October~

Let me just start by saying that I loooove fall.  It's my favorite season and so fitting that my mother named me Autumn.  We have another crazy month on our hands that begins with Brian flying out on Monday for some work training in Dallas.  He will fly back on Friday, we will attend a wedding on Saturday, drive to Indy on Saturday night, and fly to Miami on Sunday morning.  Brian won a contest at work so we decided to get some "us" time and make it a mini vacation.  His wonderful momma is gonna take care of Ty for us until we fly back late Wednesday night.  Thursday morning we will take Ty to Riley where he will undergo the procedure that (cross your fingers) will hopefully fix the kidney reflux and also have a g-tube (feeding) tube placed.  Finally coming to the decision to go ahead with the feeding tube is one that Brian and I have spent many hours and many prayers on.  Tyler has gone back and forth between losing weight and staying the same for some time now.  We can see a decline in his energy level and he is dehydrated most of the time.  I know thisis  a topic that people have many different views and opinions on but for us this is the right decision for Tyler at this time.  We will still be feeding as much orally as he will take but it will give us great comfort knowing that we can supplement and maintain the right hydration for him.  Keep us in your prayers for safe travels and a successful surgery and recovery.  Happy Fall Friends!

First trip to the Zoo

Although our last post was about being home.  Unfortunately, we didn't get to stay there long.  Less than 24 hours later we were back in the hospital with a fever.  They put him back on the iv antibiotics and took another culture.  They wanted to make sure the antibiotics were working so we spent another 3 days in the hospital before finally returning home on Thursday.  Tyler was in good spirits and you could tell he was happy to be home.  Saturday was a gorgeous day and we welcomed the temps in the 70's and 80's.  This summer has been so bad, I feel like we haven't gotten to do to much outdoors for fear of Tyler having a seizure because of the heat. However, this day was perfect and we decided it was time for Tyler's first trip to the zoo.  Brian and I got some excercise walking the hilly paths and Tyler just took it all in.  He loves being outdoors and it was great to get out in some fresh air. 



Ready to see the animals!



Home, James!

~The Coffey's are home~

The results are in (again).

This morning we received the results from the urine culture and it confirmed our suspicion of a kidney infection.  We were hoping to go home today but the dr. needed to do more tests to figure out the specific strain of bacteria that was in the urine.  She explained that although the antibiotic  he had been receiving would make him feel better, it probably wouldn't completely kill off the bacteria. We needed to figure out which antibiotic to use based on the bacteria.  We got some more specifics this afternoon and started the new antibiotic this evening.  They did a blood draw and his white cells are down to 11,000.  He is back to his old flirty self and we all can't wait to sleep in our own beds!

Watching the olympics.

Exhausted.

Feeling better and ready to play.

He is Olympic training~ always stretch before your workout!

The Rollercoaster

Thursday
 1:00pm-
Tyler wakes up from his nap and is fussy and hot.  I take his temperature and it's 100.  I give him some Tylenol.
2:00pm
100.6 degrees
8:30pm
After rotating Tylenol and Ibuprofen, Tyler is super fussy and he still feels hot.  I take his temp and it reads 102.8.  Brian and I give each other "the look" and head to the ER.
9:00pm
Get taken to ER room and temperature is 102.9.
They give him some medicine and an hour later, he is still over 101.  The dr. wants to get some blood, cath him for urine collection, and start an iv.  The blood and urine are collected.  Now, the hard part.  Brian tells them the problems we always have starting an iv.  They get their "go to" girl who proceeds to stick him 3 times failing to start the iv.  Blood comes back with white blood cells elevated over 20,000.  He will be spending the night.
1:00am
Taken upstairs to pediatric floor.  They will try to start the iv.  3 more sticks=fail.  His fever is up again over 102.  He is sooo hot.  All he can do is whine.
2:30am
I walk out of the bathroom and Brian is holding Tyler.  I shut the door and his eyes pop open.  He gasps and it happens.  I have been dreading this moment for 16 months.  I pray EVERY SINGLE DAY that this moment never comes.  It came.  He shifts his gaze and his body starts trembling.  I run outside and start yelling for help.  Nurses swarm in.  One is timing it with her watch and one is getting him on oxygen.  Time is going in slow motion and I am flipping out.  As I type this, tears come to my eyes while I relive the scariest moment of my life.  He lets out another gasp and starts breathing regular.  One nurse breaks the silence, " I think it's over-I timed it at 3 minutes."  His eyes flutter and his arm stays rigid.  They put him in the crib.  Things start to settle down but I can't stop crying.  One nurse explains everything that just happened the best that she could and reassured us that during the seizure his oxygen level stayed above 80 percent.  Brain loss occurs when the brain is not getting oxygen and she felt like he was breathing the whole time.
3:00am
They call in a dr. to try to start an iv.  He tries 2 more times but is unsuccessful.  They give him a shot of antibiotics.  They want to start iv antibiotics and also have immediate access to give him medication in case another seizure is to occur.
We go over options and decide on the picc line.  He will need to be sedated and a radiologist will use an x-ray to see to thread a line through his arm to the big vein that goes to the heart. This will give them the ability to do blood draws and give long term antibiotics if needed.

Friday Morning
He gets his picc line.  White blood cell count is exactly the same.  Won't eat.  Fever hovers between 101 and 102.  My biggest fear today was that we were unable to lower the fever and he was going to have another fever.  He vomits up his motrin.
Friday Evening
He drinks his pediasure but vomits it up and then does it again at 1:30am.  Still has a fever.

Saturday
Cell count is still over 20,000.  They are unsure why it isn't dropping. At it's height, the fever was 100.8 today.  Late in the day he was able to drink and hold down a total of 10 oz of pediasure.  His demeanor has changed dramatically and he is smiling.  Tonight his fever is gone.  We are hoping that the morning brings more good news and his white cells have dropped.

Brian and I are exhausted but elated that he is doing better.  It has been a very scary several days. They are thinking this was all caused by a urinary tract infection due to the kidney reflux which will most likely need surgery to fix.  We will find out for sure when the urine culture results get in tomorrow.  We will be going to Riley the 20th to meet with urology, get some testing, and discuss the recent infections.  Big thanks for all the prayers, visitors, and support.  We are ready to be home!!!!!

:0)

Thank you so much for all your prayers and words of encouragement and support.  I just received a phone call from the pediatrician about the additional tests and the results were all within normal ranges. We will also now be seeing the nephrologist that she has been consulting with when we go up to Riley for the urology appt. this month on the 20th so he can monitor Tyler from here on out.  Another example of how trusting God seems to work a lot better than worrying about things I have no control over.  Thanks again friends and Go TY GO!!!!

I got nothin' {insert catchy title here}

The glowing red numbers on the nightstand mock me with each passing minute.  I toss. I turn. I envy my husband who is snoring softly beside me.  He has mastered the art of falling asleep mere seconds after his head hits the pillow.  Unfortunately, I have almost always lacked this ability and my brain tends to shift into overdrive when it should be shutting down.  Tonight is no exception.  

Earlier this evening, I received a call from Tyler's pediatrician about some labs we had run.  Let me back up though.  Last week, we attended our first 4p- national support group conference (more on that in a later post).  We attended a session highlighting nephrology/urology and the importance of monitoring blood work due to the high level of chronic kidney disease and renal failure associated with 4p-.  Upon returning home, I discussed this with our pediatrician who suggested we go ahead and draw the labs since we were already there.  Fast forward to the phone call were she informs me that the levels we were originally looking at were within normal range.  However, his calcium level was high and raised a red flag.  "Way too high" were her exact words.  She will be consulting with another doctor and we will try to pinpoint the exact cause of the elevation.  She is off on Fridays (of course) so we won't get any more info until next week.  

Now, I should of learned my lesson after googling "Wolf-Hirschhorn Syndrome" after receiving Tyler's diagnosis.  But nooooooo: I have no patience.  I want to know.  I go into Nancy Drew mode and try to channel my inner Dr. House while researching all the possibilities for elevated calcium in the blood.  I scare the shit out of myself reading about cancer, kidney disease, and so on and so forth.  Hopefully it's nothing.  I'm praying it's nothing.  But now I am wondering.  Will it always be like this?  I feel programmed to think the worst.  Goodnight for now, I'm off to sleep (hopefully!!!)

~A