Klara and Ben's appointments

So on Wednesday, August 26, Ben and Klara had their cardiology appointments. Ben's was his 4 month checkup and Klara's was her 3 year check up that she has for her PDA and just because of Ben's history. We got there at 7 am for Ben's labs, which he did not cry at all for! The lab tech was SO impressed that he let him pick out 3 toys from the toy bin. Klara was even amazed too. We then grabbed a cereal bar from the cafeteria because, on the way to Lurie, Ben decided he did not like his breakfast (that he had picked out himself) and fell asleep. We then went up to cardiology and they got us in for the EKG a little early. Ben and Klara were in the same room for that and it was very quick. We then went to another room for the APN to take down all the information about both kids. After that, we waited for about an hour for echo to come get us. Thank goodness for iPads and kindles! Klara and Ben were in separate rooms for the echo so they could get it done quicker, and they both did SO well for it. They watched movies during the whole thing.

We saw the cardiologist after the echo. Ben's echo was pretty much normal and his EKG was fine as well. His BNP was actually better than last time. It was 240 this time and last time it was 300. Anything under 1000 is ok in young children and toddlers. Because of this, when they got his prograf levels back and it was 5.3 instead of the 6-8 that they wanted, they decided not to mess with his meds because his heart is functioning well and he is showing no signs of rejection. They did up his cellcept. just because he has gained weight. He is now 32 lbs and 38.1 inches. We are waiting on the results of his holter monitor to see if we need to raise the dose of his magnesium. His magnesium levels were slightly low. He was at about 1.4 and they want him to be at a 2. He tends to run very low on magnesium, but as long as he is not having arrhythmias they don't want to mess with that either. We do have follow ups with hematology, kidney and pulmonology coming up as well. His kidney labs were slightly off, but nothing very worrisome and his hemoglobin was slightly off as well, so we may need to raise his iron after that appointment. But otherwise, he had a great appointment and was so happy to show off all of his wires (the holder monitor) to his friends at school on Thursday. Cardiology has also cleared him for his ear tubes which will happen in October.

Klara also had a pretty good appointment. Dr. G said that her echo looked really good and there was nothing outstanding about it. Her PDA is unchanged. But, on her EKG they noticed that there were some beats coming from the lower chamber of her heart that should have been coming from the upper chamber. So, Klara got a holter monitor as well on Wednesday. She was fine with it and loved showing it off at the park during Abby's soccer practice as well as answering questions about it at school. We sent the holter monitor back today, so hopefully we will hear answers back next week. Dr. G said he is not worried really about Klara. And he would not have really even been searching for the beats in her heart, EXCEPT for Ben's history. So, he wanted to be extra cautious and give her the holter monitor to make sure he didn't miss anything. And like I said, she didn't mind.

Next up will be hematology for Ben and then pulmonology. I'm assuming both of those will clear him for ear tubes and then we go back to Lurie for his ear tubes October 8th.

Waiting for labs

Ben's echo

Klara's echo

Ben's EKG 

Klara's EKG 

Klara's holter

at lunch after the holder monitor. Examining his wires

New post-It's been a while...

I'll just start with some pictures, because it's been a while since I have posted on the blog. My computer crashed, and so I was not able to access all of y pictures. So, I did not want to post without any pictures. We have been having a lot of fun while it has been sunny out. Lots of park days and zoo time. We did a few picnics where we ate outside. Ben has been playing in his tunnel and the girls and him have been playing in the tend while inside. Unfortunately, it has been raining for quite a few days, so we haven't been outside for a few days. But, the girls just started gymnastics and swimming lessons. Ben, saw them swimming and said he wants to start swimming too. When I questioned him further, I think he wants to go in the girls swim class. He, unfortunately can not go in their class because he is too young. We are thinking of enrolling him in the next swim class though. We will keep talking about it with him.

 One bad thing is, Ben has been saying for the past few days that his mouth hurts. We took him to the dr yesterday. She saw a canker sore in his mouth, but also saw what appears to be a cavity. Now, this is a little different for him than if his sisters had a cavity. If Abby or Klara had a cavity, our regular dentist could probably give them novacaine, maybe even some laughing gas and fill it. But, not for Ben. He may look and make sure if it is a cavity. But, it is looking like we are going to be going to Lurie to see their dentist to have it taken out, because he will need to be under anesthesia and it will need to be cardiac anesthesia. He will see their dentist for the first time next Tuesday as well as possibly an audiology appointment.

As you can imagine, we don't like going under anesthesia at all, but it has to be taken out. He has some numbing medication for the canker sore for now and we are to brush really well and follow up with the dentist as soon as we can get in. Hopefully they can take care of the cavity really quickly. And hopefully the rain goes away soon so we can get back outside soon!

Dermatology visit

Ben had his dermatology visit today. We were once again rushed back to a room. The nurse was washing it down as we came in and had sanitized everything in the room, so I was ok with Ben playing with the toys in the room. Much better than him playing with the toys that anyone could have touched in the waiting room. Can you tell that I am paranoid about him catching measles? The nurse went over all of his meds and she asked about when his transplant was. She also mentioned that she was in the OR during the month of his transplant, so it is possible she was his OR nurse! How funny!

The dermatologist came in and looked over his skin. And while it has improved with the lotion we have been using as well as the cream she prescribed, it is not as good as she would like .It is a lot less red than last time, but it could be better. So, she wanted to tweak the creams a little bit and gave us a new script for him to use. Hopefully using this one twice a day will help and he won't be so itchy. We have to come back to see her in 3 months. I am hoping to also get Klara in to see her sometime around then. Klara has also been having some itchy skin issues. May be eczema, may be something else. But, it is something I would like a dermatologist to look at and determine what it is. The dermatologist is hoping to see major improvement with this new cream by the time we come back in 3 months. Me too!

Playing in the nice clean room!

More cases of measles in IL. Trying not to panic

I don't think it is working very well. But, I am trying not to panic. 14 children in Il have now been diagnosed with measles. And I don't think it is going to stop there. http://chicago.cbslocal.com/2015/02/17/illinois-measles-cases-climb-to-14-with-another-infant-sick/ The first case started at Northwest Community Hospital in Arlington Heights. This is where Ben goes to get Pulmonology care. He is scheduled to go there in about 9 days for a follow up and I have to say, I am panicking a bit about the thought of going there. It is only about 10 minutes from the Palatine daycare where there are many of the cases.

I have informed all of Ben's nurses and doctors that I am very worried about him being in the waiting room at all, for any period of time. They have all been very accommodating so far and rushed us back to a room as soon as we arrive. I need to call his pulmonology team as well and make them aware that I do not want to wait for any time at all in the waiting room. But, even the thought of walking through the hospital (it is a rather large hospital that you have to go through to get to pulmonology) is giving me the heeby-jeebies.

Measles is a highly contagious disease. It can stay in the air for up to two hours after an infected person has coughed or sneezed. Also, it starts out looking like a cold. And you are contagious even before you have a fever or rash. http://healthvermont.gov/prevent/measles/Measles.aspx So, while most people would stay home if they had the measles, not many people stay home for what they think is a cold. And often, people will go to the dr if they think they have a bad cold with a fever. And thereby, spread it to others without knowing it. Those that can not be vaccinated for measles are most at risk for catching it. 90% of patients that are not vaccinated for measles will catch it. This is why I am such a proponent of vaccinations and am on the parent advisory board of voices for vaccines.  Kids like Ben, and those too young or cancer patients or the elderly, they are all protected by herd immunity. And with this herd immunity breaking down, I am often fearful to take Ben anywhere. But, I am especially fearful of taking him anywhere that is close to measles outbreaks. So, I am sure you can understand my concern about taking him to Northwest Community for Pulmonology. Obviously I still have to take him. But my anxiety is high for that one. I am going to keep speaking out about vaccinations and hope that people start listening about the importance of on time vaccinations.

Help keep him safe!

ENT visit

We had Ben's follow up visit to his ENT today. He had seen his pediatrician 3 days ago, on Tuesday and she said that, even though he was displaying cold symptoms (as was Klara) and was very restless at night, she did not see any reason for the fever he had had for 2 days and it was probably a cold. But, he had a lot of earwax in his ear making it hard to see in the right ear if there was an infection. When we got to the ENT today for the follow up, he had not had a fever since Thursday morning, but still had all the cold symptoms, so I was hoping they might let us know if there was any infection brewing. Well, sure enough, he still had the ear wax in his ears. The dr had to get a nurse in the room to help hold Ben's head while I held his hands so he could use his "ear tickler" to get the wax out. OMG, there was a lot! Once he got it out, he did find there was an ear infection and decided to put him on amoxicillan.

Ben's right ear tube has also fallen out. The ENT decided not to do surgery again at this time. If he keeps getting recurrent ear infections, he may change his mind. His left tube is about to fall out as well. But, his hearing is excellent even with the tubes falling out. After the ENT, we had some lunch and went home. I was very very glad that they brought us back to the room right away because we did not even see the ENT until 10:15, even though our appointment time was 9:30. And with measles being in IL, I was not wanting to sit in the waiting room for 45 minutes. I was also glad that I brought some snacks and lunch for Ben, because I knew that he would be hungry after. We only have to follow up if Ben has more issues, or in 1 year for his annual audiology assessment. If he has more issues, we will reevaluate ear tubes again.

CHD awareness pic

February is here!

And with February comes CHD awareness month!

I am going to try to post facts on Facebook about CHD awareness all month long. I usually fail at this. Badly. :) I forget. Life happens. Especially with 3 kids, one of which has medical needs due to his heart transplant. But, here is your fact for the day about Dilated Cardiomyopathy:
A diagnosis at a young age usually, but not always, signifies a serious heart condition that requires aggressive treatment. The concern lies in the uncertainty of how the heart muscle will respond with each additional growth spurt. With some older children, the condition may stabilize over time with the aid of certain medications or surgery. In severe cases, small children may experience progressive symptoms quickly leading to heart failure. This presentation contrasts with most diagnosed adults who may only have minor symptoms without serious limitations or major problems for years. Information taken from here http://www.childrenscardiomyopathy.org/site/overview.php
This is what happened to Ben. He required aggressive treatment, eventually leading to heart transplant. He quickly went in to heart failure in the space of about 12 hours. Now, thanks to his donor, he is thriving! He does have what seems to be a cold, but that is not even stopping him. He was out sledding this morning in our blizzard :)

Measles, in Illinois

I wrote this when I found out that measles is in Illinois.
http://www.voicesforvaccines.org/why-measles-outbreaks-terrify-me/

I have gotten mostly only positive comments on it. Many people have reposted it and they have anti-vax or selectively vax friends who have made negative comments. Which I have attempted to dispel. I am again leaving it here, on Ben's blog, because it is important. I've felt like I have had to make changes to our life the last few days because I am scared. Scared that the person in IL that has measles may have come in to contact with others that came in to contact with others that could have come to our city. And if Ben were to get measles it would be deadly. So, I need people to understand. Please, VACCINATE! Protect yourself, and Ben!

Help keep this cutie safe!

Happy 3 year Heartaversary to Ben!

It's hard to believe it has been 3 years since Ben's transplant! It seems like just yesterday he was life flighted to Children's Memorial and we were preparing for a very long wait for the perfect heart. He was attached to so many wires and tubes just to keep him alive. And now, we are 3 years post transplant. 3 years ago we got that call that would forever change our life! I never thought we would get this far and at the same time I always hoped we would get this far. So many things have changed, and so many have stayed the same. We have decreased many of Ben's meds. We have gone from giving 16 different meds at various hours of the days as well as frequent feedings to 7 meds at 4 different times a day. Ben has also gotten much stronger, and I wouldn't be surprised if he decreases his PT very soon. But, at the same time, he will be on immunnosuppressants for life. And he is still in PT, for now. We have gone from this little guy hooked up to tubes and wires,

At Children's Memorial in 2011

to this big guy running around causing chaos with his sisters :) What a difference 3 years makes!  

Hiding in a box, 2014

Transplant life has been pretty good, and obviously much better than the alternative, considering that there was no way to help Ben since his Dilated Cardiomyopathy was too severe at the point it was found. It obviously does have its downsides such as the fact that he will be on medication for life and he gets sicker more often than others do, and it usually lasts longer than an illness would for others. But, for me, the fact that I get to see him toasting his sparkling cider on New Years, talking to his grandma, walking along with his grandpa, playing with his grandpa and sisters, and reading with his sister, among other things, those things make any bad parts worth it. And I can't thank his donor family enough for giving him that second chance. In their time of grief, they were selflessly willing to help my son so that he could live a full life! For that, I will forever be thankful! And it is a very happy New Year indeed! :)

Toasting on New Years

Talking to grandma

Walking out of the restaurant with grandpa

"Doctoring" grandpa

Reading with Klara