We all made the trip to Dallas as a family this time, and received another great report! Jayke was taken off more medication, and is now down to one medicine (plus baby aspirin) a day! His heart rate still looks great. The echo showed everything working as it should. Praise the Lord! We celebrated with a trip to the Magic Time Machine restaurant. Jayke was excited we were going home after his doctor appointment and not back in to the hospital like he remembered. Thank you God for your grace and mercy. Thank you, friends and family, for your prayers.
This checkup went so fast! Jayke hopped his way down the hall of the doctor's office with a huge smile on his face. His SATs and rhythm looked great. Our next appointment is NINE months away! Praise the Lord!
Big sister, Madi, was very nervous about this trip. She was sick for most of the trip because she remembers these trips as surgery trips. Please pray for her, too. That she will have comfort in knowing God's control in our lives...that He is taking care of her and Jayke.
We are expecting a baby girl in August! We had a sonogram showing all four chambers of the heart as well as all other organs that are all normal!
Thank you again for your faithful prayers; please don't stop. We praise the Lord for his mercy!
Dad and Jayke took a GUYS only road trip for this checkup and the girls stayed home for a GIRLS only weekend at home. We were attempting to help Madi not be so worried. She did great with all the distractions for the weekend. Jayke did good riding in the truck singing Madagascar songs over and over.
Jayke's echo showed his pulmonary artery is narrowing. The doctor says it doesn't look good, and she would like to keep a close watch on it. We need to go back in 6 months.
Please pray for COMPLETE healing of Jayke's heart. God has been so faithful, and I know He has great plans for Jayke's LIFE.
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Monday, July 31
We just left the dr office, and Jayke did great! He is so good to let them do whatever is necessary to get a good "look" at his heart.
Jayke's pulmonary artery is still too small. There were slight improvements in the measurements, but not enough. So, the next step for Jayke is a heart cath and angiogram/plasty (balloon). The cath will allow them to see why it is narrowing, and the balloon will open it up more. They did say there were no obstructions in the artery, no clots, and very good function.
We go in to Dallas Medical City tomorrow. The "procedure" starts at 4:00. He will probably have to stay overnight.
He is frustrated with having to go to the doctor "every day", but is trying very hard to be accepting of the fact that he needs to.
Grandpa and Grandma being here has been a huge help! Thank you Grandpa and Grandma!
Madi has felt good during this trip. She got so excited before we left that she almost threw up. But, once we got going, she was fine. She hasn't stopped talking since we got to the hotel.
Hope is trying to figure out her new environment that changes every day. She is not sleeping all that well, but we will just have to work on that when we get home.
Thank you for your prayers! Please keep praying! We love you!
Tuesday, August 1
Jayke ate a light breakfast then was allowed to drink until lunch time. We tried very hard to get lunch for every one else while Jayke was busy playing with Grandma and Grandpa. Then Tim relieved them so they could eat. Then Grandpa and Grandma stayed with the girls while Tim and I were able to take Jayken to the hospital for his angioplasty.
After the pre-op x-rays and blood draws, the doctor came in and explained in more detail the stent and balloon that would be used to widen the pulmonary artery. He also mentioned it would take 2 - 2 1/2 hours for the procedure. Jayke did not get a nap before we went, so it did not take long after he took the "goofy" juice for him to fall asleep. He was still asleep when they wheeled him away on a stretcher at 5:00 pm. Then Dr. Kort came in to see us at 5:45 pm! He said Jayke's fine and the pulmonary artery is fine. He could have placed the stent in the artery and gained about 1 mm, but didn't feel the results would be worth the risk. He and Dr. Kao discussed it and decided not to place the stent. The echo in the office showed the PAs (Pulmonary Arteries) to be about a 3.5 mm to 4 mm after several different measurements (trying to be very accurate). The angiogram showed the PA to the left lung to be a 8 or 9 mm at one end and 7 or 8 mm at the other, and the PA to the right lung was "quite a bit larger." The left side is just a little under developed than the right side. Because of scar tissue that has built up from 3 open heart surgeries, it is very difficult to see the PAs without an angiogram/heart cath.
So Jayke is fine the way he is. They are wanting to watch the Pulmonary very closely and any change in symptoms (i.e. blueness, more tired, more chest pains with activity, etc.) so we need to go back every 6 months. The heart caths are going to need to be done every few years. There needed to get a complete diagnostic view, but if you do too many, the veins will close up. So, we just try to watch Jayke and any possible symptoms very closely.
Since the cath was done so late in the day, Jayke needed to stay overnight in the hospital. He was not at all happy with this. When the nurse and Tim would ask Jayke what they could get for him... a popsicle, drink, etc., his response was "you can get me home." Tim stayed up with him all night in the hospital. I went to the hotel to check on the girls.
Wednesday, August 2
Since Jayke was so wanting to go home, we decided to try making it home today. After a nap on the road, Jayke was already feeling better. We got home and are going to sleep in our own beds tonight.
Thursday, August 3
Jayke woke up a couple of times with nightmares. The meds they give him in the hospital always have this side effect on him. He has spurts of anger/aggression and nightmares when he sleeps. It will take a while, but eventually the nightmares will be less frequent. Madi has lots of questions and concerns about Jayken. She is old enough to comprehend just enough that she can't understand. So, through lots of prayer and extreme caution, we are answering lots of questions.
Thank you for all your prayers. Please keep praying for Jayke. Praise God for another amazing miracle in Jayken's life!
And by this we know that He abides in us, by the Spirit He has given us. 1 John 3:24
Dad and Jayke took another guys only trip to Dallas for this checkup and had a great time. The doctor visit went extremely well. Everyone was amazed at how tall Jayken is and that he is so strong. The echo, which normally takes about 1 1/2 hours, only took 15 minutes! Jayke is so big now and he lays so still for the doctor that they could get everything the first time! Dr. Kao said he is very big and strong now. He is strong enough to get through alot of the illnesses now. We still need to be really careful of the flu. There is no need to wear any kind of chest protection, either. She said we can start letting him be around other kids now! We let him start church choir for now, then we will ease him into Sunday School then school by the first grade, hopefully.
Praise God for his Grace and Mercy in taking care of Jayken!