Back at UCLA

Hey there friends! After being discharged from Children's Hospital last week...we are back in the hospital again. Lincoln was doing so great at home for about a week until he started having symptoms of respiratory distress. His cardiologist said that his heart is in a state of congestive heart failure due to the weakening of his right ventricle. When we left the hospital last week after having our scary little episode his heart function got stronger again....but while we were home last week it started poopin out again. They are not sure why it keeps getting tired....it could be: 1 - his chronic heart condition and all the surgeries he has had are tiring out his heart. 2 - a viral infection attacking the heart (called Myocarditis). 3 - his heart needs more medicine, rest and time to recover from the problem two weeks ago. Whatever it is, it is being categorized as Cardiomyopothy. There is not much you can do for Cardiomyopothy other than watch to see if it gets better and try to help strengthen the function with medicine. If that doesn't work...Lincoln will need to be evaluated for the possibility of a heart transplant. Lincoln's cardiologist encouraged us to entertain the idea of going back down to UCLA for evaluation and a second opinion because they deal with kids that have Cardiomyopothy all the time. Plus, if they can't figure it out and Lincoln needs to be put on a heart transplant list, we will already be at the hospital that does transplantation because Children's Hospital in Fresno doesn't. So here we are, Lincoln was flown down in an airplane by the Children's Hospital transport team to UCLA yesterday. We arrived a few hours later to find ourselves at our old stompin ground. Its hard to be back down here but if this is what's best for Lincoln than it's a must! It is also a praise to be able to stay with our host family again...the Hayes...they are truly a blessing! So pray for Lincoln...over the next couple of days they will watch and evaluate what his heart is doing. They will do tests and experiment with different types of medicine. They will try to get him back home again....or they might have to put him on a heart transplant list. The future is in the Lords hands and we praise him for each new day of life! We will keep you updated on his progress and RECOVERY! Thank you all for your continued love, support and prayer for Lincoln and our family. We love you all! J&K

Lincoln's Home!

Thank you all for your continued prayers for Lincoln this past week! His Life is so fragile and keeps us on our toes...but God is good and gave us warning signs that Lincoln was in distress. After undergoing a heart catheterization on Saturday night, Lincoln made a great recovery. He was extubated on Wednesday and transitioned pretty well when they took his ET tube out and started breathing on his own. His cardiologist kept him in the hospital for a little longer than we hoped because he wanted to keep a close eye on his heart function because the stress on his heart from the blockage made his heart very weak...and now attempting to breathe and eat put an even bigger load on the heart. Well...according to the echo he had before they discharged us on Monday, his heart strength is getting better sloooowwwwly. It is no where near how they would like to see it work but think it just needs time to recover. This is a huge prayer request considering he only has one good ventricle instead of two and this ventricle has to sustain him through 2 more surgeries and life...and now it is weak and trying to recover. Monday was a great day...we got to come home again! Anytime you enter the hospital with life threatening issues your mind starts to wander. Hospital stay is a tiring and scary time....so needless to say it is awesome to be home. Continue to pray for our strength...as we came home with even more medications to give Lincoln on a daily basis and the constant stress of watching for symptoms of distress has increased. Trying to manage that and keep a clean, sterile environment is very tiring! In the midst of all that....Lincoln is like a different boy. He is eating sooooo much better, his color is better, he looks happy and is even smiling...which he never did before entering the hospital. Thank you all for your support and prayers and thanks to all who came to visit Lincoln this week in the hospital...it was a blessing and it helped break up the long days a little! We love you all! J&K

Pray For Lincoln!

We would love to give you pictures and an update about the progress over the last three weeks but we have some more urgent news to give you. Wednesday (9/6) Lincoln had a scheduled appointment with his pediatrition. We told her that he had been sweating on his head and neck a bunch but his hands and feet were cold. He also had been laboring in his breathing more than usual. Fortunately he was scheduled to have an echocardiogram done the next day by his cardiologist because the symptoms we had mentioned sounded like some kind of heart trouble. Thursday Lincoln had his echo done and the results were less than pleasing. His cardiologist said that his heart looked more tired than it did a month before and there was also a potential blockage. He wanted Lincoln to have a cardiac catheterization the following Wenesday to get a better picture of what was going on inside his heart. After that appointment we went home in preparation for Wednesday. The next day (Friday) Lincoln started laboring even more in his breathing and started having a low-grade fever. He was also not eating and severely dehydrated. We felt Lincoln was working too hard at breathing to wait until Wednesday so we brought him in again. The Dr's felt that he should be admitted so they could monitor him until Wed. Through the night Lincoln had ups and downs...he was struggling to eat and was turning pale. Saturday morning while in the hospital we felt Lincoln was going from bad to worse. They ordered another echocardiogram. A different view confirmed Lincoln had a blockage in his aortic arch probably caused by scar tissue that had built up where the coarctation repair took place during his first surgery. It was significant enough to block the flow of blood to the point that his heart was overloaded and failing. They decided to rush Lincoln in to PICU (Pediatric Intensive Care Unit) and intubate him and start giving him some special heart medication to help out his heart function. Through the day they stabilized him and told us that the blockage needed to be removed but the good news was that they could do that during the heart catheterization. The bad news was that the Dr that does these specialized catheterization was out of town until Thursday. They told us we needed to have it done soon so they decided to fly Lincoln back down to UCLA for the procedure. While we were home preparing to leave again for UCLA the Dr called us an hour before Lincoln was to be transported and told us that the Dr had not left to go out of town yet and that he could do the procedure that night. We rushed back to the hospital as they were preparing Lincoln to go into surgery. The catheterization took 3 hours and they were able to open the blockage with a balloon. This is just a temporary fix and will have to be repaired again soon in the future but should buy him some time before his next scheduled surgery in a few months. Lincoln is now recovering in the PICU. He needs lots of prayers! Some concerns are that the heart and lungs were working so hard for so long that they could have been damaged...so the prayer is that now that the blockage is gone, that the cardiac function (squeezing effect and vigor of the heart muscle) would come back. Another prayer is that he can ween back off of the ventilator and breathe on his own again...this is touchy because breathing puts an extra load on the heart and his heart is already very tired. Another thing is, unless he is able to come home and his heart function and ventrical strength gets better, he will not be able to have his next surgery. PLEASE PRAY THAT HIS HEART FUNCTION GETS STRONGER AND HE CAN COME OFF OF THE VENT! Well, we will try to keep you posted of his progress as much as time allows us...until then PRAY, PRAY, PRAY! Sorry again for the lack of corrispondence...the last three weeks have been very fun and Lincoln was doing great and hopefully soon again. We love you all! J&K