Monday, September 13, 2010

T minus 17 days

That's how long we have until Flu/RSV isolation begins. It has been a wonderful summer and I have been dreading this time for a couple months now. It means we have to be pretty much holed up in our house from October through April. The good news is that this is the last winter of isolation and Jack's immune system and lungs are getting stronger and stronger each day. He still has not gotten sick yet (since coming home from the hospital exactly a year ago) and we are going to be vigilant to try and ward off any germs that come our way.

Jack is awaiting approval to start Synagis and hopefully that will be covered by insurance again this year. It's a monthly shot that protects against RSV. It's super expensive though (around $2000 a shot) and insurance will only cover it if the patient meets certain criteria. If he's approved, it will be such a relief to have that extra layer of protection. Of course all of us will also be getting our flu shots in the next month or so. Anything and everything to try and protect those precious lungs! I do not want to end up back in the hospital because Jack gets a cold. In a normal child, a cold is no big deal. But in Jack's case, a cold can mean nebulizers, humidifiers, and often hospitalization with oxygen, sometimes even with the vent. Not good and something I have to keep in the back of my mind constantly, no matter how healthy Jack looks.

So I'm sure I will get back to blogging a whole lot more once we are into the month of October. I remind myself often that it's not all bad to be in isolation. It helps me focus on things and projects that might otherwise not happen. It helps me do all of Jack's therapy and exercies consistantly. I have already started to plan things to do on evenings and weekends so I get out of the house a bunch. I do get kind of sad when I hear friends talk about playdates for their kids and stuff they are going to do this fall. I just don't like missing out! Jack has loved getting to be around kids this summer. He gets so excited and even though he can't play with kids yet, even being around other kids and watching them is so much fun for him.

Oh the life of a 23 week preemie is no cake walk, but it's been going really well these past months. I am grateful for the fun, healthy times we've had and looking forward to the day when we don't have to worry so much about germs. It's so funny to watch other kids play together - how they share toys, saliva, kisses, hugs, snot, etc. I am sometimes tempted to grab my hand sanitizer and wipes to clean them up. I find myself getting nervous when I see a runny nose. And hey, EVERY kid has a runny nose and they just use their hands to wipe it up. But that is actually the "normal"... we are the abnormal. So, deep breaths for this preemie momma and trusting in God (along with some common sense) to keep Jackpants safe and healthy through the fall and winter.

And the good news - back to blogging!
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4 comments:

Julie said...

I think dread is one of the worst feelings! Glad you're planning some outings and projects - me too! I'm so proud of you - you are a great mama - one who's sacrificed a lot!

babs said...

Ah, that makes for a long winter. It was so good to see Jack this summer. He is such a happy boy! And, I know it is selfish, but I'm looking forward to you blogging more...

Tami said...

That constant thought in the back of your mind can drive a person crazy! Planning things to get you out of the house will be a great way to help pass the time and not go stir crazy. I hope that fall and winter flies by for y'all so you can get back out and enjoy new places with Jack!

Emily Real said...

I am looking forward to more bennion blogs especially being further away from you now! But I'm sorry it means isolation...I agree, you HAVE sacrificed a lot, and continue to. When I read the things you have to keep in the back of your mind even when Jack looks healthy (that a common cold could mean hospitalization) I am reminded again of how amazing you are. Good job, Mama! Be encouraged, you are supported and loved, and real viruses don't get spread online, so network it up in cyberspace. :)