Hi again.  I just wanted to share how Meaghan made me smile today.  We spent the morning cleaning the "crabitat".  Yes, for those of you who knew, Meaghan and her brothers hermit crabs are still living with us.  The last part of the process was to fix more salt water for them.  Today Meaghan insisted we use the pink sea salt she got in her Christmas stocking.  As we ground the salt Meaghan picked up the pieces she wanted and ate them.  Gross to you and I, I know, but that is all part of her CF.  CFers lose more salt than non-CFers so they are always trying to replace it.  That isn't the best part.  When we were all cleaned up I asked what the kids wanted for lunch.  Meaghan asked me for a "salt sandwich".  I laughed and asked her, "How do I make a salt sandwich?"  It sounded easy, she said, "Put one piece of bread down and spread Nutella on it so the salt sticks."  She had obviously thought this through so I indulged her.  Much to my surprise, she ate it, she even said she liked it.  I learned a long time ago that Meaghan knows what she wants so most of the time I go along with it.  Today it made my day!

Hello.  I am excited to share this with you.  I wish it was more like how Meaghan's health improving.  Today I took Meaghan to Target to spend a gift card she received while we were in the hospital.  She is part of a research project for CF Related Liver Disease and each visit they give her a card for her time.  The study will follow her over five years and after these initial visits she'll only be seen once a year.  Today was a day she's been looking forward to for weeks.  She didn't waste any time making her selection.  I have no idea what this thing is.  It sings and talks and supposedly if you "nurture" it well it's singing improves.  All evening she played with it but I never picked up on any changes.  The short trip to the store completely wore her out.  She took a little nap during the car ride home.  It is hard for me to remember sometimes how sick she is.  I watch her play and she seems restless at home so I wanted to give her a change of scenery.  I thought she was ready.  I want her to be better as quickly as she became sick.  I've never been patient.  I don't know if I can do this.  Thanks to many of you, you make me think I can.  Just keep telling me that I can do this and that Meaghan will be alright.  I accept she may not be exactly like she was before, I hate it, but I have to accept it.  One more thing, please share Meaghan's story.  We need to spread the word about cystic fibrosis and support the Cystic Fibrosis Foundation in its search for a cure.  Much love for all of you, you mean the world to us.    

Hello all.  Meaghan continues to take all her meds and do her therapies just as happily as ever.  She can tell you in great detail about the job the medicine is doing inside her body.  I know I have said it before but please don't forget it.  There is a very nasty "bug" living in her lungs, taking a heavy toll on her little body.  I understand better than ever before, we need a cure and we need it now!  Cystic Fibrosis is a disease that primarily affects the lungs and the digestive tract.  CF has a median age of survival of just 38 years.  MAI (Meaghan's infection) is clogging her lungs, collapsing her airways, robbing her of full functionality.  I pray that each and every person who hears Meaghan's story clicks the link to contribute to the Cystic Fibrosis Foundation's life saving mission.  Not just for Meaghan but the thousands of children and adults who fight the same fight every day.  I have the great privilege of  having met a number of families like mine and have come to call many of them my friends.  Our children will never meet each other because of this terrible disease and we may not get the chance to meet each child but none the less I love them all.  I feel their pain and share their passion.  Join me, help cure CF!

www.cff.org/Great_Strides/MichelleJaecksch

Look at this happy little face, 

you have the power to add tomorrows.    

 
 
 

This was a BUSY day.  It started with Meaghan needing an emergency dressing change.  She has very sensitive skin and the replacement that was put on Friday gave her a terrible rash.  And, it was falling off.  I bragged too hard about the way she handled the change on Friday.  Today was positively awful.  There was screaming and kicking and crying, it took forever.  The nurse who did the dressing was very sweet, she even gave Meaghan a small gift to try to make things better.  Unfortunately, Meaghan has only two speeds and she was stuck in ATTITUDE.  Meaghan has been through SO much, I understand that she is just fed up, I really do.  Then we had an appointment at Hopkins.  Meaghan is maintaining her weight to spite all the upset and loss of appetite.  That is terrific news!  We are going to gradually work her back up to her regular overnight tube feedings to see if we can't get her to gain some weight again.  There's more good news, the PICC line came out today, so no more IV antibiotic.  That means, hopefully Meaghan's GI system gets a break and I get a better nights sleep!  The flip side of that though is that Meaghan had to go through the removal of the brand new dressing.  Even though we dropped the IV, the 3 oral antibiotics stay the same.  We are going to have another CT scan in a few weeks and the doc said that we will have another bronc.  The timing depends on what they see in the scan.  We may get the benefit of scheduling our next "sleep over".  This will be what we can expect for the next 10-11 months.  She looks great but the infection that has made her sick is very serious.  We have to wait a few more weeks to regulate Meaghan's schedule before she can do all her regular activities or go back to school.  For the first time in all the past weeks I feel a little bit of hope.  With a lot of love and patience Meaghan will be well again.

These are Meaghan's rewards for all the "stuff" she endured today.  Baby Meaghan has been around a long time, the rest is new.  It was a hard day!

I didn't get a minute to write this morning.  I was up almost all night trying to get Meaghan's PICC to run smoothly.  Finally she got the full dose and I went to bed at 1:45am.  Backing up for a second, Jimmy has been having problems of his own this week.  It started with strep throat over the weekend (while I was still in the hospital with Meaghan) then one bum ankle early in the week and the other last night.  Early this morning I was trying to schedule an appointment for Jimmy and one for Meaghan.  I picked Jimmy up from school so his pediatrician could check him out.  There was no swelling, bruising or signs of infection so with a little rest he'd feel good as new.  SO I took him back to school to finis the day :)  Meaghan's home care nurse came to the house after lunch to draw blood, change the PICC dressing and look into the problems I was having.  Meaghan was such a brave and strong patient, I couldn't be any happier with how the ordeal went.  Below are pictures that may help you understand some of the things I am writing about.  

    

This is a PICC  line.  The white tubing goes into her arm and through her body, almost to her heart.  I connect the "ball" to the blue end every 8 hours.  The white tape is a big band aid with  a window in it.  That's what they call the dressing.  It's pretty fancy.  There's a hard plastic "house" for the tube.  Everything needs to be kept clean and dry.  It also has to be changed once a week, unless there are big changes in its appearance.

The top is a before picture of the ball and the bottom is one that is empty.  Meaghan calls the empty ball a butterfly.

 

 

Her reward for being SOOOO good for the nurse.  I was prepared with  toys but what she asked for was french fries.  The shake was suppose to be her brothers but he wasn't home yet, sorry buddy, she didn't drink it all.

I have another ten minutes to wait.  All this waiting KILLS me.  I am letting it out here.  Meaghan's PICC line decided not to work for me tonight.  I have talked to the on call nurse and she helped me best she could over the phone.  I have no idea why this is happening.  It could just be a build up in the line which could be cleared with more medication ordered by the doctors.  We just won't know for a few more minutes.  I pray that this was just one of those weird things that will fix itself.  I doubt I will log back on tonight so look for details in the morning.  Thank you for following us on this dizzying ride, without you I would crumble.

Where does the time go?  I am crossing my days and nights off the calendar through medicine and treatment schedules.  Meaghan is happy to be home, she's taking her time checking everything out again.  I am relieved that Meaghan is so adaptable.  My feelings are all over the place.  I don't know how to do this.  My "normal" was never normal but this is unbearable so much of the time.  For the moment, the medicines and Meaghan's body are working together instead of against each other.  We follow up with the doctors at Hopkins on Monday.  I am uncertain about what they will have to say to us.  Fingers crossed.

One thing Meaghan looks forward to through all of this is new t-shirts.  With a PICC line we need easy, loose fitting clothes and most girls shirts are anything but.  Meaghan is happy though because she watched a lot of Phineas and Ferb in the hospital and Perry the Platypus is her favorite character.