HomeOur Story Start @ Beginning

Thursday, September 2, 2010

To Honor our Donor Family

My apologies again for not posting sooner. For an update on Isaac, he is doing very well now. About two weeks after we were released from Lubbock with no real diagnosis and an antibiotic prescription, he ran out of his regular pediatric drink. So, we had to go and buy some formula to bridge the time while we received his regular milk. We went and bought Isomil Go & Grow for ages 9 - 24 months. For the longest time since he started the diarrhea, I had asked to get his milk changed and his transplant team just didn't think that could be the problem. It was just worrying me because he was stooling 6 to sometimes 8 times a day. I was scared that he would get dehydrated. He was on this new formula for about 4 days and I noticed that the diarrhea was pretty much gone. I was extremely excited because it meant that I was right. Of course, I don't know what exactly in that milk caused his diarrhea but something did. So he was kept on the Isomil powder formula. Because we have to mix it to be 30 calories per ounce, we have been having to buy about 3 cans of formula each week. Whew...a little more expensive than we anticipated. Today, I started him on Pediasure. I'm asking for prayers that this milk works. He has never been on milk-based formula so we're all a little worried. If this milk takes, it will be so much easier than having to buy powder and mix it. We also think that his current formula is making him throw up a lot more. I think that because it is powder, you have to make sure that it settles before it is fed to him. It is more work just to feed him than I'm ready to add. Again, asking for prayers that this new milk works for him and doesn't cause gut problems.

On another note, I have been thinking and thinking about writing our year anniversary letter (a few months late) to our donor family. It really made me want to even more after our friend's little boy
Logan had major trouble with his heart failure and finally recieved his life-saving gift this past weekend. We were so relieved and sad at the same moment. Its hard to realize that someone's child had to lose their life to save another, yet they'll never really know how much it changes our lives and how thankful we are. I've been searching online for some inspiration on writing our letter and I found the most beautiful poem about organ donation. I think with the author's permission, I may have to add this to our letter. Isaac and Logan.....THIS IS FOR YOU!!!!

♥In Honor of My Donor Family♥

I received a gift, on a jet it flew
It came from someone I never knew.

It came with no card, ribbon or bows
But sent to me that’s all I know.

It didn’t arrive in a box or sack
And is a gift one would never send back.

The gift in size is rather small
Compared to its power to conquer all.

You’ll never hold this gift in your hand
It’s given to people throughout the land...

This beautiful gift has set me free
What a precious gift and given to me.

This gift was given out of selfless love
And delivered to me with help from above.

These gifts are so priceless, valuable and few
When you know of this gift, you will agree too.

With this gift I can hold my head high
To dream the impossible and reach for the sky.

This gift has taught me to scream and shout
Now let me tell you what this gift is about.

This gift will not be taken in strife
The gift I speak of is that of life.

The gift of life handed me a key
It opened doors and set me free.

Organs aren’t needed at your final destination
Leave them on Earth without hesitation.

Every human will someday be called to come home
Your organs may stay and continue to roam.

No need for organs in the heavens above
Leave them on Earth for others to live & love.

Now that all has been said and done
Please donate your organs and give life to one.

Let’s spread the news let’s scream and shout
Organ donation is what it’s all about
Karol Franks

God Bless You All!

Saturday, July 24, 2010

Endoscopy and Colonscopy

Isaac has undergone a colonoscopy and endoscopy and has been out for an hour. He did well through the procedure and is in his room resting at the moment. We are asking for major prayers right now. When the GI doctor was going through the colon, he found some masses and blister-like pouches. He showed us pictures and said that he's never seen blisters like that before. He took biopsies of the masses that were there and results should hopefully be back by Monday. They have no idea of what it could be but are starting him on an antiobiotic for certain GI viruses called Flagyl. If the diarrhea starts improving, then maybe it was a certain virus causing it. No answers yet, but we are hoping for Monday. There are certain other things it could be but I'm not going to name them and scare people on here. We are already scared as it is and probably making too much of it, but just pray for the best. Sorry the update is so short, but not much more information than this was given to us. God Bless you all!

Monday, July 19, 2010

Admitted to Children's Covenant in Lubbock

Besides Isaac's ongoing diarrhea (thinking from teething), we thought he was doing pretty well. But of course yesterday, he gave us a scare. When Dad changed his diaper, he noticed a red glob mixed in with his poop. He asked me to look and wanted to get my opinion. I'm no doctor and I said "well, maybe he's just got some irritation from having the runs for so long." Well, it still kinda scared me because the glob was about two inches long and looked like a glob of jelly. I looked it up online and it of course scared me. It came up with a lot of reasons but the worst was called intussusception, and it absolutely scared us of course. Ernest called the On-call cardiologist and told him the situation. He asked us to go to the nearest hospital and get it checked out. Well, with the experiences we've had with our local hospital, we didn't want to take the chance and take him there. We told him that the closest children's hospital was located 2 hours away and that we would rather take him there. So thinking that maybe they would just test and discharge him on the same day, we left as early as we could. We ended up leaving by noon and got to the children's emergency at 2pm. Bloodwork, xrays, and cultures were done very quickly, thankfully because I guess Isaac was in the right mood to cooperate. All the primary results came back negative but they wanted to go ahead and admit him for more tests and monitoring. Let me say, that even though we hated to stay overnight, the children's floors are so cute and pretty. The only complaint that we had was that there is only room for one person to sleep on the sleeper couch. We tried to make ourselves fit on the couch for a nap, but it just did NOT work out. Ernest went to go buy an air up mattress. So besides the nurses coming in through the night, we slept well. Doctors came in to see him this morning and talked to us. They told us that although he is stooling blood, they didn't think it was intussusception but they wanted to do an ultrasound to make sure. The doctors here think that maybe the immunosuppressants that he is on are the culprits. Ultrasound was done and radiologist didn't see anything to worry about. We were waiting for doctors to come by this afternoon, but I guess we'll have to wait again till morning. I'm praying that maybe they'll just end up making changes to his medicine or giving him something to coat his intestines and get us going home by tomorrow evening. We really need to get home because my Mom is at home alone with Eli and my niece. My niece is 12 years old and her and Eli are a big help with her. My aunt goes to check on her periodically and stayed with her overnight but I hate to burden them. Please send your good thoughts our way. I will keep everyone posted.

Setting aside all of this weekend's drama, we had a great time last weekend. Our friend, Melody, her two nieces, nephew and mom visited us for a few days. We did all there was to do in Midland. We went shopping, out to eat, went to the drivin and best of all went swimming. This was Isaac's first time in the water and although the initial cold shock scared him he ended up loving it. Here are some recent pictures.

Tuesday, July 6, 2010

Still in Houston

So, we were a day from going back to Midland and then something awful happened....after we ate dinner Friday night at Fuddrucker's, my mom came out of the restaurant, tried to step off of the sidewalk, slipped in the mud and broke her leg. Fuddrucker's immediately called the ambulance and they were there within minutes. I guess because Mom has no medical insurance, she was taken to Ben Taub trauma center. Although I can't complain too much about the doctors, the hospital is horrible. She is in a room with 3 other people and the lady next door is being watched because they are suspecting that drugs are in play. Surgery was done two days ago and now all they are keeping her in the hospital for is pain management and physical therapy. She hasn't had to to take much for pain and physical therapy is trying to see if she'll do well with a walker...which she's been doing pretty good. Now, we are just waiting for them to release her so we can get back home and get her into some kind of program for her medical care. She has also been diagnosed with Type 2 Diabetes. I kind of always suspected it, but she has never been one to go to the doctor and get it checked. I guess we're all just a little glad this happened when it did, because it could've only gotten worse as time went on. So now, we have to worry about her health and make sure that she IS taking care of herself. She has to be out of work for at least 3 months while her leg heals. Once I get back home, I've got to find a part time job to be able to pay for these extra medical bills and her monthly financials. So, I would never really do this...but I am desperate. Does anyone know of anywhere (besides fastfood) that is hiring for evening help? Any thoughts or suggestions...please email me at elisaac2629@gmail.com. I am finally able to start online classes tomorrow and am so excited. It shouldn't take long to get this Medical Transcription degree (hopefully in a year) to get a job in the medical field. That is in the works right now too. I'm sure we'll be able to handle all these extra situations...its just that the future of things seems a little foggy at the moment. The Good Lord obviously knows we can handle some challenges and I'm sure we can this time too. Please pray for us...but especially for my Mom's strength. God Bless you all!

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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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