You can never really fall into a deep sleep at a Hospital. Nurses are in and out of the rooms every 4 hours, more if the IV bag empties and they have to replace it. They are still doing the neuro checks where they shine the light in the photophobic child's eyes. We did develope a system where I tell Hailey we have to do the light and I am the one who opens her eyes while the nurse shines the light. This seems to be a little less stressful. The nurses say Hailey can't eat after 3 am so if I want to give her food before then it'd be a good idea. I didn't know if I should let her sleep or wake her up to eat. At around 2 am I get a text from Josh saying he doesn't like being home without Hailey there. He saw her nightlight under the door and had to go unplug it. I try again to get some sleep.
I am up and awake by 7 am when the nurses shift changes and they tell me Hailey's MRI is schedule for 9 am. I text Josh and tell him to be here before then and he says he's on his way. As soon as Josh gets to the hospital the Dr. comes in and says the MRI was moved to 11 am! Ugh! So we decide to take Hailey to the play room before the MRI. I decided to take more video because I want to make sure I know if she's getting better or worse. I know that I want her to be getting better so I don't want to have my eyes play tricks of me.You can tell she knows she can walk she just doesn't know why it's not working. You can see the shaking she does. It's not normal Hailey.
We hang out in the play room until they call us and say they are ready to take her up to the MRI. Hailey doesn't want to lay on the rolling bed so Josh carries her ALL THE WAY there. First we meet with the anesthesiologist who asks about allergies to meds and also tells us that Hailey has to be put completely under. You know how you should feel confident when you give your child to someone like a Dr.? I was comfortable until he said, " the medication we use for sedation is Propofol. That's the Drug that killed Michael Jackson." Um...thanks for sharing that little trivia fact doc, but I didn't need to know that! He says the procedure will take about 45 minutes and after it's done she will be in recovery for another hour so we can monitor her and make sure she wakes up.
So now we have to walk to another room, the actual MRI room. And it is quite the trek to get there! You have to go past security and pass the cafeteria (where the anesthesiologist stopped to get a cookie) and the hallways are FREEZING! Hailey is almost asleep in Josh's arms and they say they are ready to take her and the nurse opens her arms to take her. Hailey wakes up and starts crying and saying no no no over and over. The nurse says she'll come get us when they are done. The waiting room is across the hall. As soon as the nurse takes her the tears start again. How do I have any tears left? I try to waste the 45 minutes by messing with my ipod. Luckily they have free Wi-fi. It feels so strange to check facebook and see everyone else go about their business while I am falling apart over here, so I decide to text my sisters again and they each keep me company. Josh is checking work stuff and he keeps himself occupied. I think the 45 minutes will never end and then the door opens and the nurse says it's done. We go back in the MRI room and Hailey is awake and we have to go back to the sedation room where we started to monitor her. They tell Hailey everyone who comes and visits them gets a toy, a new pillow, and a book out of the treasure chest. She picked a beanie baby that was a black lab just like her Chloe dog at home. She also picked a Care Bear book. How long was that book in there? Are Care Bears making a come back? They also gave her Cookies and Juice. She wants to feed herself, but she's still very jerky so we figure out a way for her to feed herself. We put the cookie in her hand and my hand is behind her wrist to prevent her from smacking herself in the face. It works out well and this routine carries on as this is how she has to eat.
You know how some nurses are really super nice and some are NOT? I remember when I was in labor with Hailey and I had a horrible nurse and then I had a great nurse. Well the nurse Hailey had when we got back was a horrible nurse. I really didn't feel comfortable with her at all. When we finally got back to the room this particular nurse comes in with an edible arrangement that my sister Pam had sent. It came in a Dora bucket and a teddy bear attached. She comes in and says, "Someone got a present!" and Hailey is trying to say open it. This nurse then says, "Oh, I haven't gotten the okay from the Dr. that Hailey can eat yet so she can't eat any of it yet." then I say, "well, it wasn't a very good idea to bring it in then was it?" She already ate cookies in the recovery room so why couldn't she have fruit? I ask her to ask the Dr. if it was okay for her to eat again and ask her to please hurry. That was pretty annoying!
I may or may not have given Hailey some of the strawberries from the basket before we got the okay....
So now it's about 2 ish I guess. The head resident Dr. of the whole peds unit comes into talk to us. He said that he saw the scan and he didn't see any tumors or lesions! WHEW!!! But, even with that GREAT news we still don't have an answer...The Dr. says the neurologist will be here at 5 pm to review the scans and talk with us. Until then Hailey can eat and he'll be back later.
In the mean time we are playing with Hailey and trying to keep ourselves occupied. We tell family members it's not Cancer or tumor, but we still don't have a final diagnosis. Today our neighbor got to go home and we get the room all to ourselves, well for a few hours at least. The next patient to come in was another baby.
Finally 5:00 comes and we are waiting for the neurologist and he finally comes in. He asks to examine Hailey and checks her reflexes again and asks her to grasp his fingers and kick or push with her legs. She isn't co-operating very well and he asks if he could talk to us outside...my heart starts racing!
He tells us that from the MRI Hailey's brain is completely inflamed with what he thinks is (encephalitis). Later on in this very long story we find out this is NOT the case. (It takes about a full year to find out what was really wrong...) There is white matter that surrounds the brain and there are times when one portion can get inflamed from after a viral infection. Hailey's entire brain is inflamed. It could be one of 3 things. His first guess is something called ADEM Acute Disseminated Encephalomyelitis, it may be MS Multiple Sclerosis, or Necrotizing Fasciitis. He says if it's any of the three he hopes it's ADEM, but ADEM can turn into MS. He then asks us a few questions that I think are odd. He asks:
- Has she recently been vaccinated? ADEM can be brought on by immunizations, specifically MMR (measles, mumps, or rueb
- ella) When I say she hadn't had that yet because during the time she was suppose to get it we were out the country.
The look in his face freaked me out! First he asks if we are those people that don't vaccinate their children? I said she has had her shots, she just on a delayed schedule.
- When did you go out of the country? Was she near or in the water? Did she have any cuts that the water touched? I tell him we went to the Dominican Republic and she put her feet in the ocean but we were at a resort and were in the pool most of the time.
- Did she get any bug bites? Now I am racking my brain. Did she? I don't think so?
- Did she recently have a rash or a fever? She hadn't, she hasn't been sick since we got back. Has she? I don't think she has?
He says he can't rule out Necrotizing Fasciitis without doing another MRI and it has to be done immediatly. She needs to have another MRI done tomorrow this time of the neck and spinal cord. He tells us he hopes its not the Necrotizing Fasciitis, if it is the outcome is not good. He is ordering blood to be drawn right away. Now I break down and start crying again. What just happened?
So Hailey has to go in for a second MRI. In the mean time she needs to have some MAJOR blood drawn and FYI she hasn't pooped since the Thursday before. It's Monday and things are backing up. This has now become another concern. Along with her right eye which has trouble going back to normal. (It keeps crossing to the middle) An ophthalmologist will be here shortly. They want to make sure there isn't going to be permenant damage to the optic nerve. So before the eye doctor comes Josh is going to run and get Hailey a Happy Meal which makes her very happy. That main Dr. guy (Dr. R) comes after the neurologist and explains why we have to have a second MR I. The second MRI will be about an hour and half long and once again she will have to be completly under. As soon as the scans come back and the neurologist reviews it he will come up with a treatment plan.
Now having a child who has become photophobic and having the neuro checks done every four hours is going to get just a tad worse. They have to turn off the main light and shine a bright light while they look through a huge magnifying glass at her optic nerve. The tests with the ophthalmologist go as well as can be expected. Hailey cried the whole time but the Dr. was a very nice lady. She is pretty much the first in Nevada. She consults with our Dr. R and said right now the optic nerved is blurred. After tomorrows MRI is done and if they put her on meds she will be consulted and then check back in about 2 days.
It's been one heck of a day. I totally thought after this first MRI we would have our answer and a solution. Instead it just lead to more questions. Now we wait...again.
Josh calls his mom. He tells her what is going on now and about the second MRI. He tells her I won't leave Hailey's side. I won't eat, I won't go home to sleep, I STILL haven't showered. I know, that's pretty gross. She decides that she's coming down and will be here Wednesday because we were told we'd still be here for a while. She said that she'll come down and she will stay the night with Hailey and Josh will take me home to shower and sleep.
So now we've seen the eye Dr. and now we have a blood draw looming near. When Dr. R comes to tell us they are sending someone up and they will be here shortly I say to him, "this may not be in your job description, but you NEED to stay and make sure they do this right and even take more then needed." He said he would stay. Now the next 2 hours are very long and very drawn out. It's also very draining to have to re-live it and type it all out. So I will give you the short version.
- The first phlabotmist misses her 2 pokes.
- The second one blew 2 viens.
- The third person to try was the ER Peds Phlabotomist who comes in with some sort of ultra violet light.
- She gets as much as she could but it's almost like Hailey ran out of blood and they still need more. She has to stop. Hailey is freaking out screaming in a cold sweat. I am crying with her. I kept saying I'm Sorry I'm Sorry. They had to turn off her pulse monitor cause it was OFF the charts. Emergency Signals screaming at us.
- They can't get anymore blood so they decide that the rest of what they need will be taken while she is under for the second MRI. They will just start with what they have for the most important labs they had to get done right then. I told them again. Take more then you need tomorrow. While she's asleep. PLEASE!
After this happens (2 hours from when they started) Hailey passes out and goes to sleep. It's about 8 or 9 I assume. Josh is getting ready to leave and come back tomorrow. I break down again. I keep thinking what if this is my fault. What if she caught the measles or the mumps before she got the vaccine? Dr. R tells me he is leaning toward ADEM also, and I keep asking the same questions over and over. How could she have got that? He brings up a possible mosquito bite from the Dominican?
So that night it was very hard to "sleep" I just cried and cried, by myself alone in the dark...again. The nurses that check on Hailey ask me if I am alright and that just makes me cry more. They should really offer parents some sort of valium or sedative for times like this. I think I finally fell asleep at 4 am after the last neuro check. If her IV stays full I should be able to sleep until 8 am. I think I woke up at 7:00 or rather I was woken up at 7:am by a slew of Dr.s and students. Word of Hailey has spread and people are coming to see her in person. I think I read somewhere this condition is rare. Someone told me they saw it on that show mystery diagnosis. After I answer questions, again, they tell me Hailey was scheduled for the 9 am MRI but was pushed back to noon. I tell them doing this messes up Hailey's eating. She could have eaten more now she has to wait. While the students and Dr. R are there they notice one more new thing. It sounds like Hailey's heart has some extra beats. They didn't notice this before or it just appeared. But as soon as they notice this more tests need to be done. They call the Pediatric Cardiologist who says he wants to do an EKG and an Ultra Sound. This will be done after the MRI.
So now Josh is back and I decide to give Hailey a sponge bath and change her sheets. She tries to ask me for "Aunt Sasha's Soap" Since me and her are both devoted Lushies we only use LUSH shampoo and body wash. I had asked Josh to bring Hailey's pink bubble wash and this made her happy too. While she still isn't able to sit up on her own or walk on her own she just wants to be snuggled. So Josh holds her while I change her sheets and we wait for the MRI people to call us. Right now it's about 11 am and I am starting to feel the hunger pains. Just then a volenteer from the Ronald McDonald house walks in and hands me this:
Everyday volunteers bring lunch for parents in the Pediatric Trauma Unit. This was another blessing. When I worked before I had Hailey I would volunteer our time for the Ronald McDonald house to raise money. I remember they had a fundraiser where I was placed in "Jail" and had to raise $1,000 before they let me out. I even got a limo ride out of it. I never thought I would be given the opportunity to use the services they provide. I would have scarfed down the sandwich, chips, and cookies, but I didn't want to eat in front of Hailey so I asked if they could put it in the fridge for me and they did. It was finally time for Hailey to have her second MRI.
The sedation nurses where surprised to see us and asked why we didn't have both MRI's done yesterday? Well now, that's a great question! Maybe they should ask the neurologist that...The anesthesiologist we get today was awesome. He had great bed side manner and he was easy on the eyes. He reminded me of Enrique Inglesias. (SP) He said this would take about an hour and a half and again they would monitor her afterwards.
Well if I thought 45 minutes was a long time to wait an hour and a half was 100x's worse. I can't believe we are doing this all over again. Will this be it? Will they start treatment now when they get the results? So we wait the hour and a half...
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