Home, Sweet Home!!

Kathy- I am drop dead tired and will not call you today, but we are home and I got lot of valuable info from P/T and O/Ts. Tomorrow I will post what Physical therapist told us and what ocupational therapist thinks about Regina. -

But here I go.

You wont believe your ears when I tell you about my days.
It started 6am on Wednesday morning.. I woke up, got ready and Regina and I headed to St Joseph. It was 7.14 when we entered. We were only ones there. It was 7.40 when we got invited in, and 8 am we were escorted to our waiting room. They gave us nice room separate from other patients.
So now you wonder, what so special about this day. Just hang on. I’ll get there.
We waited and waited, saw many different nurses and I told Reginas story about million times. Ugh. We waited more, saw couple of doctors, who told me that they want to admit Regina because they just want to. Lol.
Well, it was 3.15 PM when we finally got a word that Room is ready and Reginas MRI is ready to start. What do you think how happy I was to finally hear those words. LETS DO IT!!! I waited from 8 am till 3 pm in one small box doing nothing but watching Jurassic Park, Who framed Roger Rabbit and colored.
Nurses had no answers to me, they just said doc’s are trying to make some sense how to proceed with Reginas case. So , her MRI lasted about 2 hours. Good thing about it was that I was allowed to stay in the same room Regina was getting her MRI done. MRI was the loudest sound ever. Her poor ears, I know she was sleeping and did not hear a sound, but oh boy, that MRI was one loud thing. Luckily I was given earplugs and a pile of magazines. I was even given pillow and a blanket incase I will fall asleep.
Finally MRI was done and we headed to the recovery room. We waited and waited and waited and waited. We waited from 5 till 7.30. Nobody knew what to do next. Nurses had told doctors that we had left st Joseph and they don’t know where we are, Recovery room nurses were trying to reach doctor who wrote orders for Regina. Everybody was frustrated because nobody knew nothing. I was frustrated and crying, Regina was mad and hungry and I was not allowed to give her any food because recovery room nurses told me not to because they have no orders. Finally they took us back to ER gave us some food- FOOD. Funny thing is. ER nurse gave cook instructions not to send any nutty foods upstairs. “ SPECIAL PRECAUTIONS”. Guess what?? When we were ready to leave ER to being admitted around 8 pm, food delivery girl showed up with a tray that had paper on top of it- ALLERGIES TO NUTS. And you know what she made for Regina- PEANUT BUTTER AND JELLY SANDWICH. At that point I was so mad and tired I said nothing. Nurse saw it and helped me find Regina some try food, because cafeteria was closed.
Finally when we got admitted to room 303 doc Wang called and congratulated me . I had no idea why he did it, so I asked what is the occasion. Lol. He said that MRI was clean-brain and spine both looked fabulous. He knew it about an hour and he thought I was informed about what was going on.
SURPRIZE!! I was not . Thanks to Dr Wang I finally got some piece of mind and calmed down. But I was furious why nobody told me the good news sooner. Why they made me wait and wait and wait and wait. Why recovery room nursed did not give me more info even though I requested , why why why why.

. We were being admitted overnight. Doctor showed up 7am. Told me some neuro blah blah blah blah docrtos have to see her and consult with me what to do.
11am- nobody is here. Nurses are telling me doctors are making rounds, but nobody showed up in our room. I am mad- again.

Finally I called Dr Wang. Kathys. Sister, who has been very helpful with everything, showed up. Whenever she was present everybody had answers to my questions. lol Well of course I was on a edge of tears- and I did shred little of those tears. I got the nurse to come into my room and oh boy, she had info for me. I bothered them the whole morning asking questions why, who , how long and non of them had answers for me. Why did they suddenly had answers to all of my questions? Was it because somebody else was in my room , was it because Dr Wang had called them or was it because they were sick of my constant persuasive pushy behavior . That is the mystery of room 303. Well, who cares now anyway. I got all my questions answered. Of course doctor showed up also and I got to know the plans for Thursday. They will send physical therapist up here, because Regina may need some physical therapy, then they will do echo on her, because when she was hooked up on to monitor it had shown some heart beat irregularity. And then we will make appointment to see neurologist. It is 1 PM right now. I was told we will stay here until late afternoon.
“Deep thoughts”
Here is like- Oh, Your kid had brain tumor. Let’s see if you have it too, let me feed you some really interesting information, and if you can not understand what I am saying to you, then you, mom have tumor for sure.
“ End of thought”


Don’t mind my negative mode. CHOC is the best hospital around here, and gives hope to lot of the kids. Third floor here is dedicated to cancer/ chemo patients. So I am feeling somewhat overwhelmed again. Kids have green masks on. They walk around hospital holding poles with medications, everybody wears LIVESTRONG bracelets.
There are hand washing stations everywhere and if you enter the unit from hallway you have to wash your hands for 3 minutes( auto wash).
Hospital is nice, clean and contemporary. There are lot of positive things about this place, but since It is me we are talking about ,I see negativity in everything ;)

Anyway, I wrote all this while being in the Hospital. All the emotions were fresh and untouched. All I went through is only my problem. Everybody else probably has only pleasant experiences with CHOC. If you have issues with what I have said ,email me and we can work things out. If not, that is your problem Lol

Tune in for more Tomorrow when I tellyou about our physical therapists thoughts and advise. That was our only positive experiense today :D