Friday, October 30, 2009

Exciting News

Several months ago, we contacted Cincinnati Children's about Titus and seeing if he would be a candidate for airway reconstruction. Titus has a "floppy" airway- and many of our doctors believed he would outgrow it. But, here we are with Titus about to turn two and we are still on oxygen due to his airway issues.

We found out a few weeks ago that Titus' case was reviewed and he was approved to be a candidate. And we found out last week that we have a date for the evaluation. They will do a 4-day evaluation with a team of doctors looking at the entire breathing/swallowing/airway issue. After the evaluation, they will decide if he would be a candidate for surgery. We go to Cincinnati on Nov 30. Your prayers will be greatly appreciated.

Titus has been doing great the past few weeks, but he has had increase in de-sats during the night. He has learned to high-five, and his new favorite toy is the sit-n-spin. We put him on and hold him, then spin him back and forth and he just laughs outloud (which is music to our ears).

Wednesday, October 28, 2009

Cade Turns 5

Cade turned 5 on Tuesday and what a momentous occasion it was for him. He has been so excited about his birthday for the last several weeks.

On Sunday, I told him I was taking his older brothers shopping for his birthday gift. And this is how our conversation went.

Cade: Do you know what I want?
Dad: Why don't you tell me?
Cade: I want 6 things cause I'm turning 5
(not sure where that came from but I have learned to never try to figure out the logic of a 4 yr old).
Dad: Tell me something you would like
Cade proceeds to list of the items he saw at the store. And then states, "Dad, I think I should go with you to make sure you don't forget"
Dad: Cade, I won't forget.
Cade: Did you write it down? I think you will forget.
Dad: Cade, I won't forget.
Cade: Maybe you should call me when you get to the store. Do you know our number - it's 972
Dad: Cade, I KNOW our home phone number
Cade: I still think I should go with you.

Needless to say, he stayed home while we shopping. When we go home, he beelined to me and asked "did you get what I told you?"
Dad: I'm not telling you.
Cade: Did you wrap it? What paper did you wrap it in?
Dad: Cade, you are just going to have to wait.

So Tuesday morning, he came down to kitchen to find his presents wrapped on the table - and then had to wait till dinner to open them. But the sheer joy in his face and his gratitude was just a thrill to watch.

As I put him to bed, I told him the story of how he met us and how we brought him home. He listened ever so intently to his story. And I find it hard to believe at times that his precious, curious, funny, stubborn little boy is the same frightened and tired child we brought home 3 1/2 years ago. He is a perfect complement to his brothers. And I love how he talks non-stop when he is alone with you. I love his attention to the smallest detail. I love his hearty laugh while watching a movie. I love watching the innocence in his eyes.

And, as it goes with every birthday for Tucker and for Cade, I say a prayer for his birth mom. I pray for her comfort and peace in knowing that she made the right decision when she chose life for her boy and my son.

Cader-tot - love you so much.

Thursday, October 15, 2009

Titus Playing

Just a few pics of Titus playing today. Thanks to nurse Lisa for taking the pics.

And yes, the boy needs a haircut!

Thursday, October 8, 2009

Back Home

Titus was released this morning and is on his way back home. When we put him the car, he just started jabbering and smiling. He knew he was back in his car seat, back in his car, and headed back home. It was so sweet to hear my boy just babble away and see that huge smile on his face.

Titus' nurse, Lisa, will be at the house today and tomorrow with him and I know that both of them can't wait to see each other. It will be so good tonight to go to sleep with all my boys and my wife back under one roof.

Wednesday, October 7, 2009

Wednesday Morning Update

Titus' breathing is finally starting to sound clear. He had a good night and as it stands today, they will continue with treatments today with the plan to bring him home on Thursday if he continues to sound clear.

Tuesday, October 6, 2009

Tuesday Morning Update

Titus will not be coming home today as we had anticipated. He has shown signs of improvement, but the doctor really wants to be sure before sending him home and have him build up a few reserves. His breathing still sounds a bit course, so another couple of days receiving constant care will be good for him.

Becky stated that Titus really needs to poop. They have upped his Miralax, but he is getting a little cranky (don't we all when we need to . . . ok, maybe that's too personal).

Our prayers today is that his lungs will continue to clear, his body will strengthen, and he will poop. And please pray for Becky - these are long days and nights at the hospital. She is such a blessing to the nurses and RT's. Yesterday, the nurses asked her to talk to another family who has needs very similar to Titus. My amazing wife shows so much grace to all she comes in contact with.

Monday, October 5, 2009

Making Progres

Titus is slowly improving and making progress. His breathing treatments were moved from every 3 hours to every 4 (which is the routine we have at home). If he can maintain, we will more than likely go home tomorrow, but until the doctor states it, we aren't planning on it. His x-rays looked very good this morning.

When I arrived at lunch, Becky said "Say his name." I called out to him before I neared his bed and he turned and started looking for me. As I bent down to rub noses, he smiled, and then lifted his hands to touch my face. That's my precious boy!

And, since Becky has had so much time on her hands at the hospital, she is finally on Facebook. She is learning all the news from her facebook friends!

Sunday, October 4, 2009

Sunday Evening Udate

Titus is showing a little improvement although he had a rough night last night with several de-sats. They have reduced his respiratory treatments from every to two hours to every three, and we hope tomorrow it will go to every 4 (which is the schedule we use at home). His bloodwork looks ok, although his calcium and potassium were high (and usually his potassium is low). His chest x-ray was marked 'unremarkable' meaning nothing out of the ordinary there.

Our dear friend Marti spent the morning with Titus so that Becky could come to church and teach our parenting class. Becky brings so much more practical wisdom to my teaching that I really don't like teaching without here. She then spent the rest of the morning at church volunteering with Tucker and Cade so they could have some Mommy time.

We hope by Tuesday Titus (and Becky) can come home.

Thanks for the prayers and support.

Saturday, October 3, 2009

Hanging Out

Except for his congested breathing, Titus is doing ok. He is very happy and playful when awake and is quite good at grabbing the suction tube and yanking it away when the RT's try to suction him. The pics are a little blurry (since I can't seem to hold my phone steady), but wanted all to see how big he's gotten.
We expect to be down at Medical City for a few more days since the doctors want to observe him closely.
Thanks again for the prayers and support. Your notes of encouragement and prayers are uplifting.

Friday, October 2, 2009

In a Room and Resting

Titus was moved to a room this morning. He has been napping and resting, and is relatively happy when awake. His breathing is still very rough. The doctors want to observe a few days just to see what is going on.

Thanks for the prayers and support - will update more as we know it.

Waiting on a Room

Titus spent the night in a room in the ER. The hospital is packed and as of this morning, he is number 2 on the list waiting for a room on the Pediatric Ward to open up. He had a good night although they kept him on a continuous Xopenex treatment. Becky did not get much sleep though and since they are still in the ER and extremely busy, a respiratory therapist was not available to come by and do CPT, so that was Becky's responsibility.

Will update more as we know it.

Thursday, October 1, 2009

Quick Update

Titus is being admitted for observation tonight. His x-rays and bloodwork look fine, he's not running fever, but his breathing is still very raspy. They will keep him on constant breathing treatments overnight. Becky stated that Titus is happy and content right now.

We will know more tomorrow.

Back to the Hospital

Titus has been improving this week, but tonight, starting showing signs of respiratory distress and his fever spiked. Becky called me on the way home to let me know she was headed to the hospital. When I turned down our street, I saw the ambulance coming and I knew it was headed to our house. At the same time, it just starting pouring buckets of rain.

Becky called and they have him stable in the ambulance on the way to the ER. I'll update more when we know more.

And to top it off, I parked my car in the front of the house since the ambulance had blocked the driveway, and now my car won't start. I just have to laugh - I will not be defeated, I will not be moved, I will count it all joy, my light and momentary troubles are achieving an eternal glory that far outweighs them all.