Monday

First of all, Hyatt's condition hasn't changed much from last night; her heart and lungs are stable, but neurologically she hasn't improved yet. The phone is ringing off the hook wondering if the lack of a new post meant something bad -- I'm sorry I haven't been home to update you.

Today was so action-packed I'm not even sure I remember the details correctly. Dad and I drove over the the hospital early to meet Herman and Ronnie; Jane, Sally (her sister), and Julie were going to follow close behind us, in hopes we could all be there as the specialists made their rounds. Patricia stayed behind to care Sid and Bekah. When we didn't see Jane arrive soon after us, I called Julie to make sure they were coming. She (Julie) sounded awful.....said she stayed behind and was nauseous, dizzy, and felt like feinting -- and felt bad she couldn't get up and come see Hyatt.

I jumped in the car to go get her and bring her to the ER (I am pretty confident of the route from Troy's neighborhood to the hospital by now). I called Patricia to tell her I was coming to get Julie and she (Patricia) told me that one of her friends' 36-year-old daughter had just dropped dead of a heart attack, leaving behind a toddler Sidney's age (!!!!).

Nancy and Whitney came over to help with the kids, and Patricia and I checked Julie into the ER. Patricia stayed with her while I went back upstairs to the Critical Care unit. By this time, my dad was in such terrible pain from his shoulder that he could hardly move; so Mom took him down the the ER to join Julie and Patricia. My morning was filled with phone calls regarding estate-planning, genetic myopathy testing, second-opinion referrals (and I had a ton of help with this stuff from Steve, Allen, Kent, Nancy, etc). It was a really weird feeling...too busy to think, and people dropping like flies all around us. I understand the financial system and bond markets (my usual day job) were in crisis the last two days unlike anytime in 20 years -- though frankly I don't care, I can catch up on that stuff later. Sure seemed like the end of the world was upon us for a while there. Julie and Dad both got some good drugs and good rest, I popped in a couple times in the ER (I also know the route from the CCU to the ER pretty well now. A lady at the desk in the ER asked me if I needed help finding something and I told her no, that I was just making my rounds.

Now for our various meetings today:

A new cardiologist (one from the same group as the others) did a repeat cardio-ultrasound today to see if Hyatt's heart had changed. His read was that the heart showed some segmentation -- that it was weaker in the front than the other parts. Although far from certain, this could mean that the hyeart problem was related to that front artery -- either a blockage or a splitting. The cardiomyopathy is still a feasible diagnosis however. Bottom line is that if/when Hyatt wakes up, they'll start more acute diagnostics (catheterization, etc), to figure out exactly what the problem is so they can treat her heart most effectively.

The pulmonary specialist didn't really have much new information; she's fairly certain that at this point, Hyatt would NOT be able to breathe on her own however.

We were able to get a second opinion from a neurologist from a different group today. We found him very thorough and experienced with these types of cases. His opinion wasn't much different from the one we had earlier (that a recovery was quite unlikely), but he felt like we need to give things a week or so to observe and see what kind of signals Hyatt gives us. Troy, Ronnie, Herman, and I all really liked him a lot, and Troy decided to ask him to take over on Hyatt's neurology care. He didn't make the change because of a more optimistic opinion; we just felt like he was a better match for us. We had a second EEG, but both neurologists felt it was unlikely to tell us much (but it made Troy feel a lot better).

Troy, Mary Alice, and I had a meeting with a woman Mary Alice found for us who specialize in helping children though traumatic experiences with family members. She had some very good suggestions for talking with Sidney, and Troy talked with Sid tonight about if she wants to go see mommy in the hospital. Sidney wants to, and sometime in the next couple of days, Troy will prepare her for that and bring her in for a visit.

Troy and I also had a meeting with an estate-planning lawyer, to look over Hyatt's life insurance and will and make sure there were no steps he needed to be taking now. She is a wonderfully caring woman, and like all the hospital personnel we've dealt with over the past few days, we feel fortunate to be dealing with such caring people.

Hyatt had visits from several groups of friends as well as the minister of the nearby methodist church. I was busy with other meetings and calls when he came by (twice), but Herman and Ronnie talked about how great he was as well.

Sid and Bekah had wonderful days today. Sid really was not doing well yesterday, and we suspected it was her picking up on something being weird with people going in and out of the house all day long. We decided to try to make her inside world a bit more normal, and get people to call the house from outside rather than ring the doorbell and come through, and it worked wonderfully. Nancy and Whitney have done such a great job caring for them! We SOOO very much appreciate all the neighborhood friends bringing us the things we need and don;t have time for. We really realized this today when all got home absolutely exhausted today and there was a full (HUGE) dinner waiting for us.

I am looking back over this post, and am sure I missed at least 500 things that happened, but I'm having trouble piecing the day together in my mind. In the private meetings we have, Troy keeps telling people that he brings me to think straight since he can't. Little does he know how far I am from being able to think straight. I still cannot imagine what it's like to go through something like this, but watching a loved one go through it and being powerless to really help cannot be that much easier.

During one of my calls today, my eye caught a small glitter on the hallway carpet. I picked up a very small champagne-colored diamond (way to small for anyone to miss it) that looked like it could have come from an earring or something. I showed it to Herman and told him I was going to give it to Sidney. It's probably just cut glass, but Herman put it in his wallet. He said he'll take it to a jeweler, and if it's a diamond he'll have it mounted for Sidney and tell her it's something Uncle Pete found while he was taking care of her Mommy.

Troy is upstairs giving Sid a bath and putting her to bed. I'll shortly take him back over to the hospital to spend the night with his wife again tonight.

My 21-month-old daughter just told me she loved me over the phone. I didn't know she could say that. I'm also not sure what she's doing awake at 9:20pm with her grandparents (her twin brother is asleep, like he should be).

take care everyone.

pete