Home Sweet Home

Monday night Addison was up all night moaning in pain. She was breathing hard, like panting and she felt really hot, her cheeks were red and she was sweating but she only had a low grade fever. I gave her some milk and she vomited again Tuesday morning. I thought she just caught my cold I had over the weekend but she started breathing hard again so I made her an appointment with her pediatrician. I was already in tears worried sick about her and cried the whole way to her appointment. When is she going to get a break and enjoy being a kid? We get into the office and as soon as the pediatrician saw how Addie was breathing she immediately listened to her and sent us straight to get a chest xray. She said when the xray was done to come straight back to the room and not sit in her waiting room. The nurse and xray technicians kept having to give me tissues. We get the xray done and while we were waiting for the results Addison was given a breathing treatment. Her heartbeat was as fast as a newborn baby and her oxygen level was at 97. Dr. Guidroz said she had some stuff in her lungs and since she wasn't able to hold anything down we had to be admitted. We went straight over to the Children's Hospital.
As soon as we pulled into the parking garage Addison started saying things like no more ouchies and we are just here to play. That is what we had told her last week when we were there for the radiothon. The hospital raised $131,000 in 3 days from the radiothon. We checked in and I informed the nurse we have to have a child life specialist come with us for the IV because of her nightmares she has been having from our last hospital stay. She cried the whole time and she was bleeding a lot and that is all she talked about. We get back to the room because they try to do the scary things in a treatment room so the kids are not scared of their rooms, and her IV was still bleeding. Blood was running down her fingers. The nurse came in and fixed it and cleaned off her hand. A few minutes later the IV was leaking and Addison told us she was bleeding but it was just the IV fluids running down her fingers. I was thinking, please don't let it be like this the whole time again. She continued to vomit 2 more times that night and her medications had to be given through the IV since she was unable to keep anything down. She received breathing treatments every 6 hours so between getting all her meds and the treatments we got very little sleep. She was taking steroids and 2 antibiotics. Her nose was suctioned to test for RSV and it was negative. She had blood test done to check for bacteria to see if she had mycoplasma pneumonia and that was also negative. Her heart rate was over 160. That is fast but after her surgery it was between 180-200.
Dr. Guidroz also consulted Addie's GI because of her vomiting. Her GI was not on call so one of his partners came into see Addie. He said the results of ther swallow test from Monday were good. This was not surprising to us because they always are good, it is the food that has trouble not liquid. He said she has had a messed up stomach since before she was born and all of the stomach muscles work together so when you have surgery you interupt how things work and Addie has had 2 surgeries and is high risk for strictures and adhesions so she will always be an easy vomiter and have slow motility. He was basically saying this is going to be her life for us to accept it. But I just can't. I really want to start researching other doctors and I am even considering traveling to get another opinion. I know it will be expensive to travel but what would you do if she was your child. Would you accept this is her life even though she has been through so much already? She has now thrown up over 20 times since her surgery 7 weeks ago. I think about people that are bulimic and how their teeth rot and hair falls out and stuff like that. Is that going to happen to my Addie Grace? I know her esophogeal ulcers have to be back from all the vomiting.
Wednesday afternoon Addison's IV started irritating her and she started acting the same way as last time she was in the hospital. She was covering her arm up with the blanket and crying it was hurting. The doctor said we could take it out but if she didn't drink she would have to get another one. She really hasn't eaten a meal since Monday night. We ordered her chicken broth twice but she wouldn't even taste it. We ordered mashed potatoes, popscicles and a banana for her to try. She ate 2 very small bites of the banana and 4 sips of the popscicle we mashed up in a cup for her. We had maw maw Sheri and paw paw Pete bring in Mcdonald's but she wouldn't eat that either. She was coughing so bad last night she vomited again. Since she hadn't eaten and barely had anything to drink it was mostly phlegm that came out. Her oxygen level was 92-93 all night last night. Everytime she would wake up she would say "I am in the hospital." I could tell she wasn't feeling well because she wanted me to sleep in the bed with her and during the day she wouldn't let me in the bed. Maybe it was because her IV was bothering her earlier.
This morning we ordered her another banana, applesauce and toast. Again she didn't even take one bite. We offered her cheese its which has become her favorite snack. I think she ate 2 and just played with the rest. Dr. Guidroz came to visit and said we could go home because she didn't hear anymore crackles in her lungs. We asked what her diagnosis was and she said she could have aspiration pneumonia from vomiting or it could just be a nasty airway cold. She was treated like it was pneumonia. We were discharged with prescriptions for an inhaler and an antibiotic. She also has to continue to take the Flagyl she was already on for another few days even though it was first prescribed for only 10 days. Today the prescriptions were $80. That means since last Monday the 27th I have spent over $130 on antibiotic prescriptions. I am so thankful I was able to swap one of Addison's southernbelle t shirts for a 13 day supply of prevacid from a friend of mine whose baby's medication was changed to Zantac. That saved us $70.
Since we have been home we have tried to get Addie to eat a cheese quesidilla and french fries. She wouldn't eat it. We offered her chicken for dinner and she ate 3 bites. We are trying to get her to sleep now and she is wheezing so we had her take a puff from the inhaler. I hope we can get some rest tonight. Please continue to pray for her a speedy recovery and guidance for me and Tre' to make the right decisions concerning her care.
I came across this essay I wanted to post the other day too....
WELCOME TO HOLLAND By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.