Saturday, June 23, 2012

Dental Nightmares

I know it has been quite some time since I last posted.  It always seems that I'm running around, participating in life and when I want to write, I fall into bed exhausted.  Many times, I'm putting my girl to sleep and I fall asleep before she does.  So, things have been pretty good, in general.  Gracie has been healthy until last weekend when she had a nasty sinus infection.  She had complained about a toothache the week before and we went to the dentist on that Monday but he didn't think it was anything to worry about.  Fastforward to last Sunday when she has a high fever, we go to the ER to be on the safe side and unfortunately, we have a dumb doctor...seriously...he asked me if my child was a Down's kid and I said, "No, she's Chinese" and let me tell you I wanted to add, "dumba**!"  He neglected to look into her nose but he did check her ears.  So we went to our favorite Dr. O and she saw a starting of an ear infection and a sinus infection.  She also had us go to another dentist because she was concerned about G's toothache.  So, the next few days, the toothache goes away with the antibiotic but we still go to the dentist.  They are able to get x-rays and see bunches of cavitites and soft enamel.  The verdict:  10 crowns and 4 baby root canals!  Holy cow!  So, we'll be seeing a 3rd dentist next Monday.  I'm hoping for somewhere in between. 

I'm doing summer school this summer.  It's for half days and it makes you appreciate the students you have.  I have met some neat kiddos though.  I think they like my kookiness.  It appeals.  So far when I have asked to take out their piercings or cover their tats, they do it, even without rolling their eyes or snorting at me. 

I have been wanting to do small little home projects in the afternoons but I haven't had a chance.  I've had doctor appointments for both me and G.  G has been having an especially rough patch with meltdowns.  It started when her teacher was abruptly let go.  We made a card but I don't know if that's going to give her the closure she needs.  It only seems to happen with me or with me and my parents.  She's at a very independent phase but at the same time she will act or talk like a baby  (whining especially).  We went to a resource fair this morning for kids with special needs and she melted down in the parking lot on the way home because she asked for something and I told her that we would have to wait on it.  Afterwards she said she melted down because she was hungry...that may have been but it was more about being bratty because she didn't get what she wanted.  She is used to people wanting to do everything for her.  We are working on that.  We are visiting with a nice lady who is helping me gather more tools for my tool box in dealing/not triggering meltdowns.  So far, everything is okay.

Gracie is taking swim lessons.  We had to miss this week and one next week because of being sick and a doctor appointment.  She's enjoying it but I'm hoping it's not causing her to be sick.  Thankfully her oxygen sat levels have been low 90s which has been awesome.  She has an incredibly amount of energy that I want to bottle.



Monday, April 23, 2012

Liver in a quiver

Did you know that a person who has a fontan most likely will experience some damage to their liver?  Shouldn't that be something that is discussed with the parent beforehand?  I honestly didn't realize that the fontan could cause liver issues.  I knew we were checking her liver function once a month because of the bosentan she is taking for her pulmonary hypertension.  So it seems that there is some sort of mild concern over the way her liver feels...it feels worse than the last visit.  I think he was also concerned that Friday morning, before our follow up appointment, Gracie threw up four times, one in the car on the way to the appointment.  She's better now and has a lot of energy.  She went to dance class and bowled Saturday at a friend's birthday party.  She enjoyed the bowling but enjoyed the popcorn even more.  She is still pink but I have that kind of waiting for the shoe to drop feeling since Friday when we saw the cardiologist.  The whole liver thing has kind of put me into a quiver.  If it's not one thing, it's another.  But no matter what the hurdle is, we can overcome, as we always do...with patience and prayer.  I watch her and think to myself how amazing she is, not because she is my daughter but because she is out there taking risks left and right and not showing all the major stuff she has gone through.  My girl has some serious gumption.

Monday, April 16, 2012

Pinkalicious

I'm so sorry that it has taken me so long to talk about the heart cath.  I feel like when I miss 2 days from work, I come back hitting it hard, running around like a chicken with its head cut off.

The heart cath was a tough day.  It was super long.  They didn't get started until 10 a.m. (we had been there since 7a.m.) Gracie was pretty anxious as we all were.  Initially we were told it would be like 3 hours.  We got one update like 11ish.  Then around 12:30, 1ish, the nurse came out and said he was still gathering data.  Okay, I knew then and there that something wasn't right.  Dr. C is a cautious guy but if he could have closed it after the first try, he would have.  We all knew this was pretty much our last effort before something else, which I don't want to talk about for a long, long time (the "t" word).  Thankfully, our friend, who is a picu doctor, came by, and found out what was going on and told us.  The first effort didn't work.  The fontan function dropped drastically and he wouldn't be able to close.  Dr. C and another cardiologist put their heads together and brainstormed why and decided it was lack of volume (due to not eating or drinking and being under anesthesia for a significant amount of time)...they added volume with calcium and waited before attempting the mimic closure of the fenestration (pop-off valve) on the fontan.  After some time, they tried it again and the function was within normal range.  He did it again and the same results.  So, Dr. C. closed the fenestration.  She pinked up.  Her oxygen saturation levels were in the 90s.  Because she was under anesthesia for so long (like until 3ish), they had her recover in PICU and we spent the night there.  Gracie was like a rock star with all of our favorite nurses coming by and seeing her, especially sweet Katie O'Dear.  We got released the next morning from the hospital and Gracie is still doing well.  She's pink and has oxygen saturation levels around 90-94!  She went from 79 to 94 in one day!  Amazing! 

I asked her if she felt different and she said she didn't.  I can see that she's having a little difficulty adjusting to her new body, like she thinks it's so weird to feel good and with more energy.  I think, like us, she is pretty cautious.  She is trying to see how far she can get with things since she just had another procedure...she is pushing the bratty envelope.  But she is pink.  PINKALICIOUS!  I am thankful and hoping we don't have any negative effects from closing the fenestration (like effusion!)...I have never seen my girl so PINK!  Pink fingers, lips, toes, face! Thank you everybody for your prayers!  Yeehaw! God is GOOD!

Tuesday, April 03, 2012

40

I turned 40 on Friday.  It came and went without a whole lot of hoopla.  It was because of me that I didn't want anyone to fuss.  I was never afraid of turning 40 because frankly there is no going over the hill...life is always about ups and downs in the hills of life.  I actually think as I am getting older, I am getting wiser, despite sleep deprivation. 

The day before I tuarned 40 I got some news that I wasn't ready to hear.  Gracie had a blue spell earlier in the week...enough of turning blue and breathing funny that her teacher called, which is VERY rare.  I, of course, was out of pocket being part of testing so I missed the calls.  She was okay but it was alarming for me.  We saw our cardiologist Thursday and we had a long discussion about my girl...she struggles a lot more than before with her stamina...when she gets sick (which she was for most of February and didn't get over it until spring break) it really takes its toll, especially in her oxygen saturation levels...she is overall a lot more bluer than before.  The decision was made to do a heart catherization and try to close up the fenestration.  The scary part is that if it cannot be closed due to high pulmonary pressures (which is what she had as a result of the fontan), most likely we will be facing heart transplanation.  I knew the T word was a possibility in the far off future, not just this close.  I am still dealing with that shock.  I think I realized how concerned he was when he called the cath cardiologist, discussed my girl right then and there and then called the scheduling nurse to set up the appointment for ASAP...and we weren't able to register for dance class in the summer.  I thought to myself, "Holy cow!  I can't believe we are back on this roller coaster ride, yet again."  I pray that they are able to successfully close the fenestration and that there will be no effusion as a result.  I pray that she gets pinker and her o2 sats increase.  I have to try to keep a positive mind and be strong for her so that she won't be scared.  She is a miracle girl.  She continually surprises me.  She has a strong spirit and she really is my super girl. 





So, on April 10th, if you get a chance, say a little prayer for my Gracie that everything goes well and for God's healing on her little heart.

Thursday, February 09, 2012

Good News but bratty girl

It seems like it has been ages since I have blogged.  It is good therapy for me.  It just seems that when I have a chance to get on my laptop, I'm too stinkin tired.  I spend more time on the ipad checking e-mail or just looking at my facebook to see what my friends who I never see are up to.  We got a great report that my girl is doing well.  The cardiologist for the first time said she looked good!  He used the word.  That' a great thing.  He postponed doing another cath to close the fenestration (the pop off valve) for a few month to let her continue on her upward trend.  She's doing so well that she's taking dance classes every Saturday and is having the time of her life.  That being said, she has been acting pretty bratty the past 3 days which leads me to believe all is not well.  We are going to see the pediatrician this afternoon.  She has a cough and she is incredibly clingy but also REALLY mean.  She's throwing tantrums over small stuff.  She really is pretty laid back but not this week.  I know my girl is a drama queen but this is soooo much more.  Last night she woke up with her knee hurting.  She cried and cried.  She wanted purple medicine (motrin) and heating pad.  She couldn't go back to sleep and getting ready for school was not a pleasant experience.  I had to stop, walk out of the room, take some deep breaths and come back all calm because I know this isn't my daughter.  She was fine as soon as we got into the car for the most part (she got pissy again when I started singing along with her on one song of her Beauty & the Beast CD...it's her song!)  I don't know if going to the Valentine's day party at the hospital triggered it but I feel she was bratty on Monday too (party on Tuesday night).  So, that's what I'm dealing with.  My parents are worried that I'm overstressed, which is just part of being a single mom.  It's tough.  My therapist is totally booked and I haven't seen her since August.  I can't miss any more work. I already got docked.  Insurance costs and prescriptions costs went up this year so my paycheck is less.  I had to start all over on copays (which therapies alone are $60 a week)...so yep, I'm stressed.  Yep, I've sometimes overwhelmed and stressed.  But it's kind of a way of life.  It will get better.  Right now it's about keeping my head above water and one foot in front of the other. Honestly, life is good and it will get better.