Wednesday, January 9, 2013

Still on O2.

Harlie is feeling much better.  I kept her home from school on Tuesday and she fought the oxygen tubing all day.  She wanted to be free to play.  We gave her small breaks throughout the day.  And even though her sats were still pretty low when off the oxygen for a while, she really seemed fine.  So fine, in fact, that if I didn't have the equipment to see what her sats were, I wouldn't know anything was wrong.  Well, sometimes her nails were a little blue.  But, other than that, she really was fine.

So, after going back and forth with my thoughts for hours and hours - I asked her if she wanted to go to school and she said yes.  So, I let her decide.

She got up this morning with way less fuss than I expected considering this was her first day to wake up early - and considering she was sick.  She willingly got dressed and got ready for school and seemed totally happy to go.  I checked her sats before putting her on the bus and they were definitely still lower than her norm.  So, I started second-guessing myself.  I was thinking (okay, hoping) that maybe her being up and walking around would help get her sats up.  Although it probably works just the opposite.

We recently got a new battery powered, small, portable pulse ox, so I gave that to Terri to keep with her to check Harlie's sats throughout the day.  I thought to myself that she could at least go in the morning and if she had to come home, I'd just pick her up early (the morning school work is the most important).  So, I put her on the bus, signed "I love you" and watched her sign it back from the window and went in the house - totally second-guessing myself.  Like, my stomach was hurting.  I was really struggling with "is this my gut telling me something that I'm trying to ignore" or should I trust what I've learned "look at the patient and not the monitor?"  Thankfully, there is a fire station right next door to the school and knowing that help was just a few minutes away, made me feel better.


And another question - why are her sats still so low when she seems SO much better????  And her lungs sounded clear???  What gives?  I need to send an e-mail to her pulmonologist when I finish this post.

Tom took Cooper to school and that left me in the house ALONE for the first time in weeks.  Ahhhhh....  too bad I had to run off before I could enjoy it.  I went and met some friends for a run, which was great.  As soon as we were finished I checked my phone and I had a text from Terri saying that she was 81 - 82% on the bus, but 75 - 76% later on.  And when she was walking from her main class to her HI class (which is kinda far) she dipped into the low 70s.  She said that she could tell she was low by looking at her (which hasn't been the case so far) and so she made her stop in the hall to get a reading.  After that she said she wasn't going to let her walk anymore.  So, they were going to have lunch in the classroom so she didn't have to walk to the cafeteria.

Earlier I had called the school to find out if I could just bring an oxygen tank or if I had to have doctor's orders.  She said I needed orders.  So, after I got that text, I called her doc and asked for a script to have oxygen at school.  Then I went and picked up the script and went home to get the oxygen tanks.  I took two, one bigger one that goes in a cart with wheels and one small one that you carry on your shoulder.  I was thinking that it's probably safer to have the big one with the cart in school, so it doesn't get knocked down.  The one that you wear on your shoulder doesn't really stand up so great.

Then I took the tanks to school.  After talking with the school nurses (who were great about it) we decided we are going to leave the bigger tank with the cart at school from now on.  And Terri can carry the small one on the bus to and from school.

I was a little curious to see how Harlie would react to having to wear the oxygen at school considering she wanted it off at home.  She seemed to do okay.  She ate all her pureed peaches (so she MUST be feeling better).  I talked to her teachers and they all said she seemed fine and that they wouldn't know anything was amiss if we didn't tell them.  So, I left her at school.  I told Terri I would come back and get them if necessary.

While I was there, the students from another KG class returned from lunch and saw her sitting there with the oxygen tank.  They asked what it was.  And about five stayed right there, saying "hi" to her.  I was very happy to see her wave "hi" back every time.  That teacher said that they noticed that Harlie wasn't at school and they asked about her.  And that's not even her class!

Unfortunately, there was a new student today who started in Harlie's class on Monday.  Today was her first time seeing Harlie and she had a hard time.  I think she was scared of the suction machine and scared of the way her cough sounds.  I know she'll get used to it in time.  Harlie's teacher has a "My Name is Harlie" book in the class and she gave her that one to take home.  Hopefully that will help a little.  Apparently at one point during the day when the little girl was having a difficult time, her teacher asked the class if they thought Harlie was beautiful and they all said "yes!"  I don't remember exactly what happened, but it sounds like it was really cute.

Since I'm on the subject, I've been meaning to give you an update to something I wrote about right after school started.  There was a little boy in the class across from hers who asked Terri if Harlie was a monster.  Well, that little boy loves Harlie now!  They play during recess.  And the day that I took Harlie to school a while ago, he was walking in the hallway in front of her.  Of course, I had no idea who he was.  But, he looked behind him and saw Harlie and smiled.  He started slowing down so she could catch up to him.  They were both totally smiling at each other - like they were flirting!  It was so cute.  I asked him if he was her friend and he said yes.  I asked her the same, and she said yes.

So, while I don't exactly understand why someone would be afraid of her (does she really look that scary when you see her for the first time???) I am so, so comforted to know that her classmates quickly grow accustomed to her differences and see past them.  I'm sure this little girl will get used to her soon, too.  The wonderful thing is that Harlie seems completely unaware that some students struggle with her and her stuff.  She still smiles in the mirror and I am very thankful.

So, while I was occupied with the oxygen at Harlie's school, I lost track of time and was late getting home to get Cooper.  Today was Bethany's day to pick up the boys (we take turns since her son is in Cooper's class and we live just a few houses from each other).  Of course, she had lunch plans, so being the wonderfully flexible and helpful person she is, she took Cooper with her to the restaurant and I picked him up from there.

Cooper fell asleep on the way home and stayed asleep while I carried him upstairs to his bed (that RARELY happens).  By this time it was 1pm.  Then I fed and walked the dog.  Then I went home and made lunch for myself.  Whew!  It was a crazy day of running around.

Thank goodness for Kim - she came over at 4pm today and cut the kids' hair.  I am so super glad that she comes to our house so I don't have to take them.  And Cooper's hair was a mess!  He has so much hair it's unmanageable. Quite frankly, I was a little embarrassed that he went out to a restaurant.  Not to mention that he picked out his own clothes and got himself dressed with no help.  While it wasn't the worst outfit, it certainly wasn't what I would have picked out for him.  I'm seriously trying to let some things go, you know?  But, I can't handle how bad his hair looked today.  It's like it grows at different rates in different places.  It was really awful.  So, she buzzed him.  He looks much better now.

Oh, and yesterday I got a package from Godiva in the mail.  YUM!  It was brownies!!

I wish I could take better photos, but this will have to do.  They are absolutely delicious.  And I love that it comes as a big block and you slice it how you want it.  That's really good because small pieces have less calories.  Even if you eat lots of small pieces.  Isn't that awesome?  Thank you, Ann.  You are the best!  And you make me want to send awesome gifts to people who need a pick-me-up.  Thank you!

Well, that's it for now.  Hopefully her sats will be much higher tomorrow.  I'll certainly let you know!
Christy xo

1 comment:

B-Mama said...

Hope tomorrow is an easier day for both of you! I always got your back. xox