Friday, September 19, 2014

Still Crabby....


Zoie with her new best friend, Doc.


So this week has had it ups and downs. We had great news with a clear X-ray and so excited we were able to stay home, but my girl is still adjusting. Sleep has been a struggle for her. She can not seem to settle or get comfortable so that is starting to take it's toll. Raygen still can not handle her full volume of food and pukes a couple times a day. She is still very needy and fussy and only wants mom. Randy and I think the high doses of diuretics may be causing some of her stomach issues. What really concerns me is this little cough she has developed because my biggest fear right now is Raygen getting a cold which could cause more fluid in her chest or worse a trip to children's. I think children's would be the worse place to go right now with all the respiratory cases they are receiving. The ups and downs of our chd life. I'm so thankful for how well Raygen is doing overall. The good still out weighs the bad, but there is always the fear of the bad.

xoxo

Erin

Tuesday, September 16, 2014

X-Ray was clear!!


So what a busy day. First thing Raygen's x-ray was GOOD!!! So no chest tubes or hospital stay. She will stay on her 7 doses of diuretics a day for the next 3 weeks. We get to start Raygen on a her regular blended diet in two weeks so we will have one week with fat back in her diet before Raygen has another x-ray. Adding the fat back in her diet could cause fluid to build up again so that is why we are waiting to make any major changes. Raygen also had blood work today to make sure she had good kidney function etc. and it all looked great. Thank you so much for all your prayers. We get 3 whole weeks with no doctor appointments and its such a great feeling. Raygen needs to have some time off to start to heal emotionally from all that she has went through. I am just so very thankful to be home tonight. Thank you again so much for all your prayers and support. God heard you 

xoxo

Erin

Monday, September 15, 2014

5th Grade


Raygen taking a much needed nap this weekend.
Zoie got her horse, Doc, this weekend!!!
1st day of 5th grade!  
On the way to school.  At least one kid is excited!
Raygen still isn't feeling well.
Off she goes to class.  Where did the time go sweet girl?
Please pray for Raygen tomorrow.  She will have an x-ray at 7am and if it is the same or worse then last week we will head to Children's to be admitted for iv diurtecics and possible chest tube.  I am really worried because she just doesn't seem to be herself this weekend.  
On a happy note my sweet Zoie started 5th grade.  How time flies.  She is such an amazing young lady. 

xoxox

E

Thursday, September 11, 2014

With Good Comes Bad..







So with good news comes the bad.  Lets start with the bad and also scary.  Raygen's x-ray today showed fluid build up in chest again.  This may explain why she has been so fussy the last day or so and why she is having such a hard time sleeping.  Dr Park added another diuretic to Raygen's medicine routine so now she is receiving 3 different diuretics 7 times a day.  That is a lot of peeing for a 3 year old.  Raygen will have another chest x-ray Tuesday morning and if it is the same or worse we will be heading to Children's to be admitted for iv diuretics and possible chest tube :(  If the x-ray is better then we will head to Tacoma so Raygen can have blood work because when children are on high doses of diuretics you have to watch their kidney functions among other things.  So it is scary all around.  The diuretics may get the fluid off, but may damage her kidney's in the process.  This is a step back, but right now were home so I'm trying not to panic.  It is hard though.  I am watching her closely to see if I see any changes in breathing or color just in case she worsens before Tuesday.  This is one reason why kids after the Fontan are still "home bound" for awhile because any cold or sickness could lead to more fluid build up and their body is using all it's energy adjusting to the new blood flow that it is really hard to fight off anything.  On the good note, Raygen's warfrin level is good.  So today was a little stressful and not the news I was expecting, but I'm hopeful the extra diuretic will take care of the fluid so we avoid the hospital.

xoxo

Erin

Sunday, September 7, 2014

Cardio Check Up


Waiting for X-Ray
Singing ABC's with Dad.
Waiting to see Dr. Park
So Friday we went for our first post-op check up and it was pretty rough.  Raygen is very sensitive to everything right now and she knows what doctor offices look likes.  She cried the entire day.  It was heartbreaking.  She screamed during the chest x-ray, which was clear :), and after that she just looked so sad.  We then went to Dr Park's office and Raygen had an EKG, blood pressure, and pulse ox.  Each one of those test are painless, but to a little girl just out of heart surgery they are scary and I think you could have heard her scream a block away.  They did want an Echo, but we said not today because she had already been through a lot.  She also had to have her finger poked to check her warfrin level, which was on the low side.  Even though the day was stressful everything seemed to be looking good.  Raygen's EKG looked good, although she is having a few PVC's which are making me a little nervous.  Even if it's normal for everyone to have a few PVC's it's a little nerve wracking with Dr. Park can hear them while just listening to Raygen,  Raygen does have pacer wires in case a pace maker is necessary, which I pray isn't, but only time will tell.  Due to the PVC's Randy and I have decided to make an appointment with a Dr. at Seattle Children's who specializes in rhythm issues.  I feel like I want us to be prepared and if need be caught a problem early instead of an emergency.  I will be calling him on Monday.  Otherwise Raygen's appointment went well.  There were no changes with her warfrin or her diuretics.   We will have another check up with Dr. Park on Thursday with an x-ray, warfrin check, and an echo.  Raygen will probably be seen every week for a whlie or at least till we get her warfrin level at a good spot.  Raygen will be on high doeses of diuretics for at least 6 months and Dr. Park said around that time we can discuss if we can transition Raygen back to aspirin instead of warfrin.  So many decisions to come in our future, but right now I am just grateful to be home.  Raygen is still adjusting to being home.  She is still no where back to her normal, happy self.  She still is too sore to stand or walk on her own.  She cries a lot and has a hard time sleeping.  Her sleep schedule is off and she cries all night and wants to sleep all day.  Tomorrow I am going back to work with my girls and hope she can adjust to being at the office again.  I know each day she is home she will get more comfortable again, but going to the doctor once a week is going to slow the process.  I hope she remembers that not every time we go in the car were going somewhere bad. 

xoxo 

Erin

Tuesday, September 2, 2014

Were Home!!!


Leaving Children's
Such a good feeling to be heading home.
This is when she started to realize we were leaving.
Bye, Bye!
She was pretty excited.  She smiled pretty much the whole way home.
Heading home after our Warfrin check today.
Can't wait to be home again!!!
Wow! 12 Days for major open heart surgery and home!!! Raygen was amazing. To sit here at home with both my girls is such a wonderful feeling. I haven't felt this good in a long time. It is so strange to me not to have the Fontan lurking over our heads anymore. The dreaded "maybe this summer" is no more. The next steps for Raygen are unknown. The options after the 3 stage surgeries is transplant so we pray that her half a heart will last our girl a very long time. I hear stories of HLHS kids who are playing every sport they wish, having children, sky diving, so Raygen's future is what God wishes it to be. For right now we are extremely blessed and know there are no words that could fully describe how lucky we feel today and everyday that we have with Raygen. I wish I could personally hug each and everyone one of you that prayed for Raygen and that send us well wishes and encouraging messages. They truly got us through the hardest days.
Since the Fontan Raygen has a few more medications that she will need to take for a while and then slowly weaned off of them. Mostly diuretics since the Fontan causes a lot of draining in the chest they like to keep the kids dry. She is also on the blood thinner Warfrin, which is very scary for us. It will be a lot of finger pokes and testing to keep her in the "safe" level. We have to keep a close on eye on her if she falls or has any strange bruises that continue to get bigger in time because Raygen is high risk for bleeding while on Warfrin especially if her levels are to high. She is still on a no fat diet for a few weeks so we are keeping a close eye on her weight and while being on the Warfrin that also limits the amounts of certain vegetables she can have. Raygen also has a huge sore on her back from her tape being removed from her chest tube so we are watching that. Hopefully Friday when we have a follow up with Dr Park Raygen can have some stitches removed and of course she will have another finger poke to check her Warfrin level. She likes to keep us busy 
Now for Raygen: We will have to work with her to start walking again. We would really love for this girl to learn and enjoy eating by mouth. She will also be evaluated by Children's to see if they consider her autistic.
Raygen is truly a blessing from God. She has taught us so much about life, God, and ourselves that without her we would have never discovered on our own. It is humbly to watch my daughter that has been through hell and back bring me her bubbles to blow for her. She has no idea how amazing she truly is, but I am never going to let her go a day without reminding her.
My prayers go out tonight to those families who left Children's without their child and to all the families who are just starting this journey. Just keep having HOPE that's all I can say.
xoxo
E

Thursday, August 28, 2014

One week after Fontan


Right after surgery.
First time I held her after surgery.
Snuggling on the floor.  Out of the ICU.
Sleeping after 3rd chest tube placement.
Her leg after a few days of lovenox shots.
Getting a little back to normal watching Elmo.
Napping after having one chest tube removed.
Relaxing.
Feeling much better.

Today we are one week after the Fontan.  It's so crazy to be on this side of things.  I feel a relief that Raygen has done so well.  She is such an amazing little girl.  She is such a strong fighter.  Raygen's Fontan went well.  She had to have 3 chest tubes, but today she is down to 2.  The drainage has finally started to slow down so maybe in the next couple days we can get rid of one.  One of our biggest issues now is feeding.  Raygen is now on a no fat diet due to draining her protein from her tubes and she isn't anywhere near close to handling the volume that she did at home.  She is puking a few times a day with feeding and I know it has to be so painful considering all that is going on with her chest. We also have to get Raygen on her normal pooping schedule again.  This has been a real sensitive issue for her and it becomes so painful for her.  It is so hard to see her with a tummy ache.   Raygen has been having lab draws and x-rays everyday so far, but today we get a little holiday :)  We do know Raygen will go home on a blood thinner whether it will be shots or an oral med is in the air right now, but either is somewhat scary.  We will have to keep a close on eye on her if she falls or injures herself and also her diet.  Any change could affect the dose of her blood thinner then in turn she would have to have more blood draw to get the dosage back again.
Things will be a little different going home a few medications, but overall she is doing good.  Her O2 right now is 90 and she hasn't had oxygen in over 48 hours.  She is only on Tyenol for pain.
The things are keeping us in the hospital are her two chest tubes, feeding issues, and sorting out her blood thinner medication.  She will also have en echo, ekg and x ray before we leave and they must look good also.  We also need to get her on a better "potty" routine, get our girl regulated again.  So I for see us being her a few more weeks, but in the scheme of things she is doing so good.  I'm so proud of her.  Each day we get more and more smiles and start to see our girl come back to us.  I do wonder what she will be like when we go home though?  Will she resort back into her shell that she was in when she was younger?  I guess we will see when we get there.

Thank you so much for your continued support and prayers.  We are truly grateful.  Please continue to follow Raygen on her Face Book page (you don't have to have an account to see it) because it's easier to post quick updates there.  Can't wait to get home and get back to our normal life and lots of blog posts again of my amazing girl :0)

xoxox

Erin

https://www.facebook.com/Praying4Raygen

Wednesday, August 20, 2014

Surgery Tomorrow at 7am

Please check Raygen's Facebook Page tomorrow for quick surgery updates at https://www.facebook.com/Praying4Raygen  I will post longer updates here when I can.
Playing in our tent.
Much needed nap.
Our pretty new dress.
Dancing at work.
Relaxing at work.
More dancing at work!
Playing with our new blocks.
Tomorrow is the day. We check in at 6:15 am and they will take her back by 7 am. Surgery should be around 4 to 5 hours and depending on how they handle either the removing or patching of Raygen's stent they may not have to stop her heart. If they do stop her heart Dr. Chen said it would be for about 15 minutes which is way shorter then her previous surgeries, but the thought of her heart being stopped any length of time frightens me beyond words. I will do my best to update as the day goes on because I know how many of you will be praying for my beautiful baby tomorrow. I want to thank you so much for loving and praying for Raygen. She is truly an amazing, loving little girl. Also if you could please say a prayer for Zoie I would be very grateful. Zoie worries so much about her sister and I know she is very stressed. Please pray for the surgeons, nurses etc. that will be caring for Raygen tomorrow.
Today we are packing, playing and praying. We have to have the car loaded tonight because to make it to the hospital in time we will have to leave around 3 am. I know so early, but I thought it was important to stay home, in Raygen's comfort spot, with Zoie as long as possible.
I have always knew this day would come just like her Norwood and Glenn. I know without the Fontan Raygen wouldn't reach adulthood not even close to it. It is a necessary evil, but one that my daughter has to go through. The surgery scares me, but the aftermath scares me more. I know how she will look and know the tears will be cried and she may be in pain and her poor face on a vent, all things I have seen before, but know matter how many times you see your child like this it never gets any easier.
I know Raygen is little, but she is FIERCE! She can do this. Thank you so much again for all you love and prayers we need them.

Till Tomorrow...

xoxox

Erin