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 :)