So Far So Good!

Hey there...Lincoln has adjusted into his new room on the pediatric floor...however mom and dad haven't! Now that Lincoln is on the floor there is less observation and the nurse only comes in to give meds and check on him from time to time. That leaves us with him 24/7 to make sure he is doing OK. Since we need to be in his room at night, getting sleep is hard to do especially when we share the room with another patient. Oh well...this just means we are one step closer to the exit doors of the hospital. I came down with a virus a few days ago and I am having to stay at home for a week while Kristen stays with Lincoln. Pray for her as she is exhausted from being there 3 days straight with no sleep. Pray that I get over my bug too...It is too dangerous to be around Lincoln while being sick. Grandpa Carter came down for a few days to be with Lincoln so Kristen can get sleep at night and while I recover. Lincoln, however, is doing great. We started trying to feed him a special formula 2 days ago. So far we have not seen any Chylous fluid coming out of the chest tubes. We have been increasing the food volume each day and so far so good. If we get through a few more days and up to full feeds and we still don't see any fluid in the chest tubes...they will be able to take them out...This is a huge prayer request!! Oh and by the way...before the transplant we saw that Lincoln had become completely orally averted to eating from a bottle because of not doing it for months. Since the transplant, Lincoln has been eating all his food from the bottle without any problems at all. It's weird...he just seems to be a different kid. They told us before the transplant that we would see him progress by leaps and bounds when he gets his new heart...they weren't kidding! Lincoln seems to have so much more energy. He is not only eating from the bottle...he is reaching for it. He is talking (baby talk) so much more, interacting with his movies, interacting with people and even getting a little attitude. Michelle asked if we can hold him. Yes, we can hold him even though he has his chest tubes in...it just makes it more of a pain for both Lincoln and us so we do it less often. He is getting antsy though and tired from being in bed so much. Continue to pray for healing of his chest and the Chylothorax and for NO infections or sickness. Pray for energy for both of us and that I get over my sickness and Kristen gets sleep and stays well too. Thank you all for your continued prayers and support...we love you all! J&K

Just Before Transplant

Here are a few pics that were taken a few days before transplant.

Lincoln's Transplant Team

Just a small part of Lincoln's transplant team: Joy (Lincoln's Nurse Practitioner...and the BOSS!), Dr. Perrins (one of Lincoln's cardiologist) and Nancy (our social worker)

On Our Way To The OR!

This was probably the longest and scariest trip we've had to take with Lincoln...down to the OR

Post Transplant

Well, here we are...7 days after transplant and Lincoln is doing great! Tuesday we did something we have never done before....we left the ICU and went to the floor! Lincoln is off all of his IV meds! There is a little bump in the road however. A few days after we started his feeds again, we noticed a not-so-normal fluid coming out of his chest tubes. To our disappointment, we all knew instantly what it was...another Chylothorax! I'm not going to explain it in great detail (if you want to know more, look at the previous post on June 6, 06...he had a Chylothorax after his 1st surgery also), but it just means he will not be able to eat for 2-4 weeks and his painful chest tubes will have to remain in for that long as well. In the big scheme of things, this will not affect him or his heart...it will just be a longer and more painful recovery...not to mention he will be hungry! Lincoln's color, blood pressures & sats are all normal...Praise God! Wednesday was a HUGE day...Lincoln went right back into the cardiac cath lab for a biopsy on his heart to see if he is rejecting. He was intubated again and they inserted a catheter into his heart in order to take a very small piece of his heart muscle. They then tested the specimen to see what the cells were doing and see if his body was rejecting the heart. This was scary for 2 reasons: 1. he just got out of the ICU from having a heart transplant! 2. The unknown prognosis from the biopsy. Well, he did great in the cathlab and yesterday they told us that there is no rejection so far! He will need another biopsy in a few months. Other than that we just have to sit tight and let Lincoln heal and make sure he is getting his list of about 25 medications every day. Once the Chylothorax heals and he can eat again it should only be another 1-2 weeks until he can be discharged. The Dr's still want us close to UCLA for the next 2-3 months after discharge. We will most likely need to stay at the hospital's hotel across the street because Lincoln will be in and out of the hospital for check ups every week. We will continue to keep you updated with info! It's hard to get to a computer now that we need to stay with Lincoln in his room in the hospital...so bear with us. If there are any questions that you have been thinking about asking that we have not mentioned, go ahead and ask them in your comments. Be praying hard...he still has a long way to go! We love you all! J&K

Extubation Complete!

They pulled Lincoln's breathing tube out a few hours ago...He is doing great! He is more awake and realizing his pain more. Pray for his pain as he is being weaned off his pain medication. So far so good...almost 48 hrs complete! Praise God!

Still doing great!

Thank you all for your continued prayers!!! Lincoln is doing well! Pray that he will be able to wake up a little more today and while he does that his heart rate and blood pressures stay stable. Details and pics to come...stay tuned! We love you all! J&K

Lincoln Doing Well!!

Lincoln got out of surgery at 3:30am and he is stable and doing well. A detailed update will be coming soon! Continue to pray...the next 2 days are going to be the most crucial test period on his body! Talk to you all very soon! We love you all! J&K

Lincoln Got A Heart!

We are so excited to share that we got a call at 8:30 this morning that there was a heart offer for Lincoln. Unlike the previous offers...this one is perfect for Lincoln. We don't know much about the donor nor can we get into the details...all we know is that it is a great match! Our hearts are filled with joy and excitement for Lincoln yet our hearts break for the family who lost their child to make this possible. Lincoln is scheduled to go into the OR around 8:30 PM. The surgery will last most of the night and into the morning. We are very very nervous! Please be praying for the surgery and that God orchestrates the whole event beautifully tonight as He has been doing from the start. Also be in prayer for the donor family! We will let you know how things go as soon as things settle down tomorrow! Thank you all so much for everything....We love you all and will talk to you soon. Pray! Pray! Pray! J&K Here are a some pictures that we were going to post today before we found out...enjoy!

OK...OK...We get the hint! We guess you like seeing pictures of Lincoln! January has been kinda hectic and we have been very busy. Lincoln has been doing well...for the most part. Currently, he is sick with Rotavirus (a gastroenteritis). But, before we get into that...let us recap the last few weeks. For the first few weeks since the last update (the 11th), Lincoln had been doing great, as evident by the pictures. Lincoln actually got offered a heart on the 13th. This has been the third offer so far...BUT, the donor was too far away (Hawaii). There would have been some dangerous risks involved with the time factor if he were to take it. So the waiting game continues! That's OK...God knows what's best for Linc and His timing is always perfect. On the 17th, we worked with the Occupational Therapist in trying to give a little "real" food to Lincoln. He ate some rice cereal and applesauce for the first time. This was definitely a shock to him....especially after not even tasting his milk or any other thing for almost 3 months. His trial run went very well! He was able to eat a little bit more on the next day, but because of spitting-up issues and currently being sick we have had to stop for now. On the 22nd, Lincoln's cardiologists all met together to discuss his current condition. They compared his most recent echocardiogram with the one done when he first got here in September. They told us that they think his heart has actually gotten a little better in the squeezing function. They also discussed possibly trying to wean some of his heart medications if things continue to go the way they are going. However, they were very clear that Lincoln was still in need of a new heart but they were encouraged that his heart has gained a little bit of strength back. For the past two weeks, Lincoln has been "spitting up" more. The doctors believe it has nothing to do with his heart but think he has acid reflux. They can't do anything more than give him medication for it, which he has already been on for.......ever. Even though it is getting worse, we just have to work with him...they won't dare surgically correct it until after he gets his heart. Lincoln is doing some new things developmentally. He is reaching for things more and more. He can give you a "high-five." He is talking more and more...and he found his scream again! He loves to smile and show his tongue...why?...who knows? He's just so darn handsome! Now back to the virus. Yesterday, Lincoln was doing a lot more than his normal spit up. He couldn't keep anything down...not even his meds. Last night he spiked a fever and they had to stop his feeds and put him on IV fluids. They tested a bunch of cultures and today the labs came back positive for Rotavirus. This is a flu-like virus in your intestines causing vomiting, diarrhea and fever. Because of this virus, Lincoln feels so sick. When seeing Lincoln, we now have to gown up and take precautions against spreading or contaminating...it's a pain but it's needed. Hopefully, with lots of prayers, this should last only 3-8 days. Because its a virus...they can't give any medications or antibiotics (just Tylenol). Please pray that he won't lose anymore cardiac/pulmonary reserve while battling this illness. One positive thing that has happened in the past 24 hours is that we were able to turn Lincoln's oxygen completely off and get rid of his nasal cannula. He has been satting so well that he doesn't need the extra support and we were able to take one of the bandages off of his face. We've had a lot of visitors which has kept us busy and has helped mix up the day. Thanks for coming and keeping us from getting too bored. We know there are so many of you who have helped out in so many different ways! We wish we could send "Thank you" cards or respond to every email, card or gift we receive...but that would take way too long...there are just too many of you! Just know that we love and thank you all for all of your thoughts, prayers, support and love! Our Journey would be so long and tough to get through without you! We will talk to you all soon...we love you all! J&K