...and again...and one more time!!!

Cali must really like the emergency room because she's been back, again!  This time for bleeding issues.  She has had this trouble on and off throughout her long hospital stay and started bleeding again the day after getting home from the hospital with the blood clot.  The next day she started passing clots, some as big as my thumb.  By the next day the clots were so big you could hear them splash in the toilet (sorry for the graphic details, but they were huge!!)  so off to the ER again she went.  They found a hole / tear in her vaginal wall that at first they talked about cauterizing closed, but then after getting some more opinions they decided to let it heal itself.  So 6 hours later she was home. 

It's a good thing, too because the 4th of July is my kids' favorite holiday!  Yeah... even before Christmas.  We do the same thing year after year, and if I try to change it up I get an earful.  We relax throughout the day, then have a BBQ for dinner and I'm expected to make a potato salad.  Then off to JHS to watch the city's fireworks where we meet up with the neighbors and more extended family.  Then we come back home, do our own fireworks in the street while eating homemade ice cream.  That's it.  But the relaxing day, the family, the fun and tradition have made this day special for all of my kids. 

But not before we had to get Cali to Instacare!  She woke up with a really bad lower back pain.  Sure enough, she has a urinary tract infection!  Pop her some pills, give her a heating pad and prop her up in the jeep to watch the fireworks and she was good to go.  It made her really tired but since then she's doing a bit better everyday!!

When Cali went to the ER for bleeding, the gentleman that came in to start an IV looked her up and down and said, "You look like you've been in a battle!"  It took 4 pokes before he finally was able to get a line in.  He left, but came back in a minute later.  "I know who you are!  You're Jo Nolast!  I sat with you during your CT scan the first time you came in.  Do you mind if we talk about it?"  He then told her how he had been eating lunch on that Sunday when the charge nurse came in telling everyone they had a trauma coming.  He said he really gets excited for traumas because it gets his adrenaline going and helps the time fly.  The charge nurse knows this and said, "Don't get excited this time.  This is a 24 year old pregnant woman that is 20 weeks pregnant and isn't going to make it."  "And now here I am sitting here talking to you!!!"  She truly has baffled the medical world, and we are so grateful.

We had all our kids with us, a few extra dogs, good food and our 4th of July was awesome!

Opps! She did it again!!

Cali ended up in the hospital again!!  Thank goodness it was only for 24 hours, but it was still very scary!  She may be smiling in this picture, but she was hurting and VERY scared!

Cali was pulling her hair up to go to get her INR levels tested (how thick or thin her blood is) and came in to me and asked, "Is it weird that when I move my arm or breathe in real deep it hurst right here?"  She was rubbing the left side of her neck and when she moved her hand I noticed the swelling.  So, back to the ER!  The cool / interesting / funny thing about this trip was she ended up in the same trauma room with the same ER staff from her first time when she was life flighted.  None of the staff realized it at first, since they were just making sure she was stable and safe, and she looked completely different from the first time.  Once the commotion settled down, someone put 2 and 2 together and then all of a sudden Cali was famous!  They all came in to touch her, talk to her, cry with her, tell her how much they worried about her.  Some just stood at the end of her bed and shook their heads in disbelief that she had survived.  I guess in the ER the staff has to sign a paper saying they won't seek out any of the patients once they leave the ER so the staff had assumed that with as bad as Cali was when she left them, that she had passed away since they couldn't check to find out.  They were all very much in awe to see her not only alive, but looking so good.  One of the docs that worked with Cali in one of the ICU's was in the ER and her nurse asked her if she remembered Cali.  I happened to walk by just then, and when the doc said, "That name sounds familiar...?" I touched her shoulder and said, "Jo Nolast."  She got all excited, so glad she would get to see her again!

I took these pictures when Cali was getting a CT scan. As you can see there are a lot of machines and equipment and from what they tell us they used every bit of it with a whole bunch of people trying to figure out what was wrong with Cali. (We got a little taste of it; while we were there another trauma came in and we were only separated by a curtain.  It obviously wasn't as severe as Cali's was but it was still pretty organized chaos.)

Cali ended up having a few blood clots, the biggest one being behind her collarbone.  Again she was the talk of the ER because she was stumping the doctors.  Two days before this her INR levels were perfect (2.5) and this day they were 1.3; very thick so she was clotting even when they put the IV in her arm.  And her platelets were at 1100 - a far cry from the 400 when she left the hospital a week ago.  Not sure why her levels changed so drastically so quickly, but they are running tests for some different autoimmune diseases to see if she has any of them.  The doctors who didn't know what Cali had been through recently were all ready to send her home because the clot is in a safe place (for a clot) and they knew they could manage it with meds at home.  But the trauma docs once again went up to bat for us and insisted that if they didn't admit her, they would just put her in an ER observation room overnight so all of us - including them - would feel better about things.  So Cali and I spent the night up on the 4th floor.  She was released this afternoon - after a 24 hour stint in the hospital and is very grateful to be home... again!!

A bunch of stuff...

So it's been a while.  Life hits you upside the head sometimes and things like this (my journal) take a backseat.  Let me catch up on some of the things that have been happening.

N turned 1!!  You can't tell by this picture, but we had fun, fun, fun! ( Nobody wanted their picture taken.)  She has sure made advancements since having her heart surgery.  She rolls all over the place and is getting much stronger.  She's even eating from a spoon - what she doesn't spit out with 'raspberries'.  She is highly adored here by all!  And though I can't say she's spoiled, she is certainly loved to the max!

My dad's side of the family has been cleaning out the home my uncle lives in.  My grandma died 20 some-odd years ago and my uncle has lived in her house, with another family member acting as care taker.  He is a few years older than my dad - 65ish? - and has very mild Cerebral Palsy.  If he were born today, or even 20 years ago, he would have no handicap at all, but since he was born at a time when almost all children with disabilities were put in care centers, he is lucky to have the abilities that he does.  He lived with grandma until she died, and she gave him every chance she could to learn and grow.  He wasn't able to finish school since they didn't have any placement for him at the time, so he is on about a 10 year old level in many respects.  Well, you don't let a 10 year old live by himself!  The family member who was taking care of him was having a hard time with his stubbornness, as well as she divorced her husband so SHE moved out and husband (who is only related by marriage) stayed.  Weird, huh?  Well, to say the least, the house was a dump!  I have pictures, but they don't do it justice unless you can add smell to the pics.  Yeah.  That bad.  We all wore masks and gloves and basically threw away, well, almost everything.  My uncle had his say in what he wanted to keep, but even some of those things I'm pretty sure got thrown away when he wasn't looking because they have no value, sentimental or otherwise.  It was the' joke' as we were going through things as to who would find a dead cat (in reference to the TV show Hoarders) and I was the winner!!  We aren't sure if it was a small cat or a big rat, but either way it was an animal and it was quite large!  I found it in the storage room area underneath a 2 inch deep pile of cat poop.  And that was just one part of the storage room.  My uncle had no pipes under the sink in his bathroom, so he put a bucket under the sink and then used that water to flush the toilet, since that didn't work, either.  The family living with him had way too many animals, and they let them run the house.  As we took up the carpet we found beautiful, old wood flooring ruined by piles of poop.  And there were a lot of antique furniture that were just destroyed because they weren't taken care of at all!  It was sad some of the things we HAD to throw away.    BUT... we worked as a family for 2 weeks, we are having it professionally cleaned and having some contractors come in and fix things up so my uncle can move back in.  This time with a cousin who will be able to help him more and will take much better care of him and the house.

Lou is pregnant!  Right now she is 18 weeks along, but at 15 weeks she started bleeding quite heavily.  After a very tense week, they found the source, but not the reason for the bleeding.  She had a pool of blood in her uterus but not in the amniotic sac.  They took her off the blood thinners (for her blood clots) and told her to keep moving in hopes she wouldn't develop a clot, and that she had a 60% chance of losing the baby.  Obviously that was a stressful time, mostly for her but all of us sure felt the scare!!  But like I said, she is now 18 weeks and has stopped bleeding and even started her shots again with no more bleeding.  Friday she goes to a specialist that will do a 'full anatomy ultrasound', whatever that is!  She has a great OB/GYN (let's hear it for Ryan Ollerton!!)  and a fantastic blood specialist who keep in constant contact with each other.  She meets with both of them so I'm sure she will get a lot of information.  When they found the blood pool, they also discovered the sex of the baby, but she hasn't posted that on her blog yet, so I guess I have to keep it a secret, too.  But you can always check here on their blog to find out more.

And Alex.... well, he's being Alex.  When we went to the endocrinologist (diabetes doc) last time, he said that Al's thyroid numbers were weird; one was high the other was low.  I guess usually if one is high they both are or if one is low they both are.  So the doctor wanted me to make sure he was taking his meds (I knew he was, but whatever) and then have the blood taken again 2 weeks from then.  Well, I took him in and it took the nurse 20 minutes to find a vein then she botched the one arm so had to do the other arm, all in a kid that gets super anxious about blood draws until the needle is in, so the poor guy had high anxiety with no 'phew' for too long.  Then the nurse called me a week later and she had mislabeled his sample, so they needed to do it again.  Ahhhh!  I made Mike take him this time; not because I couldn't handle it, I just had too many kids around the house to take with me and Mike had some time.  I didn't warn Mike, though about the anxiety, so Mike came home a nervous wreck :-)    When we got the results the nurse said, "Man, your child is messed up!"  The numbers were still weird, meaning one was high and the other was low, and the high number was so high she had never seen one that high.  When I asked her how rare that was she said she had never seen a double digit number before;  the number is supposed to be 3.  Alex's was 65!   And the other number that was low was supposed to be .9 and Alex's was .06.  Yeah.  He's messed up.  He was already on an adult dose of meds, but they upped it anyway.  So now we wait another few weeks and get tested again!

And last but not least, I got in a fight with the school district.  Yes.  Yes, I did.  It's another long story, and I wouldn't go into details, but maybe someday my great-great-great-grandchildren will need to know how tough I am, so here it goes.  It started with a story on KSL about the school district's superintendent (Dr. Doty) and how he was using intimidation with the employees of the district.  I have friends who have been on the receiving end of this intimidation and so I wanted to get people to go to the board meeting and sign a petition asking for an investigation.  In order to get the word out about the meeting I asked Alex's teacher to send a letter I had written out to the other parents in the class, .  She didn't feel comfortable with that, but sent it to the district's special ed director.  The special ed director (Robin) called me and we set up a time to meet.  In the meantime I wrote to all the special educators in the district asking for anything they wanted me to bring up with her while I was there.  I got 9 pages of concerns and everyone of them came with a plea to keep their identity a secret!  That's how scared these people are.  I presented these concerns when I met with Robin and we had a nice chat.  It lasted an hour and she basically told me she can't do anything about the concerns unless she knows who / where the concerns lie.  I agreed and went home and wrote to all those concerned that Robin wanted us to give her a chance, and that if we stuck together things would get better.  Two days later I get phone calls and emails saying, "HA!  I told you so!" from teachers because Robin wrote to everyone and told them "not to send a parent with an obvious agenda against Dr. Doty" to speak for them and that I "had no official status."  Oooooo.  That hurt!  Who does she think she is and does she not know that parents in the special ed system ARE the official status?  Then the next day I got a letter in the mail from Robin, I guess because that's more intimidating, saying that I had lied and she would no longer speak to me about anything unless it concerned my son directly.  She's a tough one, but she doesn't know who she's dealing with;  which is another part of the story.  Her secretary is a good friend of mine and when she asked her secretary to find my phone number so we could meet, my friend said, "I have it on my cell phone."  So my friend told them that I was "a very nice person but I would fight any fight I had to for my son."  So they were fair warned!!!

So, I am in touch with someone at The Disability Law Center and IF they are doing anything illegal or unethical, I WILL fight the fight.  If they are just being petty and immature, I will let them be and just make sure Alex gets what he needs.  I don't need middle-school-drama in my life! 

Those are the high (low?) lights of the past few months.  Nothing special, but keeping me busy.  Oh, and Kierra went back to work so I get their 2 girls again, now too.  Love it!!!  My 3 granddaughters chillin' with Nanny!!  Throw in a B and an N and soon with school out we will have Al and you better watch out because we are trouble!!