Home of the Four Trans

Justin’s recent doctor’s visits are as follows:

Pediatrician; well check and immunizations

I don’t know where on the chart he is, but Justin is on the chart for height! I hovered over the office assistant as she mapped Justin’s height on the chart in utter anticipation because I knew my boy had grown, but I did not know by that much! She measured him at 32 inches. Justin was measured at 22lbs 10oz for weight which means he is still below the normal curve for that, but he is trending upward on his own curve, which is exciting.

The pediatrician and I discussed RSV and the Swine Flu vaccination among other things. He is recommending the Synagis even though Justin is now two, and the swine flu vaccination. This is quite opposite of our cardiologist’s recommendation. I still have to do my own research before making a decision.

Cardiologist; echo, examination, and consult

The echo showed that Justin’s heart is stable; this means his leaky AV valve is not as severe as it was a year and a half ago. His sats were at about 85%-86% and blood pressure was 71/43 (low due to medication, but normal for him). His Captopril dosage was increased to 3ML three times a day from 2ML, and his Lasix dosage was decreased to 1ML once a day from .7ML twice a day. Nothing too exciting to report.

I suppose unexciting numbers are the most exciting news for me. The waiting to see the doctor part is also pretty nerve wrecking because I never know what to expect. Most of the time Every time he comes in, I just want him to blurt out the results of the echo, even before saying ‘Hi’ and ‘How are you’ so that I could decide if I should continue to hold my breath while my heart pounds madly against my chest, or sigh a breath of relief.

This consultation started with us talking about orthopeadics and his success with therapy because I wanted to know if his ability to walk would affect how well he would receive his (possible) new Fontan circulation as the Fontan circulation will be pumping oxygenated blood from the lower half of the body. The simple answer is no. If Justin’s ability to walk would determine how well he received the Fontan, then I would push for a brace or some sort of support so that Justin could walk. As it is, I will not, although he will be working on walking with a walker during his physical therapy session. At the same time, I will also seek a second opinion as far as bracing goes.

I hurriedly transitioned to, “First of all, how did the echo look,” while holding my breath and hugging my child.

“It looks good. Good,” he said. I hugged my child tighter and kissed him on the head.

No matter how good he looks, I’m always afraid to hear bad news.

Aside from those topics, we breezed through my questions about Synagis and Swine Flu vaccination. I also wanted his opinion on what he thought about me enrolling Justin in a group therapy program. I’ve come to  know his perspective as quite laid back when it comes to Justin and his interaction with the world. He said no to Synagis, but to check with infectious diseases. Not a definite yes to Swine Flu because of the adverse reactions he’s heard of children getting. He said yes to Justin joining a group program. Ultimately, the decision is all mine and Loi’s as far as how to keep Justin safe. But, I wanted a cardiologist’s point of view in terms of sickness and it’s affect on the heart. He seemed very laid back…

As a self proclaimed germaphobe, I worry about Justin–a lot. But, I don’t want to keep him from experiencing his life either. Yes, he’s young, some may argue, and he has the whole world ahead of him. With this perspective, I should just keep him closer for as long as I can, and let him enjoy life after his third surgery, or when he’s bigger. Here’s the flaw in that argument: Justin is not a regular kid. His medical history is extensive and the long term certainty of his life is not. I’m  not a risk taker, but when it comes to my child and his life, I’ve learned to take a few risks (within reason) because even with my hovering and protecting, I could not.

So, that’s that.

Dentist; cleaning and examination

No appointment is ever really just any ol’ appointment. Not even a routine clean and check up. Because of Justin’s medical history (congenital heart disease and asplenia) he is required to take a prophylactic dose of amoxicillin prior to getting any type of dental work done, including a routine cleaning. This is to prevent a bacterial infection in his blood stream and endocarditis. Of course with the risks (even if minor), I became quite apprehensive about the entire thing. As usual, I had to give myself a pep talk with the other voice in my head to calm down and trust the dentist. I had every reason to because he’s always been upfront with me with his medical expertise. I was so thankful that it was he and not the dental assistant (although they’re all so very nice and patient) who cleaned Justin’s teeth. There was some crying on Justin’s end, but only after he couldn’t hold it in any longer. I could see that as I lowered him into the dentist’s lap, he was scared and resisted from crying. It was only after the dentist put a plier type object into his mouth to keep it open when he started to wail, poor thing. I think, more than anything, he was afraid because I had to hold him down for yet another ‘procedure’. When all was done, I pulled him back up, gave him a squeeze and told him what a brave boy he was. We sat there for awhile before I brought his head to my shoulder, and then he calmed down and was ready to find his prize. Then, all was forgiven. He even gave the dentist a high five. As usual, my boys left with a grip load of stuff–new toothbrush, toothpaste, floss, prize, sticker, and balloon. No wonder Nathan loooooves going to the dentist.

Neurologist; routine follow up

She is concerned with the lack of progress Justin’s had in therapy in regards to strengthening his feet and hip. She would like to see further intervention with a brace, though it is not her area of expertise to recommend this. She suggested to get a second opinion if our current orthopedist says no again.

In conclusion…(haha)

Woah! That was a mouthful, but there’s more! Justin has made a lot of progress in his cognitive and speech development. I will include this in another post!

Thanks for checking in on our Justin Boy.

This entry was posted on Wednesday, September 16th, 2009 at 12:02 am and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.