Thursday, February 7, 2008

Your Prayers Worked :-)


Now Charlie did have a good night but I'd like to know who of you out there prayed that they would keep him loaded/snowed, because it worked? We were very fortunate to have a super RN (Sue) last night and was very proactive in medicating the storm at the earliest signs so that he wouldn't get so wound up. This morning has been pretty mellow, he had one "Mini" storm but it only lasted about 20 min. Angel and I had our 1st "Care Conference" w/ the PICU staff. We had kind of prepared ourselves to hear the absolute worst case information. My dear sweet bride in true Wife/Mom list making fashion had a litany of questions that would make a Mensa cringe and for the first time I was grateful for it. Generally I abhor anything that even looks like a list because the way I see it a list from the wife isn't a group of things that could be accomplished it's merely a plethora of ways that you can fail to meet expectations because you didn't do it in the order/way that you should have. BUT... in this case her list of questions had the Doc's spewing way more info and answers than we thought we'd get. Here's the nitty gritty. GOOD: 1. His survival rate at this point is very high. 2. They also expect these storms to subside w/ time. 3. His brain stem appears, from his last MRI, to be in good shape. 4. No recent seizures. 5. His brain is only 9 mo. old and still has some maturing to do. 6. Lastly he's not nearly as rigid and the Rx's seem to be managing things. BAD: 1. He's had his egg scrambled pretty good and he isn't improving neurologically and isn't alert. That is the Neurologist's biggest concern. 2. His healthy brain stem doesn't match his clinical picture. 3. His breathing is still pretty labored and no real cough or gag reflex and a tracheotomy is still on the table. 4. From his MRI it is most likely that his damage is in the areas of the brain that control motor functions, cognition, speech and the overall communication of both sides of the brain. 5. A "G" tube so that he can feed himself is in his near future. 6. Wheelchairs, walkers and Mini-vans are all strong possibilities. 7. He will be at increased risk for pneumonia and respiratory infections for the rest of his life. 8. There is a high likelihood that while he'll be able to understand things he won't be able to interact or express himself. 9. "We just don't know" and "Time will tell"
We will continue to hope and pray and we urge you to do the same. Any of you that have come to see Charlie know how hard he is fighting and that he's not going to give up and I'll be damned if I will.

18 comments:

Meghan said...

he IS a fighter. this is actually better than i was expecting. he's gonna be a champ and we are all going to watch it over the next several months. i really believe he is here to be a teacher to all of us. i love him. keep fighting coop, and we'll keep cheering you on.

so when do you want to go shopping for matching minivans? ;)

Anonymous said...

A mini-van transformer? I can see Brit right now with his super crew riding on the chair lift! Go Power Rangers Go!

Shani said...

"Do miracles cease to exist? I say unto you, nay."

chili said...

ROB...I'm just damned proud of you! I'm proud of who you are, and I'm proud of who I am in large part because of you.

Just a Mom said...

Our little family prayed for you last night and we will in the days to come. Hang in there little Charlie - you have a battalion of people behind you. People who you have not met and do not know but who have pulled you into their hearts.

bshort said...

GOOD: 1. His survival rate at this point is very high.

This is the most important of all.

linds said...

keep fighting charlie, we are so proud of you!

Ali said...

I know you don't me well, but I am Meghans friend Ali. My daughter Sarah is 8 months old and I can only imagine what you two are going through right now. Just know that Charlie is in our prayers and many others! I believe that miracles happen and we keep praying for more for Charlie!

aubrey said...

so it is true miracles do happen

Anonymous said...

NEVER GIVE UP!!!!! Charlie is a fighter and he has the love and support of a large loving family. Prayers are answered in mysterious ways!

Megan said...

That's right, you guys don't give up. Charlie has fought too hard!

I know that every patient is different....but just know Alyvia had damage to her brainstem and was neurologicaly a mess! The doctors kept saying she had damage and they didn't know if she would EVER recover...I got SO sick of hearing that.

Just don't give up! Alyvia is doing 100X better now, she is not "slow," in fact she passed all her recent evaluations (that she wasn't able to pass when we first got home.) She is up to par now, and where she needs to be. (altough we are still working on the potty training thing!!)

Just give Charlie time, kids brains are so resilient, they can recover from something that you or I never could. And more importantly I know Heaven is full of prayers for little Charlie, and I know Heavenly Father is hearing those prayers. Charlie is such a a special little boy, he has touched so many hearts, including my own.

seanteyatroy said...

I second Shani's comment....and Megan's comment....keep having faith and believing in miracles...that thinker of his is from good stock...Love you guys.

seanteyatroy said...
This comment has been removed by the author.
Anonymous said...

You don't know me, but my now 6 year old daughter had hundreds of seizures during her first two years of life. She had a swollen brain at the age of 13 weeks. The docs told us they were unsure if she would be able to walk, talk, etc. But our favorite and wonderful neurologist told us that children's brains continue to develop and repair itself until the age of 2.

Never give up hope. Charlie is a fighter and you guys are great parents. He is being prayed for by a large group of people in NW Pennsylvania. Prayers are powerful.

Remember to take care of yourselves too.

Anonymous said...

Ooops....forgot to tell you that our 6 year old is now a normal, happy, fully functioning kindergartner.

Anonymous said...

I'm Max (Mini Max's namesake) and Doug's (Ty's work bud in Phoenix)Mom. I've been following Charlie's amazing journey since the beginning and I want to express to you both how much my thoughts and admiration are with your family. You are obviously loving, and so strongly bound as a family that I am confident you will find your way through the haze. I am sure you have already discovered that when the need presents itself,as parents we do have the strength to dig down to the deepest core of our being to navigate what we once thought was "unimaginable" let alone "doable". And, you have Charlie on your side, he has already proven how strong he is!

Warmly,
Danielle Turner

Anonymous said...

Hey Rob and Angel,
It is so good to hear possibilities and what may come. Especially the one of him surviving. Remember that our heavenly father is our father and coopers too. And with the amount of prayers he is receiving at this time for cooper he will do what is right for him and for you guys. You both have amazing faith and love that I feel when I read from this blog. Remember that the doctors only give you possibilities because we are working on a miracle now. We pray for you every night.
When cassie comes home she asks about the baby. In a blunt loveing way she says is baby dead. Now I can tell her no He is in very good hands second only to his moms hands that is our heavenly father or his gardian angel. We love you guys and would love to do more than pray and fast for you so let us know what you need. Love Greg and family

Anonymous said...

I don't really know what to say except to "ditto" all the previous blogs. I know that as a parent we find ways to fulfill the toughest situations. As has been mentioned: you are both from tough, strong stock.

You have a wonderful support system and the blessings of many angels watching over you.

My dad was a Charlie and he was a tough guy who played for the NY Giants. My Grandpa was a tough old bird and his name is Charlie. It is a strong name and carries with it a STRONG tough legacy. Those two will not see you fail and add Marion to that and you have one heck of pull on the other side.

After seeing Charlie, I know he has it in him and I also know medical science can be stumped and the outcome can suprise everyone. He is tough and blessed and he will serve his mission here on earth and in many ways he already has.

Love you, Jill b

Ps... Glad you are safe Marilee.
Bryan is home and has lost 40 pounds.