Still Waiting

So Landen seems to be doing better in the last few days. He's back up to full feeds through the feeding tube. The tube goes all the way to his intestines passing the stomach as his stomach is still not liking nutrition for some reason. But his color is good, and he’s not as fussy as he had been late last week and early this week. He also got to spend some time with the Physical Therapist yesterday and that was fun for him, and he did real well. His heart rate is being kept under control by the meds and we feel he's in as good of shape with his meds as he ever has been. So we'll just keep waiting and praying!

Waiting for a Gift

Hello Everyone. Landen has stabelized out as far as his heart rate goes. The combinations of meds seem to really have things under control. He is slowly going back up on his feeds. His tummy is still bloated but not as bad as the last few days. As his tummy gets better his feeds will go up and hopefully they'll let us start on bottle feeds again... he seems like he wants to eat so thats a good thing.
He really seems like hes in a good place now, and once he gets to eat again I think he'll be a pretty happy little lion.

So currently he is a 1A priority status candidate for transplant. That is the highest he can be on the list. He was raised yesterday from a 1B status. The implementation of IV meds is what qualified him for the higher status. As long as he's on the IV med, he'll be there, but if they decide to take him off the IV med he'll be lowered back to a 1B. This is quite an interesting position to be in, in the aspect of wanting him to be the highest priority on the list, yet wanting him to be poked, prodded, and supplemented as little as possible. I know it is a very interesting position for the doctors to be a part of as well. We are just greatful for the prayers and faith that have accompanied him to this point. We believe that all things are being worked out for his benefit, and have no reason to think they won't continue to fall into place.

We've also begun praying for the family from which Lion's gift of life will come. We've been praying for their comfort and blessings. Its hard to comprehend that from such a tragedy in the life of another family, that such a blessing will be realized in our own. Very humbling.

We are so greatful for the prayers, faith, and efforts being made in Landen's behalf. Much thanks, love, and gratitude to all of our friends, families, strangers, and our Father in Heaven for the watchful care and angels ministering to our son.

GO LION!!

Listed

Our Cardiologist and the rest of the staff here at Primary Children's rock!! They got us on the transplant waiting list today!! We are Priority Status 1B... the only one higher is a 1A. We will be kept here for at least one more night for observation. Lion had some funky beats earlier today and they want to make sure nothing develops from those. If they continue, he will most likely be admitted to the ICU, and put on an IV drip of another medication called Esmolol.. he was on that originally before they got him onto hims current oral meds. There would be pluses and minuses to going to the ICU. Big plus is that he'd be bumped up to Priority Status 1A, the downer is that he'd probably have to stay there until the transplant... so alot of mixed emotions. Everything has worked out up to this point, and we know that things will continue to fall into place. GO LION!!

P.S. thanks everyone for the comments, continued support, love, prayers, and faith. We have the best family/friends ever. We wish that we could respond individually, but please know of our gratitude and love for each of you.

Lion Needs a New Heart

Hello everyone. It’s been a crazy few days. After the Genetic tests came in, testing positive for Leopard Syndrome our cardiologist set a new appointment with us. The original follow up was set for late May. We had this appointment on Monday. There they observed how he was doing and also performed a new echo on his heart. The result showed a decrease in heart function and a worsening of the obstruction to his blood flow, so his HCM is actually getting worse. When the doctor came in to give us this news she then proceeded to tell us that we needed to consider a transplant. Later talking about it, Tammy and I both feel that we've been emotionally prepared for this, as we were very anxious to get the process rolling. Next a transplant coordinator came in to talk to us. She said that the process to get someone on the transplant list usually takes 1-2 weeks. We told her that we wanted to get going on it ASAP, right then our Cardiologist chimed in... "no, we're getting on this now" what proceeded was nothing short of a miracle. Over the next 4 hours each of the groups that we needed to meet with came in one by one, Nutrition, Pharmacy, Social Work, Financial, Surgeon, Genetics, we got it all done in one day. The coordinator said that in her 20yr of doing this, she has never seen things line up so quickly!! We really believe things are lining up for Lion to get this done, and get him the new heart that he so desperately needs. Yesterday we had some blood work drawn on him, and we shared our concerns with the Doctors about a decrease in his appetite and also and increase in his fussiness. They decided to admit him and we are back in the hospital for observation. I'm so proud of Tammy and how strong she has been the last couple of days. You know, there are hard minutes, hours, and even days, but we want to let all of you know the overall feeling of peace and comfort that we as a family have. We are so grateful for the love, prayers, faith, and support of all of our family, friends, and many who don’t even know us but are offering faith and prayers anyways. We know that there is enough faith pooled together to make this right if it’s God's will.

Anyways today the cardiologist is presenting Landen's case to the transplant review board. So we should have an answer back today as to his eligibility for a transplant and his initial Priority Status on that list. We are so grateful for the wonderful doctors and nurses who have helped us along the way. Primary Children’s in SLC rocks!! We'll keep you posted!

Love,

Joe Tam & Fam

Genetics Testing is in

Sorry the blog is not updated as well anymore. I have to say it was a lot easier to update while we were still in the hospital. Although we are very busy and much more worry now...we love having our little boy home. The genetics tests came back this week. Good news first...he does not have Costello's syndrome which cardiology was thinking that the most likely cause of his cardiomyopathy. We are so excited to not have that syndrome. And the not as good news...he does have a syndrome. It is a very rare syndrome called Leopard's Syndrome. There is not a whole lot know about this syndrome because it is so rare. We will be meeting with cardiology next week and genetics next month to find out more information. The syndrome itself is not life threatening, but his cardiomyopathy is our biggest worry. We know he is a fighter and he can make it through this. Brayden got these new books for Easter and one is "Who would win: Lion vs. Tiger," well, of course, the Lion was victorious over the tiger and Brayden says that a Lion can also beat a Leopard because a Leopard is a lot like a tiger. So we know our Lion can beat this...he is amazing.

Lion is Home!!

Hello Everyone!! Sorry for not posting for a while, we have been VERY busy. Landen came home Wednesday March 24th. It has been so great to have him home. That Friday, Brayden, Madisen, and Koelle we're brought back home by Grandma and Grandpa Kirby... It was so great to have the family all together! The older kids love having their new little brother at home! Landen is so lucky to have such great siblings! Tammy and I are lucky to have them all! It was great to have Dennis and Kathy here with us for a few more days. All of our family and frineds have been a huge support for us through this time. THANK YOU! Your efforts, prayers, and faith have truely made a huge impact in our lives, and words cannot adequately express our gratitude for the blessings poured out upon our family in the last two months. We love you all!

Now that Landen is almost wireless...he can have a real bath. Unfortunetly, as you can tell, they are used to smaller babies (he barely fit in the bathtub).