Flu season

Just a quick note since flu season is about to start…

We are excited that we will soon be home and able to have visitors!
As you all know, Katelyn does not have much of an immune system anymore. We have to be extremely careful about any kind of germs. A simple cold for any of us could cause major complications with Kate. Something like the flu could even be deadly. We are asking that our family and friends who plan on visiting our home get the flu shot. It must be the shot and not the mist, as the mist is the live virus. If you are not able to get the flu shot, we ask you refrain from visits until flu season is over. We did not put Kate and our family through all of this just to allow something like the flu to take her from us.
Also, if you do become sick, we ask that you are symptom free for two weeks before visiting.
And with that being said, please don’t be offended when we ask you to use one of our jumbo sized bottles of hand sanitizer πŸ™‚

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Friday, September 30

Last week, we had a rough couple of days. Katelyn ended up being admitted to the hospital on Friday night, luckily it was nothing heart related! She had some diarrhea and the dr. was concerned she was going to get dehydrated or have other complications. She had a EKG and chest xray, got some IV fluids, and was good to go Saturday evening. The poor little baby had to get stuck 5 different times for the nurse to get the IV in though, that was by far the worst part.

Yesterday she had a clinic appointment. Her heart looked great on the echo and like at every appointment, her doctors were very pleased with her physical exam. Her medication levels are out of whack though, one test will show they are low, then a week later she gets retested and they are high, then a couple days later they are low, and so on. Its her anti-rejection meds, so we don’t want to mess around with that! Unfortunately her dr. won’t release us to go home until they are stable for a week. Boo. Our new anticipated going home date is next Saturday the 8th. She is having blood drawn on Monday and next Friday to check the levels. We are praying they are between 10 and 12 both days! If so, we are homeward bound on Saturday! Yesterday they gave us a heart monitor for her to wear for 24 hours. She wore it until today at 10am, she haaaaated it! She didn’t sleep well and couldn’t really get comfortable. Also they stopped her blood pressure medicine πŸ™‚ Its great to knock another one off the list!

On Monday we have an appointment with the genetics team, they ran tests on her when she was first admitted in June and we are finally getting the results. I’ll update with those after the appointment.

As always, we thank everyone for their continued prayers for Katelyn and our family! ❀

watching her Bubba play DS, they are a match made in heaven πŸ™‚

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loving her baby hospital gown

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tasty thumb

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the dreaded heart monitor

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time for a close up!

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Who would have thought that Normal would be so great??

We had another great check up today! The doctor said Kate’s heart looks great on the echo, she actually used the word “normal” which is a word we love to hear, one that we will never take for granted after going through this. Normal… not hyper- dynamic, or thick, or irritable, or any of the other words they have used to describe her new heart… words they told us not to be alarmed about but that sounded so dang scary. Just normal.

We saw one of her nurses who we haven’t seen in several weeks, and it was a great feeling to see her reaction to Katelyn. She kept “ooh-ing” and “ah-ing” at how cute (and healthy) she looked, and was so impressed with her chubby little cheeks and round Buddha belly. And let me tell you, Katelyn just eats up the attention, you so much as whisper the word pretty and her face just lights up with the sweetest smile and the biggest dimples.

She is weighing in at just under 12.5 lbs and almost 24 inches long. Her electrolytes are looking better, her magnesium level is just a tad low so we have to continue with the supplement, and her potassium is back on track.. it’s been high since her surgery.Β  We are adding a yucky multivitamin because shes slightly anemic… but other than that her other labs looked good.

The doctor confirmed that we are definitely still on track to leave October 3rd. We are counting down they days, literally. We have 18 to be exact πŸ™‚ Her next clinic appointment is Sept. 29th (she will have an echo, chest xray, blood work and see the doc) and she sees the genetics team on the 3rd. They did lots of genetic testing on her when we first arrived in Houston, and we are anxious to see the results.

And last but not least, we started a Facebook page for Kate. We know its easier for some people to read little updates here and there in on their FB page than it is to log on to the blog. I will still update here after her appointments with more detailed information, but the FB page will allow us to share more frequent, smaller updates on more of a day to day basis… all the little fun stuff πŸ™‚ Also, we are in the beginning stages of starting a foundation in Katelyn’s name to help other families going through the same thing, who are in need of certain resources and support. The FB page will allow us to post information about fundraising and other foundation needs. “Like” us at http://www.facebook.com/katelynsmarathon.

 

 

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What the future holds…

When writing this blog, I try, for the most part, to keep my emotions at bay… I try to stick with the facts so those of you that care about Katelyn and our family can know whats going on without being bombarded by all of the intense feelings that we experience. With that being said, I am warning you all, this is my emotional post…

We have no idea what the future holds for our sweet Katelyn. We do know, though, that we won’t take a single day with her for granted.

When her doctors were preparing us for her being listed for the transplant, they told us, “A transplant isn’t a cure, its trading one disease for another.”

There are many complications that come with being a heart transplant patient. First is rejection, which can come at any time. The doctors check for this regularly and have ways to treat it at the first sign.There are symptoms that we will be watching for at home too, always on guard.

Next, infection is a constant concern. She will never have an immune system; these first three months are the scariest when it comes to infection, but she will have to be so careful for the rest of her life. The slightest infection could be life threatening or result in lengthy hospital stays. She cannot have any live vaccines (for example the chicken pox vaccine) because she would contract the illness from the vaccine so its not even something we can fully prevent. Germs are the enemy! I joke with Andrew, and tell him we might as well buy stock in Lysol.

Then, there is transplant specific coronary artery disease, doctors aren’t sure exactly what causes it, but it happens. On average heart transplant patients need a new heart again after about 10 years… In fact I met a young man yesterday who was 22 years old and on his 3rd transplant. He has had 4 different hearts beating in his chest in a mere 22 years, its just insane. We hope and pray that as medicine evolves over the coming years, doctors will find a cure for this before Katelyn develops it.

Lastly there is actually a type of cancer that transplant patients can get… as if they haven’t been through enough. I can’t think of the name of it right now, the lights are out since the kids are sleeping, or I would get my handy dandy transplant manual and look it up, but suppresing their immune system makes them more vulnerable to cancer.

So you can see why we are so thankful for the continued prayers for our baby girl. We need them!

She is laying on the bed next to me, and as I hear her precious little snore, and see her pretty face partially lit up by the glow of my laptop, I am reminded of a story that someone shared with me just a few days ago. A story that literally made tears stream down my face. It’s called Welcome to Holland, and this is a copy/paste from the author’s website:

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

 

Andrew and I are ready to take Holland head on, heck we will even wear the wooden shoes! We feel so blessed that God gave us such a special child. A child who has touched the hearts of so many people in such a short time. We are excited to see what He has in store for Katelyn’s life, a life we know will be full of love, a life that we are honored to share.

 

 

 

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Friday, August 19th

I took Katelyn to her checkup yesterday.

It went really well. Her new heart is functioning great! They always draw blood and run lots of lab work at each visit and one number we always want to hear is her BNP. It stands for B-type Natriuretic Peptide and it tells the degree of heart failure a person is experiencing…

  • BNP levels below 100 pg/mL indicate no heart failure
  • BNP levels of 100-300 suggest heart failure is present
  • BNP levels above 300 pg/mL indicate mild heart failure
  • BNP levels above 600 pg/mL indicate moderate heart failure.
  • BNP levels above 900 pg/mL indicate severe heart failure

At Cooks in Ft. Worth when she was first admitted her BNP was 3,600. We were floored when we heard this number… and even after her transplant it was insanely high… into the 3,000s initially, then 1,400 (which the dr said is normal for it to be high immediately after transplant)… well, yesterday it was 89!!!!!

Her white blood cell count was low, so they stopped one of her transplant meds for the time being. Her anti-rejection meds lower her white blood cell count anyway; which is what makes her prone to infection to begin with, so her white count being too low is even scarier. She will have some more bloodwork Monday to make sure the count is higher, but not too high. With her being so immuno- supressed, we need all the white blood cells we can get!

I met another transplant family while we were at the hospital yesterday. The patient was a 6 yr old little boy who had his transplant atΒ  3 1/2 months. His mom was able to give me an idea about what life is going to be like once we are home. Its definitely going to take some getting used to, but it will be our new normal. Simple things most families take for granted like trips to the McDonald’s playground or Chuck E Cheese will be few and far between if ever… They will be replaced with family movie and games nights at home, and that is A-OK with us. We feel so blessed to have our family!

 

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Wednesday, Aug 10th

It has been a while since we updated the blog!

Katelyn is doing great, we are so pleased with her recovery so far. At her last appointment (on Monday) she weighed 9 lbs, 12 ounces. We can’t believe how much she has grown in the short time since her surgery, since her weight was basically at a stand-still for so long before.

Her clinic appointments are now once every two weeks (they were originally every Thursday.) At these appointments, she gets weighed and measured, she gets echocardiograms, which are the sonograms of her heart, the doctor examines her, we go over her medicines, etc… So far they have all gone really well. Her new heart is what they call Hyper-dynamic, which means it actually functions a little too well. It is used to having to work harder because it came from a larger baby, but the doctors are assuring us that it is something she will grow in to and they are not concerned. This is causing her high blood pressure, but she is on medication which is working well to treat it.

She also was getting bi-weekly infusions of an antibiotic, but we are not sure if those will continue, this past Monday at her last infusion, she had a bad reaction. She got really pale, vomited and was very lethargic. It came on very quickly and luckily subsided quickly once they stopped the meds. The doctors are going to speak as a team to decide the next step, as they really want her to get the antibiotic. They mentioned maybe trying smaller doses.

Germs are our enemy. She will always be immuno-supressed, but these first few months after surgery are the worst. We have to keep her away from most everybody, which is not an easy task in the Ronald McDonald House, we have had several kids run up and try to touch her, or open her stroller to peek in. Its definitely hard, since we are so proud of her and desperately want to show her off to everyone. We have been lucky enough to have a few visitors from home since we have been here, and they helped me feel at least somewhat connected to the outside world! (ha,ha)

We are counting down the days until we get to go home, being away from home is tough! We miss the house, we miss sleeping in our own beds, and we definitely miss the dogs, which I have to add we are so happy we get to keep them because certain pets are now off limits. Heck, I even miss cooking and cleaning, which I never though I’d say! πŸ˜‰

I’ve attached some recent pictures of Katelyn for everyone to see. Enjoy!

In her favorite place, the stroller.

See, I told you it was her favorite place!

Star Wars baby

Looking very serious (and chubby)

I gave her some banana pudding from dinner, this was the whipped cream topping, she LOVED it!

Trying to sit up

Her and Braden, with the same “Mom you are crazy” look on their faces

As you can see from her pictures, she is a happy, normal little baby girl. We feel so blessed to have her and we thank God every day that we get to wake up to her beautiful little face. We know that she is destined for great things! Thank you all so much for the continued thoughts and prayers for Katelyn and our family!

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Friday, July 22nd

Katelyn did indeed get discharged on Monday! We are so happy to have her home with us!! Well I use the term “home” loosely because we are still in Houston, but as long as we are all under one roof we won’t complain.

We took Katelyn to her first heart clinic appointment on Thursday. She is (and always has been) a loud breather and moves her whole body with every breath just about… so we had to have a chest xray to make sure her lungs were looking good; which they were. The doctor also started her on a magnesium supplement and she will most likely begin an iron supplement at her next clinic appointment on Thursday. Monday she goes in for a 6 hour infusion, she gets an IV dose of a medication called cytogam every 2 weeks. Cytogam is to prevent her from contracting CMV which is a common bacteria that most people have been exposed to and will have no symptoms, other than possible cold symptoms. Her donor heart tested CMV positive and she was CMV negative, so the infusion is a preventive measure.

She gets a total of eight medications spread out over 7 different dosing times, for a total of 18 doses. We draw up her meds the night before and have them labeled so we know when she gets each one. It looks very overwhelming on paper but its really not too bad, and we are very lucky she actually likes to take them all.

She is eating well and gaining weight. Shes up to about 8 1/2 pounds already, which doesn’t seem like much for a 3 month old, but its a huge accomplishment for her! We are so proud of our tough little girl!

 

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