Home Sweet Home

After a very frustrating and exhausting stay at CHOP we are so grateful to be back home!   We were discharged very late last night after a long conversation with Lucy’s doctors about what we are going to do next. .. Lucy’s swallow study results confirmed what we feared the most, she silently aspirates with all liquids even thickened liquids.  She had difficulties with almost everything...

Monday

Lucy is sleeping and I am just sitting here contemplating the last few hours, days, week, month, year… Lucy had a pretty good nights sleep, she woke only twice which is considered a good night in our book.  Drew and I have a ratings scale by which we judge what constitutes a good night.  Waking  only once in the night is considered an awesome nights sleep, 2-3 times is a good night,...

Happy Father’s Day

Today was pretty uneventful as far as medical needs go. We were fever free all day, hooray!   Lucy is on 22 hour continuous feeds until her NPO status gets lifted.  She is tolerating her feeds for the most part.  She does have moments where we know she is too full because she gets  fussy, irritable, spits up, and generally doesn’t move all that much due to her belly being...

For better or for worse…

  Eleven years ago Drew and I made the commitment to spend the rest of our lives together, for better or for worse, in good times and in bad, in sickness and in health.  Today we celebrated our eleven year wedding anniversary here at the hospital, one of  the least romantic places I can imagine spending our anniversary.   Drew bought me a raspberry iced cupcake in the cafeteria...

Bedtime update

We are all feeling the effects of the past few days tonight, sleep would be greatly appreciated tonight Lucy girl!  I will quickly update you on what we know.  Lucy is still running a fever, but not as high as it was last night.  She has been on antibiotics for almost 24 hours and I think that they are helping her because her fever is much lower tonight.  I feel like this remaining...

Just a few of my favorites…

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Tomorrow’s another day…

I admit that I set myself up for failure when we originally scheduled this admission.  I was really hoping that we would be discharged today so that we could be home in time for the weekend, which coincidentally happens to be our wedding anniversary and father’s day weekend.  Lucy’s body has other ideas, and right now we need to be here.   Lucy has an aspiration pneumonia that...

More Updates

Update at 5:15   We are back in our room and Lucy is sleeping in her daddy’s arms. When I hold her I have to hold her standing up because when I sit down she wants me to nurse her, she is seeking comfort, I would be too if I had done to me what Lucy has. She is still NPO and will be until at least 9:00pm tonight.  At 9:00 we will try a slow bolus of Pedialyte  and see how things...

Where is Lucy?

Lucy is currently in surgery having her PEG tube placed.  They are a little behind schedule today, we did not actually get downstairs for her procedure until 12:00pm.  Once we arrived they took Lucy back fairly quickly.  They gave her a little bit of medication in her IV so that when I handed her over to the team it would make the separation easier.  They warned us that kids can...

So far, so hectic!

I will just begin by saying we are not having an easy time of things.  It all began last night when the resident on call and her med student came in our room to get a detailed medical history on Lucy.   I have come to the conclusion that it is very necessary for me to sit down and write out some sort of current detailed summary of Lucy’s medical history.  I think that it is...

Good Thoughts Needed

  Please say prayers and send good thoughts Lucy’s way right now.  We are having a very difficult time drawing the labs necessary for the tests she is currently undergoing.  She is on her second IV and it is barely working.  We have used all of her access veins and her stamina up. ...

Here’s the Plan

We have been anticipating this week for quite some time, but no matter how I am prepared I am not looking forward to what the next few days have in store for Lucy.  Today we are getting admitted at CHOP to have her endocrine studies preformed as well as have her GI scope, and finally her PEG tube placed.   This afternoon the plan is to get her IV’s in place.  She needs to have...

We’re Still Here

Just a quick update to let you know that we are still here, most of us are feeling better.  Jack went to school on Monday morning, he was feeling back to Jack by Sunday afternoon.  I however, have not been feeling well in the last 24 hours.  “It’s never good when the mama is sick,” a quote from my darling husband.    Off to bed I go, hopefully I will be good as new in...

We are a family, we share…

I know I say this at least a half dozen times a day.  “Sophie, can you please let Lucy have one of the twelve Barbies you are playing with.  Remember, we are family and we share!” “Megan, it would be nice of you to share one of your pages of your coloring book with Sophie so that she can color with you.  We are a family and we share.” “Jack, it would be nice if you let one of the...

Daily living…

Today I had one of those moments where I looked around my house and laughed silently to myself as I examined all of the things scattered around me.  Drew and I often  joke that if a criminal investigator came  into our house and tried to put together a timeline of events it would not be difficult to determine what we ate for breakfast, lunch, or dinner.   The dishes are often...

A little Mothering Guilt

Last weekend when I posted pictures from our Memorial day weekend I did not post any pictures of Sophie, mainly because we did not capture any good ones of Soph.  Well, I am feeling a little guilty about that so I am making up for it in this post.   By the way, recently we have been to a lot of kid functions where face painting has been popular.  The pictures with the messy face...

An attempt to fill in the blanks…

Recently I realized, when talking with a few friends, that I may not have updated all of the most recent medical information.  Information seems to be coming and going at an astronomical rate these days so I am going to attempt to fill in the blanks.  This is as much for me as it is for those of you medical junkies out there.  Writing all of these events down helps me to organize...