A Summer Cold...

This past Friday, Jackson started with a runny nose.  By Sunday afternoon, there was a full fledge hacking cough and a bit of a wheeze.  Since then his respiratory status has gone downhill.  So a few days ago we dragged out the nebulizer and have been steadily increasing nebs in hopes of avoid another round of steroids.  We'll be visiting Dr. M sometime today to get our just-in-case-prescription of Prednisone.  With any luck we won't need it.

If I only paid attention in Molecular Biology....

Oh wait, I didn't take molecular biology. Well that would explain why I am at a loss looking at Jackson's lab results. Earlier this week it occurred to me that it might be helpful to have a copy of his testing. Helpful if I was a molecular biologist.

Don't get me wrong, I can interpret the report fine, it is interpreting the interpretation I am having trouble with. Our dear Pediatrician warned me "don't freak out" and "don't over analyze them" when she gave them to me. She knew well enough that as soon as I got the chance I'd be all over the internet trying to put the pieces together. (I can't help it.)

And that's precisely what I did. After scouring the internet for information regarding any results reported at abnormal levels, I am even more confused than I was before. But what was I supposed to do? Just wait? No way. It is not in my nature to just sit back and wait for someone else to solve my problem. Not happening. Especially when the doctors all told me all results were normal. That's the part that really makes me flip out. No one, not one of the doctors, mentioned anything about any results being reported as abnormal. Now, I can understand not thinking it necessary to go over every little result reported, but it might be wise to disclose those results which are questionable. I don't think any of the doctors were negligent in this case, however why not disclose abnormal results? It doesn't mean there is a diagnosis, it just means there is something else to watch for. Maybe repeat the testing in 3 - 6 months. I don't know. But I don't know because no one has informed me. And that's the part that makes me want to scream.

On another battlefront, our therapists from the Infants and Toddlers program have disagreed with Dr. Lipkin's recommendation for weekly physical and speech therapy. Not to discount any one's input, but now what? During my conversation with our Pediatrician Dr. M, I spoke of this and she was adamant that he receives the weekly therapy as suggested. Physical challenges and learning disabilities abound, the severity of both yet to be determined. Both Dr. M and Dr. Lipkin have made it clear that Jackson will struggle with these difficulties throughout his life. A revelation that has suddenly become difficult for me to bear.

A long visit with Kennedy Krieger

So it seems that the long wait we encountered for Jackson's appointment at Kennedy Krieger was just a preview of the long visit we were to have. Friday, July 6th we saw Dr. Lipkin, a Developmental Pediatrician at the Kennedy Krieger Institute. Five long hours of questions and answers and loads of developmental testing ensued. After quietly deliberating with several colleagues, the diagnosis was Hypotonia and a Speech and Language Impairment. Yes, five hours later and two somewhat insignificant conclusions.

The difference is now there are official diagnosis, albeit vague and still inconclusive. There is still a great deal of questions as to whether or not there is a bigger issues, most suspect there is, and what exactly that bigger issue is exactly. (The thought is a Neuro-Musclar disorder?) In the meanwhile, Dr. Lipkin has called for more intensive Physical Therapy as well as Speech and Language Therapy. Once a week each. Preferably at KKI. Hmmm. That makes for a few more trips downtown.

Sorry to be so brief, but we are on vacation in Colorado and that's really what I want do. Be on vacation. Lots to be dealt with when we return, but until then, it can wait.

To read more about Hypotonia visit: http://www.ninds.nih.gov/disorders/hypotonia/hypotonia.htm

2 weeks away and a car full of luggage...

Today we leave for a week long stay at my parents in Kentucky. I was up late last night packing everything but the kitchen sink. Feeding pump, a case of formula, nebulizer, feeding bags, meds, diapers, extension tubes, an extra mickey tube (Jackson's button), syringes of all sizes, extra blankies and a few toys for the car ride - and all of that is just for Jack. The rest of us have become remarkably easy to pack for.

Jackson has an Occupational Therapy appointment this afternoon, after which we'll load up the car and hit the road. Seven to eight hours later we'll unload and unpack. Thursday we come home for a two day stay just to turn around on Saturday and do the whole thing over again, this time on a plane to Colorado.

All the arrangements have been made that can be made. For our journey to Colorado we have printed up directions from the airport to the resort, the resort to the hospital, and the airport to the hospital. With any luck we'll only need the route to the resort. Jackson is still pox free as of this moment and let's hope he stays that way.

During our two day reprieve between trips, Jason will be working both days and Jackson will see the developmental pediatrician at Kennedy Krieger. I don't even know what to expect at this visit. I know there will be some developmental testing, but other than that I suspect it will be the usual round of questions and answers, followed by another diagnosis of "lets-wait-and-see". If time allows, I'll update the blog after the visit.

Here's to vacation! Happy summer everyone.

Houston We Have a Problem, Part II

Thursday evening, after dinner was finished and the dishes were cleared, Ainsley turned to me and said,  "Mommy, these bumps on my face itch".   Um what?  I pull her into the light and take a good look at the bumps on her face.  Hmmmm. Definitely suspicious.  Oh no.  It couldn't be chicken pox, could it?

The next morning, a few more spots have arrived.  A message left at the Pediatrician's office and a phone call back from one of the other doctors in the practice produces the following 

conversation.

"What's wrong with her?" she asks.

"I suspect, she has the chicken pox." I answer grimly.

"Oh.  Well, it will likely take 5-7 days for them to fully present.  Just try to keep her from scratching them.  Otherwise she'll be fine.  The only people who are really susceptible to the chicken pox are those who have been on high doses of steroids."  she informs me.

"You mean like her brother?"  I ask, as my heart literally skipped a beat.

"Oh, you mean her brother has been on steroids?"  she inquired.

"Yes, Jackson has been on steroids all week"  I say.

"Is this Mrs. Bender?" she replies.

"Yes."

"Oh no."  she says with a sigh.  Then she goes on to say, "You need to watch Jackson very carefully.  If you see one spot, you have to call us immediately.  He'll need to go to Hopkins for a Gamma Gobulin injection."

I am in complete disbelief.  It is just the chicken pox.  What in the world could he need an injection for?  

A short time later our own Pediatrician calls and confirms what her colleague said earlier.  He will need an injection if he shows any symptoms.  With the fear that Jackson's reaction will be worst case scenario, the injection will fight the virus for him, sparing his body the fight.  However, she also informs me that the incubation period for chicken pox is typically 10-21 days.  My mind reels as my calendar pops up in my head.  

Oh no.  So just about the time we are to be on vacation in either Kentucky or Colorado, Jackson will likely be in the midst of a chicken pox outbreak.  I ask Dr. M if this is a problem. Her response was a quick and deadly yes. 

So now I have made multiple calls to the various children's hospitals in Colorado and my Mother to her doctor friends in Kentucky.  The only one in Colorado that carries Gamma Gobulin injections is in Denver.  Calls abound.  Requests for letters and copies of records to travel with to ease the ER visit, if necessary.  

With any luck, he won't get it.  But the odds aren't in our favor.  So with any luck, we'll catch it early, get the injection, and move on.

Keep your fingers crossed.  I know I am.

Houston We Have a Problem, Part I

There have been so many events to blog about this past week, that not only am I behind in my blogging duties, but I hardly know where to begin.

About a week ago Jackson started with a runny nose and a cough.  By Tuesday of this past week, his breathing was labored and we paid a visit to our pediatrician.  So with nebulizer treatments every four hours and hefty doses of Prednisone, we weathered the storm and avoided the hospital.

During our visit to the Pediatrician's office the staff dropped a bomb on us.  As of August 1st their office will no longer accept our health insurance.  I was completed stunned.  As I waited in the exam room my head was spinning.  What were we going to do?  Michele came in the room with her usually bright smile.  The instant she started talking my eyes welled up with tears.  I told her what the staff had relayed to me and her face went blank.  She wasn't aware we were on the "list".  After a few minutes she said she was going to make it right.  Whatever that would be she didn't know, but she would make it right.  I went home to hold my breath.

Later that afternoon, she called me at home.  She made it right.  There would be some billing issues to work out with the office manager but at the days end, she and I were both relieved to know that she would continue to be Jackson's Pediatrician.

That was the beginning of the week......

Bundle Up Folks, There's an Artic Chill in the Air or I am a Demi-God

For months now, I have been working to get some kind of clarification from the insurance company and the Kennedy Krieger Institute regarding Jackson's upcoming appointment. He is scheduled to see the world reknowned Developmental Pediatrician, Dr. Paul Lipkin. This appointment was made in NOVEMBER. Yes, nine long months we've been waiting. During the period we were on the waiting list, I was advised by KKI that they do not have a contract with our insurance company, United Healthcare, and that we would be responsible for the entire bill. WHOA.

How much are we talking here? Well, that's the problem now isn't it? Does anyone ever know how much a visit will be or the cost of additional testing? Nope. The best they could do was guesstimate.

"Around $800 for the first visit", I was told. HMMMPHM. Better get on this.

So I called our friends at UHC. Their story was that Dr. Lipkin was indeed an approved in network physician. As long as the visit was billed through the provider (Dr. Lipkin) not the facility (KKI) it would be covered. So all I had to do was make sure it was billed that way. Right.


So then I called KKI.
"How does Dr. Lipkin bill?" I ask.
"All of Dr. Lipkin's billing goes through KKI." she responds.
"He can't bill it out to UHC himself?" I ask.
"No." she responds.

Oh boy. Another phone call to UHC.

"So if Dr. Lipkin is in network, and only practices at one location, why isn't that location also in network?" I inquire.
"The location does not have a contract with UHC." she responds.
"Then what's the point of the physician having a contract with UHC?" I retort.
"This physician has been contracted with UHC for quite some time," she informs me. "He may have changed locations after the contract was initiated."
"Great. So there's nothing I can do?" I ask.
"Well, the name on the bill doesn't matter so much as the tax ID number. As long as the doctor is on the tax ID number used for the billing, it will be covered in network."

WHOA.

Several emails later I have the tax ID numbers. I call UHC to compare notes.
"Nope, he's not listed under any of these tax ID numbers, so we won't cover it" I am told.

Another email to KKI to find out if there are any additional tax ID numbers produces this reponse..... "We are calling UHC and will inform you of the outcome."


Wait a minute. UHC and KKI are actually going to talk to each other?!?! WHOA. BIG WHOA.

Twentyfour hours later I get a phone call:
"Hello, Mrs. Bender?"
"Yes."
"This is Latanya with KKI calling. I just wanted to let you know that we've worked out an arrangement with UHC and we'll be billing them directly for your visit. There will be no payment neccessary at the time of service."

I swear my ears are deceiving me.

"Really?!?!" I respond.
"Yes" she says. "In fact we've spent all morning in meetings and conference calls getting the agreement set up."

"THANK YOU!" I'm practically screaming in the phone.

"No, we thank you Mrs. Bender. This is just the push we needed to initiate this contract and get the procedures in place for billing UHC."

Now I am sure my ears have deceived me. Playing in my head is the Rocky theme song and I'm mentally dancing around the room.

Yep, I am pretty sure now I am a Demi-God. Sent to earth to make the insurance company and medical facility actually work together to resolve a problem. And if you listen carefully, you can actually hear the sound of the eighth circle of hell freezing over.