Evelyn's home!

We finally brought Princess home!

It is amazing. Yes, I am tired, yes, I am overwhelmed, yes, my house is a disaster, but it is worth it. There is such a peace to having my baby here, not feeling separated by any space and time.

 I love waking up to her, I love bathing her, I love feeding her, I love hearing her snotty breathing.

Though I never liked having my daughter in the hospital, towards the end it was getting very frustrating. Her last week there she spiked a fever, a hospital-borne illness is what they supposed it to be. It was ridiculous that she was in the hospital unnecessarily, all because of some paperwork.

The last Saturday Evee was in the hospital, April13, I had gone to a conference for the women from the church in the area. It was a great conference. The theme was "The Pursuit of Happiness". I was really excited to go, and not just because it meant that I got to miss the 4 hours of soccer games that the boys were playing in the below 40 degree weather. After an uplifting morning and lunch, I got a call from Evelyn's nurse. Evee's secretions had been very thin, so they put her on a medication to thicken it up. That morning, because of the thicker secretions, Evee's trach got clogged with some mucus.
To break up the secretions, they had put some saline drops down her trach and attached her trach to a bag to which they forced some air down her trach in efforts to break up the mucus.
While this was happening, the nurses did not realize that in their haste, they had accidentally pulled Evelyn's trach out of her wind-pipe. Suddenly Evelyn was turning blue, stats were dropping, and she was becoming "slightly unresponsive" (their words, not mine). Fortunately they noticed the trach being out and put it back in.

This was not something I wanted to hear. I did not the thought of my daughter being in that situation, and I hated that I was not able to be there to comfort her. To top it off, this call came in at 1:30 PM, this episode occurred at 8 AM! Why was I just then hearing of it!!!

This did not help my frustrations of my daughter being held prisoner in the hospital.

On Monday, I was talking to our Case Manager of the Waiver program. She was telling me that Waiver could not go through unless Evelyn was out of the hospital. But the conflict was that Evelyn could not get out of the hospital unless she had in-home nursing. She could not get in-home nursing unless she had Medicaid, and she could not get Medicaid without Waiver. Vicious cycle of everyone telling me that they were waiting for someone else.
Todd and I were furious with this. We could not take our baby home because of paperwork, and everyone acted like this was the first baby-trach case they had ever dealt with! I emailed our lawyer (yes, we ended up meeting with a lawyer to make sure that we were doing all that we were supposed to and could). Todd called the hospital, demanding a meeting the next morning with an Attending, floor supervisor, discharge nurse, and social worker. We needed to get things worked out.
Just before our meeting on Tuesday, I got an email back from the lawyer, telling me that a contact in Columbus had helped us get Evelyn's case pushed through. This contact had helped us with the Medicaid on the state level, but warned us that our county's Job and Family Services was extremely slow. This is an understatement. The case worker at the county is not someone I feel very well towards. Todd and I have left her many, many voice messages, but she has never returned them. We went above her, calling her supervisor, and then their supervisor, etc, and never did anyone answer our phone calls. Fortunately, some how our lawyer's State connection was able to pull some strings for us.
When I got the lawyer's email stating that it was her understanding that they got Evelyn's paperwork pushed through that morning, I started jumping up and down for joy. It was such a relief, and it gave us information to bring to that morning's meeting.

Todd was very determined to take our baby home. He was able to get everyone to agree that Evee could go home the next day, provided that we get a night nurse ASAP.

It was a very surreal feeling. I didn't quite believe it. I didn't quite allow myself to believe it. In fact, I had tried to verify with my Waiver Case Worker that the Medicaid had gone through. She wasn't seeing that it had. Again I felt deflated.
The social worker at the hospital got to work calling, and Todd and I got to work calling. The social worker had talked to someone who is a part of the hospital administration and told them the details of our case. They were furious and were saying that if something didn't get worked out by the end of the day, they were going to be making some calls into Medicaid and such.
Todd and I tried and tried to get a hold of our Medicaid Case Worker (the one that works at the county Job and Family Services) and of course we left voice mail after voice mail with no real hopes and expectations that she would call us back. Todd kept calling the chain of command, until finally, he got someone. This awesome individual confirmed that the Medicaid had gone through, but that the Waiver people didn't see it yet for it takes 24 hours to get into the system. Hallelujah! I started jumping up and down in excitement. We had a Medicaid billing number, so that makes it official, right?

I was determined to get a good nights rest that night, for the next night, Wednesday night, I would have my baby to watch and take care of. Though I was super tired and went to bed at a decent hour, I had a hard time falling asleep. I actually woke up at 3 in the morning and wasn't able to go back to sleep for 2 hours. I was just too excited for sleep. I was like a little child trying to sleep with Christmas' arrival coming in the morning. I could not believe that I would have my little angel with me!
The next morning was very surreal. It almost felt like the unexpected morning that a mother goes into labor. The excitement is finally here, you kind of know what to expect, you kind of don't, and joy and anticipation is in the air.
We had to wait for Evelyn's trach supplies to be delivered before we could go downtown to get her. It just added to my frustration and anxiety when the deliverer was over an hour late! So not impressed.

I was shocked with the amount of boxes he brought in. There had to be about 20 of them, and all of this was just for one month of supplies! I was in shock, but very grateful that my super-organizing friend, Melissa, was there for the task of getting them in order for me. She did an awesome job of organizing the stuff, and I would be in a world of hurt right now for I haven't got much time nor energy. I have a feeling everything would still be in their boxes, strewn on my kitchen floor.

After much waiting, we got to Evelyn's hospital room, room 5506. There was my Princess, in her bed, hands together, with a huge smile on her face. She had no idea what was about to happen.
We had packed up most of her stuff the day before, so there wasn't much left we had to pack. I did bring a "going home outfit" along with a different bow for her to wear.

The doctors, nurses, and staff did an awesome job getting all the paperwork in order so that we didn't have to wait long at the hospital. The discharge nurse, Katie, kept saying that she was still in shock with the fact that at one moment the Medicaid paperwork stuff looked like we had a long wait, then suddenly, everything just came together. She said she had never seen it go like that before. I don't know if it was the power of the lawyer, or the power of prayers, but either way it did work.

I teach a Sunday School class to 12-14 year olds. A few days earlier on Sunday, just as class was getting over, I asked the kids if they would remember to pray that we would be able to get Evelyn out of the hospital. I know that at least some, if not all, of these awesome faithful kids did pray, and I do feel that possibly their prayers gave everything the last push.

The staff were happy for us to be able to finally bring Evee home, but they were sad that they weren't going to be seeing her. Her nurse, Tameeka, got very emotional and had to leave the room in fear that she would burst up crying. She said that she was going to miss Evelyn's bouncing smile to greet her every morning. 

We still are working on getting some in-home nurses. I did not realize how difficult it would be to find people. We were approved for 12 hours a day. This will be a huge stretch for me. I do not especially like having my home feel like a business. But I do know (especially now) that it is necessary.

It is so nice to not have to travel back and forth to Cleveland. (The kids got to where they knew all the major buildings)

It's also very nice to not have to only see Evee in the hospital. We did a lot of Homeschool work in the tiny hospital room

and even though the boys were champs, it was hard on them and me.

I am exhausted, for it does require a lot of work to take care of my girl and unfortunately Todd has been working. But I wouldn't change anything. It is worth having her here. Our home actually feels like it's free of stress, compared to how it was. The boys are happier. I am much happier. And Evee continues to be her happy self. She loves to bounce and have all the noise and commotion going on around her. She loves the attention she gets from her brothers, and her dad can barely keep his eyes off of her. I continually get side-tracked for one look at her makes me forget it was I was doing. She can be very distracting, but I can't imagine a better distraction.

What a blessing she is in our home.