Tomorrow Came!!!!

WELL... it finally happened. The tube was removed today. Yes... it hurt... alot. Joseph was tough, though, and very relieved when it was all over. It's important that his body rid itself of the fluid build-up, otherwise another tube would need to be placed for drainage. This is where the Lord's medicine really counts. Joseph received a blessing tonight from his Grandpa Shields. Heavenly Father has carried our little Joseph's heart in his hands for 4 1/2 years and I know he will continue. When it comes to trials, this has been a doosy, but I wouldn't trade it for anything. It has made our faith stronger, our testimonies greater, and our family closer. The Lord has given us something greater than a miracle. He has blessed us with a gift that allows us to, everyday, live for the eternal goal. A goal that is easy to loose sight of in this world. The Savior didn't just atone for our sins, he atoned for our pain, our loneliness, our inability to cope. He's there to carry us through our trials, no matter how difficult they may seem. Weakness brings us to our knees and closer to Him that loves us most.

Tomorrow, Tomorrow, Tomorrow

That seems to be the most common saying in Joseph's room these days: "maybe tomorrow"
He still didn't get the chest tube out today. I asked for an increase in his pain relief. Every 3hrs he gets either Motrin or Lortab. This has made his day much more comfortable, he was even able to get up and walk down the hall without crying out in pain. It's crazy.... they can't take out his chest tube but then they ask if I'm getting him up to move around- sure, no pain in that activity : big giant tube hanging, with no support, just a few stitches, out of a little skinny 4 year old chest. I didn't take any pictures of that, but I think I will, just to show how strong Joe is being. He really wanted to go outside today, so we did. Then, once outside, he wanted to go to the car. It wasn't the greatest reaction. I think everyone around us thought we were torchering our poor, sweet, sick child by exposing him to a trip outdoors. We were much more thoughtful about the places we decided to go on the next walk about. It seems the vending machine is a good destination, with a built-in reward. He can't get too upset when he's walking back to his room with CHeeTos in hand.
So.... like I said yesterday... maybe TOMORROW he'll get his chest tube out so we can go home.
I have to look on the positive side: at least it's not 6 weeks of Tomorrow's like it was after his cardiac arrest. I know reading a blog without photos is rather boring, so, sorry about that but I usually don't get to posting until rather late. But don't worry, I'll have some pictures to post TOMORROW.

Well....? I didn't post anything last night because I was in hopes to have good news today and be able to post that instead of the same old stuff. But, unfortunately, Joseph had more chest tube output yesterday than even the day before. Mainly because all his IV diuretics were converted to oral and they're just not as strong so more fluid built up around his heart that had to be drained through the tube. The hardest part now is watching how miserable the tube makes Joseph. He has to get round the clock scheduled Lortab and sometimes a little morphine to deal.
I'm really praying that he can get it out tomorrow. Other than that, all is going pretty good. The doctors have asked that he gets up and walk at least three times a day, even despite the chest tube, so that he doesn't get too much build up in his lungs that may turn into pneumonia. The walking gets him coughing which clears out all the junk. Plus, his muscles and bowels really need the movement.
We have decided that Joseph has Chuck E Cheese OCD. He asks about every 15 min.(sometimes less) if we're going to Chuck E Cheeses- only he uses a special sign that he made up to mean Chuck E Cheese. My answer is always the same "we'll go to Cheese's when Joey's better". This satisfies him until he asks again 10min. later. I figure it must set his mind at ease to ask and be reassured that eventually he'll be out of the hospital and can do something fun.
It's a good thing all his longer hospital stays happened when he was a baby and didn't have any concept of time otherwise they may have needed to give us both morphine.
Say a prayer for us, they're always the best medicine.

Thanks so much for all your thoughts and prayers. I am so glad so many of you have taken the time to look at Joe's Blog. Your emails of love and support keep me going.
Joseph is doing well- baby steps, but still progressing forward. His only complaint has been the 1/2 inch chest tube inserted at the base of his sternum. It has started to become quite irritated. Normally, in most cases, they don't have to leave it in so long but because Joseph's Fontan conduit does not have fenestration, fluid has accumulated more heavily around his heart and lungs than the typical Fontan patient. So... his chest tube must stay in until the output is mild enough that it can be just expelled as urine instead of being directly drained. He's so strong, though, and bear's the pain rather well. We've upped his oral pain meds to make him more comfortable. Today, he asked to go to Chuck-E-Cheese about five times.

(i'm no longer receiving the silent treatment)

I expect it may be a few more days before the chest tube can come out but once that happens, the light at the end of the tunnel will be in view. As soon as that time comes, for us to go home, Chuck-E-Cheese will have to be the first stop.

Things are going well here in room 3086. Joe's potassium levels rebounded today but his sodium is still down a bit. They discontinued an IV diuretic and increased one of his oral diuretics. The hope is that his body will release the fluids but not as much sodium since an oral diuretic is not as strong as one given in IV form. So, we'll see tomorrow if the plan works.

Chest tube #2 was removed this morning- just one more, but it's the big one so I'm hopeful that they'll be able to take it out by Thursday. I'm also hopeful that we can be home by the first of next week. What a feeling it will be to go home knowing that we don't have to think about one more surgery. We just need to pray that the Lord will strengthen Joseph's heart so that it can last until another medical advancement is made. I just read today that medical advancements are being made each year that help extend the life expectancy of single ventricle heart patients. The Lord's design's will be realized in one way or another. Our faith is strong and we know that Joseph is here for a reason regardless of whether it be for 5 years or fifty.

This morning, when Joseph's surgeon, Dr. Kouretas, visited, I explained to Joseph who he is and that he was the one who operated on his heart to make it better. When Dr. Kouretas was ready to leave, I asked Joseph to tell him "thank you". Joseph signed and said "thank you." I don't think Dr. Kouretas was expecting anything since he knew that Joseph has been envolking his right to remain silence. I could tell that it thrilled Dr. Kouretas that Joseph broke his vow of silence to say thank you. It thrilled me too.

Life on the 3rd Floor

Joseph was released from the ICU yesterday. He is doing well. One chest tube was removed yesterday - one down, two to go. He is still giving me the silent treatment. I don't blame him - I'd be mad too if one minute I was running around and the next I woke up in a hospital bed with my chest cut open, hooked up to all sorts of machines and a tube down my throat. I'm sure once his tubes are out and he can move more freely, his mood will improve. Our only minor concern right now is with his potassium and sodium levels. They're a little lower than they should be but we're trying all sorts of horrible tricks to try and raise them: like hiding salt pellets in food- poor little boy, he'll never trust his mom again when she offers him chocolate ice cream. Needless to say, it didn't work anyway. Instead of swallowing the salt pellets whole inside the ice cream, he started chomping on them, like they were almonds or something. Soon after, of course, those few bites of ice cream made their way out the same way they went in.

So... since I'm sitting around all day, I thought I would create a blog for Joseph. Sometimes... it's really nice to have nothing to do but sit in one spot for only one reason- it gives a lot a great time for thinking and doing some of the things we have been wanting to do for awhile. I hope you enjoy those moments too, hopefully they won't have to be done in a hospital.

Brad, Will, and Lainey came to visit today, along with Brad's brother Lance and his wife Jamee. Joseph still refused to break his code of silence and Lainey seems to be a bit mad at me as well, I just can't win. Luckily, she's only 3months old so as fast as she decides to be mad, she forgets. Plus, she's so good natured that I don't think she'll ever be much of a grudge holder.

If you know of any foods high in sodium and potassium, besides bananas and pretzels, let me know.

Good Night

here's a few photos from the day's past:

day 1: just a few hours after surgery

day 2: no ventilator

day 3: looking better

day 4: sitting in a chair but not happy about it