Friday, September 2, 2011

This week.

Another week has come and nearly gone. We made it through the first week of school! The first week is tough while we all adjust to the schedule change and working out the kinks of the daily time lines. I certainly can attest, that it doesn't make it easier when adding trips to the hospital!

We celebrated Jilly's birthday over the weekend, just as hurricane Irene approached the area. Our house decorated in Tinkerbell party decor and a small gathering of party goer's inside our home, while "Irene" began to shower us with a tropical storm outside. At that point in the day it was just a steady rain and the more severe weather came a bit later in the evening. The party was a great success and just as this 6 year old wanted! And we weathered the storm fairly well. Getting little sleep through the night as the wind gusted against our home and the electricity flickered on/off, abruptly waking the boy every time as his bi-pap machine would turn on and off with the power. We awoke still tired and slightly crabby in the morning, but our house still standing and our electricity on more than it was off, which is always a good thing.

Monday morning we were exchanging phone calls and emails trying to decide what to do with this boy of ours. When I wrote the last blog post he was on somewhat of a "high" of blood products, which we were greatly enjoying! Last Wednesday evening we removed the foley catheter, as we were instructed, and Thursday he began to "crash" from that high. By Thursday evening the bleeding had returned. His pee was containing blood, once again. Ugh! I emailed and called all the docs who needed to be notified. We were told to leave a catheter in place through the weekend and check in again on Monday. Saturday, as Jilly's party and hurricane Irene approached, his urine turned a darker shade of red. We wavered about taking him to the hospital, as we were originally told to do if the bleeding increased, but being that this issue had been going on for several weeks now and knowing that they wouldn't do any more than what was already being done here at our home, we decided we would take him to the ED should anything more change. Needless to say, we made it through the weekend and Monday morning after getting Maggie on the bus, I began to make the phone calls and emails to the docs for decisions of what exactly to do now.

In the end, we were sitting in the ED for most of the day on Monday. At one point we were even graced with the urology resident's presence...who, well. Let's just say I do believe my newly turned 6 year old has more manners than he. After stating that this wasn't his problem and not stating aloud, but making it perfectly clear to Bryan and I that he felt bothered with such a 'trivial' case, he left. So helpful! Dr. R then walked in and we passed on the message that it was all in his hands. His excitement was clear! Ok, not really, but he did his best. Hours later we left the ED with another foley catheter in place.

Maggie's first day of school went well from what I've been told of. She was a bit upset with me that I wasn't there to greet her coming off the bus. After talking it through she came around and opened up about her class. She doesn't know any of her classmates, which was a bit of a bummer for her. But she quickly made a new friend who she seems very fond of and the school days have been looking brighter, thankfully.

Tuesday was Jill's actual Birthday and she was off to her very first day of school. The time had finally come...the day that this girl had been counting down to all Summer long! She anxiously walked through the school doors, her arms being held slightly away from her body to keep her over sized pink polka dot backpack on her shoulders, carrying the container full of brownies in her hands to share with her class as her Birthday treat. The tears were very close when it came time to say goodbye for the day, as her bottom lip began to poke out and quiver, she whispered "I'm going to miss you, Mommy." I held back my own tears and gave her a big hug and a swift kiss. Assuring her that Wyatt and I would be there when she got off the bus with Maggie at the end of the day, excited to hear all about school!

After getting Maggie on the bus and Jilly to her classroom, I was able to send out a good report via email...the bleeding had stopped again. For whatever the reason, our boy's picky little bladder prefers a foley catheter! It was that afternoon that I received an email from the doc telling me that Wyatt was growing yeast in his urine and we needed to start treating it, hoping to keep it under control and from getting to his central line. The first dose of medication needed to be given in the hospital. After my own slight panic at the thought of not being home to get the girls off the bus as I promised them, Dr. R agreed we could do it the following morning. Our life is a balancing act, and at times the girls need us just as much as Wyatt. This was one of those times that I knew they both needed to see Wyatt and I when they stepped off the bus.

We now have the new round of meds started, the foley catheter is still in place and the bleeding has ceased. Wyatt's teachers came to meet our special boy yesterday and brought along a small binder containing 19 "Getting to know me!" pages. Laminated papers with a picture of each child (and teacher) with several questions and answers about their favorite things. It's perfect for him to flip through and get to know the kids in his class! We hope to visit the school next week for the first time and meet his new classmates in person, mean while the tech guys are working to get his video streaming equipment up and running so that he's able to "sign in" to his classroom from the laptop in our home. Mrs. S, his teacher, said the large TV screen and camera that has been brought into her room is generating a lot of chatter from the children, anticipating the first time Wyatt will join them in class. While Wyatt only knows two children in his class this year, we're told that all the children already know Wyatt!
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1 comment:

  1. Oh. i am so sorry to read about Wyatt's issues with the blood!!! Poor guy! I have not caught up in a long time. I hope everything has been doing ok lately. Been thinking about you guys.