No more NG tube

Kamryn's new song

I've got no strings
To hold me down
To make me fret, or make me frown
I had strings
But now I'm free
There are no strings on me

NO MORE NG TUBE it's official
Kamryn is eating 6 bottles a day so the Dr is okay with the tube being out.  Hooray!

Saw the Doctor, what a day

Yesterday was a doctor day.  What I didn't realize was how this would make me feel.  I didn't want to be there.  In the past I have been eager to go, because these are the people who can help Kamryn get better.  She is better.  I found myself in tears most of the day.  (I blame the start of the tears on the music I was listening to before the appointment.)   I view this as normal.  For so many months the hospital, was a place of controlled anxiety and stress, helping Kamryn to get well.  I had to be in control.   I know I'm not done with the tears, but I am ready to move on.  The next appointment is in a month.  I am hoping for no more tears!

Yesterday was and early day.  It began with 2 of the important meds and the plan for the rest of them to be given on the ferry.  Kamryn had another idea.  I packed the car, put her in it and drove to the ferry.  We caught the 6:40am ferry.  By the time we arrived on the ferry she had pulled the tube out.  There is nothing worse that putting a tube back into a screaming child.  Try it on the ferry.  Let's just say the lady putting on her makeup in the next car chose to leave her car without makeup and put it on upstairs in the bathroom.  Kamryn screamed, the tube went in and so did the meds.  Until, she pulled it out again when we arrived at the Doctors office.  I left it out with the hope that it could be left out.

What happened at the appointment?   Kamryn was able to get rid of yet one more med.  Hooray no more shots!  Her feedings are modified to 5 bottles and an overnight feed of the equivalent of one bottle plus what she doesn't eat over the day.  Yes, we still have to keep the feeding tube.  But at least for now she doesn't have it in.  Kamryn is now taking her medication orally.  While her weight is not what the doctors want, it is still good for an Aubrey child.  10lbs 8oz at 5 months after a heart transplant, we will take it!

Over all today was a good day.  The tears are cleansing tears, those ment to heal and not harm.  Kamryn is doing well!  We are on our way to bigger and better things.

A difficult day

Yesterday was a difficult day for Kamryn.  As you know she has been coming off some of her medications.  Two of those are Morphine and Adivan.  Saturday she took her last dose of Morphine.  Praise God!  Monday morning while taking her daily stats, her heart rate was down 20 beats per minute.  She runs in the 136-144 range.  The nurse and I talked about it, and decided I would monitor her and they would talk to the Dr.  (She was also weaned of another med, that one might be the culprete.)
Kamryn had been fussy most of the early morning.  This continued all day long... She refused to be put down and wouldn't sleep unless held.  The Holly Ridge lady came at 10:30am.  Kamryn took one look at her and would have NOTHING to do with her.  Karmyn has a copping mechanism she developed in the hospital.  She closes her eyes and shuts down.  This means your not there and are not going to bug her.  It's rather cute.  So instead of having any PT/OT Kamryn went to sleep.  I got PT/OT instructions and another appointment.  Kamryn gets 2pm meds.  I decided to give her some Tylenol with this dose.  She calmed a little but still had to be held or she would scream and fuss.

The nurse calls at 4:00 there is nothing in the medications that would indicate they increase the heart rate.  I am told to watch her and keep the Wednesday appointment.
 
Her fussiness continued and she acted like something hurt.  I blame this on the morphine.  Unfortunately, she had to go from 1ml to nothing in a day. At 8 she got another dose of Tylenol and put to bed about 9:00pm when she was finally content to be put down.  In the middle of the night she vomited twice. (a withdrawal symptom) This time without vomiting up the tube. She did sleep through the night and is sleeping now.  (don't tell her, she isn't being held.)

I am grateful to be able to hold her... I think about all those times she fussed in the hospital and I couldn't hold her.  So yesterday may have not been to difficult...nothing got done but who cares.

Thankful for the rain

Sunday morning!  I love my children!!!!  Mark was not having a good morning.  He hadn't eaten enough the night before and was grumpy.  I think he is growing, he is a grumpy grower. Of course everything that bothers him is manifested in his stomach.  After a quick trip to the bathroom where he thought he was going to throw up  he laid on the floor in the kitchen wrapped in a blanket with a piece of toast.  Kamryn is on the floor in the family room trying to pull out her NG tube.  I fish the tube back in and remind Mark eat your toast.  Fortunately, I have had a shower and am dressed.  Kamryn is persistent about that tube, Mark is not about the toast or getting dressed in the clothes I brought down for him.  All of this going on and I really wan't to go to church.  My adorable nephew is being dedicated.  Suddenly, there are screams and vomiting sounds coming  from Kamryn.  She vomited  up her tube.  Mark is not dressed, nor is his toast eaten.  I now have to decide, do I put the tube back in or take it out and not put one in until med time.  I don't have time to put in another tube.  I have time to make a bottle, take the tape of her face and get Mark dressed.  With 5 minutes to get to church,  Mark is dressed with teeth brushed, Kamryn is in her car seat, I have the diaper bag and the bottle.  Time to go to the car.  Oh it's raining.  Oh well at least no one at church will know my hair is still wet.  Oops, I think I forgot some makeup.




 

Mikaela dressed Kamryn and took pictures. 

Medication can't be found

Kamryn is on Magnesium (Magonate) for her heart.  It not only keeps her heart beating normal rhythms but it also replaces what her other medicines deplete.  It has to be compounded.(this means taken from the pill form and added to liquid so that it can be given to her by ng tube.)  Not all pharmacies compound.  But those that do can compound in about 24 to 48 hours.  This is why I started trying to get the script on Tuesday.  It got to the pharmacy in GH on Wednesday.  But the don't have it and it would take a week to get.  Why? There is a shortage of it I am told.  So I start calling around. First I try the hospitals... there patients need it right?  They don't have it, a compounding Pharmacy in Poulsbo doesn't have it, nor do the other places I have called.  I call the transplant coordinator at Children's.  He has me try a mail order company.  They don't have it and it will take a week.  Really?  The pharmacy at Children's has not heard of this shortage and they have it.  I may have to go over to Seattle.  But wait... We might be able to change it to an IV form safe for oral consumption.  The wonderful transplant team tries to find a pharmacy that can get that.  Nope, there is a shortage of that too.  After a few phone calls trying to track down the IV version they may have found the Magonate version.  Our local Alberstons seems to be able to order it and get it over night.  I am still holding my breath that this will happen.  I really don't want to go to Seattle today.

Early morning

Today started with Kamryn's tube out.  It happened around 5:45am.  If she didn't need her medicine at 6:00am I would've just left it out for a while and bottle fed her.  But no.  So I put the tube back in, and gave her medicine.  Which she promptly threw up, along with the tube.  It makes me nervous to give her meds again.  But I called the Dr and was told to give them again.  I put in another tube and gave her the medications.  She was able to keep those down.  All of this took place before the boys were up and getting ready for school.   Kristopher was going to mow the lawn, but the mower was broken.  So we borrowed Gramies mower.  Kamryn has been fussy all day long, so my house is a mess but my lawn is mowed.

5 months old today

Just nine months ago I found out I was pregnant.  Yes I was 4 months along when I discovered this.  That means I had 5 months to complete a 9 month project.   But of course it was 4.5 months because Kamryn was early.  Now, she is 5 months old.  The first few weeks with her were blissful,  having a new baby was exciting and tiring at the same time.  The next five weeks were spent in a hospital not knowing if Kamryn would live or die.  And then the call we had prepared to wait for as long as necessary came.  "We have accepted a heart for Kamryn."  In what seemed like a whirl wind family was gathered and  Kamryn was prepared for a heart transplant. A few hours later, after holding out breaths another call came. This one was,  "The heart is in and beating."   My formerly grey baby was now pink, with a scare down her chest, a tube still down her throat and a bright future ahead of her.
 
Today I sit on the floor with her beside me in her nap nanny.  She is chattering away and is  highly opinionated about something.  Did I think she would be able to sit beside me at home happy and content.  At times no (but those were my weak non believing dark moments).  Through prayer God heard my cries and gave me the peace to know He was in control. 

Happy 5 month birthday Kamryn.

Joy and tears

The tears began to flow Christmas eve night as Kamryn was turning blue and the reality that this was not just a cold set in.  Those tears continued as we were informed that she had an enlarged heart and would be having an echo in the morning.  We cried with Elizabeth when she brought us the bags we had packed for Christmas at grammies house.  Niether one of us slept that night with the unknown hanging over our heads.  I cried because no sounds came out of my baby that night.  The next morning we cried with the results of the echo and the knowledge she would be transfered by ambulance to Children's hospital in Seattle.  More tears were shead as Mike went home to the children and I went with Kamryn to Seattle.  I can remember asking Mike, "When will I stop crying."  The tears shead during her early hospitalization, diagnosis, and occational melt down were tears of fear and pain of the unknown.  Would Kamryn servive this, how long and what do we do if she doesn't were always in the back of our minds. Beautiful messages of strength and encouragement came from friends and family.  The hand of God kept us from lossing our minds.

Today the tears are of  JOY!  I can't make it through a church service, song or facebook message without crying. God has brought us through this, he is continuing to bless us.  Yes there is still the fear of the unknown, but God's grace is the reason she is here and the reason we are JOYFULL.

Our family at Easter.