Friendship

Recently, I was able to reconnect with one of my most favorite persons in the whole world.  She was talking about her blog and she reminded me how I haven't updated mine in a long time.  She was talking about the therapeutic aspects of blogging and I remembered how much better and lighter it felt when I would blog.  I don't think this awesome friend realized how much our visit yesterday meant to me.  I have sort of been like a bear in hibernation.  I've kept to my family and my cave.  I've accidentally pushed most of my other friends away.  Thank God for my bff who keeps tabs on me and calls me at least once a month despite our busy schedules and our children.  I wish we could see each other more as well but my goal this year is to see my friends at least once a month.  So, thank you awesome friend for visiting with me and my child and making the best banana bread ever!  I think my dad running into you at the mall was truly divine intervention.

Hoping to go to CHOP this year

My girl is doing pretty good.  We have noticed that she does poop out a little faster than before and that she has been having more blue lip days after a lot of activity.  We aren't quite sure why.  She will be having a heart catherization done sometime this year.  Other than that, she really is doing remarkable well which is a good thing.  I am trying to get us to CHOP (children's hospital of philadelphia) because they have a single ventricle survivorship program.  It is multidisciplinary which means it's a team of doctors (GI, cardiologist, etc) who do their tests, talk about her as a team and then talk to us.  I love this approach (it's like middle school teaming which I highly recommend).  I just want to be proactive about her health, especially when it comes to the other body systems.  We heart parents tend to be cardiac centric which is good but when you change one body system, you affect the others because our systems are so interconnected. I read this article that basically said we are letting our heart kids down by thinking the fontan is a fix. It is in fact palliative which means it's temporary, like a band aid...it isn't a cure.  It was hard to read that 1 in 4 or 1 in 5 fontan kiddos don't make it to their 20s. I knew it, but didn't...it's like the elephant in the room...nobody wants to tell you the reality but it is staring at you in the face.  I think that is why I have embraced the carpe diem attitude with my girl.  We literally do have to seize the day because we don't know when something could happen.  I mean it could happen to any of us but with my girl I know that we most likely will have a limited time in comparison to other kids her age.  However, we don't plan like it is.  We were talking the other day of children.  She wants to be a mom.  She said she was going to be a mom and her friend, D was going to be a dad but they weren't going to be married.  I asked her where the child was going to live and she said they were going to share and live next door to each other.  She also said that when I get too old she'd drive me around as long as I teach her to drive first.  I made her pinky promise that when I get old, she was going to take care of me and not throw me in an old folk's home.  She said we were going to live together forever.  That should be interesting when she's in middle school.  I should record it and play it for her then.

Happy Valentine's Day

Today, more than any other day, I stop to remember my sweet girl's beautiful heart.  She has had a great and   healthy year so far (knock on wood).  She did have to get two cavities filled (without any anesthetic...she's so tough...she's my hero!) and a crown (done with a little gas) a couple of weeks ago. I'm so thankful to all of the wonderful family and friends and medical peeps who have really helped us these past several years.

We did see the cardiologist the other day and he said everything looked great.  Our concern right now is that her stamina level has diminished and that she gets blue lips after major exercise and she struggles going up a second flight of stairs in our house.  This started around the Christmas holidays.  It looks like there is going to be a cath soon but we are also trying to go to CHOP (Children's Hospital of Philadelphia).  They have a single ventricle program that would really be beneficial for us.  The kicker is whether or not my insurance (an HMO) will help defray the costs.  I am just going to put it in God's hands and He always figures something out for us.  I'm not worried.

A Long, Long, Time

I haven't blogged in a LONG time.  It's not that I haven't had a lot to say. I have been just kind of flying under the radar, staying to the mantra of "Keep Calm and Carry On!"  Life really hasn't been super crazy.  We had a great summer and took a nice beach vacation.  We've stayed relatively healthy (knock on wood). Our school year started without a hitch.  Gracie loves Kinder Ready.  She can't wait to start Kinder next year.  She turned 5 in December and is growing so fast. It's crazy what oxygen can do for a person.  We got a new family member in late December.  A little 4 yr old dog named Peppa who G loves!  Things really seem to be on an even keel for once.  Of course, I say that as I wait for the cardiologist to call me about G's liver function test results which I know are still going up.  I'm not quite sure what will be the outcome or result.  But other than that little bump, life is good.  I'm thankful that I'm not in a hospital with my daughter.  I'm thankful we're home and happy.  G can play outside with her dogs and can has the energy to run around and climb the playscape at McDonalds and Chuck E Cheese.  Really life is good.

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.

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.

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!