Sunday, October 9, 2011

A week of madness..

I know I'm a little late updating this, but I am still going to write it for Parker's book.

Monday started out as a pretty good day. Our dialysis team called us bright and early to tell us that Parker had done so well over the past week, that we would be moving to the floor. We packed all of our stuff up and headed to New Orleans. When we got there I reminded the nurses (just like I did every day) that Parker had to have his "little man" surgery before we left the Nicu. Well, they drug their feet for so many days that surgery wasn't available to come up and do the procedure. Unfortunately, we were sent back home and told to return on Tuesday.

The surgeon was supposed to be doing the procedure first thing in the morning Tuesday, but by mid-afternoon he still hadn't showed. At this point I'm furious. The dialysis team and nephrologists weren't too happy either. The nurse finally called the surgery team back and they said they weren't coming. I'm beyond mad at this point, but the doctors agreed to move us to the floor anyways, so I didn't say too much. So, Tuesday night we spent the night at Children's with Parker and did our "home trial". We had a dinner date with Aunt Namie in our room and attempted to relax. Those of you who have ever been in the hospital, know that this is hard to do.

So Wednesday morning rolls around and still no surgeon. Finally I tell the doctors and nurses to cancel his little man procedure. If this was going to be the one thing holding us at the hospital it wasn't worth it. We could always have it done later as an outpatient procedure. Well apparently this got their attention. No more than an hour later the surgeons were in our room and 30 minutes later he was in surgery.

Later that morning Dr. Aviles- our nephrologist- came in and said, "well guys you are going home!" We knew that it was a possibility to go home that day, but we have learned through this journey that things change every minute; therefore, we did not get our hopes up or make any announcements.

By 3:00 we had escaped the hospital confines and were on the road. We had to stop at the pharmacy in New Orleans and pick up his prescriptions, which by the way took an hour. This is the reason we did not get home until 5:30. Once we got home, let our parents visit for a little while, unpacked, set up the medical equipment, connected him to the dialysis machine, ate, and showered, it was almost midnight.

Thursday morning was spent assembling gifts from the baby shower we had on Sunday. Around lunchtime Jason had to leave to go to work and wouldn't be back for a couple of days. Parkers first pediatrician -appointment was at 3 o'clock. Then we had clothes to wash, had to bring daddy a few things he had forgotten, bathed Parker, connected him to the dialysis machine, ate, and showered. Also, remember that he HAS to be woken up every three hours to eat. He has a very strict diet. So, as you can tell, it's been a little nuts around here.

Friday morning we had to do lab work at the local hospital bright and early. Parker slept most of the afternoon, so I was able to relax a little.

Today we had his bowling benefit. A lot of our friends and family showed up to support us. Everyone had a good time and enjoyed themselves! Thank you to everyone, especially our dear friends who have worked so hard to make it a success. We love you all!

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