Saturday, July 31, 2010

Touching Base on Big Kid

Big Kid is finally on the mend again after the latest crisis.

Here is the recap:

3 times in the emergency room in a month. First trip to the ER (he was coughing up blood and couldn't breathe), was down in the city, and he was diagnosed with bronchitis. Even though they had his medical records there on hand (from his H1N1 crisis), they didn't do any swabs, blood tests or apparently scope down his throat. Sent him home with a prescription and told him to follow up with his doctor in 5 days.

Admitted to the hospital twice. First time up here at our small regional medical center, four days after going to the ER in the city, and they actually did tests in the emergency room and discovered he had Mono. And his throat was obstructed from swelling of tonsils, adenoids and lymph nodes. Kept him for a couple of days because he was really sick and couldn't breathe. Sent him home with a bi-pap breathing machine and instructions. Second time we took him down to the hospital in the city, where he got a tonsillectomy to make room for his airway.

So here is the aftermath. LOL

I was with him the day of his surgery. He was so wiped out that he was in a hospital bed with just a face-mask and completely unconscious. From the lack of sleep for 4 days or so, I thought, because he was on no medication except for his psychiatric meds. He was so out of it that he turned over and pulled the IV out of his arm and never felt it. Because he was going into surgery in about 5 hours, the nurses decided to wait until then to replace it.

We had to shake him up several times to get him to respond and sign some papers (one was the Hippa form that said the staff could share his information with me because he was an adult). At that time, I informed the nurse that Big Kid was wearing extended wear lens contacts that needed to be removed before surgery. She wrote down on his chart "lenses removed" and then somebody came in and said the surgeon was on the phone and ready to talk to me. So I went to talk to him about the procedure.

The next day in the ICU, after the surgery, the nurse said to me----"I've been reading his chart and the amount of risperdone (an anti-psychotic the kid takes) seems to be high. Can I go over it with you?"

When the kid was admitted, Hubby brought all of his pill bottles so they could write down his meds and dosages. Turns out the admitting nurse misread the risperdone dose and they were giving him twice what was prescribed. And his original dose was pretty freaking high to begin with. No wonder he was practically comatose!

The day the Big Kid was released, we waited all day for the surgeon to sign off. By 6pm, the staff ascertained that the doctor wasn't even working that day, and the on-call didn't have any orders to check the Kid whatsoever. That evening, at 8pm, on a FRIDAY night, as Hubby was checking the kid out, his nurse said, "by the way, Big Kid has MRSA. Here is a handout about it, and you need to follow-up with your doctor."

WTF? Like our doctor has office hours on the weekend?

MRSA is a antibiotic-resistant staff infection that can be deadly. The handout said that 40% of patients in hospitals catch it and that it is very contagious. It explained that people can get "colonized" with it, but not be "infected". WTF does that mean?

After a weekend of quarantining the kid to his room (such an easy task---NOT!), we went to see the doc on Monday. Yes, he had MRSA in his nose and throat. He also had a urinary tract infection. Joy. Got meds for both.

On Tuesday, it occurred to me that the Kid prolly wasn't seeing too well, and asked him if he needed help in putting in new contacts. He said he was fine.

THEY NEVER REMOVED HIS CONTACTS BEFORE SURGERY! Damnit.

Since the contact lenses were fairly new (in just a couple of weeks, they're 30 day lenses and expensive), we decided to let everything be, since the chance of him rolling them back to the back of his eyeballs while under general anesthetic was practically nil by now.

On Thursday, he woke up with a major oozing infection in both eyes. gah!

During this time, with all the test results, etc, it became clear that Big Kid simply cannot stay up here in our home for extended periods until his lung problems sort themselves out, if they ever do, because of the high altitude. Kitty's home, which is actually her mother-in-law's home, is not a safe place for his breathing issues because of a long-term mold problem (also, the MIL had a cat that has since died that pissed all over everything and no matter what Kitty has tried you can't get the stank out of unsealed hardwood floors unless you sand them down and seal them).

I'm NOT going to co-sign another lease for him in an apartment after the last fiasco, and we simply can't afford to buy a house or anything like that for him.

So we purchased a mobile home in a very nice park where Kitty's parents have lived for the past 25 years. During the last week we've had a crew in there customizing it for his needs (blowing the air system out, tearing out the carpet and replacing it with tile, painting, etc). It's a lot closer than Kitty's house was, so we can get there within 30 minutes if he needs us.

Kitty is going to close down the house and move with him.

We're also in the process of having an assisted-living person come in and help him when she has to work. He can't be home alone for more than a few hours at a time.

I'm just heartbroken to say that our family doc and Big Kid's Neuro-psych don't feel like he's capable of making any medical or financial decisions on his own, due to the damage incurred by oxygen deprivation to his brain.

This is something we're going to have to be thinking hard about.

23 comments:

Donda said...

I am in shock at the poor hospital care. I have never heard of so many different screw-ups with the same person.

Selma said...

My heart is breaking for you as I read this. I also cannot fathom the incompetence. How are you managing to hold up? You are an inspiration with your strength and courage. Needless to say you and Big Kid and your entire family are in my prayers and thoughts. I am so sorry you are going through all this XX

Kim Ayres said...

((hugs))

TechnoBabe said...

Thank goodness you are in the position to get the mobile home and get it prepared for his needs. Reading you posts prove to hubby and me over and over we are right to have no faith in the medical establishment.

gayle said...

It is scary to hear of all the mistakes!! Glad you are able to get a mobile home for your son!!

Jennifer Jayhawk said...

This whole mess just breaks my heart. It is just stunning the mistakes that have been made.

Sending a big ((HUG))

KWombles said...

((())) I'm thinking of you and yours.

I can't believe the hospital didn't begin treating the MRSA while he was in the hospital. There are standards of care on that. And that's just the tip of your iceberg, I know. So very infuriating!

Rootietoot said...

ayiyi.Oy...and other stuff like that. You're my hero, right...

Pete said...

(((((attila)))))

Jeanie said...

Your baby steps have turned into big steps. Once he is stabilized medically I wish you all the best toward getting BK's life (and yours) on a more even keel.

Brenda said...

Whew! I admire your ability to keep your sanity!

Bonnie said...

'Colonized' is what Tyhoid Mary was: carried the bacteria/infectious agent, but wasn't actually ill with it. 'Infected' is when you actually get sick (have symptoms).
MRSA is pretty ubiquitous nowadays, sadly. Hopefully it won't cause him any problems.

Is he getting any kind of therapy to combat the brain damage?

Attila The Mom said...

Bonnie---yes. He's receiving physical and occupational therapies weekly. He also had just started cognitive therapy right before this round of illness. We're planning on picking it up again now that he's better. Thanks for stopping by!

Star said...

You guys just can't catch a break. You have amazing strength.

Joanna Jenkins said...

I yiyi Attila.

First, I am so sorry ANY of this has happened. You've all had way more than your share of medical issues. Enough already.

And second-- the level of incompetence at the hospital is scary. Thank god you are as proactive as you are and looking out for Big Kid.

Hang in there my friend. I'm still praying and cheering you on.

xo jj

Anonymous said...

God Bless Kitty. Its a lovely miracle that they found each other to love.

Katie :o) said...

WOW!!! Just a little bit going on for you! I don't know how you keep it all together... Much less write such a witty, inspiring and entertaining blog. Wishing you and Big Kid (and the rest of the family) some breathe-easy sleep.

Cheryl said...

I just can't believe how people keep making huge mistakes, huge hurdles keep getting thrown at your feet and all the insensitive and incompetent people that have come into your life since Big Kid got sick. This whole thing is a horrible nightmare and I'm praying that this recent solution will work out for him. He must be so frustrated and confused. I'm so sorry for you, your family and for Big Kid. I hope now he can start getting his therapies on a regular basis and there are no more life threatening crisises to have to deal with. My wish for you is that life can get back to as close to normal as possible. For all of you.
Love you.
Cheryl

Chris H said...

It's like a never ending nightmare for you poor buggers! {{{HUGS}}}

Ashley's Mom said...

My son just left the hospital and I feel your (and his) pain.

About not being able to make medical decisions - read my posts about the choice I made for my oldest (adult) daughter. It's just one point of view, but like you, I had a really, really tough time accepting that my child couldn't make decisions on her own.

Ashley's Mom said...

Oops, forgot to leave you the link to my posts:

http://pipecleanerdreams.blogspot.com/2009/03/someone-to-watch-over-me-follow-up-part_24.html

Big Pissy said...

It amazes me how wonderfully you handle everything that's thrown at you.

{{{hugs}}}

Joe said...

On an aside, I take risperdone for my stutter. And that I'm crazy. It does help the stutter and I guess it makes me less crazy. It has helped me pack on an unwanted 50 pounds since I started taking it, which I'm not too happy about.