Surgeon's appointment - We are back to school!

We had our Appointment with our Surgeon yesterday. It went really well. She says the incision looks great. The tube holes as well (John calls them bullet holes). The swelling is down and the lump at the top of the incision is fine. His heart sounded great - with a good beat. So she does not feel he will need a pace maker but said we would get the final word on that from the Cardiologist next Thursday. We have to continue our meds but can decrease our Lasix to once a day - John was mad he could not "Quit it" but understood that we have to have it to continue to make sure we do not fluid build up on the heart. He said "FINE". She said he could go back to school - he lit up and was so excited. We thought he would have to wait until the 3rd but she saw no reason to wait. He cannot go to recess or PE until after the first of the year. There is to high of a risk of getting a hard hit to the chest if you go to recess or PE so she thought we should wait on those. He always ask her questions - and may I say that he does not discuss with us prior to asking her:) - Can I dig? Can I run? Can I jump? Can I wrestle with Caleb? She said yes to all but the last one - and he said okay.

So we are all very blessed he has done so well. John had his chest wide open and someone in his heart four weeks ago yesterday and today he is going to school. I have no doubt that it is because of all of you who have prayed along with us to God. God recieves all praise and thanksgiving for John's healing and we just ask that you continue to pray for his healing and that our appointment with the Cardiologist goes as well.

Blessings and Love,
Angela and Thomas

Week 3 at home

The rest of last week went well. He returned to his normal schedule with me. I think he just over did it some. We did lots of schoolwork and had fun meeting our homebound teacher. He just enjoyed having to be taught by someone else. We went Thursday to our Audiologist for our 3 hour hearing eval. John's natural hearing is not getting better or worse. So that is good. He did okay but three hours is hard for anyone. I think all 4 of us in that booth were going stir crazy:). He did well though. Our BAHA to sum it all up is doing it's job and he is hering with it the best that he can. He hears much better with the BAHA then he would without it. It also confimred what most of us who are with him a lot know - he does well in quiet environments but when you factor in lots of noise we have a much harder time finding the sound we need to follow.

Friday took us back to Vandy for speech and language where he did really well. Since I have been working with him one on one for the past three weeks you could tell that he was getting it a lot faster. She was very impressed with how well he did. Way to go JOHN!

The weekend went well - Sunday he was really tired and worn out. But that happens when you factor in more people and more activity - so we stayed in and tried to go slow.

That was it for week 3~
Angela

Week 2 at home

Last week went well. John started the week by telling me that he did not want to have to look at me for another 41 days - in which I returned the sentiment and expained that it is only 21 days anyway:) He is getting tired of being stuck in the house. But Monday my cousin Mary Margaret watched him while I went with Caleb and his class to the Pumpkin Farm and then Wednesday Daddy keeps him so I can go to my Disciple Bible Study. He was happy to be with someone other than me and it gave us a nice break from each other. Don't get us wrong - John and I love each other to death - it's the death part that gets tricky:) No just kidding - I would do all this for him if I was able to take his place and he knows it. He just misses his classmates and Caleb so much! I will miss him dearly when he has to returns to school - this time despite the reason for it- I have truly enjoyed our special time together.

Fall break fell at the end of the week and over the weekend so he was happy to have playmates and company. Takes alot of supervision but it was good for them all.

Monday we returned to our regular schedule. Yesterday, Tuesday, was not his best day by far. It started with some vomiting and nausea along with a really pale coloring. I checked him for fever - never had one and the incision looks fine. He ate for me regular at lunch and dinner so I tried not to worry anymore. Today seems to be better but he is still pale. He needs to rest more and is getting tired more. Hopefully that is just beacuse of increased activity.

His follow up with the surgeon is Monday the 27th and then with Cardio the following week. Please continue to pray that John stengthens each day and that this little bout will pass quickly. Please also pray for us on Monday as we will see the surgeon and find out whether or not there is a chance he needs a pace maker. I pray despratly that he does not knowing that he may have to and that God's will will be done - I just hate for him to have to go through another heart surgery.

Thank you all for the meals, cards, prayers, gifts and mostly your love and friendship. They are what sustain us.

Love to all,
Angela and Thomas

Week 1 at home

Well John and I survived each other at home this week. It is hard to keep a five year old who feels like getting up and playing down. He thinks he can do so much more than he can and well sitting around all day gives him that false sense. Even showering wears him out. He has mastered Rummy - well the Handy Manny version atleast - so far he has beat me, Grandma, Pop and Abigail. He loves playing cards and coloring. He plays on his doodle pad alot and loves watching the Scooby Doo movies as well. We started going down stairs midweek once Caleb and Abigail went off to school and that seemed to help. We do about an hour of school work a day - some at the table, some on the couch. It is hard for him still to sit in a chair upright that long. Just makes him sore I think - he would never admit that because he hates the pain meds. He has not had any at all since last Thursday. We brought them home but have never opened the bottle.

We have been blessed with a weeks worth of wonderful meals. We appreciate all of the continued prayers - they are the reason John has come through this so well. Even the surgeon was shocked he came of the venelator so fast and was ready for home on Friday. The staff even comment that he must have some special powers - he does the power of PRAYER :)

Thank you all for your support, prayers, gifts, meals and Love - they are what continue to substain us. Thank you also to everyone who has made mail time such a highlight in John's day - he loves seeing how many Get Well cards he gets each day:)

Well Goodnight for now - I will blog some funny happenings tomorrow - all the quirky little things John says that crack me up :)

Angela

John is Home

Friday we brought John home. We were released around 4pm. He had a tough time on the ride home - very uncomfortable. Got home and went straight to my room to be quaretined :) He slept well and was happy to have no one poking on him through out the night.

He spent Saturday laying in bed - sleeping on and off and playing cards etc. He is still sore but talking and everything like usual.

The lasix he take twice a day makes him take many trips to the potty. He does not like it but he needs it to drain the fluid etc from his heart. We will find out at our check up how long he will be required to take it.

I will blog more later - he is calling for me - potty again :)

Angela

Friday - Day 5

Today we started early as we do every day. The X-ray machine comes every morning at 5am. Labs are at 4am. And then we meet with the attending - his x-rays we took yesterday - 3 times - all came back good and so did his labs. We did an echo and as best I can tell - and I am no expert but I could not see the hole that I had been able to see in the past - I hope I am right. So we wait for now to see if all checks out and then we will get to go home. We have removed all 3 IVS, tubes, wires, pads, all the garb I think he hated. We just have the chest wires left and some stitches from where we removed the tubes. Those come out in an hour and then we will meet with the team to see what happens next. I pray my next blog comes from my own computer in my own home.

John is a very blessed boy to have such a wonderful team of doctors, such loving family and friends and so are we.

I cannot say enough that it is through the outcry to the Lord from all of you that all of this happened the way it did. God is truly been glorified in John's life and I cannot wait to see what other plans he has for his life. I am just honored that he allowed Thomas and I to be able to see just a glimpse of his glory, peace and love come shining though in John. Thank you all for everything!

We love you all~ Angela

Thursday - Day 4

Since we did not post yesterday I thought I would update. He had a very big day. We had lots of wonderful family and friends come to visit. They took out his pacing wires as Tom had mentioned on Wednesday. So yesterday we took out the drainage tubes. John was given more morphine to give him a quick short help with his pain. They were removed really quickly - but it is some what of a messy procedure. John did very well - took a great big breath - as did Mama - I actually gasp. Then forgot to breath - John yelled at me "Mama breath :)" We got the mess cleaned up. The tubes diconnect like a purse string - they pull out closures to close the hole and then you just tie off the strings. He did well - he just wants to watch every thing they do. From there he was really tired and slept from 3pm-6pm. We got him some dinner and he actually got up out of the bed to potty and we made it to the door of the room to walk down the hall and he was tired. So we watched my movie - Tom and I have to be CPR trained before we leave - they won't discharge him until we are. So since Tom already is certified I just had to take a short video course and then use a dummy to demonstrate I could save John if I have to. Funny thing is I kept my certification up until I had Abigail - well that really is when you need it most - when you have a child in your care every day. So I am back to certified and will keep it that way! He did CPR on his animals while he watched me do it on the dummy. So if you all have a stuffed animal that needs CPR - John is your man :)

Love to all,
Angela

One more day down

Things are going better each time we turn around. Today John was at his best. He's eating well, drinking fluids and alert. We have had him sitting in a chair for about 15-20 minutes. Also today they remove his PM wires (jumper cables). They were attached near his drainage tubes to his heart. All we have in now are the drain tubes and one IV for meds and lab work. John will have a big day on Thursday because they will remove the chest tubes and he knows that there will be pain and blood. PLEASE pray for John so he can have peace about this and help him realize that this is one step closer to home. John officially doesn't trust any nurse within 100 yards!
Until tomorrow,
Peace,
Thomas