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.

Home Sweet Home

At last.  Meaghan and I are back home with everyone.  It was a long day trying to get here.  We had to wait a long time to get everything in order.  The nurse from Hopkins Home Care was here waiting for us so she could start Meaghan's afternoon meds.  It was dinner time before we were all alone.  After enjoying a home cooked meal ;) we just hung out and reconnected.  It feels so great to be together again.  Meaghan has to spend this week at home on IV antibiotics.  On Monday 3/19 she has to go back to clinic.  I hope at that time they will have made up their mind to stop the IV's and take her PICC line out.  It will still be a long time before we know how the bug is responding to the treatments.  The best way to know is by repeating the CT scan and bronchoscopy  in about a month.  It's going to be a long month.

Thank you everyone for showing my family so much support.  From the bottom of my heart, we love you!  Check back soon, we have so much further to go.

Hello again.  Today is the last full day for us in the hospital again.  Weekends here are strange to me.   Meaghan and I are excited to get back home.  As I am sure the rest of you are too.  As excited as I am I still have to caution everyone.  On the outside Meaghan looks great but on the inside she is a huge mess.  Her lungs are full of thick sticky mucus and a lot of the airways have collapsed.  The numerous medications have taken over her GI tract and now even her skin.  There are teams of people who have to coordinate the effort to get her better.  Her regular docs, the pulomonologists, infectious disease docs (for her rare, slow growing hard to treat lung infection), eye specialists, nutritionists, respiratory and physical therapists.  What will decrease the infection and kill the bug while keeping in mind what's right for Meaghan are a very delicate balancing act.  She needs long term, round the clock meds and tons of support.

I am so proud of her.  She is the strongest, bravest girl I know.  We played the game you see in the picture last night and her answers to the hospital related questions choked me right up.  Through all of this she has learned to verbalize her feelings about anxiety, fear and pain.  She is able to share them with me, her doctors and nurses and that has the whole floor talking about the cutest, sweetest girl they've met.  Thank you God, she's mine.

Jumpin' Monkeys

Good  morning.  Things this morning are holding steady.  Her PICC line looks a little wet so the nurses are going to check it again.  The good news is that the only "problem" with it is positional.  So if we sit or lay just right it works fine.  Her belly is still not working right but they increased her probiotic to see if that helps.  She is losing a little weight and that is not a direction we want to be moving in but we have to wait and see.  That is the most common theme these days.  One other thing, her skin.  She is having some problems with the skin on her palms and the bottoms of her feet.  I have told three nurses and no doctor has come to see it yet.  If I have a complaint, it's that.  The nurses for the past few days are absent alot and don't seem to be responding to my concerns.  The minute I see a doc I am going to complain.

My Funny Girl

It's hard to remember where I left off.  The good news is that we still think we are coming home on Monday.  We are waiting to see if Meaghan's PICC line is working.  She started having trouble with it last night.  I was hoping that we would get some real sleep last night and I did everything I could to make that happen.  Unfortunately after midnight the nurse woke me to tell me Meaghan's PICC wouldn't infuse.  Then again at 12:30am when the PICC nurse came to check it.  The two of them had a back and forth over how it was and wasn't working until after 1am.  Finally the decision was made to do an xray.  At 4am I had to leave the room for the xray.  At 6am I was up for good as the nurses were preparing to change shifts.  There is a flurry of activity at that time with Meaghan's feeds ending and vitals check.

In general today was a good day.  Meaghan's belly was less upset and she was eager to do things.  EXCEPT when it was time to change the dressing on her PICC line.  It is like taking off a really big band aid.  Five of us held her down and entertained her the best we could.  The dressing was changed and the line looks good, hopefully it works better tonight.  Kerry, from physical therapy saved Meaghan's "fun" time for after the dressing change today.  Meaghan jumped on all the black tiles in the hall to avoid being eaten by the alligators, crocodiles and orcas in the blue tile spaces.  It gave everyone a reason to smile.

This is bubble pep (therapy)

After her therapy they listen to her lungs

Before the PICC dressing change

After the PICC dressing change she played with  her new friend, Nikki

Hello.  Today went pretty well.  We talked to a lot of people and heard a lot of things.  Meaghan does seem to be doing well with the treatments.  The biggest problem for the day was getting all the prescriptions filled.  The amounts and doses were changed when Meaghan was admitted so it's a little like starting over.  I think that is handled.  There are two things that still concern the doctors: one of the medicines that Meaghan is taking can cause problems with her vision.  The extent and permanent nature aren't clear.  She will have to be followed by an eye specialist.  And we haven't managed to settle her GI system yet.  Everyone feels it is a side effect of the numerous antibiotics she is on but they are testing to be sure.  She is in a good mood and only complains of being hot.  Her nurses give her lots of ice packs to rest on and Meaghan really likes that. 

She didn't win at BINGO today, sigh.  But she got the prize she wanted just for playing, I told you they do it right around here.  The other highlight in her day was going outside.  There is an outdoor play area on the 3rd floor for kids to use in warm weather.  She had the whole place to herself.  It was a little windy up there but the sun on our faces felt great.

The other bit of news you might like from today is when Meaghan will be home.  The doctors are saying that Monday should be fine.  We're giving her a chance to rest and settle down a few more days.  She'll be on IV antibiotics at home again for at least 2 weeks and continuing the oral meds up to a year.  We have to be very careful for a while longer, no school yet.  Leave it to my daughter to pick up a bug that no one has the instant treatment/cure for and the only copy of the book on how to treat it is being written by her right now.

Meaghan was allowed to play eye doctor

Then it was her turn to be examined

That is how you play with a slinky

She made her shots with one good hand

Well, I don't want to sound too optimistic but I just can't help it.  This morning is off to a good start.  Sleeping has been hard this visit but not having an effect.  She's up and talking to the many people who are poking around. She is not coughing and has not needed any oxygen.  The big news for the day is that the infamous hospital BINGO Game was rescheduled for today.  Meaghan loves BINGO and the children's center does it up right.  The kids can play from their rooms so even the kids who can't leave the room can play watching TV and calling on the phone with BINGO! 

I haven't talked to the docs yet so I don't have much info as far as the procedures from yesterday and how we are going to proceed.  I am just trying to enjoy the moment for what it is.  Things are quiet and Meaghan is smiling at me.  

 Last Night we were busy looking for fun new ways to play with a slinky

 

Once she could keep her eyes open she was able to enjoy being spoiled. 

Check back often, you never know with Meaghan what she might be up to (or in to).  

The bronchoscopy, PICC line and moving her IV were all done this morning as scheduled.  The doctors said they got more mucus out than the last time.  We should get stain/smear results later today but the other cultures will be 5 or 6 more days.  Meaghan is a little more groggy this time, they had to give her more anestetic during the procedure due to bronchial spasms.  We should be prepared for her to need a little more support this time too.  Maybe even continuing on oxygen a day or two.  Once again, a lot of waiting and not getting many answers.  They are still writing the "Book of Meaghan" and this horrible infection.  We just have to be patient, trust that the medicine starts to work. 

Morning vitals check



Airway clearance

In the recovery room



Back in her room, with a new friend. Time to rest.

Ok.  Our day went well.  We took advantage of the "free"time as you can see from the pictures.  Meaghan and I talked about tomorrow with all the right people and she is as prepared as she can be.  I am scared out of my mind.  I'm asking that you continue to pray.  We need to make it through the bronch and PICC tomorrow and really start getting well again.  Meaghan's recovery is a steep uphill climb that will likely last 12 months!

Who knew you could do so many things with pipe cleaners

Meaghan is collecting Hospital Play Babies.
Each one has had her own "procedure"

It's tiring work doctoring all those babies.

   

I changed the name of the blog already.  I liked what it was but this is a fun play on Meaghan and I have been overthinking everything these days.
Pictiures make it better to look at too.

This morning Meaghan is getting her babies ready for the day too.

 She calls this her half piano half xylophone :)

Waiting for everything is hard.

Today is a day for adjusting.  Meaghan is on a new IV antibiotic and there was a change in one she was on previously.  They have also put her on continuous feeds for the day.  At some point today the specialists will stop by to talk with us about the current course and how we can improve the treatment.   Then, early tomorrow morning, Meaghan is headed to the OR for a broncoscopy and PICC Line placement, again :(

Hello All.

 I hope that this makes it a little easier to follow what is going on in our crazy lives.  I started off in the past which was a little strange but I am new to all of this, I'll try to learn to do this quickly.  Meaghan is back in the hospital.  She had a CT scan today.  The doctors were hoping that all the treatments would have been more effective by now.  This is one slow growing, aggressive bug, so we have to do this hospital stay over again.  Meaghan is scheduled for a broncoscopy and new PICC Line on Wednesday.  A new IV antibiotic was started already.

This bug has got us down, but then I know Meaghan and she's a fighter.  This bug is going to be sorry it picked her to bully around.

We are praying for the best.  Please do the same.

Meaghan's 1st Hospitalization

Meaghan's first hospitalization came out of the blue.  During a routine exam and chest xray a "big" pneumonia was spotted.  She was admitted and treated.  It was a long, difficult time, most of you know the details.

While we were there Meaghan received a very nice basket of gifts from Riley Children's Hospital in Indiana

On Tuesday Meaghan had a bronchosacopy and PICC Line placement.

 By Wednesday she began to feel much more sick.

A big bunch of balloons from her neighbors put a smile on her face!

 She had a nice view from her room and wanted to be outside.

 Everyone tried very hard to find fun activities to keep her happy.

 This is Meaghan's new hospital play baby, "Ally".  Ally got a PICC Line just like Meaghan. 

 Some days just sitting up was too tiring.

Meaghan loved working with the physical therapists.

But she only wanted to go home.

Finally on Monday 2/13 she got her wish.