Greetings from Washington. (from Thea, Jasmina's Mom)
Well this has been an enormous adventure. First I want to say to all parents;
Always listen to your instincts even if it means canceling an appointment with the 44Th president of the United States.
First the good news. All is well and we will go back to New York on Thursday.
But let me start with the beginning.
Through the "make a wish" foundation, Jasmina was granted her wish to meet president Obama last week.
Monday the 23rd, when we were on the way to a clinic appointment, Jasmina spotted a poster of her friend Rihanna who happened to be around the corner from our home to do a signing of her new CD. So that evening after she received platelets, she said that she wanted to say hello to her. I made a phone call and we went. There was a line around a few blocks but naturally Jasmina received a VIP card. A few moments after, Rihanna stepped out and was genuinely overjoyed to see her little friend.
I did not want to make this a spotlight thing or photo opportunity just a quick private Hi/Bye before Rihanna would start her signing. I wanted to take Jasmina home again since her energy has been low. Then it dawned on me that Jasmina would meet Obama two days later so I asked her to sign a CD for the president. She wrote; "you ROCK prez, love Rihanna".
Perfect gift to bring to the white house even though the CD is Xrated but I guess Barack can handle it. Then within seconds all the camera's were on top of them and pictures appeared all over the news, blogs and websites.
The next evening we were on the plane to DC for the BIG day. Jasmina was extremely exited to be on a plane again because we used to travel quite a bit and it has been almost a year. Everything was great. We arrived in DC and were taken by limo to the hotel. I woke her up for her 6 AM medicine in the morning and all was fine. I let her sleep a bit more for the big moment ahead and was on the other side of the room ironing both of our White House outfits when she started complaining about pain at the site of her feeding tube. So once again, I removed the d... thing. This time a huge amount of gas escaped unlike the vulcano-like tummy content a few weeks earlier. She felt better. Then moments later she cried in pain again and I called the lady who was waiting for us in the lobby if we could be a half hour late but she told me that the white house is on a very tight schedule. (of course they are, what was I thinking !!!!)
At this point Jasmina's speech became incoherent and she had pain in her heart. She also wet the bed which is unusual. Then her eyes became unfocused. I pressed the alarm button of the hotel phone and then everything went really fast. The hotel security and Ambulance staff were phenomenal and we could not have lost many seconds. She was not breathing on her own and they put her on oxygen immediately. Then they asked her to open her mouth. By this time having been so long in the hospital, Jasmina can do this in her sleep but when she did not comply and I saw that her teeth were clenched, you know. Something was REALLY wrong.
In the ER, about 15 doctors, nurses hovered over her tiny body, putting tubes and IV's all over the place. Frantically I called Dr. Carroll in NY who knows the doctors here. All came over, post transplant doctor, neurology, oncology etc. Including the VP of oncology who happens to be Dutch. We were in good hands. After many tests and more tests, the conclusion was that she developed PRES. Posterior Reversible Encephalopathy syndrome. The first word that stuck to me was "REVERSIBLE !!!" This PRES is due to one of the medications, Tacrolimus (why did no one ever tell me about this side effect???) and causes swelling in the white part of the brain (I saw it myself on the brain MRI). This together with her high blood pressure caused a seizure. The worst went through my head. Brain aneurysm, blood clot, brain dead, vegetable etc.
So there we are in the emergency room with a social worker on one side of me and a priest on my other side and I am thinking, it was not supposed to go like this. I was supposed to make an attempt to pinch the president's tush at this very moment. (or at least fantasize about doing so).
Later we were transferred to the ICU. There she was, just laying there for two days, out of it. She still has no recollection of these two days. A tube in her nose, her private, her mouth attached to an incubator, in both of her hands and IV and her head attached to thousands of little wires to monitor more possible seizures. Her hands cuffed to the side of the bed like you see in movies about loony bins, so that she would not be able to tug one of the tubes.
The white house called for an update and the president wanted to speak to me but I was in no mood to speak to anyone. I mean whatever can you say in a situation like this.
My friend Robin flew in from LA. They wanted to send her away because the hospital is closed because of the swine flu to anyone who is not a healthcare worker, patient or parent. No family, siblings, volunteers etc. She offered to get the HnH1 shot but was told that they did not ha enough even for the people who needed it. Thank GOD for my new BFF, the Dutch VP of oncology who arranged two swine shots for us.
Then neurology, after studying the brain MRI, told me that she might have some brain damage and vision impairment thing going thru your mind is then, OKAY, not a vegetable, she will just need glasses.
The next morning she was able to follow commands like squeeze my hand etc. Also able to reconize how many fingers he doctor was holding up so they were very pleased with her progress.
Later that day when Jasmina woke up, the first thing she said ( well not said, because she was still not breathing on her own and was not able to talk with the fat tube in her mouth, taped to her face), she wrote down; "How come it is Friday already?" the second sentence; " What happened to Obama?" At first she did not believe me that it was Friday and was angry. Then in no time her attitude was back and she was playing her DS.
That's my girl !!!!! It would not be Jasmina if she did not get out of this. She clearly is not brain damaged and has no impaired vision, HOORAY !!!!
Later the same day I received a call that the white house was going to call me between 5.30 and 6.30 PM and that it would show up on my phone as "unknown".
The call came at 5.05 PM. I of course was not sure since the call came early and on top of that I rightfully presumed that a representative would verify my name and put me "through", so I said, "who's this?" . And there it was......."this is Barack Obama" in the nicest sexiest voice you can imagine. I wanted to say, " say it again PLEASE ?" but was able to contain my excitement ( the president has my cell number, how cool is that?) so we chatted a bit. He asked all about Jasmina's condition, recovery etc, and I thanked him for the oppurtunity. He asked if she was resting and unfortuntely, she was sound asleep and I could not wake her up. So he said that when she is up to it, to call his office and he will talk to her. Jasmina is extemely dissapointed that she did not meet him. The wonderful people at the "make a wish" foundation assured me that it will be rescheduled for a later date so that made her smile again.
That is it for now. We will be home soon !!!!!
. Sometimes we forget how fragile and short life really is.
