I am copying the emails I sent out to give the full picture of what we have been dealing with the past week. The hospital we were at did not have wireless internet nor did it allow me to access my blog on the computer available. So here is insight to my life the past seven days:
This has been not only a ver ytiring experience it has been the worst experience ever. She is so much pain. They are giving her morphine but it still hurts. I never imagined that I would have to see my child go through this. We had to go down to do a swallow test this afternoon, which did not go well and she will be going back down tomorrow. I have decided that I will not go with her in the hopes that me not being there, she will be more compliant.
She has been on oxygen but seems to be breathing better that she has not needed it for now. She also has decided to use me as her "mental punching bag" I am the closest to her and she has decided to take her anger out on me for the most part. (lots of yelling, dirty looks, and statements such as "I don't trust you") This has been one of the hardest things to deal with and also the fact that I can't help her feel better. There have been lots of tears and prayers. I did talk to her this afternoon to let her know that i know she is in pain and angry but it still does not give her the right to disrespect me and other adults and let her know she was being very hurtful in the things she says. She has apologized profusely and seems to be better.
Pray for strength for me. I am emotionally drained at the moment.
Abby is doing much much better. They have changed her pain meds from Morphine to an ibuprofen type every six hours. She actually slept almost all night, only woke up once to go to the bathroom. SHe sat up by herself and and almost got out of bed by herself. She is also much nicer not being on the morphine. I think the morphine made her personality change slightly. She was just plain nasty to be around on that. She hated everybody. AS I said in my previous email, she was very disrespectful to all adults. SHe said after her swallow tests "these doctors are stupid. they don't know anything." and looked at me and said "you are so mean. who are you? you are not my mother." (you must add some drama to the last one to get the full picture) The phrase "oh my God" was used a lot which is something we do not ever let our children say just to say it. (I just pretended like she was crying out to God at the point and telling her not to in her state would have been pointless and she probably does not remember saying it anyway) SHe also would look at herself in the mirror everytime she got up to go to the bathroom and say "I look hideous." because she did not want to wear a shirt because it irritated her stomach. THis was very heartbreaking and reassured her she was beautiful. She also said "I look like a potato chip" (which made me laugh because she still had the iodine stain on her belly from surgery so her tummy has an orange color)
Today DOug is here and will be a much better day. She has another swallow test today. THis should go much better due to the meds change and I have decided to not go down while she does, in the hopes that she will do much better without me there. (kind of like the same concept as to why I don't want to teach my children at church. They do much better when I am not teaching them there.) going to go get some coffee...I need it.
SHe is now eating!!! SHe is on a liquid diet...not just clear liquids, so she can have ice cream, chocolate milk, pudding, soups etc etc etc. the swallow test went well. Hopefully go home tomorrow but it may be Friday
we might get to leave today as long as she is able to eat without any pain. I am thinking we will because she has been doing great. they are taking her off her IV nutrition and she is still on liquids. SHe is also in a much better mood and we have been more on top of her being respectful. SHe has all her stuffed animals on a shelf and can earn them back a few at a time. She needs to say please , yes maam, no maam, and actually speak to the adults when they come in the room when they speak to her. She said "do you think you need to teach me manners..I did not forget them" which I said, "apparently you did, since you want to yell and whine and demand everything" (she has regressed toacting like a three year old) After the taking away of the stuffed animals she improved greatly...especially when I threatened that the panda would go to if she kept it up. (she has a stuffed panda that is with her always everywhere and traumatic if it gets lost) more updates will follow
We are now at my mother n law's and she is doing well. BAck to her happy self. SHe is very happy to eat without being attached to an IV pole. SHe is walking around and able to get up and down from a sitting position without help. She is just mildly uncomfortable. The doctor has said she can have crab starting Monday and she is ecstatic since that is her favorite food on the planet. THis has definitely been quite an experience. SHe will never have a normal esophagus and needs the aid of gravity for everything to move to her stomach so she must eat or stand to eat and then be sitting or standing for about 15 min afterwards. I will also continuie to not let her eat two hours before bedtime.
God is still in control and has kept me from losing it and having a nervous breakdown through all of this.