Wind, please blow these dark clouds away...

May 4th - 2011

Our family has been through a lot these past few months. I sometimes think how am I still laughing and smiling, and it is because of many reasons. Overall, we are all 'healthy', but man, we are struggling with some crazy things.

I don't even know where to begin, but I'll try to start with Cole. He has had some crazy fevers lasting 5-7 days, reaching close to 106. His last one was 105.7. We took him to Paoli ER, and the next day DuPont ER, were we were finally told he may have an auto immune issue, and may have "periodic fever syndrome". We went and saw a rheumatologist and have been sent in the direction to get genetic testing done on Cole to see if it could be it. I received a call today that insurance won’t cover this testing because there is only 1 place that will draw it, and it is out of network (we have amazing insurance – we really do! So it just stinks that this one and only place isn’t in network), and that this test could cost us personally more than 5,000 dollars!! - more to come on this if I have any energy to type this.

Right now we are dealing with Phil...Phil has been in the hospital since Sunday (today is Wednesday). On Sunday night Phil was talking to a customer and couldn't talk, it wasn't that he lost his voice, he couldn't put words together, words he was trying to say, were coming out all wrong. When I heard Phil I immediately thought he had a stroke! I called my parents, then Phil's parents and asked them to come up and stay at our house (the kids were asleep) and I took Phil to the ER.

When we first got there they thought maybe Phil had a horrible migraine (he does not have a history of migraines!), and that was the cause for him not speaking. We waited 3 hrs. (we even joked we should go home, since we were tired of waiting), and were finally seen. They drew lots of blood, took down Phil's history and ordered a CT scan. After another 3 hours of waiting, and it being almost 2 in the morning - the doctor came in and told us they found a lesion on Phil's brain, and a neurologist would be down to see us. I immediately got up, called my dad and cried. My dad came over to the ER to be with us, and also bring over a cell phone charger since my phone was about to die. The neurologist came in (at this point I was standing up), he asked me to sit down, and told us that this could be more serious than they first thought. Phil has a bad valve in his heart (he was born with this) and the neurologist told us that all of Phil's signs are showing that this valve could be infected, and when it becomes infected pieces of it could flake off and go in the blood stream and end up anywhere, and they thought a piece could be in his brain. They ordered an MRI, but we couldn't get it until the next day.

They admitted Phil and we finally got a room at 5am on Monday morning. They started testing around 7:30 am. I came home to pack the kids up, shower and help my mom load them in the car to go to her house because at this point, the doctor was talking about a possible open heart surgery, maybe brain as well depending on what was going on in his brain... I was an emotional basket case!!! But I tried to hold it all together. I cried a lot in my room, and tried not to cry in front of the kids - Cole totally picks up on when I'm sad, and it just broke my heart to look at the two and think that their daddy was so sick, I hate to admit this, but I did think for a second that i was not ready to go on with life without him. I couldn't do it... i needed him... I then stopped thinking like that real quick - because I knew he would be okay!

Where I arrived back to the hospital on Monday morning I walked in, and Phil told me he def. needed a valve replacement, and that the doctor believed the vegetation was in his brain. Umm, not news I wanted to hear, this meant he would have had to have open heart surgery, be on blood thinner his entire life, and get another valve replacement in 20-30 years. Not a good scenario for us at all. Phil and I just sat in the room quiet and got teary eyed. We instantly started talking about the kids, and how this just couldn't happen right now... I was NOT ready for this, not at all! I knew this day would come, but not this soon!

Phil still needed to go through a lot of tests, had a 102 fever, shaking, in pain etc... and he wasn't looking good. They ordered more CT scans, more blood work, and we were waiting on the results of the echo to confirm the doctors suspicions (at this time we still thought no matter what the surgery was happening - at least this is what Phil told me ;)).

Later Monday night we learned the echo was inconclusive and they needed to do a procedure Tuesday morning to go behind Phil's heart to get a better look at his valve. The doctors were convinced it was infected, and they just needed to find out where. Nothing else in his blood work was coming back that anything else was going on.

I can't remember if it was Monday or Tuesday (the days are mushed together) - but we got the results back from his MRI - and the spot on his brain showed that Phil had a stroke... they aren't sure when, as it is showing an old stroke, but he has had a Stroke. I have NO clue why my 29 yr. old husband has had a stroke and as of today - I still DO NOT KNOW! And do not feel comfortable with what the doctors are telling us!

Anyways - he had the procedure done on Tuesday - and we instantly found out the results - no infection in his valve! THANK YOU LORD!!!!!!!! No heart surgery is needed!

Now - here we are Wednesday - we have no results on what is going on with Phil, he is still in the hospital... He still had a fever as of this morning, and last night he was still having convulsions (riggers?) ... which can be a sign of an infection in the blood/heart... Soooo... I don’t know.....

My family got some bad news about my Grama as well, and I KNOW! She will be okay - but still stinks to get! My mom is heading out to Pittsburgh tomorrow so I have lost my babysitter (my dad is on the West Coast for business)... Soooo no more hospital time for me with Phil... he is on his own.

On Saturday - I got a new car (a Jetta ;)!!) and today I was driving it - picked Cole up from school, and went to my parents’ house to get Avery. My mom came out and Cole opened his car door - Thank goodness he did this while it was parked, so it reminded me to set the child locks on his side. My mom was outside and I told her I had no clue how to do it. She opened Cole's door and did something - now Cole's side door won’t shut!! My mom tried calling VW and they were closing in a bit, and had no idea what she did or how to fix it. She called road side assistance and they wanted to tow my car back to the dealership... Just my luck! I denied the towing, and my car is sitting at my parents’ house - in the garage, I just can't deal with it right now... not at all!

I sometimes wonder how I am okay through all of this, and not panicking, losing it too much.. then I just remind myself that everyone is still alive, breathing and ‘healthy!’.. We could have it much worse! Phil is right across the hall from the ICU and there have been lots of sad things we have seen, and lots of people crying/screaming and it breaks my heart, but reminds me that we don’t have it bad.. not at all. I am thankful that I’m going through this – it just shows me that I have so many people I care about and LOVE soo soo much… It also has been amazing what friends have offered, done and given us during these last few days.

I’m just ready for the dark clouds to pass by, and some sun to shine down on us… please!?