Another day, another diagnosis

So, we saw Pulmonolgy today, because we don't have enough teams following Ben and we wanted to add another one. I kid, I kid ;) Ben has had many many upper respiratory infections, which hadn't really surprised me, I mean, he IS immunosuppressed. How is he supposed to fight off any germs? But, the pediatrician thought it would be a good idea to get him assessed for Reactive Airway Disease (RAD). Also, when he had his speech assessment back in March, the speech therapist said that the reason his belly is so bloated could be due to diaphragmatic breathing. And all that air is getting built up and make his belly bloated. Or at least that's what I remember from how she explained it. And she said she sees that a lot in kids who have RAD, so it might not hurt to get it assessed. Also, RAD can affect speech either now or down the line, because of how a child compensates to breathe. So, she gave a recommendation of someone to see at Edward, but ultimately we decided to keep all of his teams at Lurie and went to the Lurie outpatient center at Arlington Heights for this appointment.

When I got the letter explaining his appointment, it said to expect to be there for 3 hours since it was a first time appointment. 3 hours!! And I had to bring both Ben and Klara. Of course, they can't perform pulmonary function tests on him, so I was expecting more like 2 hours, but still, that's a long day. So, we packed plenty to eat and toys, books and the iPad for both kids. Of course, Ben decided today, that he was not going to do anything for the nurse unless I did it first. She was great about it though, she did the pulse ox, BP, and temp, (not really, just sort of laid them on me) on me first and then he let her put them on him. Klara was awesome the whole time. She played on the iPad and showed Ben pictures and games on the iPad. The dr went over all of his records and all of his admissions. I had signed a consent for them to access his admissions from Edward as well as ER visits to Edward. The only ones they were unable to access were the ones at CDH. But, they had a ton to look over. And the dr said that based on the history she took from me, and the records she looked over, she thinks he does have Reactive Airway Disease. Not just because there is such a strong family history of asthma on my side. But because of how many illnesses he has had, and how he reacts to those illnesses. Apparently, while it is not uncommon for immunosuppressed patients to have quite a few illnesses (obviously!) it is not common for them to have wheezing and shortness of breath and such long coughing spells with it. So, she put him on a steroid inhaler, which we have a spacer to give him the inhaler since he is a baby. He takes 1 puff of that, twice a day when he is well. If he is sick, he will take 2 puffs twice a day as well as his xoponex nebulizer. She also gave us a xoponex inhaler to use with the spacer. She said he can go off of the steroid during the summer. And possibly he won't need it during next spring. But, she will want him on it in Fall and Winter, and this Spring since it is a bad allergy season and he has already had quite a few illnesses.

So, we now have that and we follow up with her in 2 months. I mean, what's 1 more team when we already have 8? And obviously if he gets sick, we will see her more frequently. But, unless that happens, we will see her every 2 months for now, just to monitor. The good news is, even though it is a 1 hour drive, it is a much easier drive than going to Chicago. So, at least we can do it at Arlington Heights. That's good for us. And hopefully once he has gotten used to the inhaler and if he doesn't get sick too much during the spring and summer, the appointments can be less frequent. So, another diagnosis, another team, but he's no worse for the wear. He still is doing well. It only seems to get bad when he is sick. So, if we can keep all the sicknesses away, we are good! :)

This is not recently, just to show what happens when he gets a cold

Having fun outside, feeling great!

New meds

I received a call from Ben's kidney dr (well, the nurse was the one that called)on Monday saying that his sodium bicarb levels were a bit low. He is on Cytra-2 for this. He is at 9 ml once a day. The dr wanted us to go up to 13 ml once a day. The nurse said if we needed to we could break it up to 2 doses. I told the nurse, "my concern is, he has very bad diarrhea ever since we started him on the cytra. It has gotten slightly better to where it is only 2-3 times a day, but I am afraid 13 ml is going to worsen it." She told me we could go up slowly increasing by 1 ml every couple of days. IF his diarrhea worsened, call back and let her know and we would go back to 9 ml.

Well, for the past 4 days, Ben's GI problems have only gotten worse. I called the nurse and told her "This is not working. I am changing his diapers at least 8 or 9 times a day. It is 10 am and I have changed 4 diapers already and we are only at 11 ml right now." So, she told me that we could go back to 9 ml. His bicarb levels were low, but not dangerously low. The danger with his bicarb levels being low is that he will not grow properly. But, there is also a danger in that if he is having constant diarrhea and vomiting. As well as what it could do to his GI system. They will keep monitoring his levels and seeing how he trends. He has never had the same number for these levels, so it could have just been an off day as well.

After we were done discussing that, the nurse let me know that he also had a very low vitamin D level. They would like him to be at about 30. His level was 13. So, he will have to take a mega dose of vitamin d once a month. The interesting thing is, the only way to get this mega dose is in pill form. Which, Ben is 2. He doesn't do swallowing pills. So, she said I could cut it open and squirt the liquid in his mouth. We will check his levels in about a week and see if that helped as well. I asked if being in the sun this summer might help, or adding in more Vitamin D foods. the nurse said that his levels are so low, that over the counter supplementation and sun is not going to help him. And anything short of going to the Caribbean and sitting in the sun for a week would not work. Besides which, they advise sunblock at all times, so even that would not help him. So, he will just have to take this mega dose of Vitamin D once a month. And it should not have any side effects to his GI system.

I did get the Vitamin D from Walgreens today. The pharmacist asked how I was going to give it to him since he was so young and it would be a choking hazard. She suggested squirting int in his food. I thought about that, but decided squirting it in his mouth would be best since he is at this stage of just throwing his food these days. We got home and I said, "ok Ben, time to take some medicine!" Ben promptly replied, "NO! No more medicine! I no want it!" I told him, "you take your medicine and I will give you chocolate." That got him running. He did very well with it. I squirted it in his mouth and then gave him 5 chocolate chips. Hopefully enough was in his mouth to make a difference. It's not a large pill, and I had to cut it open and squirt it in his mouth. So, hopefully enough got in his mouth to help.

The other thing about Vitamin D that I found out-If you are deficient it can effect your CRP levels. Remember those levels that they were worrying about back in January and freaking me out that he was in heart block? Yep, those levels. It can also affect heart health. So we definitely want him to get to a good level! It will be interesting to see where he is at his next labs.

Enjoying the sun on ONE of the nice days we have had recently