Saturday, June 28, 2008
I haven't been able to get a hold of Alison this past week so I have no idea still what the plan for Noah will be. He's still on all his meds. I think he's suppose to come off the Imuran but since no one has officially told me "Stop the Imuran" I just keep giving it to him. I also don't know what the plan is for his "stiff" heart. Hopefully I can get a hold of her before we go on vacation next week. I really would love to reduce his immune suppression before we venture out into the world. It also might help him get over this HORRIBLE cold he just can't seem to shake. The Dr told me it was allergies but our sweet dear friend Brennon is sick now after he came over with the same symptoms so it has to be a sickness and not allergies after all. If I can reduce Noah's immune suppression he just might be able to finally kick this thing in the bum.
Anyways... other than being sick, Noah is doing good. I took his to get his hair cut the other day. Unfortunately it was right at nap time and he didn't make it through the entire cut. So I paid for half a hair cut and it looks horrible. I'm going to have to fix it before we vacation. owell.
With Much Love, Crystal at 10:10 PM
Sunday, June 22, 2008
Noah is sick again. He sounds so horrible. He can barely breath. Even though I've given him his inhalers and Tylenol and have a humidifier round the clock... he sounds like he has croup. Poor kid. After all he has been through.
It's been kind of going on for months. It sort of swells. Gets really bad then slightly better then really bad.... Last Ped appointment we decided if it didn't get better we would try an antibiotic.
I actually think he might have strep this time. But we'll see. He has a nurses appointment tomorrow morning to get his immunizations but I think when I take him I will post pone them until he feels better and then ask for a strep test.
With Much Love, Crystal at 11:02 PM
Friday, June 20, 2008
We are home and all is well!
What a week. I'll be posting a FULL update of our trip to Denver over at Memoirs of a Mommy very soon. But here is the Noah update:
We took Noah to The Children's Hospital bright and early Monday morning. While at the lab waiting to get his Cyclo level checked, we ran into Julia and her mom. She is a little girl who got her heart transplant last month and her Mom recently joined a Support Group called Heart Beats that I am a member of. So that was neat.
Then we went to get his Echo and EKG. The Echo didn't go so well. Noah was so tired and grouchy since he hadn't eaten and he just wasn't having it. Then we got to see a friendly and familiar face, Alice our EKG Nurse. She is as sweet as ever.
The actual Cath was delayed until about 1:30 due to the previous Cath taking longer than scheduled. But since Noah refused to drink anything, they decided to give him an IV early so they could get some fluids in him. But, since he is a professional kicker (I have the bruises to prove it) they decided some Cloral Hydrate would be in order so he would sleep through the IV. This worked out great and he ended up sleeping the entire wait until his Cath.
He finally was taken in and I got to follow him over to the Cath Lab. Saying good bye to him was hard. He was completely asleep which made it a LOT easier. I gave him several kisses and off he went.
Shane and Lilly had come with me to the Hospital so I wouldn't have to wait alone, but during the extended waiting time, Lilly ended up pooping through 8 pull-ups and that was all we had brought with us to the Hospital. So Shane had to take her back to the RMH and I ended up being alone anyways. But it turned out OK. I had company... I'll explain in a minute. But I felt so bad for Lilly. I think she was just so nervous. She knew Noah was "sick" and I could tell she was worried. But Shane said she got back to the RMH and went right to the play room and had a wonderful time.
After Noah went in and I went down to the cafeteria to eat. While there, I met up with Julie, Lacey and Jacob. Julie is Alan's Grandma. Alan is one of the most precious little boys I have ever met. Julie found Noah's blog while surfing for info on Heart Transplants and contacted me. It was SO nice to sit with them and get to know them. Not only are they wonderful and friendly and funny people, but it helped me not sit and stew and worry about Noah.
After lunch we got to go meet Alan (he's waiting for his heart transplant so PLEASE remember him in your prayers). And let me tell you, he is even cuter in person. He slept most of the time I was there but that didn't keep his special spirit from touching me. It actually reminded me quite a bit of what it was like to visit Noah while he was waiting for his Heart. I have NO doubt that this precious child will be getting his new heart. I just hope he doesn't have to wait very long.
After Noah's cath was done Dr. Pietra came and talked with Shane and I. (He finally came back ;) ) This is what he said:
Everything looked great with one exception. Except its not really an exception, more like an asterisk. Noah's pressure's were good, his Aortic Arch isn't smooth, but there is NOT a Coarct. There doesn't seem to be a thickening of any of the veins or arteries but you can't really check that for sure until he is older. But the asterisk part is his shortening fraction. It's the stiffness of his heart. When his heart opens back up after a beat it doesn't open up big enough. Now we have known from the beginning that his new heart was stiff (I have NO idea what causes this. I have wondered if it had to do with the time the heart was on ice as it was almost 6 hours but I was told it wasn't). He has been on the Verapamil since the beginning and on the same does. We figured it would help and he would slowly out grow the the dose. Problem is, it hasn't helped or at least enough. What should be around a 4 is actually a 12. Not a good number. BUT, at least it's not a 20. THAT would be bad. So, we needed to wait to see if there was any rejection in the biopsies as that could cause this. Then Dr. Pietra could decide what we needed to do. Early the next morning, Alison (who I got to see since she was back from Maternity!!!) called me first thing and didn't make me wait till noon. And told me what I already knew but LOVED to hear...
This means Noah isn't rejecting his heart!! He gets to reduce his clinic visits and lower his immuno-suppressant. Actually gets to come off one of the meds and lower the dose of the other. GREAT NEWS!!
So back to the shortening fraction. Since we now know it's NOT rejection, I am waiting to hear from Dr. Pietra to see what he wants to do and how we should treat it. But like he told me in the recovery room... Don't be worried. Everything looked great with the exception of that weird asterisk and lets face it, its Noah. It wouldn't be Noah if there wasn't an asterisk involved. :)
Another great thing, we decided to have the Lab send me all the supplies I need to take his blood myself and FedEx it to Denver so we can check his level using the method we are used to so we don't over medicate him. This is great for two reasons: One, we can get the right level so his Cyclo level can be managed correctly and Two, because now I don't have to go up to the hospital at the Butt Crack of dawn to get his levels drawn anymore. I can do it from home!!!!
The next day Noah was really puffy and weak. He was also tethered to a Holter Monitor (a portable EKG) for 24 hours. But he quickly got better to my relief and before I knew it he was crawling around and getting into things like usual.
So, we got to see Alison (We LOVE you Alison!!), Carrie, Dr. Pietra, and some of our favorite Nurses. We got to meet Alan and his wonderful family. We got to meet Julia and her Mom. We had a wonderful outcome with Noah's cath. Noah did well and recovered beautifully. And we even fit in a few family fun things to boot. All in all, I would say it was a great and yet very tiring trip.
One last thing... this morning Kendra from the Denver Ronald McDonald house was at the Aurora house and I was able to give her the Thank you note and donation in Noah's honor. So a HUGE thank you to those of you who gave (Your names were included in the Thank you note):
Mom and Dad, Julie, Jeannie, and Jen.
With Much Love, Crystal at 9:08 PM
Sunday, June 15, 2008
The first thing I said when we got off the plane?
"It smells like Denver!!"
Even though I didn't live here for very long, Heavenly Father helped it to become my home. So to come back and see familiar places has been nice. (Seeing them with both kids and my hubby in the car and knowing we get to all go home TOGETHER doesn't hurt either!)
Bright and early tomorrow Noah goes in for his Heart Cath so I don't have anything to report yet. But wanted those of you who are wondering to know, that we are here safe, we got checked into the new beautiful Aurora RMH (it's closer to the new hospital) and we are ready to go.
I will update tomorrow evening when I can get online, or you can follow my Twitter Updates for quicker updates on how everything turns out.
Thank you for your prayers and well wishes. It means a lot.
With Much Love, Crystal at 11:01 PM
Wednesday, June 11, 2008
***A VERY IMPORTANT UPDATE***
I just found out that this link shows the ranking for heart and heart surgeries but this does NOT include TRANSPLANTS and transplant related care. So this is great info for CHDs but for those like Noah (Beckham!!) you don't want to go off of these stats for your care. Very good to know.
For all of our Heart and Heart Transplant friends, I thought you would find this link very interesting.
The Best Children Hospitals 2008: Heart and Heart Surgeries
With Much Love, Crystal at 9:18 PM
My Sweet Little Man,
Oh, how you are a miracle before my eyes.
Since the moment you came into my world you have taught me more about Love than I ever dreamed possible. I have learned about sacrifice, and gratitude, and faith, and hope. How is it possible for one little man to teach his mommy so much? Is it because you have the heart of an Angel? Because you do? Did you know that? Did you know that when you were born, your little heart was so sick. But it wasn't your time to go back to Heavenly Father. So a loving family gave you a new heart when their baby went home so you could stay here with us.
It's important that you know this. So you can live a life worthy of this wonderful gift. I'm not worried that you will. Because you are the sweetest little man I have ever met. And if there was anyone worthy of an Angel Heart it is you, my son.
You bring me such joy.
Never forget that I love you more than words could possibly say. Never forget how many people loved you before they even knew you. Never forget how many prayers were sent to Heaven just for you. And most of all, Never Ever forget that Heavenly Father loves you and has blessed you and will continue to bless you and He will always be there for you.
You are a chosen spirit. Your life and your tender personality will touch the lives of many. I am excited to watch you grow up into the honorable man I know you will become.
Happy Birthday my miracle baby. Today is a wonderful day. This is the day you were born.
I love you!
Look at you move? You are my miracle bundle of joy!!
With Much Love, Crystal at 12:00 AM
Sunday, June 8, 2008
As you know, next Monday (the 16th) we will be in Denver for Noah's first year Heart Catheter.
As you also probably know, my personal experience with sending him into the Cath lab has not been one of great pleasure or comfort.
So I am reaching out to all of you. Regardless of faith, regardless of religion I ask that you please keep Noah in your prayers this week. Ask the Lord to bless Noah that all will go well. That he will be sustain and heal quickly. That there won't be any complications and that He will guide the Dr's hands that the operation will go smoothly.
And for those of you who are interested, we will be having a special day of Fasting and Prayer this Wednesday for those who would like to participate.
If you are not religious, even your loving thoughts and well wishes are greatly appreciated.
Thank you so much for your continued support and friendship. I know it is because of the many prayers on Noah's behalf that we are here today celebrating his first birthday. I feel like the most blessed mother in the entire world. Thank you to all of you and to my Father in Heaven, who listens and hears our prayers and who loves His children.
With Much Love, Crystal at 9:38 PM
Noah's first birthday is this Wednesday so we had a huge birthday celebration this weekend. My Brother and his family who I haven't seen in over a year came to town (this was the first time they had ever met Noah) and Shane's family even came down. It was the best weekend EVER!!
Noah was spoiled beyond belief. There is absolutely NO question that this little boy is L.O.V.E.D!!
The day before we also took family photos which from what I saw turned out GREAT!! I can't wait to see the finale product.
I have tons of pictures to post and will get to them very soon.
With Much Love, Crystal at 9:25 PM