Wednesday, January 16, 2013

full-on freaking out

Yesterday I had a moment. Well really, it lasted the whole day, into the night, and this morning. I had read some information just put out by the CDC regarding the current flu season. Information regarding kids with neurological disorders, cerebral palsy being mentioned among them. It looks like this strain of flu is particularly difficult for this subset of the population and they are recommending keeping out of public places. Oh and Jack has Chronic Lung Disease, the scary reality of micro preemies, added on top of all of this.

Enter full-on freaking out.

I emailed Jon right away.  I went to our Facebook page with my concerns. Do we keep Jack in school? Answers and opinions came pouring in. I did some research. I called my mom. I called Jack's Pulmonologist at 4:45 in the afternoon and left the longest (hopefully not craziest) message. I really needed an expert and rational opinion. I counted down the minutes til Jon came home from work. We talked. I needed another ear, so I met a friend later. We chatted. I slept fitfully. I woke up with a yucky feeling in my gut. I took Jack to his classroom prepared to have a long chat with his teachers about my concerns. We did talk. It didn't make me feel better. The one thing I was waiting for was a call back from Jack's doctor. The person whose opinion I most respect. That call came in a couple hours ago.

Here's what the doctor said:

1) In his expert opinion, Jack does not need to be removed from school.
2) Jack has had no major colds or flu since leaving the NICU.
3) Jack's lungs are very healthy for his early beginnings. He is on no steroid inhaler, lung meds, and has never been hospitalized for lung related issues. He came off home oxygen at 8 months old and has never gone back.
4) Our two years of strict isolation during cold and flu season left Jack with the best start we could give him.
5) Jack is now old enough (turning 4 yrs old in May) and strong enough to fight off illness in the general public. Jack's immune system is ready.
6) The flu shot is essential and effective for this particular strain of flu that is wreaking havoc. Jack (plus mommy and daddy) got the shot in October.

I may be forgetting something, but that is the gist of it.

Being afraid of germs is so ingrained in the preemie experience, and rightly so. For little ones born without immune systems, it is life or death. And from the minute you arrive home from the NICU, it's your way of life. So I'm sure you can understand why it's so very hard to move from the place of "better safe than sorry" to "lets see how he does."

But that is exactly what we are going to do... enter more freaking out.

The plan for now is: keep Jack in school and we will see how he does. If he gets sick, we will closely watch how his immune system stands up. And yeah, I don't feel amazing about this, but I also know that school is where Jack needs to be. He is blossoming because of it. It is time to let our little guy go fully into the world.

P.S. this decision was made under our unique circumstances with Jack's medical team. Each preemie and child with cerebral palsy is different. Please contact your own doctor to evaluate what is best for your little one. 

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Tatum said...

Sounds like a good plan!

Shannon said...

Solid plan, Jessi. I just got word today that Wisconsin's flu season hasn't even begun. So the ridiculous amount of positive cases we're seeing in our hospitals and clinics that we feel is a full-on epidemic is expected to peak in mid-Feb to March. I HATE WINTER!!

Angie said...

Im having a freak out too. the trio just got over stomach flu, and now my oldest has strep! Im having trouble breathing :( this mommy business is hard. hang in there.

Michelle said...

I could have written this post almost exactly this past week. My mom was watching my kids last Friday night. They spent the night with her and in the morning she woke up feeling terrible. I picked up the kids and she went to the dr. She tested positive for the flu. I started freaking out. I didn't know who to call on a Sat. Why must my freaking out always be at night or on a weekend when the ped is not available? I found that our ped had given me his personal number in an e-mail a while back. I have never bothered him on this number but had to call. I wanted to know if we should start Tamiflu as a precaution. His answer was much like Jacks ped. He told me it was time we start treating them like he would other kids! He assured me they have moved past the excessive caution stage into the "normal" kid realm. What a relief! But I think the NICU/germ phobia/isolation/fear of everything part of being a preemie parent is hard to let go. Here's to hoping all our kids stay well!

Anonymous said...

Oh Jessi...I so get this. It is so challenging to put that germ-a-phobia at bay after having it so ingrained in our heads during the nicu. I'm fairly certain that I will have a freak out every time Isabella sniffles for the rest of her life!! Hang in there! Love your blog and your sweet little Jack. You are an awesome mommy!!
Rachel in Maine:)

joanna said...

As someone who freaked out with you on your fb page ;) I'm really happy to hear that from Jack's doctor. My preemie isn't quite as old as Jack, but hasn't really had any major sickness either and I'm really still struggling with that line of, how isolated do we need to be?

The Wright Family said...

My 26 weeker is almost 6 months old now, and although we are in the thick of isolation, I often wonder how we will "wean" ourselves from isolation. It is already so engrained, but many people ask when it will be ok to increase his exposure. We always answer with a generic answer, but then wonder to ourselves how we will end it. I assume we can let down our guard this summer, but will be back into isolation mode next winter... but we often wonder how we will know when it is okay to let go of this idea. Any advice on easing this transition?

Jessi said...

Well, we were totally isolated Jack's first two winters. That means he only went to the doctor, if needed, and stayed at home. Then, the third winter, we started to go out now and again. To the store (always sanitized the cart!) and we let him be around a healthy kid or two. Jack was never put in a nursery or a large group of children until this, our fourth winter. Jack is now fully integrated into the public, goes to school, has playdates, etc. I still get very nervous, but we were so super strict his first 3 years, that I can't do much else now that he is going on 4 yrs old!