Jillian Rose’s CP Blog

Second spinal received

September 24th, 2008

Hi friends and family

I am so very sorry for not putting in an update in a couple of days.  I know there are so many people that genuinely want to know how she is doing and how things are going.  Between what I will tell you in a minute and her tummy issues, I haven’t gotten on the computer in too long.  Again, I’m sorry.

Jillian had her second spinal injection (Sunday night at 2:30 a.m. for you).  She is okay now, THANK GOD, but there was a very bad situation that developed.  We went down to the surgery floor for the spinal as usual.  She was very good and very calm.  I noticed that the nurses downstairs (different than the nurses on our floor) were about to give her a different medication that I had not seen before.  I stopped them and pointed out the medication and asked what it was.  But I speak English and they really couldn’t understand……just “don’t worry.”  I insisted more, asked the nurse that came up with us from our floor to ask them NOW what is this medication and why?  There was some dialogue between them and she said “the anesthesiologist wants to try a new anesthesia.”  I said, “Why?!  The other worked just fine.  Don’t change it.  Is that dairy based?”  The medication was milky white.  I mean I’m sure it wasn’t actually milk, but you know what I mean…..we have to be careful because of her tendancy toward allergy.  So Sophie, the nurse, adamantly insisted that she not get this anesthesia.  A lot of Chinese conversation took place.  Between all of this conversation I also noticed about an inch of air about to go in her veins through the IV.  I pointed this out in time and they removed it before it got in.  I looked at Jillian and could tell she was already partly under anesthesia, was already zoning, and pointed this out.  They got her attention by calling her name and it startled her and she started to cry.  You know how when a baby cries, they open their mouth wide and push all their breath out.  That’s kind of what Jillian did, but she did NOT breath back in.  She turned blue right before my eyes.  Literally.  I freaked out, telling them she is not breathing.  There was more excited Chinese conversation.  I’m screaming at them “Take her back NOW!  Go! Go! Go NOW!”  I was about to push her back to the surgery room myself.  They rushed her back.   

The wait was TORTURE.  Pure hell.  Dr. Mike came out and told me she is okay and the color is back in her face and her vitals are all good.  Thank God too that he is personally taking care of Jillian.  He’s THE best.  I asked what happened.  He said he would find out.  I could tell that he was very upset about this.  He went back in to do the actual spinal and came back out afterwards and told me that the problem was that there was too much time between Jillian being put slightly under and all the way under.  He was extremely upset about everything that transpired and said that he was “making the anesthesiologist without job.”  I don’t know if that means a suspension or if it means fired.  I told him I didn’t want him to lose his job, and he said, “no, this is very serious.  He will need to pay for this.”

During the whole wait Luca stayed right by my side in the waiting room and rubbed my back and did everything he could to make me feel better.  He is genuinely a wonderful man and another person that I appreciate so much.

I’ll tell you, if I ever started to take Jillian for granted, I won’t any more. 

When they wheeled her out of the surgery room, she was very calm and relaxed, not crying at all.  My fear was that she would remember being in a state of crying when she “went out,” and would start crying again and not breathe again.  But she was good when she came out, but still pale in the face.  She gave a very small little whine to me, and I leaned over and spoke softly to her, and she was fine. 

When we went out of the double doors into the public part to go into the elevators, as usual, the Chinese people crowd around Jillian.  They were all crowded around her bed, speaking very loudly in Chinese, about 20 of them.  When I covered Jillian’s ears, the doctor told them to be quiet, and they all hushed up and was in quiet awe of the little American girl.

We got back up to our room and Jillian was acting just fine.  Each time she whines less and less.  She was smacking her lips loudly, so we gave her a little bit of water; then she was “ummmm,” and I gave her a banana.  She was SUCH a little trooper.  She handled all by herself making her mommy feel better and more stable myself.  She took her little finger and pointed up at a little cartoonish nurse-bear picture that’s by her bed on the wall…..I knew she was okay then.  I breathed a sigh of relief.

She never went back to sleep though.  She stayed awake the whole time that she was supposed to keep her head down and smiled and interacted.  There were two bags of fluids on the med pole to go drip into her IV, and she never even paid the first bit of attention to her IV hand.  As a matter of fact, I had to keep her hand at a certain angle the whole time, about 4 hours, so the IV would keep dripping, and she never even fussed about it.  So we laid in her bed and played with her DVD player, her opening it and shutting it and opening and shutting it and opening and shutting it……So it was juggling the IV hand, the DVD player when she couldn’t open it one of the five hundred times, and feeding her a little sandwich.  Man, she was a good little kid.  Before the time was up for her to be able to lift her head, about 8:30, she finally fell asleep. 

So it was a super emotional day, like being beat up with an emotional baseball bat, but Jillian cheered us all back up.

Her tummy is still quite an issue.  It’s been going on now for…..well, tomorrow will be a week.  It’s mostly after eating.  But what are we to do?  I mean the poor kid’s gotta eat!  We’re making sure we give her stuff to eat that’s easily digested.  And I already bought some canned spagetti sauce too.   Looks like I’ll be leaving that behind for some other Americans that need a morale boost!  It’s kind of like camping here, it’s not quite as good as what you make when you’re home, but you make do with what you’ve got.  And when I say make do, even as far as the cooking “facility”…..ask anybody here that’s cooking…..a camp fire might be just as convenient!

Yesterday we took Jillian downstairs for an x-ray in the morning, and in the afternoon we took her down for an ultrasound of her tummy.  ………….

Wait…..I have to stop and tell you something cute.  This whole post, I haven’t been able to write it straight through….you know, Jillie needs attention or her tummy hurts, doctors come in (as a matter of fact I’ve been writing this for about two days and just saving it as a draft).  But just now they brought in some herbal traditional Chinese medicine for Jillie to take for her tummy.  It tastes HORRID!!!!!!!  The face she made when she tasted it by itself was priceless.  So they said I could put it in some juice, and I did, and Jillian knew what was in the juice and DID NOT WANT IT.  I told her, “Jillie, you need to drink this to help your tummy.”  She complained louder than I could talk.  This went on for about a minute.  Finally, I said, “Jillian, stop and think….” (This got her attention because some of the cartoons she watches, like Winnie the Pooh and Dora talks about stopping and thinking).  I said, ”Jillian, stop and think,” she finally gives me her attention and quiets down, “when your tummy gets better you can start getting some of the yummy stuff again like cookies.”  I put the cup in front of her with the straw and she drank it right down!  PeeWee is such a character!

Anyways, back to what I was saying.  The x-ray showed tons of air/gas in her intestines.  The ultrasound showed normal.  A stool sample showed that she does not have a bacteria.  For some reason her intestines are just not moving like they should.  I think it’s partly because of after-effects of anesthesia along with the fact that here she cannot pull herself around and roll around and travel through the house.  I won’t put her on the floor here.  A hot water bottle always soothes the tummy pains.  I don’t know what else to say about the tummy gas pains.  We just handle it when it comes up.  I’m going to buy a hot water bottle to take on the plane ride home with us because I doubt she’ll be over it by then since she’s still got another spinal with anesthesia on Friday.

I’ve got a few pictures to share with you. 

  This is Jillian looking at her DVD case (her favorite thing) after getting her IV before the spinal.

  Her Dora band-aid

 And Sesame Street band-aids (as a distraction) because she was such a big girl….

 

Dr. Mike came in our room and hung out with us for a long time after Jillian’s spinal.  Jillian and I are laying down and keeping occupied and keeping her head down.  He enjoyed a cup of “coffee.”  (If we can call it that….it’s tea bag coffee.  Like I said, you have to make do with whatcha got when you’re so far away from home!)  But Dr. Mike has taken a personal interest in Jillian and has never done that with any other patient……ever.  He’s the head of the hospital.  I just love him. 

Carole held Jillian while we were waiting to go for the spinal and she fell asleep.  Our neighbor, Steen, from Denmark, came over for a visit.  He’s here with his wife Bridgette and they’re super nice.  Steen rubs Jillian’s feet and does reflexology on them to try to help her tummy ache.

 

 

This is a fruit called dragon fruit.  It’s a funny sorta fruit.  I’m showing you the progression as it is peeled.  When you peel the first layer it is bright pink, then under that it is white with black spots.  It tasted okay…not the greatest thing in the world.  But it was just an experience trying it!

 

Jillian had no therapy last Friday so we went out for a quick visit to Silk Street.  It was really pretty.  Everything (of course) was silk.  Enlarge the middle picture and see the bamboo baskets (?) hanging from the trees.  This is the day that her tummy ache started.

 

Jillian and LaLa visiting Sesame Street.com on the computer (which is another reason it takes me a while to get out posts because whenever Jillie sees me on the computer I end up having to bring her over and go to Sesame Street.com.  She’s a computer hog.)

 

A few nights back I got to go OUT for a little!  I went with Carole and Alica to the night market.  Jillian had not idea I even left.  I asked LaLa if she could come back that night after Jillian went to sleep and sit with her.  So it was a very cultural experience.  What I’m holding up is some octopus legs on a stick (eeeeewwwww!).  I did end up eating some thin potato on a stick, thin like potato chips, and some beans on a stick.  It tasted pretty good.  Then there’s a picture of the man that made a little necklace for Jillian with her name in Chinese.  Talk about authentic! 

 

Just a few pics hanging out in the room.  Jillie’s fingerpainting.

 

A typical day outside.  But, there have been some days where it’s been clear enough to see for miles, though even then there’s still a little haze.

 

This is a picture outside of the RT Mart, which is where we get our groceries.  Mainly what I’m showing is how everybody rides on mopeds here.  You’ll see tons of them parked outside.

 

This is just a pretty picture (I took it myself, thank you!).  I zoomed in to the top of this little mountain that we can see from the hospital, and on top is a park, with little pagodas and everything.  It was at sunset when I took this, (stuck my arm out the window of our room—risked life and limb too!)

 

Carole might be able to add some interesting pictures.  She’s seen a lot more than I have and is going on some more interesting adventures.  She’s going on a tour of Hangzhou tomorrow and is going to West Lake on Saturday.  So maybe I’ll be able to add some pictures of the ancient temples and stuff for you all to enjoy and see a little more of China.

 

Okay, it’s time to feed Jillie Bean some dinner.  Hope her tummy doesn’t hurt afterward     I don’t know if I’ve mentioned that I do have the ability to read your comments now.  It’s been fixed for about a week.  Only five days before we come home!!!  Again, I look forward to hearing from all of you and passing along your love to Jillian.  

Sending some love around the world….

Tami, Jillian (and Carole too!)

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