Memorial Weekend

We played it safe and decided to spend some family "down time" at home post-hospital stay. We got Braden a baby pool - it's a frog, of course. He seems adverse to the initial introduction of the "new sensation"... but after he got used to it, he seemed to adjust very well and even enjoy it. I think the initial feeling of floating is a little scary for him at first, but then he seems to enjoy the freedom of floating and letting his legs relax in the water. Mommy splashed around with him a good bit, and even dared to "dunk" the little guy. He kept his mouth wide open of course, so mommy had to give him some good back pats to get him to spit out the water. Daddy thought it was mean - but Mommy said we won't know how he will react or be able to teach him if we never do it. I think we'll wait another year before trying that one again, though.

Daddy spent time teaching Braden how to float on his back and playing with him like he was a little boat in th water - it was lots of fun for both.

Thanks for all your recent prayers and notes of support. We are just reveling in every moment we are blessed to have Braden in our lives, and we thank you for being a part of that. We hope you enjoy the pics!

Love -
K, B & B

We are home

We want to thank everyone who has lifted us up in prayer. After discussing Braden's quick recovery and resiliance with his intensivist and nurses - they shared with us that when we brought him in last Friday, that his outlook was not good and they were not sure if Braden would make it. The whole staff at OLOL is amazed that Braden came off life support so quickly, and seemed to rebound with such ease, considering all that the little guy went through just on day one!

We thank God for every day He allows us to watch over the little angel He has sent to us. We know that Braden does not belong to us, and God has appointed us as his earthly guardians, and we feel so very blessed and thankful for that!! Braden has a truly awesome fighting spirit, and I have already learned so much from him. Now at home he is feeling a lot better, and is actually awake several hours throughout the day, as he explores all of his world by contantly looking all around. He is so beautiful - we think he looks like a little cherub!!

Daddy is trying to teach Braden how to relax... hence the photo:-)

We follow-up with the pediatrician this coming Friday, and the surgeon the following week... we have decided that given Braden's rough medical history of trying to get IV access, we will be putting in a medi-port later this summer. We have weighed the risks, and feel the benefits far outweigh them given his situation. We will keep you posted on that schedule, so we can ask for extra prayers, as it will be an overnight procedure and stay.

Thanks a million for your prayers - who knows where we would be without them.

Love to everyone!!

Kodi, Brad, & Braden

Leaving the hospital sometime soon...

Well, we have been moved to the floor, and that's always a sign that you are closer to going home, as you don't need as much constant attention. The downside is that you don't get any breaks, as a guardian must be with the child 24-7, so it wears on you just as much as being in the ICU. The ICU stress is more emotional, and the floor stress is more physical.

Braden has made a quick recovery considering he was on life-support nearly three days ago. He has amazed everyone here with his resiliance and fighting spirit. When the doctors and nurses tell you how worried about him they were his first day here - you know that your child was not in a good place, and God has blessed the hands of those who care for him to find solutions that Braden would respond to.

Here is a picture of him in his room on the floor, resting comforably with "Tiggie" at his side as always. You can't see his glow-worm, but she is in the bed with him too - he just loves how the face lights up and it sings to him - he seems fascinated every time.

Thanks for the prayers and support - we appreciate you taking the time to leave notes on the blog for us. It really does lift our spirits to know that so many people out there are pulling for Braden and for all of us.

Kodi, Brad, Braden

Mother's Day in the PICU

Well, it is my second mother's day to spend with my son in the hospital... I wonder if I need to put in a reservation now for next year:-) Braden gave mommy his FIRST TOOTH!!! one on the bottom finally broke through, and we are pretty excited about it. He is now off the temp blanket, off the catheter, and they are trying to wean him off the ventilator later today or tomorrow morning. It will be a great Mother's Day gift to be able to hold him again. The chest tube they will try to take out once he proves he can breathe on his own, and his lungs hold up on their own too. Dr. Thomas says those trouble spots we were worried about have cleared up on their own, and his lungs are looking pretty good overall too... we are still waiting to figure out what exactly the "bug" is that is growing in his cultures.

I wish all mom's out there a happy mother's day... and if you know anyone with a special needs child, I invite you to share the following by Erma Bombeck:

HOW GOD SELECTS THE MOTHER FOR THE LESS-THAN-PERFECT CHILD
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint Matthew."

"Forrest, Marjorie, daughter, Patron Saint Cecilia."

"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy."

"Exactly", smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she the patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in You."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect."

"She does not realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

Happy Mother's Day to all of you...
K, B, &B

Surgeries, Pnuemonia, and life in the PICU

Braden was not responding to our normal ways of calming him, so daddy took him to the pediatrician yesterday when he was not doing well. After a phone consult with the pulmonologist and Braden's lack of good response to oxygen, we got him directly admitted into the PICU, by-passing the ER. They had to work quickly on him, as his body started shutting down. After over 10 sticks and no luck getting an IV, they did bedside surgery to put in a central line. Braden had practically no blood pressure, and had to be put on a ventilator, as his body was too fatigued to work on it's own. He was practically blue head to toe by the time I joined them in the PICU, and there was no good news. He had no urinary kidney output, his potassium levels were off, and was not responding to initial doses of fluids.

Braden's blood counts were extremely escalated, his heart rate was really high, his temperature was remaining above 106, and he was not stable by any means. After a few hours of placement on a heating/cooling bed to control his temperature, he had come down to 102. All chest x-rays did not show anything amiss, until after the central line was put in near the right clavicle. Another x-ray showed the central line had flipped the wrong way, and so they took him into surgery to correct it. While there, they were unable to fix it, lost the line, and had to put in a second clavicle central line in the left side for IV access. They also gave him a femoral arterial line near the groin for a second point of IV access.

Another x-ray post-op showed his right lung was 30 percent collapsed due to problems with the central line. At this point it was about 6pm on Friday evening... but his oxygenation was coming under control, his kidneys began to function, and some progress had been made on his temp and heart rate. They did an EEG to ensure he was not in a state of continuous seizure activity, and that a lot of the time, he actually is having normal brain activity - which means his meds are probably working (praise God!!).

Once a second post-op x-ray was done, it showed that although Braden was maintaining proper oxygen levels, his lung had collapsed to 65 percent. The surgeon came bedside to do another surgical procedure to put in a chest tube. The chest tube pulls out the extra air outside the lung that was forcing it to collapse - correcting correct pressure in the lung. The lung has since re-inflated, but it has not been without some consequence. The pulmonary specialist believes there may be a few trouble spots due to the collapse, but we will keep monitoring it. (They have done at least 5 x-rays since we have been here) and continue to take films every 4 or 5 hours. The latest x-ray shows that he probably has a severe form of pnuemonia, but it takes time to show up on films, so we can't say for sure - but it is suspected.

We finally got his temp and heart rate stable around 11:30 last night, and had a pretty good night. They have started to give him some formula (small, small amounts) today, and we probably won't change much today to keep him stable. Tomorrow we may see how he will do off the heating/cooling blanket, and they may even consider taking him off the ventilator, but Braden is driving this train, and it's all up to him and his levels of progress.

We will try to post each day we are here - but no promises. I have attached a pic with arrows pointing to the various function of the tubes. Please keep our awesome little fighter in your prayers - he has really been through it in a rough way the past two days. Thanks for stopping by,
Kodi, Brad, Braden

Birthday Party

Gram, Papa, aunt Shala, cousin Paxton, and even cowgirl made it down from KS to celebrate an incredible first year with us. We had many things to celebrate... Braden's victory over still-birth, a near-death pnuemonia, and more... what a fighter he is, and we wanted to celebrate the amazing life of this little guy in a special way. We had a crawfish and shrimp boil (our first to host), and many friends came to join us for the day. Braden was having the day his way, and was struggling with his temp and heart rate - but many got to see first-hand what every day is like for us, and I think that was a good thing:-)

Paxton is just in-love with her little cousin, and is such the protector of him. She even feeds her baby the way Braden gets fed in his tummy tube, and gives the baby "breathing treatments" too... so fun to have them with us down here in the south!

Thanks to all those who have sent cards, notes, gifts, and especially to those who joined us for the festivities - our first birthday memories will be so special.

K,B,B