Saturday, March 26, 2011

Hospital stay...#45681579 (or so it seems)

So much for a relaxing weekend (even though, with 7 kids its never relaxing)...Yesterday I took Kenny to the doctor because he was lethargic, coughing to the point of puking, a high fever, and looking really really sick...and what do ya know...they admitted him. His temp was 104 degrees, his heart rate and resp. was really high, and they wanted to keep an eye on the coughing. Not to mention, he had not pee'd from the night before. It took till 7:00 pm, and tons of IV fluids for him to pee. All the while, I was praying that he wouldn't go into a seizure...which...(knock on wood)..he hasn't.

This seems like the same virus that he gets every 6 months, like clockwork. I was so paranoid that he was going to go into a seizure that as soon as I was able, I made an appt. with his doctor. When we got there, a doctor (whom Kenny never had before) was going through his history on the computer. I mentioned to her that he just had an MRI, metabolic testing, and immunology she looked it up on the computer. There she did confirm that our Kenny has microcephaly and a cyst...but, "not to worry about it...its things we already knew"...ummm...yeah...thanks for throwing that on us doc!
My heart dropped and broke in a million pieces. I mean...OK...I've dealt with miscarriages, Nicks death, the NICU, a gazillion hospital stays, surgeries, seizures...but my son cant be given a death sentence after all this....can he? I mean, it you look at the bigger picture of life, we all end up doing the same things...we born, live and die. But honestly, I am trying to understand all of this. I look up online what exactly "microcephaly" is...I know, I know...I shouldn't do that, but face it...we ALL do it! Now knowing that there is a diagnosis...I looked it up. I shouldn't have.
This is taken from the very well trusted Cleveland Clinic website:

What are the symptoms of microcephaly?
Aside from a noticeably smaller head, the following are the most common symptoms of microcephaly.

High-pitched cry
...yep, had this
Poor feeding ...and this too
Convulsions ...were batting 3 for 3 here
Increased movement of the arms and legs (spasticity) ...check...Its all the time with Kenny
Hyperactivity ...check...he never stops!
Developmental delays
...that of a 20 month old *sigh*
Mental retardation
...I just don't want to go there with this one

Delayed motor functions and speech ...this one too.

There was also a website that mentioned hearing loss and strabismus...which he also has.

As the child grows older, his or her face continues to grow while the skull does not. This causes the child to develop a disproportionately large face, a receding forehead and a loose, often wrinkled scalp. The rest of the body is often underweight and proportionately smaller than normal.
(and for this paragraph...I cant and dont want my beautiful baby to start looking like a freak! sorry, I am just writing what I am feeling)

Then...comes the kicker...the prognosis...

"the life expectancy of an individual with microcephaly is reduced and normal brain function, poor."

No words.
So this is where were at now...I'll know more when I talk to his doctors.


J9 said...

are there treatments where they can kind of like open up the skull so that it can grow? similar to when babies skulls are flat and they do interventions? ((hugs)) i hope his fever is down.

Tiffany said...

I did the same thing when my son was diagnosed with microcephaly. The internet scared the crap out of me. Talking with the neurosurgeon and pediatrician helped. They both said that his microcephaly was secondary to his hydrocephalus and that it really is a medical term to describe his smaller than normal head.

I too am fearful about my child's look changing and being SO different. I feel your pain.

Tiffani said...

Thinking of you and praying! Kenny is a fighter and God and his brother in heaven are watching over him! God hand picked us to mother 23 weeker twins and to take this journey of raising one without the other. He has a plan for us and our children! Take care and if you need anything email me.