When I was born, Mommy & Daddy were living in an apartment. They were living here above this Century 21, next to the dance studio:
They knew that now they had to find a house before I came home, because I needed the space with all the medical equipment and room for the homecare nurses and things like that. After a little bit of time househunting, Daddy and his realtor friend (who we met in Delaware County Hospital NICU), found our family a good home to live in. (Thanks Daddy and Jeff) This was our new home: Mommy always stayed with me in the hospital while Daddy took the time to find a good house. She wanted to get the best learning she could in order to be a good mom as well as nurse.
Well, it was at the end of June 1996 when I was finally ready to get out of this hospital and home to my family. (Mommy said she was waiting for this day to come for many LONG months!) Specialists came out to make sure our home passed inspection to have a homecare patient on life support reside here. There was also a nursing agency there at my house as well as a medical equipment company. There was a lot of people at my house for my homecoming. There was even a company called the Pennsylvania Ventilator Assisted Children Home Program. (They were a group of medical professionals that offer many ways of assisting patients on ventilators and their families to make living a little easier.)
Mommy was so excited as nurses and staff were getting me ready to go. Of course, I was just a baby (8 months old)and I didn't know at the time what was going on but I did know that my mom was there and it was going to be okay because she was sticking by me. Daddy was at home with all the people in our new house getting last minute things set up there. Mommy rode in the ambulance with me. We pulled up to our house and my grandpop Joe was holding a videocamera as Mommy got out of the ambulance and then came ME. I WAS FINALLY HOME! Mommy said that I was looking all around, and probably wondering what was going on (I was) She said that she knew that I was very happy. (She called it a heartwarming moment.)Mommy said she was a little nervous for me because the only home I ever knew was the hospital.
When the EMT's got me all set up in the house, everyone that was there came over to my crib to look at me and welcome me home. Here is a picture of me a couple of days after I came home: They all wanted to see my reaction to my new environment. Mommy said that I was smiling every couple of minutes. She said that there was nothing like this moment and that she felt so much JOY for me.
My room became what would have been the dining room to a 'normal' family home. Mommy and Daddy said that my room had to be easily accessible for medical equipment and we had to have space for nursing, so that's why they chose to make the dining room my room. Mommy said that nurses could watch me if they were in the living room. Mommy and Daddy just used the coffee table in the living room as their eating spot. Mommy and Daddy did what they had to do to make sure that everyone was comfortable. Mommy said that it worked out well, even though it was a little awkward having people in our house all the time. Mommy never really did get used to it, but right now she misses it so much and she said that you never really know what you have until it's gone. She said she would do anything to have that back again.
Some of the medical equipment that I came home with were 2 ventilators (1 was for my bedside and the other was for going places in my wheelchair), 2 oxygen tanks, a feeding pump, a pulse oximeter, 2 suction machines (1 for my bedside and 1 portable), and a few other things as well as medical supplies (syringes, catheters, gloves, trach ties, tubing for the ventilators, saline, sterile water, and so much more). Here are my supplies, upstairs, where they were kept when I came home: We got supplies brought to our house every month and someone from the medical equipment company came out once a month to check all of their equipment to make sure that everything was working the way it was supposed to for me.
Well it was really good to be in my nice quiet home with my family. Nurses were usually always good with me, if not Daddy would give them a hard time because they were there to do a job and my life depended on them when Mommy and Daddy weren't around. I had a homecare nurse with me for 16 hours of the day. Their shifts were during the day at 7am to 3pm....Mommy and Daddy had me all to their self from 3pm to 11pm...and a night nurse came in from 11pm to 7am so Mommy and Daddy could get some sleep. Mommy said that every now and then a nurse would call out and she hated it because she was always really exhausted. Daddy and Mommy always 'split the shift' so they both could get a little sleep, even though they had to be at work the next day.
The nursing agency came up with the idea to have 'communication books' for everyone to write anything that they wanted others to know regarding my medical care or whatever else they wanted or needed to say to others for whatever reason. Most of the time, Mommy would write how my day went or how many diaper changes I had and things like that so nurses could keep track of it in my homecare chart. Mommy said that most of the time that she was writing my book, she used all of those books to 'remember' things that she might have forgot otherwise. She told me that she never knew why she wanted to keep all those communication books, but she always knew there was a reason and now she found that reason.....for writing the story of my life! Well, Mommy said that she is now at the spot where she left off in my book before she started my blog, so it may take her some time to do some writing, but she will continue updating my blog chapter to chapter. She said to come back and read some of the communication book notes that were written by her, Daddy and some of the nurses...because some of the notes were sometimes mean, but good, because now she just laughs at some of them. Come back soon!