Wednesday, May 15, 2013

Cardiology Followup

K's Cardiology follow up appointment was yesterday. Dr. S said everything was functioning beautifully!! I was so glad to hear this because K has had a fever since Monday and of course I was worried that maybe her body didn't like the new valve. We go back to Cardiology in two months. After the Cardiology appointment we went to see our wonderful Pediatrician Dr. R who looked her over. By this time K's Motrin was wearing off which meant her fever was back along with headache and fussiness. I was actually quite glad that Dr. R got to see her feeling bad because usually I take her in for a sick visit and she's seems perfectly fine making me out to be a crazy mom! Ha Ha Diagnosis was a ear infection and possible virus that's going around but that's yet to be determined.


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Saturday, May 11, 2013

Coming Home!! - Saturday 5/11/13







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Friday, May 10, 2013

Surgery Update - Friday 5/10/13

Kerrington was up all night just hanging out watching Little Bear over and over again. At some point in time during the night her oxygen dropped staying in the 80's and sometimes dropping in the 70's so they put her nasal cannula back on . Thankfully around 4:00 a.m they were able to take her back off oxygen. Once they stopped 1 dose of Lasix it seems that her heart rate went back down to what is somewhat normal for her.

Our goal was to get her up and that's what we did!! We started with a trip to get a ECHO followed by a walk around the floor. We washed her hair in this weird shower cap thingy and got new bedding. We walked to the playroom and played for awhile. She still didn't eat hardly anything but we are moving in the right direction. Stats stayed good all day.

We are planning to be discharged tomorrow....yep that's our plan so we shall see. She worked to hard today for them not to let us go home tomorrow.

Here are some pics I took over the last 2 days. The first is when I was trying to get her to play and she was not wanting to. ;). The last is from earlier today.







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Thursday, May 9, 2013

Surgery Update - Thursday 5/9/13

I will try and update from yesterday's events first then let you know what their plan is today.  Yesterday's echo and X-ray looked ok.  They gave her just 1 pint of blood which made a huge difference in her overall appearance.  This brought her hemoglobin from 7.4 to 13.1.  We didn't sleep much last night because they have had a hard time getting her pain under control.  She was tachacardic yesterday and started looking better late last night.  Fever is under control with Tylenol.

I participated in rounds this morning.  The plan is to move her to IV morphine to control pain, maybe then she will start wanting to move around some.  Keeping her on IV Lasix.  She has pretty good out put so they reduced her IV fluids but will remain on fluids until she starts eating again.  Her oxygen has been in the low 90's today and heart rate a little higher than what it was late last night...hanging around 128 to 135.  She is now complaining about pain in her arm/shoulder but we are thinking could be where they broke her sternum.  So we are hanging out letting her rest while pain gets controlled then we will start to sit her up this afternoon.

For those of you who don't know I have been battling illness since surgery day.  I had some saltines, sprite, and peppermint today.  I am slowly starting to feel better.  Thanks again for all the thoughts and prayers.  Please pray for my family today and tomorrow as they will lay to rest my uncle who died the day of Kerrington's surgey.  I will post another update tonight. Bookmark and Share

Wednesday, May 8, 2013

Surgery Update - Wednesday 5/8/13

I just wanted to update everyone and ask for prayer. Kerrington was moved to the floor about an hour ago. After being assessed by the staff they agreed that Kerrington did not look well. She has been anemic since yesterday and her hemoglobin has been really low. She is very pale and is hard to keep awake. They are doing blood work again. Since removing the foley she has had no output so they will start her back on IV fluids. They have decided that she needs at least 1 pint of blood. They have done an echo and chest X-ray as well. Depending on what all that shows will depend on if we go back to ICU. I will update again soon. Bookmark and Share

Surgery Update

Kerrington continues to do very well!! I had to leave her last night to go sleep because I started getting sick yesterday. Sam stayed with her all night. Sometime during the night they were able to remove the oxygen cannula. Their plans today are to remove the chest tube, some lines, and get her to the floor. She still isn't herself but I guess who would be. She just looks so sad.

Please pray that I start feeling better so I can take care of her. I am having to wear a mask and keep my distance.

I want to thank everyone for all the love and support that you have given our family. I want to also thank those that made the trip to be with us yesterday and the days to come.

Hoping to post more pics today! Bookmark and Share

Tuesday, May 7, 2013

Surgery Update

Look who's extabated!!! :) They are working to get all her levels under control, pain controlled and she has had some normal rhythm issues.



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Surgery Update

Surgery is complete!! Surgeon just came to talk to us. He said he was able to put a larger size conduit in, she needed no blood transfusion, and no meds!!! Those are all blessings upon blessings! Praise God!! Now just waiting to see my baby girl. Please continue to pray as the next 24 - 36 hours are still critical!! Bookmark and Share

Surgery Update

Conduit is in and they are warming her back up. They can then attempt to take her off by pass. Still a couple of hours out. Bookmark and Share

Surgery Update

They are now putting in the conduit. Next update between 12:30 - 1:00. Bookmark and Share

Surgery Update

They called about 15 minutes ago and said they were getting ready to make the incision. She has done well so far. Next update in about 1 1/2 hours. Bookmark and Share

Surgery Update

Just wanted to let everyone know that they just took her back. It was hard but it is done. Now we wait!! Bookmark and Share

Monday, May 6, 2013

Preop Visit

Before I begin this post I have to tell you that I have worked to upload the aquarium pics literally ALL DAY long!!  It has proven to be difficult to do from an iPad.  So needless to say...what you see is what you get.  :)

Moving on to today's events......

Today's pre op went fairly well. The start and end were the worst. Started with a nasal swab and ended with labs.  I can say that so far I am very impressed with Nationwide Children's Hospital.  One thing I did learn today that I didn't expect to learn during a pre op visit is that Kerrington has Bronchomalacia which is defined as a congenital or acquired condition of under developed or degeneration of cartilage in the bronchi.  Still looking for a Kindergarten definition but I do know that this is the reason for all the croup and respiratory issues.

Good news is that her viral respiratory test must have came back negative because we haven't heard from the hospital and they said we would hear by 5:00 if it was positive.  This means we are a GO for surgery.  We have to be there at 6:00 a.m. with surgery beginning at 7:30 a.m.

Here are a few cute pics from today....Sam wouldn't let me take anymore.











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Under Water FUN!!

Yesterday was a blast!! Both girls LOVED the Aquarium. Some of their faves were the stingrays, penguins, and of course the sharks....mine were the eels, sea horses, and jelly fish. Before I share the pics from yesterday I want to ask that you pray for Kerrington today. In a few hours we will be heading to the hospital for pre op testing (5 hours worth). This will consist of labs, echo, x-ray just to name a few. Today's testing will not make tomorrow any easier.

As I sit beside her, watching her sleep, my heart breaks knowing that she has experienced more physical pain than I have in my life time. I have trust in The Lord that everything Kerrington will go through in her lifetime, because of her CHD and Syndrome, will continue to work to the glory of God but it doesn't make it any easier to watch. We know our child was given a "special heart" for a reason and we will continue to give all the honor and glory to him......that my friends is FAITH! Being able to give honor and glory to God when life throws you a curve ball. Knowing that no matter what happens The Lord has a plan much bigger than our plan. I don't always have the strongest faith especially when I am in my "pity party mode" but my faith is where I always come back to.

Somebody's watching you!!
Check out this HUGE shark!!
Nemo....

Crazy penguins!!
Only Daddy was crazy enough to tough the sharks




Trying to touch the shark


 

 
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Saturday, May 4, 2013

To do list: Pack!!!!!!!!!!!!

 

It has been a VERY busy week but I have still managed to avoid packing.  I've been asked by many how I am doing and my response can me summed up in a few words.....Busy and Butterflies.  Staying over the top busy is my way of coping but those butterflies still some how make themselves present. Sam is dealing a lot like me but the difference is he just doesn't want to talk about it.  We all know that talking about something makes it that much more of a reality. We all have been showered with love especially Kerrington which we so appreciate.  I still don't think she really understands why she will be visiting the hospital in the coming days.  I promise to be her biggest cheerleader.

Miley is feeling the effects of this upcoming trip so I treatrf her to a trip to the movies today. Our family will spend some time in prayer tonight as some of us will be heading out in the morning.  We will be treating Kerrington to a trip to the Newport Aquarium tomorrow.  I'm so excited!!!  I will be sure to post pics and share her reaction which I anticipate to be "Me not like those".  Monday will be preop testing and Tuesday will be her surgery.  

We have decided that this blog is where we will post updates and pictures during this part of our journey.  We would love for you to share our blog and we appreciate any and all encouraging comments left here. We will also let you know any specific prayer requests that our family might have.   

I want to share with you the scripture that I have and will continue to lean on during this time in our lives (Philippians 4: 6-7).  Thank you so much for your love and prayers.




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Wednesday, April 17, 2013

Empathy

I blogged a couple of weeks ago about a multitude of feelings that I was having. I ended up deleting the post because from the moment I published it I was worried about how it would be received. To be honest all those feelings had came from one particular incident. Those feelings have now subsided for the time being but I know they can resurface at any time. See this is all part of the journey......the question is whether your strong enough to make it through or shall I say whether you have enough faith to get you through.

I do believe that you have to live it to understand. It's hard not to resent those "unaffected" who fail to pray for us or ask us how we are doing in a time of need...but see we forget that we were those "unaffected" people once too. I was convicted and brought to my knees in a sobbing mess one day after my friend, who has become very dear to me, said "Christy they just don't know! We are in Holland. They're in Italy.....remember"? How could I have already forgotten, it hadn't been that long that I posted it on my blog for others to read. If you didn't read my previous blog "But I'm suppose to be in Italy" you need to read it before going any further. I have had the privilege of meeting some pretty amazing families because I am in Holland. And as my friend said "maybe someday we will have the luxury of visiting Italy, but we will have a great appreciation for it because we got the privilege of seeing Holland first".

I think whether affected or unaffected by CHD we all can relate to the below.  We all have things that we deal with in our lives and it is important to know that we can ALL make a difference.  We just need to slow down and take in the moments of life.  You might make a difference in someone's life just with a simple hug!!


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Thursday, March 28, 2013

But I'm suppose to be in Italy


My friend shared this with me and I felt that it was just too good not to share with others!! Enjoy!!


                      WELCOME TO HOLLAND

                                  by                            

                    Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Wednesday, March 27, 2013

Blessings in Disguise!!

This past Friday, Kerrington and I had a special day of running errands which included going to McDonalds as well as the candy store in the mall. I had been contemplating, since our visit to Columbus, on how to best talk to her about her upcoming surgery. I felt like it was necessary to try to explain as she is to the age where she understands but doesn't. I decided, while sitting in McDonalds, that I would make the attempt. So I began to explain how she was born with a special heart and that there would be times that the doctors would need to work on her special heart in order to keep her from getting really sick. She immediately said "I not like doctors, they are mean and I not like hospitals". I knew that was coming because that is where she is now in life. All the hospital and doctor visits up until now haven't been pleasant for her. Even though I expected her response I couldn't go on because I knew that I would end up a crying mess sitting in McDonalds of all places!! All I could think of for the remainder of the day is how I shouldn't have to explain this to her and that she shouldn't have to endure the things that she has to endure.

I had some "girl time" yesterday with a new friend which is proving to be another blessing in life. She was telling me a story which I won't get into, I will just tell you the moral of the story which was that it's ok to say "it just sucks"!! So I am saying it now for this situation "it just sucks" that I have to have conversations such as the one attempted with Kerrington, that we have to hand this 4 year old blessing over to someone we barely know to again work on the most precious part of the body, and that most of her memories of doctors and hospitals will be bad ones. Yes it just sucks!!!!

My friend also said something to me that was such a blessing to me!! I was explaining how this surgery will be harder than the first because Kerrington understands enough to be like "why are you letting them do this to me" but not quite understand that WE ARE protecting her. My friend said that The Lord must feel like that with us, his precious children. Letting us experience life, as hard or painful as it might be, and while we don't understand it is what's best for us. The heartache he must feel.........because my heart hurts so bad at times that its almost unbearable.

Thank you Lord for loving me that much and for yesterday's blessings in disguise!!




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Wednesday, March 20, 2013

Upcoming Surgery



Our visit to Nationwide Children's Hospital in Columbus was a good one.  Sam and I met with Dr. Galantowicz, the surgeon, as well as toured the Heart Center.  It is a very beautiful hospital with great staff.  Kerrington's surgery is scheduled for May 7th so until then our time will be more precious, the kisses alot sweeter, and the hugs alot tighter.  Bookmark and Share

Friday, March 15, 2013

Words for our beautiful daughter



               

 
             this is my wish for you
comfort on difficult days,
                       rainbows to follow the clouds,
smiles when sadness intrudes,
                     faith so that you can believe,
sunsets to warm your heart,
              laughter to kiss your lips,
courage to know yourself,
        hugs when spirits sag,
patience to accept the truth,
               beauty for your eyes to see,
confidence for when you doubt,
                         friendships to brighten your being
and 
           love
             to complete your life. 

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Friday, March 1, 2013

Baby Steps

Sam and I decided we would do a consultation first to meet the surgeon, to find out his plan for Kerrington and tour the hospital before scheduling her next surgery.....and buy time before actually having to schedule a date and it becoming more of a reality.  We are pretty certain that Nationwide is where  her next surgery should be but better to see for ourselves if we are able.  So I called Nationwide Children's Hospital this morning and scheduled the consultation for March 14th at 1:00. 

I took some time to sign in to our Carepage which is where I logged all of our updates from Kerrington's first surgery.  This was the first time I had logged on since 2009.  Once I logged on the first thing I saw were the verses that I relied on during that time.

Be still, and know that I am God. (Psalm 46:10)
Trust in the Lord with all your heart and lean not on your own understanding. (Proverbs 3:5)

Here is a post that I had written prior to her first surgery.  One of the strongest feelings I experienced in the midst of Kerrington's first surgery was the PEACE!! 

Today has been a very tough day knowing that Kerrington's surgery is getting closer and closer. My faith has been strong thanks to all the prayers and I still praise him in this storm. How hard it's going to be to hand our child over to the Lord and hope he gives her back. We don't know the will of God so I am just making the most out of every moment of time I have with Kerrington.

It was interesting to read through all the posts from her Carepage.  Looking back now I appeared to be a better advocate for her than I realized.  We have a tendency to forget, whether purposely or not, some of the difficulties during this time. 

So these are all Baby Steps..... we are working through it..... one day at a time!!



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Wednesday, February 27, 2013

Our CHD Journey - Updated

 
Our precious Kerrington at 4 years old
 
 
We have known since around December 2012 that Kerrington would be having her second surgery in 2013 but it wasn't until I saw the call come through yesterday from Nationwide Children's Hospital in Columbus that it sunk in.  Thankfully we were at a doctor's appointment of Kerrington's and I couldn't answer so I was only left with my heart in my stomach with no desire to call them back.  My feelings now, the day after they left the message on my voice mail, is still the same.  I am full of gut wrenching sickness and pain that we have to do this again.  I feel like my heart can't do this again.  I feel like this time will be so much harder on us than before because of her age and we are suppose to protect her. 
 
With my involvement in Kerrington's Heart I now understand and have seen more of the risks even in those "cut and dry" cases if there are any.  I also now know the meaning of strength.  There is no doubt that we can do this but I am just not ready yet.  Don't ever doubt my faith because my faith runs deep.  This is just one of the many "normal" feelings that goes along with the journey of Congenital Heart Disease.  There will be anger, resentment, fear, sadness, and the list goes on. I don't know of any parent that would gladly hand their child over to people that they hardly know to work on the most precious part of the child's body....their heart. So until Sam and I are ready we will put off the call to Nationwide.  For those that might be concerned, Kerrington is in no danger by us being a little selfish and waiting until we are ready.  Those that have not been on this journey with CHD I can not express in words how difficult of a journey it is emotionally and physically. 
 
Prayers are always welcomed for my family but I also ask that you remember all those families that are currently by their children's bedside fighting for another day.  Much love and many many blessings!!   
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