive. He said I should go home and check the other syringes. That made sense because I always draw up all 4 cytra syringes at a time. I got home really quickly. And yep, Craaaaapppp!! There was 1 syringe in there that looked like 9 ml of prograf and 2 that looked like 9 ml of cytra. So, I had just given our son 11 ml of prograf when he only gets 2.4ml. OMG is not enough! I was crying and freaking out and ready to head to the ER, again. For the second time that week. So, Joe got the job of calling transplant. I gathered up a bag and Ben's meds, fully prepared to have to stay and detox him. He called me back less than 5 minutes later and said "turn around, go home. You don't need to go to the ER. Just don't give him his 10:30 meds and he will be fine. He will have lots of diarrhea, and keep him extra hydrated this weekend, but he will be ok. Just don't do it again." So, that weekend, he had the WORST diapers I have seen. He was insanely crabby, and very awake from around 2-5 in the morning, wanting to play. But, other than that, he is ok. And he is back to his old self today. We even went to the Celebrate Life Transplant picnic on Saturday which is where the picture to the right was taken. He felt pretty good while we were there too.

So, he has had quite the exciting couple of weeks! We would now like some calm down time and for some illness free months ahead. I don't think that is too much to ask :) 

Move for the Kids

Ben was chosen as Lurie Children's Hospital's poster child for their Move for the Kids Run/Walk 5K for 2013. This means he is on their website, on flyers, and on posters. We chose to participate again this year because of what this non-profit hospital has done for Ben and our family. Please consider contributing to this worthy cause at:

http://foundation.luriechildrens.org/goto/benjamin/

Click on the image to see the full ad.

The Mechanic and the Cardiologist

Origin: unknown.

A mechanic was removing the cylinder-head from the engine of a car he was repairing, when he spotted a well-known cardiologist in his workshop.

The cardiologist was there waiting for the service manager to come and take a look at his car when the mechanic shouted across the garage, "Hey Doc, want to take a look at this?"

The cardiologist, a bit surprised, walked over to where the mechanic was working under the bonnet.

The mechanic straightened up, wiped his hands on a rag and asked, "So Doc, look at this engine. I opened its heart, take the valves out, repair any damage, and then put them back in, and when I finish, it works just like new. So how come I make $25 grand a year and you make $500 grand when you and I are doing basically the same work?"

The cardiologist paused, leaned over, and then whispered to the mechanic: "Try doing it with the engine running."

Rotavirus

Created from images by Pearson Education
and HardheadedWoman@Flickr.

On Saturday March 16th, Ben started having some increased diarrhea. He has always had GI problems, for which we have an appointment with the GI doctors this upcoming Tuesday. We just thought it was due to him having recently finished antibiotics for a sinus infection. We increased the amount of yogurt he was eating and added in some bananas and apples. The next day Sunday March 17th, he got worse. He started throwing up. Joe called the pediatrician. They said to just keep him hydrated. Make sure that more was going in than out. We went about our day thinking that we would just keep pushing fluids. Then an hour later he spiked a fever of 101.4 under the arm. We called the doctor back again. They wanted us to consult with the cardiologist on call. Joe called the cardiologist while I held Ben. He did not want to move too much. The cardiologist wanted him in the ER. We asked if they wanted us to go to Lurie or if Central Dupage Hospital ER was ok. They said CDH would be fine.

I headed out to CDH ER with Ben. He fell asleep on the way there. When checking in, he had a big smile for the receptionist. They got us back in to a triage room right away. The nurse took his temperature and it was still high. His Heart rate was in the high 140's and low 150's. When we finally got back to an actual triage room, the nurses had to start an IV line because he was so dehydrated. This was no easy task. Even with him being really sick, Ben fought them every step of the way. It took 2 nurses to hold him, plus me holding him in my lap, the nurse inserting the IV and the child life specialist trying to distract him. He does not like poking! They finally got that in him and started the fluids. The doctor came in and wanted to check him everywhere. Including his throat. Yeah, that was not the best thing for a child who was vomiting. He started throwing up as soon as she stuck the tongue depressor in his mouth.

After all the initial labs and tests, we settled in for a bit. Ben slept on and off. He was not allowed any food by mouth, but he did take a little bit of pedialyte. They came back around 7 and told me that he had tested positive for rotavirus. And also his labs were way off. All of his electrolytes were off, his bicarbonate levels were off and they wanted to admit him. I had no problem with the admission, since I could tell he was very dehydrated, but I did question the labs since his labs are always different due to the meds he is on. The ER doc called Lurie Children's to let them know what the labs said and the cardiology fellow on call confirmed what I had said, that his iron tends to run low, other levels tend to run low, his potassium is on the higher level of normal, etc, etc. They also confirmed what his usual heart rate is (which I had told them when we were in triage). The nurse seemed a bit surprised when I knew different ranges of different labs for Ben. Every time he has labs, I go over it when they come in, just to see where he is and how he is trending. :)

So, after all of the labs came back and the doctor talked to the cardiology fellow, it was decided we would be admitted. But there was some confusion on whether it would be at Lurie or at CDH. The doctor at CDH was saying that Lurie wanted him there so they could closely monitor him. And since he had an IV in, they would have to take him by ambulance. I was not happy with this. I wanted to stay at CDH because it is closer and there was nothing heart related about his condition. Except for the fact that his heart rate was higher due to the fever, he did not have anything heart related going on. I told the doctors and nurses this and the nurses agreed. The doctor said that cardiology did not feel comfortable with it because CDH does not have a transplant surgeon on staff. This seemed really ridiculous. There was nothing he would need surgery for. It was simple dehydration and rotavirus. Yes, I realize that nothing is ever simple in heart babies/transplant babies. But, the surgeon never visited Ben at Lurie either the last time he was in for dehydration. The cardiologist did, but not the surgeon. The doctor went back to talk to Lurie again and came back and said "they said you have to go to Lurie and we will transfer you by ambulance. The cardiologist feels it is best he is over at Lurie." At this point I said, "Fine, I am taking him home then. (I was holding back tears at this point because it was going to be virtually impossible if we had to go by ambulance. I would have to take Ben home on a train-which the thought of all those germs terrifies me- since I wouldn't have my car at Lurie.) There is NO reason for him to need to go to Lurie. He has rotavirus and dehydration. He is not a cardiac patient at this point. Yes, he has many meds that have to be monitored, yes he does have a heart transplant, but dehydration can be taken care of here too!" The doctor looked a bit shocked and said she would call them back.

The doctor must have told the cardiologist that I was going to take Ben home because the fellow on call apparently acquiesced and said it was ok for us to stay at CDH. They had us admitted to the PICU at CDH. Joe came with the girls and brought me some clothes and food. I had all Ben's meds with me at that point, so I was able to give them since CDH didn't have them on hand right at that moment. We stayed for 2 days. On Monday, Joe dropped both girls off at school (the school let Klara go even though she usually only goes Tue-Thur) and he stayed at the hospital with Ben and me for a while. He picked the girls up around 3:30 and came back to the hospital at about 4:30, hoping to let them visit. Well, he walked in the room with them and Abby promptly threw up all over the PICU floor. So, out they went in a hurry. Which was disappointing, not only because Abby felt sick and I wanted to be able to help both my sick children, but also because Ben was excited when they walked in.

The next day, Tuesday March 19, Ben was starting to feel a lot better. He was negative on Monday evening (this means he was putting out more fluids than he was taking in) But overnight he was drinking 4 oz of pedialyte every 2 hours or so. And they had his fluid on 50 ml an hour. So, when he woke up in the morning, he felt great. Or, as great as a baby with rotavirus can be. All the doctors were rounding and he was standing in his crib saying, "hi, hi. Nummy nummy? Bye bye, night night." His dr said "well, it looks like someone is feeling better. As long as all his labs come bac good, I see no reason you can't go home today." We were discharged around 1:30. I had Abby with me from 10:30-1:30, while Joe was in the room with Ben. I couldn't take her in his room since she had thrown up the day before.

Feeling better, watching cartoons on the iPad

Ben has been home since Tuesday afternoon. Thursday he threw up again and was having more diarrhea. We tried increasing his fluids but he would just throw up again. I called the pediatrician and she called in a prescription for Zofran and said she wanted to see him Friday morning. I brought him and Klara there on Friday. He had lost a pound since admission. Which, they didn't weigh him on discharge, so we don't know how much was actually lost in the hospital. He looked ok, and his heart rate was ok, so she said she wanted to see us again on Sunday (today) for a weight recheck and to see how he looked. Joe is at the pediatrician's office with Ben right now. We are hoping he doesn't need to be readmitted. He is eating more and drinking more, so hopefully the zofran is working and he is on the mend.

Recycled Parts Shirt

Ben has this wonderful shirt that we bought from Zazzle. It was obviously of a similar inspiration to the title of this blog. He has outgrown it now, but we are buying him another one.

Transplant Recipent (Child) Tees by hfaussett

Look at Organ T-Shirts online at Zazzle.com

The Little Guy's Starting to Walk

Ben Walking from Joseph P. Hillenburg on Vimeo.

Our Donor Thank-You Letter

We have just sent the most difficult letter that we have ever had to write. There are lots of letters to draw upon for adults writing on their own behalf, but very few for children, who cannot speak for themselves.

February 11, 2013

Dear Donor Family,

I would like to begin by thanking you for your generous gift. My wife, Stacy, and I, have had difficulty deciding how to write this letter, though we know it is not nearly as difficult as the decision your family made just over a year ago. We were very nearly faced with this same decision at around that time. 

I will tell you a little bit about our son Benjamin’s story, and what he has become. Ben was born in November of 2011.  Ben has two older sisters (Abby and Klara), and while Abby had some non-heart related issues when she was born, they were of a temporary nature and within a few days of birth, she was a normal baby. Klara, our second, had no major issues as a newborn.

Given the history of Ben’s two sisters, we felt sure that we would have no major issue with Ben. Indeed, for almost exactly one month, Ben was acting in precisely the manner that we had been led to expect with an infant. On the day he turned one month old, we started noticing that Ben was having stomach flu-like symptoms. Everyone else in the family had fought through a stomach virus the week prior, so naturally, we felt that it was Ben’s turn.

It was when he began having breathing issues and was lethargic that my wife brought him to the pediatrician, who looked at him and gave him breathing treatments. In the process of examining Ben, the doctors poked and prodded him, and he didn’t object the way a baby would. That is when the doctors sent Ben and my wife to the emergency room. Within a matter of hours, this situation escalated until the doctors informed us that his heart was much larger than normal, and that his condition (congestive heart failure and cardiogenic shock) was such that he would have to be sent from our suburban hospital in Illinois to a much larger and well-equipped hospital, where they could perform infant heart transplants. In fact, his situation  was so grave that they elected to transport him by air, as they were not sure if he would survive ground transport.

The next day, the doctors informed us that Ben had a condition called Dilated Cardiomyopathy (DCM), which is a condition where the heart weakens and is unable to pump strongly. This also means that it does not return to its normal size when pumping, and so gradually becomes larger.  The result was that the rest of his body was not able to get the blood supply (and oxygen) that it required, and so his other organs were not functioning well either. This is when the doctors began to mention the possibility of a heart transplant, though they were trying to ease us into it by suggesting it as a mere possibility. It also gave them a bit of time to determine if Ben’s heart, with the assistance of life support, would be able to recover in time.

Within a few days, the doctors informed us that Ben’s heart was getting worse, and that the support was not helping. This was when they informed us that he would need a transplant if he were to survive. They gave us the choice of declining, but who can really decline such a thing? Plus, with Ben being a month old, we had begun to see facets of his personality come out. As your child was probably a bit older than Ben, I’m sure you had gotten to know him or her, and we are sorry that this made things harder on you.

The wait for Ben’s heart was filled with ups and downs. During this time, his heart rate would shoot up to 300 beats per minute (bpm), and then go back down to 100 bpm. His resting rate was often near 190 bpm, whereas a normal infant would have a heart rate of about 120-130 bpm. For this reason, he would often have to be kept still, or even sedated, to prevent his rate from skyrocketing.

Stacy and much of our family and friends would often pray for Ben to stay well enough to make it to transplant time. On Christmas Day, Cardinal Francis George came by to visit and to pray for him. His first Santa photo is with him on a ventilator.  Though we do not really want to remember those difficult times, this is a picture we will always keep. Everyone hoped for a Christmas miracle, which did not come. We hoped that the medicine would help his heart to recover, even slightly, but this did not come either. New Year’s Eve/Day was another moment that got everyone’s hopes up. We eventually stopped attaching significance to a particular date.

Three weeks after he was admitted, at seven weeks old, we got “The Call.” This meant that there was a heart available to him, and we were relieved at his second chance at life. Our feelings of joy were tempered by the fact that the only way for Ben to live would be for someone else to die. It seemed so unfair that there was no alternative to this. Stacy had a good relationship with one of the chaplains at the hospital, and on many days, she would come up and talk for a while. Unfortunately, on this day she was not available, but one of the other chaplains visited and talked for two hours.

We prayed for Ben, for the surgeons performing the surgery, for the nurses and anesthesiologists, and for his donor family. We prayed that they would eventually feel peace knowing that their child was giving our child life. Ben’s surgery went without a hitch. One of our favorite nurses checked in on him a few times, and said that it was the most peaceful, calm surgery she had ever observed.

We are now about thirteen months post-transplant, and are grateful to say that Ben is a happy 15 month-old who is beginning to walk. He looks a bit like Frankenstein, stomping from one point of support to another. He is undergoing physical therapy due to the fact that he was on his back for about four months, and had a bit of a delay in gross motor skills. We expect him to be walking by himself very soon, and running after his two sisters.

On the subject of his two sisters, they are four and five and just adore their little brother, and they love to help him. He likes to follow them around (by crawling) and tries to do whatever it is that they are doing. Sometimes, he is a little too helpful, such as when they are putting together a puzzle.

Photo by Rachael Silvers

We have included a picture of Ben, to show how he was doing at his first birthday. That was about three months ago, but he looks pretty much the same, which is to say, very well. We cannot thank you enough for your selfless decision in your time of grief. We hope that knowing how much it was needed, and how it has helped our son, brings you some peace.

If you are open to it, we are willing to communicate with you in whatever manner is fitting. We understand if you are not at that place now, or ever,  but the offer is open.

Sincerely yours,

Joseph and Stacy (Benjamin’s Parents)

Of course, the original did not have web links.