Now THAT'S a file!

When you get your medical file for your child, you probably get a few pieces of paper. If they have had some hospital stays, maybe you get a stack of 15-20 pages. Not Ben. Nope, we got a BOX of papers. There must be between 1500-2000 pages here! And this is only the papers from when he was inpatient awaiting transplant and post transplant. The pediatrician gave it to us today because they were trying to figure out what to do with it and asked us if we wanted it! Joe said, "Sure, we can scan it and then just shred it." So, we're going to go through all of these pages and scan them and then I intend to read through some of it. Probably not all of it. I can't even imagine how many hours/days it took the pediatrician to read through all of that. Now, when cardiology sends anything over, they just send their summaries. Back then, the pediatrician wanted everything. They wanted all x-rays, all echoes, blood draws, dr reports, everything. Now, it is a bit easier. Though, I am sure there is still a stack about 1/4 this size from things from March until now. 

Some good news and some discouraging news

Hawaiian bread...yum!

Some exciting things happening as well as some discouraging things. First, the exciting things. So, Ben's physical therapist was here on Monday. She saw how well Ben is doing and said, "oh, this makes me so happy and so sad at the same time. You are doing so well you aren't going to need me soon!" Except for some low tone in his upper body, Ben is doing really well. He has even started feeding himself larger pieces of food. He was eating Hawaiin bread all on his own tonight. Ben has also started cruising around the furniture more often now. And, instead of army crawling, he is crawling on hands and knees almost all the time now. I almost felt a little sad to see him stop army crawling, because it means he's not a little baby anymore. But, he does have to grow up at some point.

We also have had quite a few labs done in the past week. His labs came back yesterday, and the APN said that they all looked really good for the most part. His prograf (immunosuppressant) was a little low. So, (and this is the slightly discouraging part) they want us to switch the time of his meds so that he is not eating right before he gets his prograf. We switched it to 6 pm yesterday and he looked so pitiful watching us eat and wanting to eat. I gave him a little Hawaiian bread and he got a little happier. But, he likes eating with us. So, we are going to switch his prograf to 5 am and 5 pm. That way we can still eat dinner as a family at 6. He needs to take it on an empty stomach, so he can't eat an hour before or an hour after. They are hoping this will help the absorption of the meds and that way we won't have to keep going up on his prograf dosage. But, it is a bit discouraging because of the fact that it was nice only having meds twice a day and now we're up to 6 times a day. He gets the prograf at 5 and 5 now. Then 4 other meds at 7 and 7 and cytra at 8:30 and 8:30. Though we are hoping that he will be going off of cytra soon.

The really hard part is he still has his cold and so he is still eating very frequently. So, today. I fed him at about 3:45. Then I gave him his prograf by 5. Well, of course he wanted to eat again at 5:10. I was able to hold him off for a little while. But, by 5:45 he was completely hysterical and would not calm down for anything. So, I nursed him and at 6 he ate some bologna. Well, since he had gotten so frantic, he ate really quickly and kept wanting more food. I stopped him after eating a whole slice of bologna, but he still threw it all up. :( We're going to have to figure something out, because I can not keep listening to my baby frantically scream because he wants to eat. It goes against every instinct I have. Hopefully he will get used to it and stop getting hungry right around then. Otherwise, the only other choice we have is to do his prograf 3 times a day. Which is even harder, but it may be what it comes down to, unfortunately. The other problem with the timing of prograf is, when we do his labs and have to get levels for prograf, we have to hold the prograf until after his labs. Well, the earliest the lab opens is 7 am. So, it would be bad to hold his prograf for 2 hours. Generally they don't want it more than an hour either way. So, it's ok to give it an hour early or an hour late,  on occasion (not all the time). But, they don't want it getting really late. So, we will have to ask his transplant pharmacist what we should do about that.

In other news, Ben's cold does seem to be getting slightly better. He isn't coughing as much and he does not sound as phlegmy when he lays down or when he nurses. Though, he is still eating frequently and still waking up in the middle of the night to nurse and then staying up for a while after he is done. So, the antibiotics must have helped something. But, lucky me, right when he started getting better, I got whatever it was that he had. Fun times. So, now I have a cold and all the kids are getting over their colds. Ah well, such is life when you have young kids. They bring home tons of germs. Especially when they are in preschool and kindergarten. I guess we are lucky we haven't had anything much worse than colds and sinus infections. So, that is good. Hopefully everyone is well soon and we can ALL stay well for an extended period!

Air Ambulance

Today, Ben met his flight EMT, Debra. There were others in the flight crew that early morning, and indeed, there were many medical professionals who were responsible for Ben being with us today. Some did more, and some did less, but nobody can say that flight EMTs are not one of those who do more.

Debra's crew is based just outside of Joliet, Illinois and operates an MBB/Kawsaki BK117B2. Their crew base is set up with accommodations for several members of the flight crew. Like fire/ambulance crews, they work just a few days a week, but each shift is very long.

Ben wasn't the only one who was at the flight crew base. His sisters got to take a tour of the facility, and sat in the same helicopter that Ben flew in.

A cold for Ben means lots and lots of tests

Picture of the torture chamber infant x-ray

So, I think I have mentioned before, if Ben gets sick, it means lots and lots of appointments. We had hoped that this time would be different. But, I guess it was not to be. We saw the pediatrician a week ago Thursday. That was when she diagnosed Ben with a bad cold. Then on Wednesday, I had Joe turn his polio shot visit in to a sick visit as well. Just to make sure. They diagnosed him still with a really bad cold that was threatening to turn in to a sinus infection and prescribed antibiotics. We had hoped that would be the end of that.

I should have known, nothing is that easy. Well, as part of keeping communication open, whenever Ben is seen by the pediatrician, they call and send a report to the cardiologist, and vice versa. Well, apparently the cardiologist that worried about every little thing was on yesterday. Oh, I should mention here, yesterday morning Ben had gotten blood work done and a collection container sent home for us to collect a stool sample. This was after a long run around where we first went to CDH. I got there and they did not have the orders in the computer. They said it would be about 15 minutes they could call the dr to get them. Then another 20 for us to register. Then there were about 7 people in front of us that we'd have to wait until our turn. In a germy waiting room. With an 11 mth old who is immunosuppressed. Yeah, I'll pass. So, I called cardiology and had them send the paper owrk to New Lennox. We went there and were in and out. And let me tell you, it is awesomely fun to have to try to get poop out of a diaper and in to a collection container. Yep, loads of fun.

But, back to dr worry wart. So, as per their protocol, the pediatrician had called the cardiologist yesterday to tell them what they saw and that Ben's lungs were clear and no ear infection or anything. Well, I don't know why, but dr worry wart decided this warranted a chest x-ray as well as an additional CBC and BMP. Yeah, we had already finished getting labs done by that point. And no, they couldn't just take it from the blood already collected. It needed a different tube. So, last night, Joe took Ben for his torture chest x-ray. It seriously looks like a little torture chamber, which is why I wanted Joe to go. I could not stand seeing him in it again, all smooshed in a little tube :( Poor baby.

Then, this morning we got to go visit the vampires lab tech again.  She felt so bad for having to stick him again. Plus, it was so much more fun. Because she stuck him on his right arm yesterday, she didn't want to go there again today. But, after trying his left arm, she determined we would have to do his right arm again. It's his better vein. So, the poor little guy has a big bruise on that side.

Well, I got a call from the pediatrician today. She said that there is some inflamation on his chest x-ray which is indicative of a viral process, nothing more. No pneumonia or anything else suspicious. Whew! We are SO relieved about that! I am really really hoping that Dr. Worrywart doesn't see that there is inflammation and get all freaked out and say we need to admit him. I will NOT be happy if that happens! 

So, needless to say, if Ben gets a cold and we have to go through all of this, it would be SO much worse if he were to get something like pneumonia or the flu or anything else. This is why we are asking everyone, please get your flu shot and your pertusis shot if it has been more than 10 years since your last one. And, if we ask how you are feeling or if you have had a sickness recently, please don't take it personally. We obviously want to keep Ben as healthy as we possibly can, and not have put him through all of these tests again anytime soon. Also, if we ask you to wash your hands or use hand sanitizer before touching Ben, please understand it is not personal. Also, for those invited to his birthday celebration, this will be even more important since we know that when there are lots of people all in the same room, germs spread more easily. It is all just to keep Ben healthy during cold and flu season, and always. 

Dr visit and polio vaccination today

Well today was Ben's polio shot. I wanted to make sure he was ok to get it with how sick he has been. So, Joe had them do a sick visit as well. Well, first of all, he is 19 lbs 10 oz. He gained 4 oz since last Thursday. Woohoo! I was afraid with all of the diarrhea we were going to be looking at another loss. They did the sick visit too. I asked Joe to mention how Ben is up alllllll night long coughing and sounding very mucousy. He is barely getting any sleep. I being him in steamy rooms a couple of times a day. I also tried putting him in a car seat to sleep, but he screamed and tried to lunge out. So, that wasn't working. I also asked him to mention Ben throwing up a couple of times due to the mucous in the back of his throat and the wet sounding cough. Well, they said it was a really bad cold, but prescribed antibiotics because it looked like it was going to turn in to a sinus infection. The good news is, his lungs and ears are both clear. He is now on amoxicillan. I asked why his bactrim wouldn't help against the infection, but apparently it just doesn't.

Ben also got his polio shot today and as long as he is ok, he will get his flu shot booster in 2 weeks, along with the girls getting their flu shots and Klara having her 4 year check up. Abby and Klara have already told me, "I am going to scream and run away from the nurse." Oh joy! I am so looking forward to that visit :/ At least Joe will be with for that one as well. If there's any running away, he can catch whichever girl it is, lol!

I also had Abby's kindergarten conference today. I just have to brag on her for a minute here. Her teacher always starts off our meetings with, "well, what can I say about Abby? She is just a true joy! I love how interested she is in everything." I was so proud hearing how well Abby is doing in everything in her class. Her teacher said, "she is a true Montessori student. She is so caring, such a leader and always interested in learning the why's of everything as well as how things work. She is very respectful and never interrupts others (say what?!? My Abby? :D ) Now, just as a reminder, Abby just turned 5 and is in kindergarten. She is learning how to add 4 digit numbers using the golden rods, she is also learning to exchange numbers, which is the start of learning how to carry over when you add 2 digits and 2 digits. As well as when you subtract. Her teacher also told me, "She is such a great reader that I can;t just give her the phonics books from here. I have to go to the elementary classroom and grab books from there for her to read." Overall, it was just such a great conference. The only negative thing she had to say (and it wasn't all that negative) was "Sometimes when she and N and S are in the reading corner, they get a little silly and start tickling each other and i have to tell them 'Ok you guys, now it's just a tickle fight. Out of the reading corner so others can have quiet.'"

I am just SO pleased with how well she is doing. It does bring up a concern though, which I mentioned to her teacher. I don't know what to do with her next year. I really want her to stay at Montessori, but if we put her in public school, she is going to be so far ahead of other kids. I mean, she is learning stuff 3rd and 4th grade public school students learn! Her teacher even said, "I know, I feel bad for her future teacher because she is way ahead of the public schools. But, I never push her, these are all things she is wanting to learn about." We also need for Ben to be at Montessori. And, it wouldn't be fair to take Klara out of Montessori. Ben needs to be there because they know all about all of his issues and we have total confidence they would take great care of him, as well as they would make sure he is in a classroom where all children who are able, are vaccinated. And we know they would call us to come get him if anyone was to come down with any illness.

So, basically now, tomorrow we have labs for Ben to make sure he doesn't have a GI infection as well. We also have labs for his magnesium levels to see if he can come off of that as well as a kidney panel to see if we can lower or get rid of cytra. I don't think he has a GI infection, but you never know. So, now we're just hoping for him to get over this congestion and hoping the antibiotics take care of anything brewing as well as hoping to get to come off of magnesium.

Still feeling not so great.

I posted about a week ago about Ben having a cold. He is going in spurts now of feeling ok and feeling pretty crummy.

Kids watching Cat in the Hat together

I took him to the pediatrician on Thursday and she confirmed that it is still just a cold. But, if he gets any worse, any breathing problems, high fevers, high heart rates, etc, she wants him in the ER at either Edward or CDH. I am just really hoping it doesn't turn in to bronchiolitis again. He was pretty miserable all week and most of Saturday. He did play with his cousin and sister a couple of times. Today he seemed a bit better. Then just a couple of hours ago, he was nursing and sounding like he was drowning. He would stop every couple of seconds to breathe. So, he is working harder to nurse now. Well, I called the nurse and she said as long as he is not working hard to breathe and is staying hydrated, we don't have to come in. But, if he shows any signs of trouble breathing or has a fever, they want him in the ER. I keep wanting to just rush him straight to the ER just to make sure. But, of course there are major germs there too! So, that's not a great idea.

I also received a message from his kidney doctor today. I wanted to talk to him about the diarrhea Ben is experiencing that I believe is due to his Cytra-2. The kidney dr basically said that it can not be from the cytra-2 and that it is most likely an infection or his magnesium and I should call the cardiologist to get labs done. So, I called the cardiologist APN and she and I both agree that it is definitely not the magnesium. He is on the smallest dose he has ever been on and he was not even having diarrhea at twice this dose. We will be getting labs done at CDH on Thursday to make sure it's not some sort of infection. We will also be checking his PH levels as well as magnesium levels to see if he can completely go off of magnesium. If all comes back clear then the APN said we will discuss what to do about the cytra. Between his cold and the diarrhea, I am just afraid of him not getting in enough nutrients. The APN agrees with me about that.

Abby and Klara got slight colds too, but obviously Ben is fairing a little worse because of his immunosuppression. They are already pretty much over their colds. I just started getting some cold symptoms as well. I am hoping that Ben will get over this easily. I know it will probably take a bit longer than most kids, but I am hoping that it stays a cold and nothing worse.

Not feeling too great today

Someone doesn't feel so great

Last week we were at my grandmas house for my 12 year old nephew's birthday party. My stepfather had a cold, but we wiped everything down and he stayed far away from Ben, so we thought we were safe. Well, we probably would have been if it was just for that. But, the next day, my sister called me and told me my 2 year old nephew was really sick. He had a bad cold that they think turned in to an ear infection as well. We were hoping for the best and Ben seemed ok. But, then today, he has had a low grade fever and a very runny nose. He has coughed a couple of times, but nothing too bad. So, since he was doing ok, we went to talk to the manager of the place we are having his party. Then we went out to dinner and to Target to get a few things.

 While at dinner, Ben ate a ton of food. I should probably have known that I should have stopped him. But, he screamed when I would stop feeding him, so I thought maybe he is going through a growth spurt. Well, we went on to target. As we were leaving, Joe said, "maybe we should change him before we get in the car. He is pretty stinky." So, he got a diaper and went to change him. I checked out. As soon as he came over to me after changing him, Ben puked all over himself, Joe, my pants and on the floor of target. It was seriously like the exorcist, there was so much vomit. I think it was partially due to eating so much and partially due to the runny nose making his tummy queasy. So, I ran him outside and stripped him. and, OF COURSE, the clothes I had in my purse were too small. Why wouldn't they be?

So, I put him, naked, in to the car seat and bundled my jacket over him. We drove the 5 minutes back to our house and I plopped  him in the tub and Klara got in with him and helped clean him off. After a couple of minutes in the tub, he started acting like his old self. He started splashing and giggling and playing with Klara. When we got him out, he started getting crabby again and did not want to take his meds. He is on a new med called Cytra-2. It is because at his last few labs, he was slightly acidic. They don't want him to get too acidic, so they started him on this med that is basically medical baking soda. Well, that's how Joe explains it. Of course, this med also can cause diarrhea, upset tummy and it interferes with aspirin. So, I was a little wary of giving it right after he threw up anyways. AND, it's 9 ml. That is a lot for a little baby to take. Especially after throwing up a ton! Well, he did fine with it. He wasn't happy about it, but he did ok. And he is sleeping now, so hopefully he stays asleep for a while and gets some rest.

I knew we couldn't keep him in a bubble or anything. And of course, it's not my nephew's fault Benjamin got sick. He was perfectly fine last Saturday and then on Sunday, all of a sudden he was really sick. I just hate seeing him so sick and not like himself. He is in his crib with baby vicks on his feet and if need be, I will give some tylenol later. I am just really hoping this doesn't turn in to bronchiolitis again! That was no fun for any of us at all, especially Ben.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 I wrote way back before Ben got his transplant about what this poem might mean to me. I was thinking that life would change so much whether or not he got his transplant. I was so scared back then. Not knowing what was in store for us. We didn't know if he would be able to eventually be medically managed. Would he have a transplant? What would transplant life be like? Would he ever be able to do things normal kids are able to do? It was all very scary. We had taken home this perfect little boy. Then at 1 mth old, it all changed. Our world was not the same. We had detoured away from Italy somehow and landed in Holland. None of this was anything like the life we expected to live with our kids. And we were terrified. Now that we are on the other side of transplant, I can say, while it is disappointing that we did not get to go to Italy, I can appreciate all the good things about Holland. Ben is doing so well with his new heart. Yes, there are meds, and therapies. We never had to deal with that with our girls. Yes, we have to be ultra careful with any illness, whereas with our girls, if someone had a cold, it was no big deal. Obviously, we didn't go out of our way to bring them around people who were sick, but, if we found out someone was sick after we saw them, well life goes on. We also have so many more medical appointments for Ben than I ever had for the girls. So, there have been disappointments on the way. But, also some very good things. If it weren't for Ben needing to stay out of daycare, Joe wouldn't be spending nearly as much time with him during the day. Each little milestone is a complete joy to see because for a while there, we didn't even know if we would see Benjamin ever open his eyes again. The girls are so good with Ben and while no child should have to know the names of so many meds, they love helping us with all of Ben's meds. I also have met some really great people thanks to being a part of a special group of moms with heart transplant babies. And while, I don't think anyone WANTS to have their baby have a heart transplant, I am so grateful for these friends and having them as a support system of people to lean on that have been here before. So, while we are not in Italy, and we are not having the life we imagined, we are loving all of the little joys and good things that this life is bringing us. And Holland is turning out to have some pretty great things.  

What are we going to do with you, Ben?

"Who says I need PT?"

This was said by his PT today. In a good way! :) So, we had his 6 mths progress meeting 1 week ago. At that time, Ben had met all his goals that they made when he was 5 mths old, so his PT had to make new goals. So, those new goals were, Crawl in a 4 pt position, go from crawling position to sitting position, stand up from a kneeling position, cruise, and finally walk. Well, this weekend, Ben decided to accomplish 3 of those goals! All of a sudden, he started crawling on all 4's with his belly off the floor. Not far, but he is doing it. He is crawling that way for maybe a couple of feet, then he reverts to army crawling. His PT would like him to be using that type of crawling 50% or more of the time. He also started going from the crawling position in to a sitting position just today. AND, for the last couple of days, he has been going from kneeling to standing. So, the physical therapist came today and saw him doing all of this and said, "oh my goodness! I just can't believe it! What are we going to do with you, Ben?" So, now we are working on facilitating cruising. It will probably still be a while before he is walking on his own. He is still very unsure of himself and will try to reach a hand out like he is going to grab on to something else and walk over to it, but then he will pull his hand back in and stay where he was. Though, there are times he is fearless and will pull up to stand and just let go like he thinks he knows how to walk already! :) He still has some work to do. But, maybe he will be walking by his first birthday. We are still working on him using his pincer grasp to pick up foods as well as working on him getting the foods to actually go IN his mouth instead of in his hand and him forgetting where it is until it's a mushy mess. But, he has come a long way since December, and we are so happy about that!