Duke Cardiology Checkup

What a day yesterday.  Claire, Amanda, and I headed to Durham for Claire's 1st annual cardiology checkup.  Let's just say it has not gotten easier with time.  Number 1, I was stressed out thinking what could have happened or not happened in a year.  Number 2, Claire is a million times stronger than she ever was.  

We went to the ICN first to visit Nurse Susannah.  This was one of the few highlights of the day!  

To say the least, they should have listened to me and sedated her for an echo.  We got to the echo room and the echo tech immediately was like, ok this will not work.  So he went out and got 2 other techs.  While he blew bubbles, turned Elmo on, and the other tech danced with 2 stuffed animals, the third tech tried to do the echo.  I had Claire between my legs on the bed with my legs wrapped around hers and my arms holding her arms as she twisted and screamed.  Torture for her.  They maybe got 2 pictures of her heart.  Done.  

We then headed upstairs for the appointment.  Claire was running through the waiting area yelling "boys!" at any child she saw.  Having a blast.  But then we tried to get her to stop running and that ruined her day.  I took her to the bathroom hoping she would calm down as we were being stared at by everyone.  Then the ultimate scary thing happened.  The automatic paper towel dispenser went off.  Claire literally started shaking and ran screaming towards the door!  I felt horrible!  

Then here came the attempted weight and height and blood pressure.  One out of three got done - weight.  The assistant decided against attempting the height and blood pressure.  I am sure the BP would have been sky high.

Now the EKG.  Yeah right was all I could say.  They tried sticking the stickers and wires on her as I held her arms and Amanda held Claire's legs.  No way was that happening.  So no EKG.  

They put is in an exam room and turned out the lights to hopefully calm Claire down.  To get her height, we had to lay Claire on the exam table paper and mark her head and feet with a pen so the nurse could use a tape measure to get the height.  

Claire finally cried herself to sleep in my arms.  So the cardiologist was able to really listen to her heart in which I was glad.  She was out like a light so he got to listen a long time.  

Basically, her heart is the same.  Still pulmonary valve leakage, still "turbulence" where the muscle and tissue is in front of her pulmonary artery, still a murmur.  The right side of her heart function looked good.  So she is good to go again until next year.  

To top off the day, we met Dr. Rachel at Firehouse Subs for lunch!  It was so nice to visit outside of the hospital.  So the highlights of the day were seeing Nurse Susannah, getting a good heart report, and seeing Dr. Rachel.  :)

On another note, Jax is off the ventilator, backing off pain meds, and doing really good!  He has no leukemia in his cells or blood as of yesterday!  And his momma is getting to hold him today for the first time in almost 2 weeks.  Jax will hopefully get to come home in the next week or 2!  Thank you for the continued prayers for this miracle child.

Love,
The Scott Family

Cabbage Patch

Look what I found in the cabbage patch!  It brought back memories of me having those Cabbage Patch dolls growing up.  I guess I now have my own, real life cabbage patch doll now!  She is homegrown!

Love,
The Scott Family

Miracles do happen

Praise the Lord for a good day for Jaxson today!  Amber texted me this morning that his ANC was up to 1400!!!!  And his white blood cells were up to 2.4!  This my friends is a miracle for a child who less than a week ago was really, really sick.  Sick enough that the doctors had "the talk" with his parents.  Thank you all for the prayers for Jax.  Please keep them coming as he still has a long road ahead of him.  It's wonderful to see the work of God when you least expect it.

On another note, Claire has a cardiology check up this week.  I have to admit I am nervous.  I know she looks good and is growing great.  But it's been a year since we have seen the cardiologist.  I will never take Claire's health for granted and never be surprised (well I probably would be) if we got some weird news at her appointments.  I don't ever want to let my guard down because as soon as I do, that's when something unexpected will happen.  So please pray that Claire's heart looks perfectly healthy and that she is good to go until another year!

Love,

The Scott Family

Only

 Only I would take our child to Tryon Palace gardens so she would have a closed in area to run free without me having to worry about her escaping me.

 

Only our daughter would think the mounds of canon balls were "grapes" as she hugged them.

Only our daughter would surprise me and actually let me put THREE hand prints on a coffee mug for DaDa for a surprise Father's Day present at Accidental Artist.  Only now it's no surprise anymore as we were blasted on the evening local news that night in front of the store (see below).

 
Only I would open my big mouth as we left Accidental Artist and saw the local news channel outside.  Only I would tell them how much Claire loves to watch the news, especially the weather (the girl below is one of the weather women) and ask if we could have our picture taken with them.  Only then would this lead to them asking us to be on the news that night talking about how our hometown is listed as #6 nationally for boating towns.  Only I would sound super redneck once again on the news while wearing a sweatshirt with holes and jeans that are 10 years old while Claire had paint all over her mouth.  Yep, only us.

Only Claire would be obsessed with feeding the ducks old hotdog buns.  Only Claire would garner crazy looks from other people as she ran and chased the ducks (like they thought she was torturing the ducks).

Only I would freak out because there were 2 dead fish on the shore that Claire kept almost stepping on (and actually some older kids were standing on top of one fish).  Only I would garner crazy looks from other parents when I whisked Claire away screaming after she ran into the water as I started thinking about all the nasty germs that are in this river water.

Only if these days would last forever that I get to spend special time with our only child.  If only.

Love,

The Scott Family

PS - Jax had a good day today!  His doctors say he has rounded a corner so thank you for all of your prayers!  What a miracle.  Please continue to pray!

Answers

Prayers are being answered for Jax.  Please continue to pray that his ANC continues to go up, up, up! 

Thanks!

Love,
The Scott Family

Prayers for Jaxson

Today was a tough day for Jaxson's family.  The doctors have prepared his family to start thinking ahead in case the miracles do not happen and his earthly body is not healed.  Please continue to have hope and pray for Jaxson and his family.  Miracles can happen.

Here are a few pictures I took a few months ago so you can look into the sweet blue eyes of this little boy that you are praying for.

His mom asks for prayers specifically that his ANC (absolute neutrophil count I think or white blood cells) will come up ASAP.

Love,

The Scott Family

Prayers for Jaxson - a miracle needed

Jaxson has had a rough week.  Since his surgery last Monday, he was feeling better!  But Saturday night he had a rough night and the doctors noticed that the parts of his intestines that were on the outside of his body for the colostomy bag were turning dark.  Not a good sign.  Sunday morning he went back into emergency surgery thinking they would just remove the part of the intestines that was dying.  When the doctors got inside Jax's abdomen, they found much more than they bargained for.

The fungal infection had spread.  There were black spots of dying tissue on Jaxson's small and large intestines, colon, stomach wall, and bladder.  There is nothing the doctors could do so they closed him back up without removing anything.  Jaxson is really sick.  His fever went to 103.9 last night and they were having to cool him down with ice packs and lowering the AC in his room.

Today I got to visit him and his family.  He is still sedated and on lots of medicines and still on the vent.  The doctors said today that they don't know of anyone who had ever beat this type of infection.  But they are trying everything they can.  The medicine Jax needs to beat the infection will only work with white blood cells (WBCs) which we know Jax has none or very little due to the chemo.  So they have given Jax some sort of bone marrow medicine to help generate WBCs in his own bone marrow.  This could be helpful for fighting the infection, but more than likely, the leukemia will return by doing this.

They have also called the Red Cross to find a donor of WBCs.  This person received medicine yesterday to boost their WBCs.  They will have their blood drawn either today or tomorrow, and the blood will be flown to the hospital Jax is at.  He will then receive this donation in hopes to boost his WBCs.  The issue with this is that this is very hard on the recipient.  It could cause him to go into anaphylactic (sp) shock.  It could make his temperatures go even higher.  This WBC transplant can also kill him.

Jax needs prayers for a miracle.  Please pray for him.  Whatever God's will is for him.  I will try to update when I hear anything.

Thanks for the prayers.

Love,
The Scott Family