- Hailey will stay in the hospital and receive 10 doses of IV steroids 12 hours apart starting ASAP. Along with that she will need a Zantac like medicine 2 times a day as well. That will help the lining of her stomach so she doesn't develop ulcers since the steroid will be so strong.
- We need to get her moving again and a physical therapist will come in to help move her legs and arms.
- She is still photophobic and her nerves are shot. She has been shaking and jerking non-stop for how many days??? 4? Talk about a work out. She will have an occupational therapist come in and show us what needs to be done to help with that.
Part 6 & 7
After waiting for the 2nd MRI to get done, they call us out to say she is finished and they are heading back to recovery. Hailey is still asleep this time. Yesterday she was already awake when we came into see her this time it's different. The anethesiologist said she'll be waking up soon. It was a longer procedure so she'll take longer to come out of it. While waiting in the recovery room Hailey starts to stir, but this time she is in a cranky mood. She's trying to cry and to wake up, but she's still sleepy. I ask if I could hold her and they let me. We are the ONLY ones in the sedation recovery room. It takes Hailey nearly 2 hours to fully wake up and after they monitor her for a while they say they were able to also draw blood for the rest of the lab tests. We have to head back to the room to get her EKG and her ultra sound done on her heart. They should be in the room shortly after we get back.
Back at the room they asked if Hailey has pooped since we've been there and I say nope. She pooped last Thursday and today is Tuesday. They say they want to give her some Miralax to help her go. She has to drink 8 oz in one hour. She's barely awake so I don't know how that's going to go? Turns out every time you are sedated it slows down your GI track.
The EKG person is in the room and this is one of the quickest tests Hailey will have done. They stick these tabs all over her and basically plug her into a machine and it prints out the heartbeats. As soon as that test is done the Ultra sound lady comes in to do her test.
It was pretty crazy that we were able to actually hear the "extra beat" which to me sounded like it was a skipping beat. Like her heart reset itself. It sounded like beep beep beep....be...beep beep beep over and over. The cardiologist will review the tests and get back to us. Mean while we are waiting for the Neurologist to give us the 2nd MRI test results. But, we got to wait until 5 for him to get here. Meanwhile we are relaxing and Josh brought his iPad so Hailey could watch her beloved Disney shows.
By the time the neurologist comes I am so super nervous. Can you imagine hoping your child has one problem over another problem because she HAS to have at least one of them? The neurologist finally comes in. He says the inflation has not spread to the brain stem or the spinal cord so his diagnosis is ADEM. The treatment is as follows:
So then I ask the neurologist what the prognosis is? We don't know why this happened. We don't know if there are long term effects? We don't know if this will come back? Will it develop into MS when she's older. Again, more questions then answers. Now remember this guy made me cry yesterday. He can not give me good news without giving me worse news to go with it. Bottom line he says, " I am not a psychic. I can not predict the future. We have to deal with what we know now and take it day by day. This is very serious. VERY serious." Here I am looking for the silver lining and all I get is Hailey isn't as sick as she COULD be. He tells us we have a VERY long road ahead of us. We will be starting over with her. Reteaching her how to talk, walk, run, eat. How long is a very long road?
He will keep coming to see her the rest of the time she is here in the hospital and he will go start the prescriptions right away. She will have her first dose of steroids tonight. Dr. R comes in to explain the steroids and the side effects...Side effects...great now what? Steroids can make kids super hyper or super depressed. Most kids will want to eat and eat and eat. We will have to monitor what she eats and how much. She will probably swell up and retain water. She might have temper tantrums because of bursts of energy she won't know how to deal with. She might start crying out of no where for no reason. Sounds to me like she'll have major PMS. I get that way sometimes and he agrees. Steroids are just hormones on a larger scale that your body isn't use to. He is hoping to even see some improvement in as soon as 2 days. Hopefully the jerking stops first.
Your brain is the main frame to your whole body. Yes you need a heart, but doesn't your brain tell your heart to beat? We don't know what long term effects Hailey will have from this, but we do know that MRI's will be a part of her life from now on. I guess this is the point where Josh told me I could breath now. I tried, still can't.
Josh leaves to get us some dinner it's about 7:00 pm I totally forgot I had my Ronald McDonald house lunch in the fridge...Josh finds this little Pizza Place across the street and gets us some food. I am missing home cooked meals, but it's just us here. Tomorrow Josh's mom will be flying in. Now I am nervous again, they are going to make me leave. I am not looking forward to that...
I get a text from my dad asking when he can come visit. Now that I know what's going on I can talk without crying. I call him and we talk for a bit. My dad may look big and intimidating, but when it comes to dogs or kids he can break down pretty bad. I told him Hailey just needs time right now. She sleeps a lot and there are doctors in and out all day. If he wants to wait until we get home to visit that might be better. Then the phone goes silent and I know he's crying. It's pretty hard to see a guy cry especially if it's your dad and the last time you saw him cry was when you were in the 4th grade and your dog died. Finally he said that was good because he doesn't think he would make it. He has to get off the phone because he says his blood pressure is too high. I send him a photo of Hailey Smiling and it really made his day. That night I think I sleep a few hours in a row.
Wednesday is here and Josh says in the next day or two he has to go back to work for a big meeting that has been in the works for months. My mom wants to come visit. After a few hours Josh would be back soon to take her back and we get word that Dr. N would be back to see us. She's the eye Dr. She wanted to know what meds Hailey was on and when they told her about the steroids she said, "good that will help with the blurry optic nerve."
So Josh takes my mom back home and when he returns he walks into the room and Hailey looks over at him and opens her eyes really really big and smiles. Josh says his mom will be here around 10pm so I need to try and get what needs to go home ready. I keep saying I am not sure about leaving her. He says she'll be fine. She will be asleep the whole time and we will be back before she wakes up. I ask him if he promises and he says yes so I feel a little better, but still nervous.
I decide to sit down and close my eyes just for a few minutes until Josh's mom gets here. Turns out I passed out for 2 hours. I hear the door open and I think it's just a nurse but Josh's mom is here now and we run down the day for her and what goes on and how Hailey has gotten used to them coming and listening to her heart and doing her blood pressure and temperature. She should sleep through it all. I introduce Josh's Mom (Brenda) to the nurses and the night doctors. They ask me if Hailey has pooped yet...nope They said they will give her a double dose of Miralax tomorrow. Now it's nearly after midnight and this will be the first time I have left the hospital since Saturday. It's been 5 days and I have to go home without Hailey. I kinda feel nauseous.
We get home and I really don't even remember the car ride. I know I cried, but I really don't remember the drive. When we get home my 2 dogs FREAK out and are sniffing like crazy. I go upstairs take a shower and get some stuff ready to take back tomorrow. I put my pajamas on and lay in bed next to Josh. I tell him that I doubt I will even be able to fall asleep...he said I passed right out.
It's Thursday morning around 6 am and I don't even remember falling asleep last night. I wake up in my own bed and I kinda hope the last almost week has been a nightmare I just awoke from...It's not.
I wake Josh up and ask if we can go back to the hospital now? He says sure and we start to get ready. We get to the Hospital around 7am and when I walk into the room Brenda is holding Hailey while she sleeps. Josh has to go back to work for at least 1/2 a day so Brenda will stay for a few hours and then go home and sleep. She will be back around 6pm with dinner. After they both leave, me and Hailey start our day and with help and pillows she can sit up WITHOUT shaking! When the Dr.s come in for the shift change I make sure they note that. They said that they have called a Specialist for Infectious Diseases to come in and ask us some questions. They will be here tomorrow. They want to cover every test that may tell us what caused this to happen.
I give Hailey another sponge bath and brush her hair. We have the day all to ourselves. They bring in Hailey's breakfast and it's pancakes and bacon. It smells horrid but Hailey looks forward to eating it. She ate the WHOLE thing! Must be the steroids? Now she wants to take a nap.
An occupational therapist comes in to look at Hailey and try to put something together. She notices Hailey has a hard time grasping items with her fingers as her hand kind of goes sideways when she does it. We will practice picking up items like m&m's. That is some awesome therapy I tell ya!
Most of the rest of the day is pretty uneventful which I am thankful for. We do get a guest today though! They brought in a therapy dog and this was a highlight for Hailey! She has missed her two dogs so much. I had pictures of them hanging up and she would point to them all the time. When the therapy dog came to visit I was holding Hailey in my lap and Hailey would put her feet out to "pet" the dog. Talk about a well behaved dog! When the dog sniffed Hailey's toes Hailey laughed. She hasn't laughed in nearly a week! Another blessing. Hailey was sure sad to have the puppy have to go, but I said she was going to go fix another baby and then Hailey said, "fixa baby." Yes the puppy will go fix a baby. She then said, "bye puppy" it was slow and slurred and I may have been the only one to understand her but I know what she said.
We have our lunch together and watch more Disney Cartoons and then Josh comes back from work. He was super bummed he missed the therapy dog. SUPER bummed. When Hailey sees Josh again she opens her eyes SO big and tries to say Josh! The neurologist is back again at 5 to check reflexes and see if there is any improvement. He asks if we have made her stand yet and we say no so we have to do it now. We stand her up and support her and he noticed she isn't leaning as much over as she had before, but her reflexes are still very week and she can't bare weight yet. He will be back again tomorrow.
The physical therapist comes by and drops off a walker for Hailey. We need to try and have her use it. It's pretty impossible with her hand bandaged up from the IV so we try and figure something else out but now that we look at her arm it kind of wet. We let the nurse know. If it leaks more tonight we will have to replace it.
So after dinner is over we clean up and I say I want to stay until Hailey falls asleep and then go. The night doctors come in and ask yet again. Has she pooped. Nope and it is going to be 1 week since. More Miralax. Does this stuff even work? Hailey has been taking it since Tuesday and nothing. They will double dose her again tomorrow morning. Turns out tomorrow is going to be a big day. We will have physical therapy, occupational therapy, and then talk with the infectious disease specialist. Josh's dad will also be flying in. What we didn't know what that tomorrow was going to be another traumatic day. 2 unwelcomed surprises awaited us.