A Picture Says It All

I know you have been wondering how AG has been recooperating at home.  Rather than tell you, I'd like to just show you.  They say a pciture's worth a thousand words, so..... here are a few thousand!  Enjoy!

Saturday & Sunday this weekend we decided to enjoy the beautiful warm Southern December we are having and get outdoors.  It's what you do when you're in quarantine and you're tired of looking at the same four walls.  While there are a few other people on the trails the risk of germ exposure is pretty low since there is not really anything anyone is touching so it is about as germ free an outing as you can get.  The boys went biking and the girls went hiking and we met up along the way.  Even though AG is getting too big for the pink car she insited we take it.  I don't think she can use it much longer though because she is just too big!

 

 

Before the boys took off on their bikes Zachary was kind enough to smile for me.  He was itching to get on the trail though.

 

 

 

Dad finally got the truck locked up and met us at the trailhead for a family picture.  They were trying to be silly, I'm not sure if you can tell but they are all sticking out their toungues :)

 

 

 

Here they are all giggling after taking a picture with their tongues sticking out, they thought it was soooo silly!

 

 

 

 

 After the boys took off AG and I started hiking.  She did not want to ride in the pink car and insisted on walking.  This is a big change from before surgery when she was always on my hip during a hike.  We found a tree stump and she was on the hunt for ladybugs.  We didn't find any on this tree stump though.

 

 

Still looking for ladybugs!

 

 

 

Then AG took off running with me trailing behind her running with the pink car yelling, "slow down, don't you want to ride in the car?????  Can I hold you????  "  She never stopped, she just kept running and giggling.  I think she loved the fact that she could just go and go like she never could before.  I however was very nervous about the fact that she just had open heart surgery 3 1/2 weeks ago.  The doctor assured me she would "self regulate" at this age and she would rest when tired.... hmmm... not sure if that applies to our little one!

 

 

 

 

 So we met up with the boys again on the trail here.  They zoomed by us on their bikes.  Zachary is really getting pretty agile on his bike.

 

 While crossing the bridge we finally found the coveted and elusive ladybug.  She was so happy and carried that thing around on her hand and arm for at least 30 minutes.

 



 Zachary crossed the next bridge with the intention of pushing his bike up the "big" hill so that he could ride down the steep part.  He is getting a little daring!

 

 Here he is pushing his bike up the hill.

 

Here he goes zooming down the hill. Not scared one bit, he loved every second of it!

 

 

 

 

 Then of course AG wanted to go up the big hill.  Daddy carried her up on his shoulders, but she wanted to RUN down it all by herself, which she did.

After running down the big hill she sat down in the grass for about 5 minutes for a rest.  You can see she has a smile on her face.  She had a blast!

 

 

 

 Zachary loved riding his bike on the trails.

 After venturing down the trail a bit more the boys found another big hill to climb.  There was no way bikes were going up this hill.  Zachary went first.....

And then of course little sister had to follow so Daddy went with her holding her hand to keep her safe.

 

 

 

 

After all the hiking and biking we headed home and here is where you finally get to see me giving my big brave girl some kisses.  Zachary is the camera man for this shot.  He did a great job didn't he?

 

 

 

Not to be remiss in sharing a very monumental detail in Zachary's life...... he lost his first tooth.  Bottom left.  He's a big kid now!

 

 

 

 

 

Here's a close up!

 

 

 

All showered and cleaned up after the big adventure!

 

 

 

The Innkeeper

Desiring God

Crossway

Cardiology Appointment

Anna Grace saw Dr R today for a cardiology check up.  Her O2 sats are 88 and her blood pressure is good.  The echo showed good heart function and everything looked "normal".  We did give her adivan this morning before the appointment to help calm some of her anxiety since Dr R also had to pull some stiches today.  She didn't enjoy having the stiches pulled and cried and was upset during that, but recovered pretty quickly.

Overall it was a good appointment.  He decreased her lasix from 3 times a day to 2 times a day. We go back in two weeks.  She needs another chest xray in 2 weeks and then hopefully we can decrease her lasix to only once a day.

She still hasn't had a proper shower because Dr R wants her to just have a sponge bath for now.  She is a pretty stinky girl.  She also has decided that she only wants to wear pajamas and we have allowed that - so - since her surgery she has only worn pajamas - everywhere - all day.

She lost 3 pounds during our time in Charleston and we are working on gaining that back - so we have been allowing lots of brownies, cookies, chocolate, etc.  I am happy to say that the wonderful families who have been bringing us meals have also been bringing lots of desserts too so I am hopeful that she will regain her 3 pounds quickly.

The remainder of today will be spent at home hopefully resting.  Overall, today's appointment was good and we are thankful.  It is a blessing and a gift from the Lord and we do not take it for granted, not one bit.

Thank you for continuing to pray for our girl :)

Just Had to Share This

 

Saw this on You Tuibe and just had to share! Cracked me up and lets face it, a little humor is a good thing! If you're a parent of young children you will probably enjoy it as much as me!

 

 

Thanksgiving

We were able to be home for Thanksgiving!  It was an unexpected and welcomed blessing!  While my heart was joyful to be home with my family I also spent the day remembering the families we had met at the hospital who were still there having to spend Thanksgiving at MUSC.  My heart aches for them and I pray that the Lord allows them to be home and settled before Christmas!

Since our week has been such a whirlwind I was in no way prepared to cook a Thanksgiving meal!  So, a very, very sweet couple from our Church arranged to have meals brought to our family for the next two weeks, and that INCLUDED a meal on Thanksgiving Day!  Yes, a generous family in our Church brought us over a smoked turkey and another family brought all the sides to go along with it!  Mee-Maw, Pops, Mee-Mee and Grandpop joined us at our hone on Thanksgiving as well and there was plenty of food for everyone.  It was such a blessing.  It was a relatively quite day.  The gandparents were only over for a couple hours.  We ate and then played charades and then it was time for our little girl to try to get some rest.  It was a quiet day by most people's standards, but it was a really big day for Anna Grace.

As for Anna Grace - she is starting to act like herself again and has even started sleeping through the night again (thank you Lord)!  Now that she is sleeping through the night again I have returned to my bed (as opposed to the floor in AG's room where I had been sleeping).  I still don't feel llike I have caught up on all the sleep I missed while in Charleston!

It has only been a little more than 2 weeks since her surgery, but already Anna Grace wants to ride her brother's bike, climb and swing on the trapeeze bar and has even asked to jump on the trampoline.  All of these activites are of course off limits for the next 8 weeks!!!!!   I have not been giving her any pain medication - only Tylenol at bedtime and she doesn't seem to be in any pain what-so-ever.  It is really quite amazing to see her bounce back so quickly!  The trouble will be continuing to hold her back for the next 8 weeks.  Will it even be possible?????

Please do continue praying for her (1) for no infecftion, (2) ahe has a chest xray on Monday morning - pray that the reulsts would show no fluid build up and that she would be calm and tolerate the xray (3) she has a cardiology appointment on Tuesday please pray that her echo shows good heart function and that everything looks "normal" and that she will cooperate for the echo and for the removal of the stitches.

Thank you friends for continuing to follow our story.  I will post on Tuesday after her appointment and let you know what Dr R says :)

The Rest of the Story

Sory about the lack of blog posts recently.  I know you all want to know how we ended up from having tachicardia to lots of drainage to home so quickly.  As far as I'm concerned it is nothing short of the Divine hand of the Lord intervening!

So, as you already know Friday AG had one chest tube removed.  The other two chest tubes were still draining.  Friday night those two chest tubes stopped draining.  Amazing!

Saturday morning AG ate fat for the first time.  This is significant because chylothorax will not present until fat is eaten.  So, Saturday morning AG ate a scrambled egg and a peice of bacon.  Around noon Saturday Dr. Bradley and the attending physician came in and said they wanted to pull the remaining two chest tubes.  I explained that AG had just eaten fat for the first time that morning and I was concerned about chylothorax.  After some discussion, the agreed to leave the chest tubes in for another 24 hours to see what happened.  Things stayed status quo for the remainder of Saturday.  Sunday morning came and there was still no chest tube drainage from the remaining two tubes and nothing which appeared to be chylothorax.  Around noon Dr. Bradley and the attending physician came back in and said it was time for the chest tube pulls and then if the chest xray after the pulls looked good then they would discharge us that very day.  It was a whirlwind!  (Let me stop here for a moment and say that AG had chylothorax her first two surgeries and everyone expected her to have it this third surgery as well - I know so many of you were praying about that and the Lord protected her from the cylothorax with not a sign of it at all)!

The two remaining chest tube pulls were brutal.  She remembered from Friday since they don't put them to sleep to do it.  I was in the room with her holding her down and trying to comfort her during the pull.  Brutal is the only word I have to describe this.  After the two chest tube pulls then the nurses came in to remove the IJ line from her neck.  An IJ is kind of like an IV, but it goes into the jugular in the neck and it is sutured in so that you won't lose it.   It's bigger than an IV but the concept is the same.  You can administer IV medication through it and you can also do blood pulls through it so that she doesn't have to be stuck everytime they need labs.  It's handy in that way, but it is brutal to remove.  So again, there I was holding her down and still so that they could remove the sutures from her neck and pull the IJ.  My poor poor baby had been through so much.  It was painful to watch her pain and fear in light of so much being done to her.

After those removal there was just one last thing that had to be removed, it was the IV in her hand.  That went pretty quickly and mostly painlessly - at least compared to everthing else.

She still had about 25 stickers and badages on her chest which they wanted to remove and I said just leave them.  I'll remove them once home - I thought she had been through enough.

The chest x-ray people showed up next for a 2 view chest xray.  We had to wait about 3 hours after that was done to have it read and finally hear back from the doctor that we had the all clear to leave.  After signing and reviewing discharge paper work we were free to go.

While all of the medical stuff was going on Sunday,  Brian and Miss Lauren and Zachary were back at the townhouse frantically washing sheets and cleaning up in preparation for our departure.  They called me about 4:30 and told me they were finished and at about 5:00 AG and I got discharged so the timing worked out great.  They drove to the hospital and picked us up and we got on the road about 5:30 pm.

Brian drove the car and Miss Lauren and I drove the van with the kids.  AG did not do well on the car ride home.  She cried and was very uncomfortable until she finally fell asleep.  It was a welcomed thing for everyone!  Once home that night she was very fussy and disoriented, but by about midnight I think she finally figured out where we were and that we were home.  She settled down and slept for the night.  I slept on the floor in her room that night and it was terrific. to be home again!  I do want to stop and mention here that when we walked in our dorr at home after 2 weeks of being gone my house was spotless and clean.  A dear friend from Church had come over Sunday afternoon and cleaned my entire house, made a huge welcome home banner and another dear friend had brought some moeny for take-out since we hadn't stopped for dinner that night.  They thought of everything!  I hadn't cleaned before I left so what a blessing to come home to srubbed toilets and bathtubs and floors!!!!!!  I know all the Moms reading this will appreciate what an awesome gif tthis is!

We spent the entire dayMonday unpacking and removing stickers and bandages from AG's chest.  The bandage removal was terrible, she writhed and screamed upon each bandage removal.  We were able to remove all the bandages except one - we just couldn't go on.

Tuesday morning we headed to Dr. R's office.  She was very scared and other than him asking us to remove the last remaining bandage and then listening to her heart he didn't do much.  He prescribed a one time does of adivan for us to give her next Tuesday and asked us to come back next week so he could remove the stitches and do a chest xray and echo.  Next week will be a big appointment.

Since we've been home AG has started walking again although she is still unsteady on her feet.  She lost 3 pounds while in the hospital so she is still weak.  She has begun eating again and she is pooping regularly again.  She is still fussy, but you can tell she is starting to feel better every day.
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Our Church has been fantastic about bringing us meals since we have been home so we haven't had to go to the store for anything other than bread and milk.  It has been such a blessing to not have to think about cooking and meal planning in the midst of all of this.

Brian has been actively searching for a puppy for AG.  She hasn't forgotten about it and asks about her dog everyday.

AG is still not sleeping great at night, but I think it's just going to take her some time.  She has been through so much.  The Lord has been so gracious and merciful to Anna Grace and our family during this whole journey - He has met and supplied for every want and need we have had and we are grateful.  He has healed AG's body in a miraculous way and amazed and astounded us all.  He has held us and comfortaed us and sustained us during those two scary days when AG was having tachicardia and no one was sure why.  He kept us awake and functioning during days with no significant sleep to speak of.  The Lord has placed people in our path during just the right time to minister to us - a big shout out here to Crossbridge ministiries - who I can not imagine thraveling this journey without.  It is a hard journey, but we are not overcome.

Please continue to pray for no infection.  Although we are home she is still fragile and I certainly do not want to have to take her back to the hospital.  Please pray that things look good on Tuesday and that the Lord will remove the fear she has and that she will again begin to feel safe and secure.

We have much to be thankful for today.  We are certainly thankful for all of your prayers, friendship and encouragement!  May the Lord be Glorfied through our story!

We are home

It has been a whirlwind 48 hours and there is so much to share, but for now we've got our hands pretty full with trying to get things settled back at home so the detailed post will have to come in a few days but for now.....

Quick update.  We got home last night about 8:00 pm.  AG is starting to act like her old self again.  She slept in her bed and I slept on the floor in her room.  Best sleep I've had in 2 weeks.  Seriously.  We see her cardiologist Tuesday for a chest x-ray, echo and ekg.  He will also be removing some stiches tomorrow.  Pray that everything looks normal.  I'll post in more detail later.... thank you for praying!  The Lord has answered so many prayers in such a tangible way and we are so, so so very thankful :)