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Tuesday, June 29, 2010

Heart Cath Biopsy

Isaac is out of the procedure and his doctor says he did really well...no complications. We will not know the results of his biopsy until tomorrow. I'll keep everyone posted. We are still waiting to see him in recovery. They tell us that it will be a 6 hour recovery period. Pray for our sanity! ;)

We got an update about an hour ago and they said they had already gotten an IV and an arterial line in and were just waiting to start the procedure.

Isaac was finally taken back at 12:45 and they will try to update every hour.

At this moment, we are sitting in the surgery holding area waiting for them to take him back. The nurses are waiting for his bloodwork to come back first. He has had diarrhea for a couple of weeks now because we believe he is teething. They want to see normal electrolytes before they take him back for the procedure. I'll update once something is known. God Bless!

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Thursday, June 24, 2010

Its Been Way Toooooo Long!

Whew, 6 months without an update is just too long! We’ve just been too busy enjoying our time as a family at home. Since the last procedure that was done to fix his bleeding issue, his cardiology team had us stay in the Houston area for three months to ensure he didn’t bleed again. He did bleed a few times but the amounts were small and didn’t make too much difference in his hemoglobin level, so he was left alone. While we were there, I also had to have emergency surgery to remove my gallbladder (thank goodness we weren’t in Midland for that!). We were finally released to come back home in Mid-March. Since then, we’ve just been trying to get things back to normal again…whatever that is, right!? His birthday was on February 26th and was spent in Houston, but when we got home, we had a huge party for him. The party was a combination birthday and Baptism party. We had an awesome time with family and he received many gifts.

I would like to say that we didn’t have to get hospitalized again, but I would be lying. When we went for his scheduled clinic back in April, we had to get his immunosuppressant refilled in Houston before we left. In case this turns into a lawsuit, I won’t name the certain pharmacy that is involved. Because the immunosuppressant level was lower than usual, the dosage was changed but we were released to go back to Midland. The only lab that can get his level checked in one day is Covenant hospital in Lubbock. Since his dose was changed, we were asked to go to Lubbock and get it checked in a couple of days. A few days later, we went and got it checked and the level was even lower than before. His dosage was changed again and we were back in Lubbock a couple of days later. He was checked yet again, but this time his level was undetectable. The cardiology team wanted us to get him directly to Houston to get him admitted. Because Isaac wasn’t showing any visible signs of sickness or rejection, we were allowed to drive rather than to get him airlifted. While on our long drive there, our transplant coordinator called and informed us that the pharmacy had messed up his medicine. She read the exact recipe and noticed that instead of mixing with 0.3 mg, they mixed it with 0.03 mg. He was basically getting none of the medicine at all! So, we drove for almost 10 hours straight and Eli wanted to stay in Midland. When we got to Houston (at about midnight), we were admitted directly into a room and blood work was done again. They also wanted an echochardiogram done immediately, so needless to say, we were up till the wee hours of the morning. A few hours of sleep later, we were told that his echo and other than his prograf level, everything was normal. All they wanted to do was keep him in the hospital until his level was regulated (which was only through the weekend). We were discharged that following Monday, but stayed around the area to get his levels rechecked to make sure they were going in the right direction..which they were. So hopefully this pharmacy will compensate us for that unnecessary trip. So, besides trying to get him to develop a little faster, everything is great. He still cannot sit up on his own, but we are constantly working with him every day. He is doing better!! We are also trying to get him to talk, but nothing yet…just a lot of yelling at us! He does great mimicking though…I wish I could capture pictures of those spontaneous moments, but they just happen so quickly.

We have got a scheduled trip to Houston coming up on the 29th to get a biopsy done on Isaac. Although, he has been under many times already, we’re still a little nervous, because it still has it’s risks, but I’ll be posting as we get new information and the day of the procedure. Stay tuned!

We are also kicking ourselves because we forgot to celebrate an important milestone for Isaac! June 6th marked the 1 year anniversary for his heart transplant! I just can’t believe it flew by our heads. Now, its time to think about what we are going to say in our letter to the donor family. To me, that’s not just something I can write in one day, let alone even a week or a month. We really have to think about what how we want to show our gratitude in words. That is hard!! But it will get done.

Other than that, there is really nothing else interesting going on. Only that I have decided to go back to school to get my associates in Medical Transcription. This will only be a stepping stone to what I really want to get into, but it is a good start. I hope to work my way up to a masters in Biotechnology, but we’ll have to see how that all works out. I never realized my calling until we went through this ordeal with Isaac. I've always been interested in the medical field but never wanted to be a doctor due to the attachment that I have towards people. I was always fascinated by diseases and how they were caused and such. I guess I never realized the extent of the medical field. Hopefully, I can get this degree in less than a year to be able to get a job quickly. What’s really nice about this career, is the option to be able to work from home (of course not promised). I would really like to take a moment to thank the Carl McCain Foundation. This wonderful foundation has tremendously helped with all of our medical bills and every trip taken for medical reasons. If it wasn’t for them, I really don’t know how we would be where we are right now. So, again….THANK YOU AND GOD BLESS YOU ALL! I’ve been able to stay at home to take care of Isaac, but now, time and money is getting short and I need to get a job. Thing is…I’ll probably have to get a night job, because I’ll have no one to babysit Isaac during the day. My mom is able to watch him, but she’s got her hands full with my other nieces, nephews, and cousins, so I don’t want to push another burden on her. I really wish there was a legitimate company that would let me work from home..like data entry and such. Anyone know of any??? Haha..its a long shot!!! So, to finally put an end to this message, I’ve made a small slideshow of some of the pictures we’ve taken since I last posted. I’ll promise to keep posting a little more often! God Bless You all!

Practicing sitting up!

Big brother is helping to teach Isaac how to eat.


Eli finished his first puzzle on his own!

Brothers Forever!

They call me the Fireman!

Yeah, that's my name!!

Pretty as a flower!

Family with Ronald McDonald.

Before our Blue Bell Creamery tour!


Acting like he knows how to drink from a bottle!

Birthday Boy!


Baptism Cake

Long Day!



Baptism Outfit

No more pictures please!

Trying out big boy car seats. I think he likes this one!

My first photo on Dad's new phone!

Eli is ready for school! Oh wait, looks like he's got a stowaway!!

Look at those lashes!

1st Birthday at RMH

First two teeth

Learning how to play Nintendo early!

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A Dedication to the Angel that gave me my new heart!

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