Tuesday, Jan 5, 2010
January 5th, 2010 Posted in Daily News PostAfter the worst day that I’ve seen, Chloe and Dana were able to sleep pretty well until about 5:30 this morning. Sandy stood the ugly watch all night. Then things started happening. Chloe just couldn’t get comfortable with her breathing. It was suction after suction and, at one point, she was getting pretty distressed. The trach she has in now is a little bit smaller in diameter and she is producing quite a bit of gunk. The two things can work against each other.
She went through PT/OT and speech today and it was intense. She was pretty wiped out by the time she returned to the room. She wasn’t able to see her computer keyboard enough today to us it during speech. Her eyes have been jumping all day. Probably a bit of fatigue and maybe some due to yesterday. At noon I arrived to a roomful of sleeping people. I spent the next hour quietly preparing for the 1:30 weekly meeting.
At the meeting we discussed the previous day and how to prevent a repeat of the horror we faced. It was agreed that, at the very least, Dr. Cyler would be there to do the next trach. He may even take a look at the vocal cords at the same time. Also mentioned was… discharge plans. Dana froze. The first thing out of her mouth, as she started to really choke up, was “I can’t take care of her at home.” There is no way if we have to bring her home with a ventilator and all the other requirements of same, that we could take care of her and have any life at all. It just wouldn’t happen.
What do we do then? We focus on Chloe going home well and able to take care of herself. It’s what we all want so why not make it a reality. The other reality, however, is that insurance is running thin for rehab. We have until the end of the month with this insurance company. It will then be up to SSI if Dana qualifies and it can get pushed through in time.
We ran over to SSI today to see about signing her up to get state insurance. That would enable us to keep Chloe in rehab until she doesn’t need it anymore. So if anyone out there has contacts in high places in SSI we need this pushed through.
It was an interesting time at the SSI office waiting room. I had to step out to handle something with Dana’s unemployment on my cell phone. The guard came out into the alcove with me to receive a call. Just then I noticed a woman with four small kids go into the bathroom and the next thing I saw was Dana jumping up, banging on the door and yelling that she is beating her kids. She couldn’t get into the bathroom to stop it but she sure made enough noise that the door opened and she stopped the abuse. Dana just said “Please don’t beat him.” About that time the guard reached her and wanted to know what she had seen. He needed an eyewitness to do anything. Unfortunately Dana just heard the abuse. When the woman came out Dana, being the Dana she is, offered to play with her kids so they would be out of her hair until they left. She wasn’t taken up on the offer.
Dana later said she often wondered if she would be the one person to act in this type of situation. Would she be the one who played the fool amongst others in order to save a kid. She answered that today and very well. No one else got involved although the blows were very audible in the waiting room. Neither the guard nor I could hear them where we were but we sure heard Dana.
Later the guard advised us that he had flagged their account as possible child abuse and that someone would certainly look into it. It was some gratification after that ordeal. Dana’s on the edge so anyone stepping over a boundary or value better be ready to suffer the consequences.
Back at the hospital Chloe was able to enjoy Dawn and her guitar. Dawn sings her some great songs. Another visitor was Jake the golden retriever and Patty. This is a visit that ALWAYS lights her up.
One very good thing about the human body and mind is that it tends to protect us from very unpleasant events. Chloe can’t remember anything about the trauma of the afternoon yesterday. This is such a blessing.
An email came to me early this morning from Dana. It seems Colin is going into the solo singing circle. www.singingplace.com features Colin singing, “I’m Yours”. It’s a fun watch and a hard one to sing all by yourself. Kudos to Colin for putting himself out there like that.
The word came down from Dr. Shih this after noon that Chloe would be allowed to suck on a lollypop as long as she didn’t bite it. So, Dana and I stopped at Walgreens and found one of only two packs of Dumb Dumb’s pops, the ones she requested. They usually don’t carry these except at Halloween. So there’s another blockade that Chloe knocked down.
Everyone is winding down from the day now. Chloe has her Ipod, and the rest of us are on our laptops. The movie night was fun tonight with Dana and Chloe in bed together. Chloe had her sucker and Dana had her Hot Tamales. We took pictures and will try to get them on the blog soon.
The mind tends to fade after a huge lack of sleep so these blogs are getting a bit out of order and I’m sure I’m forgetting things. It’s a challenge that seems to be a low priority right now.
Thanks for all the comments on the blog and facebook. They are fun and uplifting.
Be well,
Ron
52 Responses to “Tuesday, Jan 5, 2010”
By Rev. Barbara on Jan 6, 2010
Continued prayers as always, knowing that Chloe has the strength of many bulls – and that aint no BULL!
By Kevin and Laura on Jan 6, 2010
Dana:
We’re all admiring your assertiveness with the abusive woman, hope they were only spankings, and reckon they were not.
Colin is great in the music video and he picked the perfect song.
Have a better day today.
Namaste,
Laura
By dana watts on Jan 6, 2010
Colin knows the song, I’m Yours was first heard here at Legacy hospital one day while Chloe was in PICU June 2008. I heard a young man in the hallway singing it and I tried ‘sneaking’ him into PICU to sing it to her. It became a theme song then…my nephew Jeremy found the name of song/artist and sent me the lyrics. I think Colin is working out his ‘stuff’ about Chloe….in a really positive way, as is his style.
The angry woman at SSI just needs some parenting skillls for coping , I suspect and especially in private as in public she was out of control.
I’ve never beaten on a door so hard in my life. I think it was a scene and as I journaled it later it occured to me that I was in fact the type of person who would interfere/interupt something which could backlash badly and do so without fear.
Again, this is discovering a new aspect of self. One which was there all along, just hadnt gone into ‘action’ mode yet.
The little boy, Jaden (about 3 yrs old)was beautiful and I sent him a wish to grow up wise despite his mothers lack of skills.
By Regina on Jan 6, 2010
Dana, I knew you would be the type to step in. Its a quality we all share, my mom, you , me. . . .
Ill be there with you all soon. Jan 18th
By linda on Jan 6, 2010
Dana,
you continue to be so thoughtful of others even in the great time of chaos in your own life, you are truly an amazing light that shines vibrantly on others and definately on Chloe.
Know that are hearts are prayers are with you all and seeing chloe healed.
Ron great job on your writing,,,,,,,,maybe a book?
By Sarah Koch on Jan 6, 2010
Way to go, Dana!
And Colin: I heard / watched your video. Impressive. You inherited a lot of musical talent. Please keep us updated on what comes of your call out for band mates. Oh — and love the hat.
Yes, Ron, I’ve been wondering too if you might choose turn all this experience into a book. Have you considered that? If I can help in any way, let me know. (I am an editor, etc.)
Sarah K.
By Kat on Jan 6, 2010
I agree with Regina, Dana you couldn’t sit back and watch a child, woman, animal, etc being mistreated in any way. How could one walk away from that and feel “good” about themselves. Thank you for helping that child and maybe others in that bathroom.
I also agree that it would seem to be too soon to have Chloe home and have only family to care for her. Seems there is so much to know and learn, that maybe they could set a time frame which you are comfortable with and give you many lessons and chances to feel “ok” with doing some at home. Good job standing your ground on your fears and what you felt is best for your child !!
I am so bad with looking things up on the computer that i wasn’t able to find Colin’s song. I found only sites that………..well, this is a family site so won’t go there. {and i didn’t either, lol}
So proud of both your kids and how they respond to the not so good things in life. Life is a journey and we choose to learn and cope the best way for US.
Love and prayers~
By Erika Collins on Jan 6, 2010
Dear Dana,
Your strength is limitless even though I know this is the most difficult climb. I think of you daily and your mother love. Chloe’s journey and Ron’s telling of it is an awesome message to us all to appreciate the moment. I would wrap you all in a cloak of love (and not to embarrass you, Colin, but that includes you!).
By Supermanj on Jan 6, 2010
Kat I will send you the link.
Dana, you aren’t just a mama lion for Chloe, but a MAMA LION FOR ALL.
Everyone sleep peacefully tonight..Chloe, OT and PT and speech will be there early….Give them your best. WE LOVE YOU.
By Daniel Johnson on Jan 6, 2010
Ron YOU are an amazing person and I am more than a little impressed by you for ALL you do. Chloe and Dana are very lucky to have you in their lives and they both know this. This past year you have officially become a part of my small but growing list of heroes !!!
Chloe, I hope you are ok with the job I did on the video. I will try to do a better one later this week. Not so good with new programs so I will get better at this. YOU make me belive in a lot of things.
Colin has become my new American Idol singing one of the songs that I have come to love a lot and doing VERY well. I wish I could sing half that good.
Dana, remember your blessings all around you but even more remember those of us that feel blesses to know you! Mama Lion, for sure, angle walking the earth, no doubt in my mind!!
Lots of love and light to you all!
By Cherie on Jan 8, 2010
I just watched the website with Colin singing I’m yours. I had to watch it twice, you are an amazing talented boy Colin. For such a young person to be able to do a viedo with such heart and ability in inspiriing in of itself, take a bow Colin you rock. Of course I do know that your whole family is so very musically creative and talented. Such wonderful family deserves more angels watching over them. As our earth angel Dana watches over all children and protects them, even more angels and ready and willing to be with all of you. You do attrach what you give protection, love, abundance, and healing be yours. Dana you have paid it forward to four children, who needed those very things in their lives. I pray they (including the mother) will all recieve the help they are all crying out for. Just knowing that ther are people who won’t stand by and let those love cry out, and do nothing. You answered love’ cry for help and stood up to be a friend nonthe less to the offender and to the offended with such a big heart and roar that it was heard. The world out here just like an audience on a talent show, on a reality show about Chloe and her amazing family applaud so reverently with tears in their eyes. Someone pass the kleenix I’m leaking again. Sometimes after each paragraph Ron writes on the blog I stop to pray. My altar has a special candle I light as I pray, and I look into the face of the angel who has her head cast down at me and her hands crossed over her heart, and there is a faint smile on her face as if to say I hear you and you are blessed with all that you ask. As I pray I have my head down and my hands crossed over my heart, and I know I am heard and all that I pray for will come to be, and that faint smile comes to me. Tonight when I prayed as described my dog came to sit on my lap, and my cat came behind me walked around us and sat beside me and purred, as I said Amen.
Thank You for all the hard work you are all doing. Hope you hear the lullabys I sing to you at night and sleep better too.
Always Love Cherie