1st Grade Chat

First of all, let me say welcome to any new visitors to Faith's blog.  I spent some time this morning talking to all the first graders at Faith's school today and handed out an information booklet that I made to help the kids understand what Faith is getting ready for, explain why she will be out for awhile and how they can help while she's gone or if they see her somewhere for the month or two she will be out of school, or when she gets back to school.

The kids were really wonderful.  They didn't have too many questions, but the ones they had were very thoughtful, will she be okay, will it hurt, and one of my favorites - how long is the flight to Cincinnati!  The other thing I thought that was so cute today was when I asked if any of them knew what Faith was most excited about coming from this surgery.  One of the girls raised her hand and said "She wants to SWIM!"  Faith had already told them!  I was so proud of her for telling the kids about her surgery and the good that we hope will come from it!

Here are pictures of the booklet I created...

I wanted to show the kids how Faith has grown just like them...

And then I gave them some simple info about the surgery 

with a picture of Ellie with the head gear on that Faith will have...

Some more info and pictures and we talked a lot about 

ideas of how they can help Faith when they see her

and then I shared some pictures of Cincinnati and talked about the 

fun things Faith has gotten to do, going to a Cincinnati Reds baseball game 

and seeing a polar bear swimming at the Zoo, and a picture of her brother

Anthony giving her a kiss after her first surgery...

The kids were so wonderful and I'm so glad Faith has such good friends in her life.  I hope the parents and staff that are following her blog will enjoy knowing how she is doing.  I warned Mrs. Frank that I can't promise to make this blog always be kid friendly as we use this to share details both good and bad with our extended family, friends and other families with children going through the same difficult journey.  So, just decide what you want to share with them and I will make sure to post some pictures of the good things we do and see during this next milestone of "Faith's Journey".

Faith is SO sad that she is missing the last couple of days at school this week - but she is still sick and we have to get her better by Monday if we are going to be able to keep the surgery scheduled for Wednesday.

Update on Visit to Pediatrician:

So my earlier post I said the nurse told me on the phone the doctor most likely wouldn't put Faith on antibiotics, but I decided to call them back again and bring her in.  The nurse took her vitals and her temperature was back to normal, but her oxygen level was between 88-90%, which is a little low for her, she's usually in the mid to upper 90s.  But it's not really a huge concern until she drops into the 70s.  Our regular doctor was unavailable, so a new doctor came in and we talked, she explained why they typically don't like to give antibiotics and I said I understand, but I'd like to try anything that might get her better in time to still have surgery. I think we were pretty much at an impasse, but then she listened to Faith's lungs and said "the good news is I'm going to prescribe antibiotics, the bad news is she has some fluid sounds in her right lower lobe which might be pre-pneumonia".  

So, we started her on a 5 day course of Zithromax.  She also said usually around day 3 or 4 kids of this kind of cold is the worst, so I'm hoping today is day 3, and that by Monday she is mostly better.  But, if it turns into full blown pneumonia then there's really nothing we can do about it but work on getting her better and just letting go of all the planning work.  

I know from hearing so many other families' stories that these things happen so frequently and there is nothing we can do, so I just have to relax and let go.

Later on, the pulmonologist's office called me back.  Our primary doc is out today, but her partner (and her husband!) called and he said he was going to suggest Zithromax as well (which he would have called in for me over the phone as I had wanted!).  He said the reason they are more aggressive with antibiotics with trached kiddos is because even it is a viral infection, they are more prone to getting yucky bacteria in their lungs from the extra mucous and the trach opening being more direct access to the lungs.  It was nice talking with him.  He noticed there was nothing in Faith's chart for the last year and figured she must be doing really great, which is exactly true.  He was also happy to hear we are going to Cincinnati because that is where they send all their complicated airway cases -- to Dr. Robin Cotton, a world renowned ENT who seems to the best in reconstructing airways.  Dr. Cotton is doing Faith's tonsillectomy and adenoidectomy right before Dr. Gordon does her jaw distraction.  We just got lucky by choosing to go to Cincinnati for Dr. Gordon that we also get this amazing ENT surgeon.

So, say a prayer or keep your fingers crossed for us, or send good vibes that Faith is better by Monday!!

Thanks for reading,

Robin