The placement surgery lasts about 1 hour and they do it right in the room, but Josh and I have to leave. I don't think I could stand watching any more procedures at the moment anyway. Josh asked if I wanted to go get something to eat while we wait. I can't eat right now, and besides I have had more corn dogs in the past week then I have in my whole life. We decide to wait on the patio. I grab my phone and Josh grabs his iPad and we sit on the patio with our electronic devises and another couple comes out on the patio with their baby. They sit in front of us and they are holding their baby, holding each others hand and talking to each other. It got me thinking. That's how they are coping with whatever they are going through. They are better at it then I am.
Baclofen. I am still waiting to see a result in regards to that. I try getting her to talk to move her arms and hands, but I am not getting far.
We just happen to be at the hospital for Hospital Bingo. We went down to the playroom to participate. If you are unable to go to the playroom they also broadcast it on TV and you can call in with your Bingos. Everyone's a WINNER at Hospital Bingo!
The next day. Hailey wakes up Happy. The Kids Crew comes around and every kid picks a prize for being "Brave Today." She picks a hide and seek "bean bag." You can see her PICC line in her right arm. I decide to dress her in real clothes. Everyone likes her "Super Hailey" shirt.
-Hailey is basically a wet noodle and her head keeps flopping off the side of her wheelchair headrest. I bring that up to the nurse and she tells the Rehab team and they end up sending a representative from the wheelchair company to our room. He looks at the chair and gets on the phone to order us a winged headrest. It'll be waiting for us when we get home. The techs name was Jared and incredibly helpful!
-Still on the subject of wet noodle I am incredibly concerned about giving Hailey baths. We tried in the hospital and it was a 3 person job. Josh ended up getting half way in the tub to hold Hailey up while I soaped her up and rinsed her off. I can't do that on my own, and it's terrible unsafe. We find out that there are bath chairs that are adjustable to be laid down in but insurance doesn't cover those because it's "not a necessity" to take a bath in a bathtub. Insurance.
The nurse calls out PT and they said they will see what they can do. Not even a few hours later they come in and say that a bath chair was donated to the hospital with instructions for it to be given to a child that would benefit from it. They asked us if we would like to have it. This is that chair:
- One last concern was a car seat for Hailey. The one we came with would not be the one she was going to be able to leave with. She has no trunk or core strength and can't keep her head up in her booster chair. They call the Car Seat specialist to come and look at Hailey and see what she might need. They suggest this:
Now by this point I kinda feel as if I had 3 wishes and I just used them up. This hospital was going above and beyond. They cared and they are helpful. This was the hospital we needed to be at. I wish we had been here on August 6, 2011.
On our way home with the 5 of us in the car and a wheel chair, bath seat and 5 suitcases we headed out of Salt Lake. Hailey still hasn't eating and I give teaspoons of water, but I know it's not enough. We stop at a Maverick and pick up one of Hailey's favorites....Pizza and holy smokes she is eating. Super tiny bites but it's going down! Finally she is hungry and I feel relieved until...she vomits! Ugh... So we stop and clean her up and continue to the hotel.
We gather our things and head into Vegas. Hailey sleeps and cries and we let her bite on our hands and fingers. It seems to calm her and if my sanity is saved but I loose a finger so be it right. It was a long trip home but we finally make it and it's a Sunday. She is still not eating or drinking enough.
Josh's dad heads home, but his mom stays to help and my mom is here too. Monday all day she is in and out of sleep but awake most the day, night time comes and she is screaming and crying and having spasms and is in such pain. She was due for her baclofen at 10 pm it was 8 so I give her some tylenol to get the edge off but it doesn't work. More screams and crying. I call Utah at 3 am and talk to the Rehab doctor on call and tell him I gave her the medication at 10 and she is screaming. He said to give her a double dose and then increase the dose thereafter so I did. Well...now all day Tuesday it's like she is in a coma. She won't wake up, she won't eat, she won't drink. She didn't sleep the night before so she is sleeping now. She was due for her medication at 2 am but she slept through it...we all did. 4 am rolls around and she is puking, but she hasn't eaten so there is nothing to throw up. Her eyes are rolling in the back of her head and she can't look at us. We were in the emergency room with in 15 minutes. We are back in the hospital after just being released from the hospital. This time we are in Las Vegas though. What is going on now? What could possibly be wrong with Hailey? I had no idea what I was in for or what Hailey would have to endure now...
To be continued...