Part 2 & 3
I ended my last post with me bawling after I gave Hailey a kiss and had to leave her for her to get her lumbar puncture. Josh and I were in the waiting room...he waiting and me crying. It's about 12 am on Sunday now and we have been in the ER for almost 7 hours. None of our family members know where we are or what is going on. We decided not to do any phone calls until 1) we know more 2) a decent hour.
So while I am crying on Josh's shoulder after about 20 minutes they come get us and say we can go in and see her. The Dr. said Hailey is comfortable but she is not co-hearant. She said, "basically the lights are on but no one is home." That didn't give me any comfort. She said it'll take up to an hour for her to come out of it. So I go into see Hailey and she is laying in her bed just looking up at the ceiling. I talk to her and it's like she can't hear me. She's just staring into space. The Dr. said by the time she wakes up they should have the test results. If they find the fluid to be clear the next step is to call a neurologist. I ask what they are looking for and they say it could be something like meningitis which the lumbar puncture would tell us, when I looked up what Meningitis was it didn't help any:
nouninflammation of the meninges caused by viral or bacterial infection and marked by intense headache and fever, sensitivity to light, and muscular rigidity, leading (in severe cases) to convulsions, delirium, and death.
I noticed that I haven't even went to the bathroom since I had been there and I really had to go but I didn't want to leave Hailey. Her Dr. said that I should go because I won't have time to deal with a bladder infection and a sick baby. Josh said that we should eat something too, but I wasn't the least bit hungry. So I went to the bathroom and when I came back Josh got himself something to eat. When he was gone I sat and played with Hailey's hair and kept talking to her. I don't remember what I had said but I saw her almost smurk and didn't know if she was starting to come out of the sedation or I was just imagining it. About the time the Dr. came back with the results Hailey started to wake up. She was in such a happy mood and I thought it was completly odd. She's happy, but she doesn't know that there is something wrong with her and we don't know what it is either. The nurse brought her a popscial and she was thrilled until she tasted it and it was rootbeer flavored. She gave the nurse one mean look. I could tell she was really confused. How is there such thing as a gross popscial? So the nurse got her a red one and she was happy again.
Josh is back and the Dr. is telling us that the fluids came back clear. No meningitis and low protiens. She also told us that she took more then needed knowing we would be checking it again and they may need to do more tests on the fluid and they didn't want to poke her again. For that I was thankful. So, no bleeding in the brain, no meningitis, I ask what else is left. What else could be wrong. The Dr. said she consulted with the neurologist and he suggested an MRI to check for brain tumors, lesions, or growths or any kind. Basically the MRI will show the entire workings of the brain. We will need to wait for a bed because they will be admitting Hailey in a few hours. I ask when the MRI will be done and that's when things get un-nerving. They tell me that since there is no immediate threat nothing "life threatening" they may have to do the MRI Monday morning. Due to budget cuts there is no sedation staff on the weekends. I think they only work 4 days a week. I freak out. There maybe something wrong with my daughters brain and because they are short staffed we have to wait to find out what is wrong with her and she's getting worse every hour that goes by? I said I wanted to take her somewhere else then. They tell me she won't be able to leave the hospital. So I asked them if I am just suppose to sit there are watch her hurt? The Dr. tried to comfort me and tell me they will take good care of her when her bed is ready they will give her fluids and help her to be as comfortable as possible. I don't have a choice now we have to wait...
They don't have a bed ready yet for us to be admitted so we have to wait in the ER. It's about 1:45 am and Hailey is wide awake. They try and get her to stand again and no go, by now she isn't even able to sit up by herself. She's still shaking.
Finally about 2:30 am our room is ready. Hailey is still awake but she's yawning. We get to our room and 2 doctors and a nurse come in to have us explain our day all over again, any past history, and the same ba-zillion questions all over again. One of the Doctors seems to be very concerned. Dr. Vicki becomes very close with our case and in the future ends up being with us through almost every single hospital stay. They tell us there may be a chance that we will get to have the MRI later in the day so Hailey won't be able to eat until after it's done, but they will let us know. While the Dr.s are examining Hailey they add a new symptom to the list. They now say Hailey is Photophobic . They try to check her eyes and when they shine the light in her eyes she screams. They say she may be having a migraine and the light is making her sensitive. Imagine having a migraine and having a light flashed in your eyes...ugh I don't know if my heart can take this. They also check her reflexes and nothing happens when they check her knees and feet. That freaks me out.
The nurse goes over the rules with us. Only 2 people at a time are allowed in the room and that includes parents. So if me and Josh are both there no one else can be in the room. Parents have to leave the unit to use the bathroom. Meaning if I am the only one there I have to leave Hailey alone?! Only one parent can spend the night and visiting hours are until 10 pm that includes parents. They were extremely lenient with the rules though, I will go into detail on that later. So it's 3 am and Josh is getting ready to go back home and said that he'll get me something from the cafeteria and that I should eat. 2 reasons I couldn't eat. 1) I just wasn't hungry. I was more worried sick. 2) I had recently had my wisdom teeth pulled and I had holes in my gums and I didn't have my water pik. I didn't even have my toothbrush. I hadn't even showered that day. The day this happened I just brushed my teeth and left remember. So I didn't want food, and I didn't want to leave Hailey's side. She finally fell asleep and Josh just left and now I am alone with her sitting in the dark watching her monitors. I can't do this on my own and I break the rule of not telling anyone until we know what's going on. I text both of my sisters. They know I am freaking out, but they are there to talk to me. Well, text with me. I tell them I can't call cause I would just cry the whole time and they are alright with the texts.
I don't remember sleeping. I remember they came in every 2 hours to check her temp, size of her head, heart, blood pressure and eyes. We had a roommate who was very quiet. I barely knew anyone was there. I waited and waited for Josh to come back to the hospital. They said he "couldn't" come back until visiting hours which was 10am, but I called him and told him to come when he wakes up. I emailed him to bring me a few things and some tylenol because my head was pounding! The Dr. we saw last time came in at 7 am with another doctor and told us no MRI to be done today but will be done the next morning. I almost forget what day it is. They say if she's up to eating they will bring her a tray and try to relax and maybe visit the play room with her if she's up to it. I call Josh and let him no there will not be an MRI today, but Monday morning and I let my sisters know also. I ask them if they could tell my parents what's going on. I don't want to answer a million questions that I don't have answers too and I am still bawling every time I try and talk about what's going on. Josh calls his family and now everyone is very concerned. Tomorrow is the MRI and hopefully we finally get closer to an answer of What Happend to Hailey?
So now we are waiting for Monday morning to come along. It's Sunday in the hospital and I finally see who we are sharing a room with. It's a 9 month old baby with several things wrong. She was born with a hole in her trachea (or her throat) a cleft palet, and scoliosis. She was recovering from the surgeries she had to repair the hole and the cleft. She had a feeding tube and she had the softest sweetest cry. She had been there for what I understood was 30 days and two weeks. The man who was with her was her uncle. He stays the weekend while the mother stays M-F. They spoke only spanish and she lived in San Diego and was mainly by herself there 24 hours a day. No other family, or friends by her side. When we were both alone we would chat. It wasn't much of a conversation since she only spoke spanish, but we got the jist of what we were talking about. She actually got to take her daughter home a few days after we arrived.
Hailey is getting worse by the hour and I am so frustrated it doesn't seem like they are doing anything. They want us to have Hailey try and sit up and get out of the laying down position for at least an hour. We are suppose to try and move her legs and arms. Right now she's just lying there. Her speech has slowed down again and we notice when we feed her that she can't grasp the food. When we put it in her hand she tries to bring it toward her mouth but her hand is jerking and she hits her face.
My sister Sasha comes to visit and I think I closed my eyes for 15 minutes and took a nap. Sasha just keeps reading books to Hailey. The same ones over and over and she doesn't mind at all.
One thing the doctors ask is if Hailey usually lays down and puts her legs in the position she has in the photo. Like a frog almost. I never noticed Hailey do that before. I tell them no and ask if there is a reason she would be doing that. They said she MAY have swelling or pressure causing her to lay that way. By this time, Sunday afternoon, I still haven't left Hailey's side. When she falls asleep Sasha takes me to the cafeteria because Josh and her are insisting I eat something...anything. I still don't have an appetite but we go to the cafeteria. The hospital food at UMC is disgusting! I try a bit of the "burger" and can't bare to swallow it. It tasted like wood. Then another problem arises. Every time I chew I get a sharp sting under my tongue and guess it's from my wisdom teeth. Another reason I can't eat, it hurts! Sasha buys me a Cherry Coke and I consider that my meal replacement.
Sasha stays for a while and encourages me that Hailey will be fine. Think positively, try and rest, and try and eat. I can't bring myself to go home and shower so I take "bird baths" at the hospital. Monday can't come fast enough for this MRI to be done. I keep wondering what could be wrong? A lesion, a tumor? My poor baby. I am defiantly not strong enough for this. I get texts and emails from friends and family. My sister Pam who lives in California arranged for people from the church to come and give us blessings. I am thankful to her for that. I am also thankful for her husbands uncle, Sarah's husband and also Sarah's father who came down to do the blessings.
They still haven't given Hailey any medication except for some motrin in case she is in any pain and not able to tell us. Josh talks to his mom who had asked if he needed her to come down. His mom and dad were planning on going to Michigan that coming weekend. Josh can hold it together pretty well until he talks to his grandma. Hailey and her Granny are VERY close. She is closer to Granny then to anyone else. So Granny is having a hard time and can't help but cry which leads Josh to get teary eyed.
As far as we know the MRI is the magic key it will tell us how we can start to help my baby. Tomorrow morning couldn't come fast enough.