Part 8 & 9
Friday morning was here and a few things were going on today. Our neighbors were leaving and we would have the whole room to ourselves again, but not for long. Josh's dad was in town, and the least of my worries were we had some installers coming to the house. Josh's dad would take care of the installers so that worked out well.
Hailey only had 4 doses of IV Steroids left, but when the nurse came into give her the steroids we got some bad news. Before they put any meds through an IV first they have to flush it with saline to make sure the line is clear. Well first when they tried to push the saline it wouldn't budge. When they tried again the IV blew and there was a big wet mess. Un-welcomed surprise number one. Hailey has to get a new IV put in. The nurse that was going to do it said she was going to take Hailey in a separate room and she was going to have 2 other nurses in there to hold her down and then either Josh or I could go in and be with her. This was going to be bad. By this point Hailey was NOT a fan of needles and I was already on edge because no one seems to know what the hell they are doing. Don't they go to school for this? Don't they put IV's and draw blood on babies and little kids all the time? Why is it so hard for them to get an IV or draw blood from my 3 year old without traumatizing her? They have to take the old IV out and that means removing the roll of tape surrounding the old IV that they used to make sure it stayed in place. Her arm is red and it really stinks and it's sticky with residue from the tape. They let her relax for about 10 minutes and then we got to put in the new IV. So I go in with her and she's laying down, all these faces are staring at her and as soon as they pull out the tourniquet Hailey freaks out! I try to get her to not look, but that doesn't work and she is wailing and I am crying and they BLOW THE VAIN. Does she have any left? I guess they can retry a blown vain after 2 days so it's like we are starting over. Now this nurse has one more shot and she fails...again. They bring in another nurse to try and I am done. I tell Josh I am about to freak out and start yelling at these nurses. He tells me to let him go in with Hailey and then after it's done he will bring her straight to me. I switch Josh places and I have to leave the room. There is a lock combination on the door so I can't go back in if I wanted to. While I am outside the door I can hear Hailey crying and they have been in there for a while. The door opens and Josh is holding Hailey and she has a new IV in her right hand this time. It looks a ton more comfortable then the first one in her left arm that was stuck straight on a board for a week.
I snuggle Hailey for a while and the doctors bring in her Miralax. She will have to drink 32 ounces of liquid before lunch. We are trying every which way to get this kid to drink. In the end we gave her some popcorn that helped make her thirsty enough to drink most of it. The morning doctors come in and give us some more test results which all are negative which is good, but doesn't lead us anywhere in the quest for what caused this. We do get one doctor that tells us that she has heard of ADEM cases where people have to assume it was a silent virus. You could be sick and not know it. Have no signs of illness until after the virus takes over and is already gone. So now out of all the things I have to worry about in life as a mother, like germs, or diseases, SIDS, or broken bones, or fevers now they tell me there is such a thing as a silent virus?!? I asked what are some silent viruses? They actually could name off a few. They said the Infectious Disease Specialist will be here after lunch to ask us a few questions.
Good thing I ate lunch before this guy came in. Talking to him was not comforting and it made me pretty nauseous after that. First his assistant comes in to ask all the questions. She knows that we were in the Dominican for 8 days and asked us questions about the trip and if Hailey was in the ocean. Did she have an cuts or scrapes that touched the water. Did she drink the water: Ocean, Pool, or tap. I know for sure she didn't drink ocean water, but pool water I wasn't so sure about. Turns out they don't have the same or really any health codes when it comes to water and chlorine and pools. They don't have to have the same standards as we do in America. There is no health department that is going to come shut them down. So that was a concern but the CT or MRI would have shown a parasite in the brain if it was still there and active. Then they asked us if she was bit by anything most common a mosquito. They are considering West Nile Virus. Again I can't exactly recall her being bit, but I was bit and we used bug spray. The actual specialist came in and I can't understand a single word this guy is saying. He is from Korea and is going on and on about what he thinks it may be and if it is this is what has to happen and the few words I pick up from him are, "very bad." His assistant prints out some paperwork and asks us if we have questions...um...yeah. Like what did that guy say when he was here for 1/2 an hour. Basically if it is a West Nile Virus type thing 1) there is no cure for West Nile 2) West Nile is like a herpes virus. You can have flair ups occur unexpectedly or it can lie dormant in you but you will never get rid of it. So how do we find out if she has these terrible things...? I will give you one guess. That's right MORE blood draws!!! He will put in the order for the draws to happen today.
The rest of the day we spend in the physical therapy room and in the play room. Then Hailey takes a nap and I am again thinking that if this is a West Nile type of thing I will be devastated that there is basically no hope after you find out something like that.
It's almost time for dinner and Josh's mom and dad come back to the hospital with food. The install at the house is done and the dogs are doing okay. The nurses shift change at 7 pm and the nurse from the night before is on again. She is a young nurse maybe 28 and she likes to chat. She tells us that she works here with Pediatrics and she also nurses over at a geriatrics hospital. She says it's really the same thing. At both places you are wiping butts and changing diapers. She tells us stories of her geriatric patients and I am left with my mouth hanging open. One of the stories she tells us is that at the geriatric hospital the nurses station is in a circle in the middle of the room so they are always looking out at the patients. Some are stuck back in another year and they think she's a child of theres and she loves to play along...odd right? There are some that carry wrapped blankets and think there are babies inside. She plays along with that too. That is a job I couldn't have. She says she loves it and it's such a riot because they are so funny. Um...what?
After her tales from the geriatric hospital she tells us that they will be coming to do the blood draw at around midnight. 2nd un-welcomed surprise. I thought I heard her wrong so I repeat, "at midnight? They are going to wake up a baby for a blood draw at midnight?" We have no choice in this apparently so I ask for her to send in the doctor. He can't cancel the order which I understand but why does it have to be at midnight. Why can't we do it in the morning? Bottom line, they will come at midnight end of story. I tell the doctor ( Dr. A) that this is really a big problem for me and that Josh is going to have to stay with me until this is over because I can't handle this and it is going to be 10x's worse to wake her up and do this. I also say that I want him here because if they poke her and miss I am NOT letting them do it again. So bring in your best person. Josh's mom and dad go back to our house and me and Josh stay until they say it's time for the draw.
My heart is pounding and I gently wake Hailey up before anything starts. There are so many people in the room. Me, Josh, 2 night doctors, the phlebotomist, and 2 nurses. They spend at least 45 minutes putting on the tourniquet and looking for veins to pop. Remember when I said she had an MRI and to pull more blood, extra blood, when she was asleep? Well that blood wasn't A) Enough and B) the wrong kind of blood. Apparently the blood we need pulled is a very large amount and also can not be clotted in any way. They think they find a vein on her foot and try that. She pokes twice and no go. I said that's it no more. You spend 45 minutes tying her up and poking her and you can't do it. The Dr. says call SoandSo get her in here. Josh agrees with the Dr. and says while she is already up and freaking out lets try and get this done. Again I am crying and putting a cold compress on Hailey head she is sweating so much. This other nurse comes in and pulls the curtain back to have more room. The little baby next to us is standing in her crib just watching what's going on. I bet she's is thinking, "I hope I'm not next." Again they tie up Hailey to look for a vein. She thinks they can go through her arm one. I ask her, "make sure you can, Hailey has been through enough tonight." She is pressing on the vein with her finger over and over and is ready to poke again. We have been doing this over about an hour and half. She gets the needle out and asks how much they need. When she finds out she asks if she heard them right because that's a lot of blood. When she finds out it's for the CDC she makes sure the vials are ready to be filled and I tell the doctor to take more and the nurse looks at him and he looks at the other Dr. and then back to her and nods to take an extra vial. She's ready to poke. As soon as that needle breaks the skin Hailey arches her back and they push down on her to make sure she stays still. She is crying again, screaming so loud. At first it looks like it's not going to work but then the nurse moves the needle while it's in Hailey's arm and finds the vein and the vials start filling up. They just keep filling and switching vials. It looks like it's starting to slow down and they have to remove the tourniquet to finish filling it. Hailey is too tired and literally drained to keep crying. I told her she did so good that Dr. A is going to buy her a pony. When it's all done they bring Hailey in a popsical and we snuggle her while they have to change her bedding. Not only did she pee the bed, but it was soaked in sweat and there was blood and vials everywhere. Josh calls his mom to let her know if she wants to come she can but I said I would stay the night. It's about 2 am and Hailey is almost asleep. That other baby is still in her crib just looking at Hailey and Hailey tries to say hi. Then the next thing that happened was just out of the blue and kind of funny. Josh is holding her and he burps and says "excuse me" Hailey then says, "chan-cha." which is what I say to her when she burps. My mom used to say that to us when we burped. It was like calling us little pigs. I thought that was funny and I laughed and so did Josh. Then Hailey said, "Hailey funny." They need to give her the IV steroids so she had to go back in bed and get hooked up again. I tucked her in and held her hand and she was asleep pretty fast.
Josh's mom came in at about 2:30 am and told me and Josh to go home and sleep and she would see us in the morning. Again I don't remember going home or even falling asleep. The test from the CDC won't come back for 4-6 weeks so until then we are still waiting and have 2 more doses of the steroids left. After that we can hopefully go home.
Saturday is here and Josh and I wake up pretty early again. As you all know I use coupons. Well I had special ordered some items at Walgreens with my favorite cashier about a week and a half ago and I was suppose to pick them up today. If I did, my cashier would have received bonus points and I could use my coupons to get the items for basically free. I asked Josh if it would be horrible of me if I ran into Walgreens to get my order. I kinda felt like a bad mom. My kid is in the hospital and I am at Walgreens getting free laundry detergent and lotion. Josh's mom was with Hailey and had said Hailey was still sleeping. So I decided to run into Walgreens. I had told my cashier what was going on and her jaw dropped. She is a very nice older lady and we always have chats when I come in. She said she was heart broken and hopes that we get to go home with Hailey soon and to keep in touch. I left her all the rest of my coupons in hopes other will buy the Super Saturday products and give her the extra points.
When we got to the hospital Hailey was still asleep, but she did have one crazy night last night so the extra rest would do her good. Today was Saturday and we have been there a whole week. With some questions answered and medication being given as fast as possible we settle in for a day with no tests. I figure this would be a good day to have some visitors and I let the people who have wanted to come know that we would be here all day and they are welcomed to come. It was such a nice surprise to see familiar faces of people I knew and people who loved Hailey. They all brought gifts and goodies and I was thankful that they found the time to come and see us. I was hoping the visits would have went smoother but Dr.s still came in and therapist came in and nurses came in for medications and asking if Hailey pooped yet. NOPE! It's been 9 or 10 days now! More Miralax on the way!
The baby next door with the distended belly ended up having a major allergic reaction to eating whey protien. She ended up having a procedure called a GoLightly which is basically a flush of the intestine and bowel. After that kid had "let go" of everything inside her she was one loud little 18 month old. Her mom was funny. Her mom would call the baby Miss Norris and I thought that was appropriate considering how we as mothers are always catering to our children.
Hailey slept most of the morning and afternoon. Josh's dad came down and watched cartoons for a while with Hailey while me and Josh were both there. Josh was getting ants in his pants and couldn't stay still. He said he needed something to do. I had another deal I had meant to get in on at Toys R Us and today was the last day for that. They had dry erase boards and crayon sets for buy 1 get 2 free and if you spend $20.00 before the deal you also get a free activity set. So I told him to go to Toys R Us and get 3 dry erase boards with crayons and an activity set for $9.99 and that will give him something to do. He took his dad with him and it was just me and Hailey. Josh's mom would be here in about an hour with dinner.
While Josh and his dad were out Hailey kept squirming and whimpering. You know how a mom just knows that their kid is about to poop? I just had a feeling. Now I knew it had been a very LONG time without pooping and this wasn't going to be pretty. I didn't want her to go in the diaper she had on, I knew that diaper wasn't going to hold up. So I unplugged her from the monitors and the IV that was already shut off. I carried her into the bathroom, sat her down and HOLY MOLY! I can't believe I was by myself. I am holding Hailey up, gagging, and trying to clean her up. You could tell by the look on Hailey's face she was so relieved. I put her back in bed and I called Josh and told him to tell him to bring one of the boards and crayons in as a prize for going poop in the potty. He was just glad it happened and he wasn't there.
Josh's mom came at the same time as Josh and his dad with dinner. We shared our dinner with our neighbors and then Hailey and Miss Norris had movie night.
Our night Dr.s came in and were happy to hear about the poop. They said that the last IV Steroid would be given at 4 am "Sunday Morning" and we would be able to go home Sunday. This was a good thing. I can't help think to myself, I bring my baby to the hospital because she lost her ability to walk, stand, talk, and feed herself and I would think that I should be able to bring my baby home all fixed, but I wasn't going to. I just found that completely odd. Sunday the neurologist would come in and sign off for the Doctors to be able to discharge us for later on that day.
The Night Dr.s explained to us that bringing Hailey home will be good for her but things won't be the same. We will have to continue with the steroid treatments for at least 3 months, we will need to find a rehab center for occupational therapy, speech therapy, and physical therapy. I will need to get in touch with the school district to get Hailey evaluated for special education in school. I need to have a walker at home for her. We need to put her crib back together so she can sleep safely. I need to go to the store and get pull ups and diapers because I have to re-potty train her. We need to get her high chair out because she can't sit in a chair safely anymore. I will be given a list of Dr.s I will have to schedule follow up appointments with as well. My head is spinning! He said he put in an order for a social worker to come in and help me with things I would need and appointments I will have to make. They will help me get a walker set up to be at the house when we go. I think I was about to cry. Josh would go back to work and all of this will be on my shoulders. I will have to remember medications, appointments, take her to all the therapy classes. Little did I know that I would need to add arguing with insurance companies along to that list. (More on that later) Josh's mom said that she already discussed staying in Vegas for a while longer while Josh's dad went back. She will stay for 4 extra days while I get used to being at home with Hailey. I was so glad to have her there to help me. I knew I couldn't do this by myself.
So we are told Saturday night that we will be going home tomorrow and I know I have laundry to do and the crib to get put back together, and the floors to be vacuumed and the groceries to be done and I keep saying, I'm not ready. Josh's mom assured me that the house will be ready and not to worry about that. Later that night our neighbors got to get discharged and we had the room to ourselves again. It was finally going to be a quiet night. Josh's mom stayed with Hailey and Josh, his dad, and I went home. We took so much stuff from the hospital back to the house. I had a list of things to do and I put together "go home" clothes to bring to the hospital tomorrow. I was both anxious and nervous at the same time. I get to bring Hailey home, but it will be like how I brought her home for the first day after she was born.