January-the sick month

Even sick, he's still cute! 

So, Ben has been sick pretty much all month long. We have been in and out of our pediatricians office so much that they seem to know my voice when I call, before I even say my name. Ben has had a cold pretty much since the beginning of the month. It sounded like it was getting worse, so we took him back earlier in the month, hoping to prevent any bacterial infections so that he could still have his biopsy done. We got antibiotics because the dr said it looked like it was turning in to a sinus infection and he wanted to prevent that. So, the antibiotics ended up giving Ben terrible diarrhea. Add in him getting 4 teeth at once, and his cold/sinus infection, and he was pretty miserable. So, back to the dr we went. The pediatrician then gave me an anti-diarrheal to use until he was off antibiotics. He also recommended benadryl at night, to dry him up so he could sleep.

So, we did that. The anti diarrheal seemed to help. For a while. It has lost it's effectiveness now. His cold was STILL not getting any better though, and in fact sounded worse. Then he started spiking fevers. So, back we went. AGAIN. For the 3rd time this month. They said he sounded fine, his lungs were clear, but if he still had fevers to call back in the morning and come back in. They also had us get blood work done. All came back fine. Frustrating, but glad to know it wasn't anything serious.

Then, Ben spiked another fever. While he was screaming, I looked in his mouth and saw yellowish sores on his tongue. This freaked me out and I got another pediatrician appointment, (4th time this month, I believe) on Tuesday. We brought him in and the pediatrician looked him over and said lungs were clear, heart sounded good. Then she wanted to look in his mouth. Well, Ben was NOT having any of that! He clamped his mouth shut, swatted at her little flashlight, and shook his head back and forth. So, she had to bring a nurse in to help us. When she looked in his mouth, she could clearly see the huge mouth ulcers and almost a little hole in his tongue next to the ulcers. She said he has hand, foot, and mouth disease. She gave us magic mouthwash. This is a prescription lidocaine/benadryl/maalox that we had to swab over the sores every 4 hours. Hahahaha! I know, right? I got a good laugh out of that too! The first time I did it on my own, without Joe helping me, Ben bit a piece of the mouth swab off and shook his head from side to side and grabbed the swab away. Fun times, people! Though, I will say, his mouth sore is starting to look a bit better. We were also told to rotate tylenol and motrin every 4 hours to stay on top of the pain so he could eat and drink. Well, when I called the cardiologist to inform them of everything, they said not to use Motrin too much due to his kidney issues. Once in a while is fine, but they would rather he have tylenol as needed (up to 5 times a day) and motrin only at bedtime to help him sleep. Motrin lasts longer than tylenol in the system. Luckily, the cardiologist informed us that hand, foot and mouth disease should not have any effect on his heart.

So, we stopped the Motrin, except at bedtime and now he is in more pain, unfortunately. But, we can't use anything too hard on the kidneys because, like the APN said, we don't want to need another organ transplanted! He may be doing a bit better with his pain today though. He ate a bowl of oatmeal and a jello cup for breakfast. I know, what am I thinking? Jello for breakfast? Hey, at least he ate! He actually had ice cream for breakfast yesterday. And yes, the girls were jealous :) I think Abby is trying to figure out what sicknesses she can contract that will allow ice cream for breakfast.

So, since Ben has been so sick all month, we obviously had to cancel his biopsy that was set for tomorrow. It is now rescheduled for Feb 8th. And, until then, I am not letting him out of the house for unnecessary reasons. I even, briefly, thought about not going to gymnastics, since I have to bring him in with me. But, the girls love it so much and it wears them out. So we are going there. But, there will be no unnecessary grocery trips, play-dates at play places, etc, until he has had his biopsy. I want him to be well enough for that. We have about 2 weeks for him to get better enough to have his biopsy done.

Want to Really Change Organ Donation Rates?

Most people, for whatever reason, do not participate in the organ donation system in the United States. The U.S. has an "opt-in" system which requires an adult to explicitly sign up.

Nations such as Austria have an "opt-out" system, where participation rates are almost 100%. As such, I believe the U.S. should switch to this type of system, and I encourage you to sign this petition. With any luck, the Government will at least make an official statement on the subject:

Pass a Bill to Change the United States' Organ Donation System to be "Opt-Out" Rather Than "Opt-In"

Will He Ever Lose All Those Meds?

in the beginning. about 2/3 the daily meds

When people don't really know about transplant life, they will often ask about Benjamin's meds and therapies and what transplant life is like. Most people have only heard about transplants in the movies, or maybe read an article about it or perhaps a book. Most of these things do not go in to detail about exactly what transplant life is like. One of the things people seem most concerned about is, "Will he lose all of his meds one day?" Short answer: No. He won't. A lot of people are shocked by this. Some I have gone in to detail with, others I just leave it at that.

The truth is, Ben has lost a lot of his meds. He came home on sixteen different meds given approximately every 3 hours around the clock. It was exhausting! Lets see if I can remember everything he came home on. He was on cellcept, Prograf, Magnesium, aspirin, iron, Bactrim, Nystatin, Digoxin, Propanolol, ativan, methadone, Valcyte, Prednisolone, Bumex, and another diuretic that I can't recall at the moment and another drug that I can't recall. It was a lot. We lost methadone and Ativan fairly soon after we left the hospital. I think we lost methadone while we were at Kohl's House and Ativan was a week or so after we got home.

Throughout the months, we have lost more and more meds. We eventually got to the point where we were only giving six meds twice per day. We eventually had to go up to four times per day due to the fact that Ben can't keep his Prograf levels up when he is only at twice a day. Some of those meds we will eventually lose as well. As soon as he has his biopsy done, if everything comes back clean, we will lose Bactrim. There is a possibility that he could go off of magnesium soon as well. He is on a very tiny dose right now. He also may lose his Cytra eventually, once they are able to lower his dose of Prograf. He is on a fairly high dose of iron though, so I don't see him losing that one any time soon.

The big ones he will never come off of are Prograf and Cellcept. Due to being on these drugs, he sometimes needs other drugs as well. For instance, the prograf is known to leech magnesium out of the blood. This is why he is on magnesium. He started off on aroudn 10.5 mL a day and is now down to 2 mL a day. So, it is getting better. I believe the Cellcept or the Prograf also leeches iron out of him, which is why he is on iron supplements. He takes 2 mL twice a day. He started off on 0.5 mL twice a day.

People seem to worry about what all of these medicines can do to his body, especially some people I know that are into natural cures for everything. Well, I tell you, if there was a natural cure out there for his dilated cardiomyopathy that meant he didn't need the heart transplant, I would be all over it! If there had been a natural way to safely keep his heart, that would be awesome! But, there's not. There is no way for a body to accept an organ that is not its own without the use of immunosuppressants. In Ben's lifetime, there may be. Science is always discovering new things. And I have recently read some articles on ways that people can have a donor heart (in the future) without the need for immunosuppressants. Not soon, but maybe eventually. For now, we are just so grateful that he is able to live, and if that means medicine every day, then so be it!

I confess, I worry too, about what these meds are doing to his body. I read Bill Coon's memoirs of his heart transplant life. I know that eventually Benjamin could need a new kidney as well. Or he could get Post-Transplant Lymphatic Disease (PTLD) from being so immunosuppressed. And if you think a heart transplant is scary, well it is, but I think a heart transplant and cancer treatment is terrifying! He could also get Transplant Coronary Artery Disease (TCAD). He could get any number of things from the meds. Not to mention the fact that any illness is so much harder for him to fight off since we are suppressing his immune system. He has had a cold for 21 days now. He was on antibiotics for it, due to the fact that they thought it was turning in to a sinus infection. It still is not going away and we may be lookign at a chest x-ray this week and possibly postponing his biopsy that is scheduled for Friday. But, this is the risk we have to take. There is no other way to prevent rejection. This is also why I am so unwilling to bring Ben around anyone we know is sick or has not had their flu shot, and why I do not like taking him in big crowds during cold and flu season. He just gets so much sicker and for so much longer than everyone else.

So, we go about our days, thankful that he is mostly healthy and has not yet succumbed to any of the illnesses that are possible with the drugs he is on. We keep our appointments with all of his doctors. We give his meds every day, and we hope that in the future, we may see a day where Ben does not have to take any meds and has absolutely no limitations. Maybe one day.

Happy Heartaversary, Benjamin!

The day Ben got his heart transplant was January 5th, 2012, but the story starts on January 4th, when I got The Call™.

It was just another day in the PICU. Only January 4th is when Joe had taken the girls home for the first time. For some reason, the girls winter break ended on Wednesday and they needed to be back in school on Thursday. I know, crazy! So, Joe took them home with him that Wednesday night and was preparing to take them to school the next morning. He was supposed to go back to work that Thursday as well. But, well, plans changed.

I was reading in my bed next to Ben's crib in the PICU. I would occasionally get up and go sit by Ben for 10 or 15 minutes and rub his hands or his head or just talk to him. I was back in my bed when I got the call though. I remember the nurse came in the room. I can't remember her name, but she was blonde. I would recognize her if I saw her. She came in the room with a smile on her face and said, "Doctor G. would like to talk to you." I got on the phone and the most wonderful words came through that phone. "Mrs. H., we think we have a heart for your son." I couldn't speak at first. I was just in such shock. I think I talked to him for almost an hour. Just asking all sorts of questions about what would happen, how it would happen. He reminded me that they still had to go over and check the heart and that there was a possibility that it might not match or that something might be wrong with it. But, from all the paperwork they got on it, it was a good match and they were very confident surgery would go ahead.

After I got off the phone with the doctor, I called everyone. And it was 11:30 at night, but I still wanted everyone to know. I called Joe first. He had been just about to go bed since he was supposed to start back to work the next morning. He was dazed, I think. He was just saying, "Seriously. They really found a heart? Really Today of all days huh? Though it is probably good since the girls will be in school tomorrow." He had to then figure out how to get the girls to school and back to the hospital in time for surgery. I then called my sister. She was asleep, so I called her husband and told him that she needed to wake up, I had some important news. He woke her up and she called me back and said, "What is going on? Why are you waking me up at 11:45?" I told her the news and she almost cried. Maybe she did cry, I am not sure since I didn't hear it. She was so excited and she couldn't sleep all night either. She asked if she should come down. I told her what time the doctor said they would be doing surgery and she said she would be there in the morning. Next I called my mom and she promised to get there around 7 in the morning. I posted on my Mommy board thinking that no one would be awake at that time, but I wanted them to wake up to good news in the morning. To my surprise, I had quite a few comments right away sending prayers and good wishes.

The cardiologist had said they would so surgery sometime between 4 am and 12:30pm. Then I was told 5:30 am, then that came and went. I was basically up all night, a nervous wreck! Finally, at 7 am the cardiovascular surgeon came in and told me it would be about 15-30 minutes, and that they were just setting up. At 7:45, the anesthesiologist came in and said it was time. The chaplain had been with me since about 5 am since I had thought that was when they would take him. She stayed with me until he went back and then walked with Ben and I to the doors into the surgery area. I kissed him all over and told him to behave in there and that I wold be waiting when he got out.

Other than the time Ben was flown to Children's Memorial, the next hours were the hardest I have ever gone through. The waiting was so hard. The nurses and doctors were great about coming and giving lots of updates. I cleaned out Ben's old room in the meantime. Once a patient is post transplant they move them to a post transplant room in the PICU, so, I had to get everything–three weeks worth of stuff–out of his old room and in to a holding room until they got that patient out of the room. We had three different updates. Our favorite nurse, Mariah also went back to check on him and said he was doing beautifully. She said it was the most peaceful surgery she had ever seen. It was just going perfectly. About 70-80% of babies have to have their chests open after a transplant. this is due to swelling or donor heart size might be slightly too big. But, Benjamin did not have to have that. His heart was perfect for him and there was not too much swelling. The last update was them telling us he was off of bypass and his heart was beating and it was a nice strong beat.

After that day, I was utterly exhausted. However, Joe and I made sure to make time to go out to eat and then relaxed at a coffee shop–we felt that we earned it after that ordeal! We then went to Kohl's House and just slept for hours. Mariah told us, "if you want to get some sleep, tonight is the night to do it. He will still be paralyzed and sedated and you have the worst behind you. So, with that, I slept for a good long time. I even forgot to wake up to pump. Which when I did wake up, I freaked out about, thinking I had ruined my supply by sleeping in that one time. After that, we were on the road to post-transplant life and all that came with it. We learned about all of Ben's meds; all 16 of them that he would go home on. We learned how to check his vitals. We learned what the signs were for rejection or infection. We learned all about PTLD (Post transplant lymphatic disease), TCAD (transplant coronary artery disease), what heart rate was too high, what heart rate was too low, when to bring him to the hospital or the pediatrician or call the cardiologist. All things I had never thought I would ever have to know as a mom. But, we did it. And now, we have our adorable little 13 month (almost 14 months!) old. We still have to worry about meds and worry about infection all the time. He will always be followed by a cardiologist and have echos and biopsies. But, it is all worth it because we have our little boy!

Happy New Year!

Happy New year!

This year has, obviously, been much better than last year! For one, we were not in a hospital for it. Joe and the kids and I were all together and we got to be with our good friends. Last year really sucked! I was at Kohl's house with the girls at midnight. I woke up at about 11:30 so that Joe and I could toast in the new year together. Joe came over at about 11:45 and at midnight we toasted to a better new year, and kissed. At 12:10, he went back to the PICU to be with Ben. We were so sad that we weren't all together at that time. The girls were still in bed sleeping. I went back to bed and the next day we traded off who was in the PICU with Ben and who was with the girls at the Brown family Life center. I really loved the Life center for all that they did with the girls. They made it a little easier to be there. The girls loved going there and they had volunteers that would play with them while we had conferences with the dr's and whatnot.

 Yummy lemons!

This year though, was much better. While I am grateful for all the dr's and nurses and the volunteers and everyone else. I am so glad we are not seeing them this year. We toasted in the New Year as a family of 5 at our friends house. Ben and his little baby friend were asleep upstairs at the time. But the girls and their friend were still awake. They had little glasses of sparkling cider, as did I. And the rest of the adults had champagne. They were so excited to get to stay up so late. And they actually did really well with it. Except for getting a little slap happy and silly at around 11:30, and then not listening very well at around 12:30, they were pretty good. I mean, when you have two 4 year olds and a 5 year old playing together, things are bound to get goofy and silly. And loud! But all in all, it was a wonderful day. Especially compared to last year. And even better, since they were up so late last night, they slept in until 11 today. It was SO nice to be able to have both Joe and I sleep in for once in, oh probably 6 years. Then we went out for brunch and some shopping and came home and relaxed. Ben was a bit more tired today, but that may be due to teething as well. He is getting 4 teeth in right now. All told, this has been a good year and I am looking forward to what 2013 will bring us.