Unexpected Turn of Events

After about only 2 hours of sleep tonight, I'm sitting here downing typical hospital coffee with a million different thoughts scrambling through my brain.

This has been a day I wish to never go through again!!!

I'm sure its by the grace of God that I got our computer to connect to the Internet right now (seeing how I am sleepless) and able to check my Facebook and blog. I plan to tell you what happened today if I can see through the tears, but first, how did I ever ... EVER ... get so lucky to have each and every one of you in my life. When I opened my Facebook ... ugh ... the hot, stinging tears are just rolling down my face ...

(Let me recollect myself)

When I opened up Facebook, the amount of genuine love, support, encouragement, prayers, sympathy and empathy for my family and I is overwhelming!!! I literally don't know if I have the words (or thoughts) to express to you the difference you have made in my heart tonight ... this morning ... whatever time it is! I sincerely think I felt every well wish, thought and prayer each of you uplifted for my family today. Make no doubt ... I am GRATEFUL for each of you!!!!

Here is what happened today.

Yesterday, Jocelyn of course did her normal thing of waking up around 2:30-3am and wanted to stay awake with the mission of waking the dead, until nearly 5-6am (which of course was when it was time for mommy to get up). The last several sleepless nights (weeks if I'm honest) finally caught up to me and I felt zapped. I sort of slept until 7am, then reluctantly dragged myself out of bed to see Justin off to work and get things started for the day.

I decided to let Jocelyn sleep until around 8:15am and then woke her up to get started for the day. After all, we had physical therapy in town at 10am so we had to get moving.

Jocelyn and I did our normal routine of giving her 8oz of water in the morning while I simultaneously made her blended meal for the day. Once I had her water infused, it was time for a bath, brushed her body (its a sensory awareness therapy thing), lathered her squishy chunky self in lotion, dressed her, played with her bouncy wet curls, brushed her teeth and then it was time to eat breakfast.

After only giving Jocelyn maybe 4oz of food, I could tell that she was getting ready to vomit. I don't get too worked up because sometimes we have quite a few vomiting spells, then it stops for awhile, and then out of nowhere, it rears its ugly head again. Just when I think I have it all figured out to why she vomits, I suddenly find myself at a lost for why.

Since I could see Jocelyn was about to get sick, I grabbed a towel that I always have nearby, and she of course began heaving. Quickly I started to noticed how violently she was vomiting and couldn't seem to clear the vomit from her throat as easily, which alarmed me right way, but her body finally rejected the meal it obviously did not want.

I've gotten pretty good at this so nothing got on her shirt or chair, and the only thing that was soiled, was the towel. I wiped away whatever else I could see on her mouth and chin, and then the unexpected happened.

The next thing I knew, I found myself saying "Jocelyn, whats wrong baby?" as she instantly had this icy, glazed looked to her eyes that were fixed as stone. I moved to get right in her face and again I said "Baby are you okay?" Right away I started to see a change in Jocelyn's body that I have been fortunate enough to have never seen until now. She lifted both arms out to her side, clinched her fists and then started to turn her hands down and inward. Her whole body tightened in a way that you would expect a bodybuilders to do if they were about to lift weights heavier than they should, and that was when her eyes fluttered up and to the side as her whole upper body started to tremor.

I have never seen anyone have a seizure and I could have went my whole life without seeing one, and especially seeing my babygirl have one. I found myself dumbfounded and wondering what was I truly seeing right in front of me, but the next thing I knew, I had Boogie out of her chair and on the floor with everything away from her.

Jocelyn continued to seize and became unresponsive as I called 911 (through my tears), gave the details and then called Justin at work to tell him to get home NOW!

The seizure lasted for 10 minutes.

This was the single worse, most helpless experience, I have ever EVER had. I'm crying now as my brain so clearly replays all the graphic details. If there was ever a feeling of wanting to die -- it was in that moment.

Right as Jocelyn's seizure was starting to end, the first responder ambulance arrived at our house. I found myself updating them on what had happened thus far and yet was in a complete daze. Jocelyn hasn't had seizures since she was in the NICU and the only reason she had those, was because she suffered massive brain hemorrhaging and the all that free blood inside the brain aggravated the tissues which caused seizures. Once the blood cleared, she no longer had seizures and has remained that way until now. When you are a baby (and in her case a micropreemie), seizures are not outwardly expressed like it was today which made me all the more unprepared.

As I watched the first responders, I found myself feeling like I was going to hyperventilate (again, a new experience) and yet at the same time slit their throats since it was obvious they were not prepared to help a 2 year-old. They didn't have any pediatric supplies (so they couldn't even check her oxygen level was which is often really low during or after a seizure in most people) and my mind screamed "What the hell are you here for then!!!!!"

Next thing I knew, a different ambulance arrived and thankfully was what we needed. After the second group performed a quick assessment, they loaded Jocelyn into the back of the ambulance, I jumped in behind them and then we hauled ourselves off to Stormont-Vail in Topeka. It was about 9:40am at this time.

While we were in the ambulance, Jocelyn had a second seizure that last 5 minutes and caused her oxygen levels to briefly dip into the 50's-60's. At this point she was given Versed through her nose (Jocelyn did not yet have an IV site). Once she had the second seizure they decided to high-tail it to the hospital which was absolutely okay with me. On a side note, "high-tailing it" while in the back of an ambulance made this already motion-sickness prone mama even more on edge!

At about 9:55am, we arrive to the ER and again provided the same report of our morning to the staff, and everyone started replacing monitoring probes, attaching wires, hooking up all the machines, drawl blood and fish several times for an IV (let me tell you how unglued I was about to come). At this point Jocelyn was in a deep trance-like state and pretty unresponsive. Then it happened again ...

She had a third seizure -- all in under an hour!

More versed, a bigger dose this time, was again given down the nose as we still didn't have an IV site.

FINALLY -- the seizures stopped!

 

For the next 6 hours the only thing accomplished during our stay was a fast 30 second CT scan and thoroughly pissing this mama off!! I won't go into everything that happened while we were there (I don't have THAT much energy), but let's just say if critical thinking ... any thinking ... was taking place, the care we received would've been more thorough, effective, safe and all around better. Justin said he was glad he ran home to gather supplies and missed my raging outburst. I don't like to be that way, but get it together or get the hell out of my way!

I maintain a medical care notebook with all Jocelyn's information which includes a million different CDs of her past CT's and MRI's, and so I was able to provide those for the hospital for review (that's a point scored for this organized mamabear!). However, even with having past CT's for comparison, it was difficult for the radiologist to tell whether or not Jocelyn had a shunt failure.

For those of you that don't know, Jocelyn has a right VP shunt and you can read about her shunt, or watch a quick video of a shunt procedure, by clicking HERE which will redirect you to a different blog entry of mine.

As the hours ticked away, so did my patience while we waited and waited and WAITED at the hospital in Topeka. They wanted to perform a nuclear shuntogram (this is where you inject radioactive dye into the shunt) and I told them no way in hell as we've been down this road before and we weren't doing that again. I told them we weren't doing anything remotely like this until they contacted Children's Mercy and talked to either our neurosurgeon or whatever pediatric neurosurgeon that was on-call. I instantly no longer had "friends" at Stormont.

I kept getting the run-around that they couldn't get a hold of anyone from CMH, or that they were waiting for a call back -- blah, blah, blah! I wanted some answers, a game-plan and I wanted it NOW!

I decided I would take it upon myself to get things rolling and I started called the neurosurgery department. I called every 5 minutes and left a message ... over and over and over again. In between those phone calls I started calling the Ophthalmology and Special Care departments in an attempt to have one of those nurses personally contact a nurse from neurosurgery, and then in return, the neurosurgery nurse would actually call me back. Come hell or high-water, someone was going to be calling and helping me.

End result?

I got the Stormont hospital the name and number of the on-call neurosurgeon, and as a "just in-case" kind of thing, I also had the neurosurgeon call Stormont himself.

It worked! When in doubt -- DO IT YOURSELF!!

It of course was decided to not do anything else to Jocelyn and instead, ship her directly to CMH for further evaluation and treatment. The waiting game commenced until we finally got an ambulance to ship Jocelyn out.

The trek from Topeka to CMH is quite a bit longer, so this time Justin rode the hour plus drive in the back of the ambulance, and I followed behind them in the van wishing the entire time that I was the one sitting next to Jocelyn.

Once we arrived to CMH everything instantly was different. They already had surgery prepped and ready if needed, and a whole team was waiting and ready to pounce into action. This is merely one difference between CMH and every other hospital we encounter.

Within 15 minutes of arriving to CMH, the staff had everything they needed accomplished (including the CT evaluated) and the neurosurgeon was already tapping Jocelyn's shunt to check it's pressure and for any possible infection. From the results Dr. Hornig didn't feel like there was a shunt failure or infection, but yet the shunt valve pressure didn't seem to be "strong enough" or functioning quite like it should.

The decision was to take Jocelyn into surgery with the anticipation that only a partial shunt revision would be needed (which meant replacing the shunt valve that is inside the brain), but with the possibility that once they got in there, she may require a full-blown VP shunt surgery (aka terrorize her with pain from the top of her head down to her abdomen).

After what seemed like eternity (although only really 2 hours), Dr. Hornig said he only had to replace the valve and not perform the entire surgery which was a relief after the day we have had. He told us the pressure in the brain was high but not terrible (it was at 18 psi and the pressure inside the body is normally at 15psi), but that we would have to wait and see if this was going to solve our seizure problem. He was also very sweet and apologized for her "bad haircut." I told him I didn't care as long as he made her better and he replied "Well, I hate to do that because she is so darn pretty." Very sweet of him to say and of course made this mama beam even in light of everything.

So here we are, spending the night at CMH ... again. Justin is asleep on the sofa bed and Jocelyn is in her bed/crib on her way to recovering I hope. She has been in quite a bit of pain tonight and she's letting everyone know about it. She is so funny because she's got the "if you touch me one more time I will sock you in your face" look down and isn't afraid to let you know it. She's being a turd because she keeps wanting to rub her head, then of course it hurts, she's ripping off her oxygen cannula, tearing her pulse oximeter off no matter where we put it, trying to pull her IV out and I'm like wait a minute here sister ... where did you come from?? All of these things are very good signs though that I welcome openly.

We will see what tomorrow brings and I pray its no more seizures. I'm sure we will have updates and maybe even some pictures of her gnarly warrior scar to add to the many others she already has.

With every ounce of sincerity that I have, I love you all of you immensely and thank you for supporting us along this ever winding journey that is filled with peaks and valleys!