A little bump in plans...

I was reminded of a few things yesterday;

1) Don't ever say that Zeta HASN'T done something in a while - she will show you just what she CAN do - case in point? - Last week when she started sleeping a lot and doing some questionable 'new' seizure activity we talked about how when she used to have kidney issues that she would get sooo sick and we could ALWAYS tell when she had a UTI. We said, "She finally outgrew all that, because even after the surgery to correct it she still had a few." Well, guess what? She has a UTI. Totally different presentation than usual. Totally caught us off guard. Totally must have heard us talking about how we 'know' all this stuff. She just needed to keep us on our toes I guess!

2) Things can change in an instant - (Yes, I KNOW this - It still sometimes catches me way off guard though!) We know Zeta has been acting........different.........for the past week......but we just couldn't figure it out. She seemed a somewhat better when we were at the beach (which she usually does - the salt air is just in her blood), but she really started hyperventilating more when we got home. We had a scheduled appointment with her pediatrician in Walterboro and of course Zeta was 'showing out' a little more when we got there. We kind of attributed it to the fact that she likes to try to scare doctors, so we tried to get out of there as quickly as possible without getting sent to the hospital - we have hospice for all of that now. In the meantime, pulmonary had returned our call from earlier about our concern over her hyperventilating and wanted to get a blood gas - the only lab that we haven't been able to successfullly do at home.........so we headed to Charleston. We got the blood gas and literally walked out of the lab when 'someone' decided we had not had enough excitement for the day. Zeta's heartrate skyrocketed (which we've seen do before) and stayed there. Well, ya know, we're in a hospital and Zeta's acting funny - can you guess what happened next? Yep, we ended up in the ER. New residents, new doctors, different nurses (hey, it had really been a while since we'd been there) although we did see a couple of familiar faces.....but anyway, I was a little nervous because new people plus Zeta always ends up in admission. She is just not the type of liability most people feel comfortable sending home. To make a longer story short - everyone there was wonderful (which has never been uncommon at MUSC). We spent a very long time at the hospital, but ultimately were able to come home to provide IV antibiotics and fluids at home. A strong supportive home and hospital team made it happen!

3) Two big things that I realized almost immediately once we were in the ER is that throughought countelss ER and hospital admissions, we had never had either one of the boys with us. I'm pretty sure that even the times the ambulance has had to get Zeta that they've never witnessed any of the chaos or had to be the on the frontline of fear. This is ultimately due to the fact that I've always been able to call my parents at the drop of a hat and they took the boys, immediately without question. I truly, truly realized how grateful I am for that. They had some trouble accessing Zeta's port yesterday. Chancelor doesn't miss anything, so when the nurses were calmy discussing it he began to understand that it may be a real problem if we couldn't access it. He teared up and asked me, "Is this dangerous for Zeta?" There was another time he teared up and asked me, "Can Zeta die from this?" I'm not even sure what was going on at that time, but I remember looking at the fear and concern in his eyes. Please keep in mind, that at no time did I feel Zeta was in imminent danger of dying. Yes, she was (and is sick). Yes, things can always go any way with her..........but yesterday was definitely not one of those times when I felt like we had lost all control and were running out of options. It was just the first time, Chancelor had really had to see any of the initial protocal to an emergency visit. I'm thankful that neither of my boys have ever had to see more.

Keep us in your prayers today. Pray that Zeta will recover quickly and smoothly without incident. Pray that her brothers remain understanding. Pray for our family- in just dealing with life - just everyday ordinary life like everyone else. Praise Him for all of our blessings....for our loving, patient boys and all of the miracles we've seen in our lives. Praise Him for what He has done in your life!