So close I could touch it...

That's how I felt about discharge. For weeks we've been anticipating Mylah's discharge from the hospital. I mean lets face it we are ready to be home! All the stress, excitement, & anticipation was building up for this day! TODAY Thursday, September 26, 2012.

We ran into issues with the electrical; being pressured by the hospital to get it done, performed a mini Extreme Kitchen Makeover, various shopping trips for supplies etc. all for today.

At our discharge meeting on Monday we discussed with the docs the plans for discharge, our private duty nursing, follow up appointments, & lastly the vaccines Mylah needed before being discharged. It was highly recommended she get the flu shot & she was past due on other routine vaccinations. I needed to do some shopping so my sister & I left for a few hours & when we returned she had gotten her shots. I think it was really better for me! We celebrated her 6 month birthday; the 3rd one celebrated at the hospital. That night I did what we hadn't done since she was admitted. We left Mylah by herself. Since her admission someone had always remained close by; either in the room with her or across the street at the Ronald McDonald house. We all went home to try & make this mad dash to finish prepping the house, for her arrival. Electrical work had to be completed, the floor needed to be laid in the kitchen, & the house needed to be put back together.

I kept in touch with her nurses on Tuesday & she was fine. My nerves were on edge all day because I have a fear of "not being there" if something happens. I drove back up to the hospital that night for a few hours & left again about 12:45 a.m. after she had fallen asleep. Her nurse mentioned she had a slight fever but it seemed to be going down & was more than likely a result of her shots. Wednesday morning I called her nurse
& was told she would call me back. The respiratory therapist came to the house to set up Mylah's home ventilator & to deliver all her medical supplies. My dad started laying the kitchen floor. I still had errands to run & wanted to head back up to the hospital to see Mylah. Then remembered that nobody returned my call & forgot that I'd given them my work number to call me on. I called my work voicemail & the doctor had left a message, I knew something was wrong because why would the doctor call? She said Mylah had spiked a fever overnight & that morning. Her oxygen saturation had dropped to the high 80's (should be 95-100). They started a IV & antibiotics, took urine, & blood cultures & a sample of the secretions from her trach to test for infection.

I thought "She's not coming home"but let me not get ahead of myself lets see what they say 1st.

I called again, left my cell & house number. I prepared to head back up to the hospital. Finally I spoke to the doctor she said the same thing & the words..."she's not going to he able to come home"

**insert expletive here** I didn't say it but I thought it..

Defeat, anger, stress, sadness,disbelief all set in... I couldn't even cry really. I just laughed a couple times but it was to keep from crying.

My sister & I headed back to the hospital. We were greeted by the unit host. She had been excited that we were going home & was shocked we weren't leaving. She then said she wondered why Mylah had a droplet contact precaution sheet on her door... The look on Toya's face was one of disappointment. I didn't know what droplet contact precaution was but I would soon find out.

Ever seen the movie Outbreak?...

Well that's how I felt. Gown, gloves, face shield, mask for anyone who comes within 3 feet of her.
I walked in to her sleeping, a IV in her head!

Home was so close 2 hours ago. We passed our home inspection & had all our supplies. Now another weekend & that dreaded Oct 1st date will come & go but here we'll be.

I drove home alone, my sister once again stationed in Mylahs room. As I sat at home I cried. It's getting harder & harder. I'm trying to remain calm because I can't get sick & I'm no good for Mylah if I'm sick. It's hard to see tomorrow because I'm afraid of what may come. It's not fair at all & each time I see her precious face I'm reminded of how unfair it is for her. She didn't ask for this, she doesn't deserve this. It so easy for a person who isn't going through this to say "Mylah is strong" or "Mylah has a purpose" I know all of those things. I'm amazed by her strength but as her mother it's hard. To be so close to home only to have the door slammed in your face.

THIS journey...... nothing more to really say.....


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