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 :)

Chest Tube Being Removed

Anna Grace's doctor told us yesterday that from what he was seeing her chest tubes weren't going to be coming out any time soon.  However though the night one of the chest tubes stopped draining.  At one point the nurse sent a doctor in to look at it to see if she saw any blockages.  She said she didn't see any, but that she would make sure they stripped the chest tubes in the morning in order to clear any blockages in them.  Everyone was certain it wasn't draining becaue it was blocked.  About 5:00 this morning a chest xray was taken to see if there was fluid accumulating in her chest due to the "blockage".  Once the attending doctor arrived this morning he looked at the chest xray and said there wasn't any fluid accumulating.  They stripped her chest tubes and there was no blockage.  He said he was wrong yesterday and that one of her chest tubes could indeed be removed today along with her pacing wires.I said, "Would you say it was miraculous?"  He said, "I wouldn't say it was miraculous, but I would say it was amazing."  Well, I am amzazed at this miracle of healing the Lord has performed for Anna Grace over the last 24 hours.  I am almost in tears thinking of how great a blessing he has bestowed on sweet Anna Grace and I am thankful for the prayers of so many of you.  Thank you friends.  May the Lord be glorified through this amazing act and may your Faith in the Lord's healing power be strengthened because of it.

She still has two chest tubes in so we need to conrinue to pray for the draingage from those to stop and she has also been throwing up today when taking her meds.  I think perhaps because she really doesn't have any food on her stomach so please pray for increased appetite and for the Lord to allow her to have a settled stomach when its time for meds.

Please pray for her this afternoon during the removal of the chest tube and pacing wires.  She wil be given morphine and versed for the procedure but she will be awake and I won't be able to be with her.

Please pray for coontinued healing and for no infection and no chylothorax.

Thank you friends, I will keep you updated.

On 8D

Today Anna  Grace was transfered out of PCICU to 8D.  She now has her own room with a door which affords a lot more privacy.  There is also a lot of freedom here to put her in a wagon and head to the playroom.  She was able to go to the playroom 3 times today which is great for her.  Just the kids, toys and change of scenery seem to help her.

She still has 3 chest tubes (and a lot of other tubes and wires in her) and according to the doctor they're not coming out any time soon.  Please continue to pray, pray, pray, pray a miraculous healing for her with the chest tube drainage.  She is so scared of the chest tubes and they are very painful.

She hasn't eaten a whole lot today. Just a few cookies and a few bites of banana.  Please oray that her appetite increases.  We really still dont know about chylothorax because she hasnt really eaten anything with a lot of fat in it so please continue to pray against chylothorax.

A praise from yesterday is that AG pooped today.  It might not seem that significant, but i promise it is a big deal.  Thank you for praying about that.

Right now it is 10:00 pm and she is sleeping.  We will have to wake her every 4 hours tonight for meds and vitals so it will probably be a very long night, but we are still so very thankful to be where we are right now.  We know AG still has quite a journey ahead, but we are thankful.  Thank you friends for praying.

I have a moment

I have a moment to make a blog post because Anna Grace is finally sleeping.  It is the first time she has slept since surgery that it hasn't been forced sleep due to morphine and versed.  For the last two days Anna Grace has experienced tachycardia which means her heart rate is super high.  It wasn't just episodes of high heart rate it just got to 190 and stayed there.  The doctors were puzzled.  The did two echos, two chest X-rays, two EKGs and everything looked fine.  They thought maybe infection might be the cause but she wasn't running a high fever so they cultured blood.  All the while AG is saying over and over again non stop "I'm scared, I'm scared, I'm scared".   For the last two days almost constantly.

We had a few heated discussions with the staff and finally last night dr Bradley came in and we talked about what he thought might be the cause.  Afterd a lengthy discussion we decided to start her on an anxiety medication called Ativan for the next 24 hours to see if it brought her heart rate down.  He said he didn't think anxiety would make it that high and they had never had a patient experience anxiety severe enough to warrant a continued -95 heart rate butt it was a first step in trying to figure out the cause.  She has been on the medication now for about 16 hours and her heart rate has been in the 129's.  She has still gotten scared and upset but we have been able to console her.  She was even able to go to the playroom this morning for an hour.  They never let ICUs kids go to the playroom but given her severe anxiety they thought it would do her good and it did.

So today everyone agrees it was caused from anxiety.  We don't plan on staying on Ativan forever but while in the hospital I think we will keep it on board.

She is still having a high chest tube output.  She has three chest tubes in right now and they can't be removed until the drainage stops.  Please pray pray pray pray for it to stop soon.  They are painful and scary.

The doc said they would not normally send a child to the floor with the amount of chest tube drainage she is having but given here severe anxiety they feel she will do better there.  So the plan is as soon as a bed becomes available on 8d they will send us to the floor.  That doesn't mean she is close to being ready for home but we are all hoping it will be less scary for her than the icy.

So, please continue to pray for her anxiety, for her to sleep well, for her to eat. Poop, and for the chest tube drainage to stop.

Brian is going to try to sleep tonight somim pulling the all nighter tonight.  So.... Pray for me too,

Zachary has been handling everything great.  He has made friends withbthe entire staff at the hospital playroom and they live him.  Still zero anxiety or questions from him about all the very sick kids he sees in the playroom.  That is a huge praise.  He said today he never wants to leave..... Sorry buddy.... But we aren't staying any longer than we have to,

Being Pressed

Where to begin? 

They stopped the IV sedation Monday morning and this caused Anna' anxiety to sky rocket throughout Monday. Her heart rate started trending at 180 to 195. They decided to put her back on it Monday night and try to slowly ween her off.  Apparently sometimes children have a hard time coming off this sedation medicine cold turkey we are told. 

As soon as they started the drip again her HR dropped. She relaxed and was off to sleep with the help of some pain meds. Her nurse Monday night was someone who had her back in early 2010 and we felt very comfortable with her. Anna was going to be her only patient so we left for the evening for some sleep. 

Tina was back up at the hospital early Tuesday around 5am. Anna did fine through Monday night into early Tuesday morning. I received a text from Tina around 8am Tuesday saying Anna' HR was around 110 and she was doing fine. She had eaten breakfast and it was looking good we were going to get out of PCICU. 

They turned the IV sedative - the one that caused Anna' HR to climb - off at 7am Tuesday morning after taking her down on the dosage and her HR started to climb again. As Anna' HR climbed so did her anxiety. She became more and more unable to be consoled. 

After a discussion with with the doctor on the floor we were able to get her some medicine to calm her down. This did not last long though and she was shortly again trending around the high 180's to 190's. 

Anna was sedated again and they did an ECHO and EKG. Her heart function looked good but fast. Really fast. As the sedation wore off her HR would climb and her anxiety would increase. As her anxiety increased so did ours. It's tough seeing your child who just 4 days ago had open heart surgery, and then have her heart race like a Formula One race car. They also took some blood and sent it off to be checked for an infection. Things had turned and now we were staying in the PCICU. 

Anna' condition became so out of control at the height of her last episode Tuesday afternoon, it seemed she was almost out of her mind. She wanted to go home one minute and then wanted to never go home the next. She wanted us to leave and then she wanted everyone to come.  She wanted the doctor and then didn't want the doctor.  Every single little thing bothered her. She was frightened and thought there were monsters and big foot in the room after her. Was it anxiety or stubbornness? Probably a little of both. Either way, Tina and I were about done in.  Only by God's grace did we not lose it and come undone. 

After asking for prayer from friends and family Dr. Bradley her surgeon showed up. He suggested getting her on Ativan (anti anxiety). An answered prayer and much needed. We almost broke down right there in Anna' room. Dr. Bradley said he was concerned about her high HR, especially since her ECHO and EKG looked good. He said we would just have to wait and see. 

Within minutes of Dr. Bradley leaving Anna had been given enough medicine to put her into a very stable and much needed REM state. Her HR dropped and she was finally resting peacefully. We understand she cannot come home this way but she needed to rest. 

Tina and I headed home to see Zachary and have a bite to eat around 8pm Tuesday. Tina decided to stay home and get a good nights rest, while I decided to come back up to sit with Anna. I found Anna still sleeping with a very nice low HR. At the posting of this she has a few times been frustrated upon waking up, but her HR is staying better overall. Keeping her heart rate lower will help in the long run. We are hopeful and praying Wednesday will not be as pressing as the last few days. 

3 Days Post-Op

Blog Update for Monday

Yesterday evening was a tough night for us and the PCICU. We had two babies lose their battle with heart defects. A stark reminder these babies are very sick and that we live in a very broken world caused by our sin. Sometimes the Lord's providence is deep, dark and very painful. But, we take heart in knowing God is good and His purposes, although sometimes very hard to understand, are working all things to glorify His name and for the ultimate good of His children. We are learning what it means to be "as sorrowful, yet always rejoicing" (2Cor.6:10) in a very tough way. Our prayers go out for these families who are having to deal with the sorrow of losing their children. 

They shut down the PCICU last night at 11pm and did not re-open until early this morning around 5am. We were forced to leave, which is always vey tough. Having to leave however did allow both Tina and I sometime to catch up on our sleep. This was much needed. A blessing wrapped in grief. 

Anna had an ok night from what we can gather from her nurse. She was in and out most of the night and needed only once to have some versed. She is still having a tough time staying calm. 

I arrived at the hospital around 6:45am and found Anna sleeping. Her sleep was accompanied with slight soft moans that would come about every 3 to 5 minutes. It was very difficult to listen to but the Lord sustained me. Her nose O2 tubing had worked itself loose and really was not giving her much assistance. Her O2 sats were staying pretty stable trending in the mid 80's.

She woke up around 8am in a pretty good mood. She indicated she was hungry so I tried to flag her nurse down. Her nurse was tending to another patient, so a different nurse who was working the desk area came over. The nurse, in an attempt to help Anna, tried to get the O2 nose tube back on her nose. Not a good idea. This really upset Anna and she  got so worked I thought we were going to have to drug her again. Now I'm not a very good singer, but my soft rendition of Jesus Loves Me seemed to calm her down and she dozed back off to sleep again. This was mercy, for Anna really more than me. Like I said, I really am a poor, poor singer. 

She woke up during the doctors making their rounds, and I was able to sing her back to sleep again. Basically her doctors were pleased with her progress for the most part. They said she was doing pretty well, and her fluid drainage was slightly decreased, but they were concerned she was having to be sedated to stay calm.  They decided she should stay in the PCICU for at least another day. I was disappointed, but am trusting this is the Lord's doing.

The next time she woke up we (the head nurse and I) could not not get her to calm down. She was having none of her daddy's singing this go around. She wanted to be picked up and held and she wanted mommy, who was on her way.  Her heart rate went way up and her O2 sat went way down. The head nurse said lets get her calm and she was given a dose of verse and some morphine. That did the trick. She was asleep in less than 5 minutes. 

She slept for about 15 mins and then woke up and was ready to eat. We kicked in a good old Boz DVD and enjoyed some strawberries bananas,, toast, yogurt and ice chips. We even had a few laughs at Boz and she seemed sort of happy. The verse no doubt. But it made me feel better. 

Tina arrived before she finished eating and was greatly welcomed. By both Anna and me. This was around 10:15. Tina was able to hold Anna for about 5 minutes.  Like we suspected it caused her a great deal of pain. But, in the pain came some good as it helped her release some fluid drainage which we are told is a good thing.

She received some morphine and was put back into bed. After a short time she dozed off again. Upon awaking she started crying and asking to go home. She said she was sacred, which breaks our hearts (no pun intended). 

Tina has been sitting with Anna for the last few hours.   She has been able to keep her from getting extremely upset however, they locked the unit down as they were getting a patient settled in from surgery which means Tina was asked to leave the unit for a while.  Anna Grace was then inconsolable and again had to be given versed.

Prayer request are: 

For Anna' anxiety to subside 

For chest tube drainage to dry up

For no Chylothorax 

For no infections

For overall strength 

We are grateful for your prayers. Thank you!!!

The Bentleys

Sunday

Anna Grace has made some progress today and had a setback as well.  The night went fairly well.  She only got agitated once last night and was calmed with versed.  She did take a couple of sips of water for me during the night.  She spiked a temp last night so Tylenol was given and brought it down.  Brian arrived back at the hospital about 5:00 am and then I left for a few hours of sleep.

While Brian was with her she are some applesauce and 2 strawberries!  That was a huge answered prayer and she did not vomit after eating which is another huge praise.

Anna Grace has remained stable and much more calm today when she wakes up.  Although, whenever she is awake she just says "I want to go home" in the most pitiful little voice yiu've ever heard.  Poor baby!

The surgeon on call, Dr K, pulled AG's RA lines today and a monitor which has been taped to her forehead has also been removed.  It's a great thing to see a few of these lines leaving her.

The thing which has been a bit of a setback is all the chest tube drainage.  She currently has 3 chest tubes and they are all draining a lot.  More than the doctors would like.  They started a medication today that might help that and will reevaluate tomorrow.  They said they would not send her to the floor ubtil that dimishes at least some. So PLEASE pray for the drainage to diminish or stop all together.

I was also told that due to the amount of drainage she's having it is highly likely she has chylothorax but we won't know for sure until she starts eating foods which contain fat.  I have a couple ideas that I'm going to throw the doctors way about this, but I'll save that for later after I talk with them.

So, the last 24 hours have been full of praises and prayer requests.  Thank you all for faithfully praying for our little girl.  I'll keep you posted,

Summary

Today's goal was to get Anna Grace awake enough to eat some ice chips, drink some water and possibly eat some applesauce.  She wasn't able to meet those goals today because she was just so upset whenever she would wake up.

We are hopeful that Sunday will bring greater strides in that area.  Since she was so agitated today Brian and I are tag teaming an all nighter with her tonight so that she has either her Mom or Dad with her at all times to help comfort her.

Medically speaking she has had a very steady day.  She has been stable and all of her numbers have been right where they want them.  I am hopeful that the doctors will maybe pull some of her lines tomorrow since she has been so stable.  I know that would probably help AG feel better.

Please continue praying for our girl.  Today has been another roller coaster of a day, but truly, we have so much to be thankful for tonight.

Oh, I am slightly embarrassed to say that I forgot that today was our wedding anniversary.  12 years today.  My sweet hubby reminded me by telling me Happy Anniversary.  Yes, I forgot my own wedding anniversary!  My husband is wonderful and I am so thankful to be married to him.  I am proud to be Brian's wife and so thankful the Lord saw fit to bring us together.  What a journey!

Saturday

Blog Update Post Surgery 

One of the toughest things a parent could ever have to do is leave their small child in the hospital by themselves. Unfortunately for parents with children in the PCICU this is often necessary. There are no beds for guests to sleep in and they often have to lock down the unit for emergencies. 

This was our lot last night. We were forced to make the decision - to stay and stay up all night or to head back to the town home for some rest. Staying seemed the best thing, but the truth is Anna was going to be heavily sedated and sleeping most of the night. Leaving meant we could get some much needed rest.

We were only 15 mins from the hospital, so we decided it would better not only for us but also better for Anna if we went home to sleep. Better for us in that we actually did get almost get 6 full hours of sleep, and better for Anna in that we would be better rested to help comfort her as she started to wake up through the day on Saturday. So with much reservation, we left around 10pm. We were beat.   Physically and emotionally.

Anna, by Gods good grace, did excellent through the night. She rested well and came off the ventilator around 3am. She has progressed fine and the doctors seem very pleased.   There have been just a few hiccups today and the doctors are tweaking her medicine to help that.

Mostly today we are walking that fine line with pain medication and allowing her to wake up a little.  The doctors would like for her to have some ice chips, a little water and possibly some applesauce today.  So, we will see how the day goes.

I was told it is not uncommon for the to vomit when having food/drink for the first time which must be terribly painful, so our nurse has ordered some zofran to give her before we attempt food/drink.  Please be praying about this.

Also, it is still too soon to know about chylothorax so please continue praying about this.

As for our plans for tonight, we'll just wait and see how the day goes.

Zachary has been here with us most of the last 2 days playing in the hospital playroom making friends and having a great time!

First Hurdle Accomplished, Many More To Come

Surgery was finished around 3:30pm today.  There were no big surprises during the procedure (called The Fontan).  Everything they needed to get done during the surgery they were able to get accomplished.  The only issue was when they had to bring Anna back onto the heart and lung by-pass machine at the end of the surgery.  The surgeon (Dr. Bradley) saw something he thought might be an issue.  They re-assessed the issue quickly and made one small adjustment.  She did fine and came off the heart and lung by-pass machine while staying very stable.  She lost a little more blood than they like to see, but they felt it was not going to be too big of an issue.  The surgery was finished and she was brought back to the PCICU.  We then waited for the surgeon and head nurse to come and chat with us.

We had a private meeting with Dr. Bradley and the staff for about 10 minutes.  Tina and I took some time after the meeting in our private room to catch our breath, and took some time to pray thanking our Father on high for His grace.  We asked our Lord to bless those who prayed so desperately for us during this long coming journey.  We also took some time to come back down to earth that this is the first of many hurdles we have to overcome during this trial.  We asked for continued grace to stay strong and be faithful witnesses during whatever the Lord seemed fit to ordain to come our way.

We were then able to see our sweet Gracie-Poo at about 4:30pm.  Since the departure was so difficult this morning, it was bitter sweet to see our little girl still alive.  There are no words to explain what a father and mother go through during such a major medical procedure.  The Lord was good to allow our joy to increase also by allowing some of our family and close friends to see her as well.  Anna was still very sedated and sleeping.  This was a good thing though because of the 3 chest tubes, ventilator and complex spider web of wires coming out of her body.  As rough as she looked, we were so very grateful to see her.  It was a very sobering moment for us and His grace was not unnoticed.

We then left her with the nurse to get a little more settled into PCICU.  Tina and I said our good-byes for the evening with family and friends and then sat down at the hospital cafeteria for a quiet dinner.  Well it was a quiet dinner except for one lady sitting close to us who was talking to the television news anchor, but that conversation was doomed from the beginning and ended quickly.  It was soon quiet and we were able to reflect on how hard the day had been.  We both felt ran over by a train.

After dinner we came back to the PCICU to see Anna.  We ran into the doctors making their rounds and got some good info on Anna’s current condition.  They said Anna looked really well for the most part.  She is having an issue with some clotting and the doctors prescribed a medication to help.  Also her blood pressure is trending a little high and a medication was added to help that also.  Other than that she is on the standard post-Fontan medication cock-tail.

As I write this I am sitting in the PCICU waiting room.  My heart is joyful but sorrowful at the same time.  It was good news for us today so far, but not everyone in the PCICU can say the same.  There are many, many sick babies here.  As quick as one seems to be getting better the next second they are getting worse.  It breaks my heart at what Adams sin has wrought on this earth.  The brokenness is real and very painful.  Please not only continue to pray for our sweet Anna Grace but also pray for these sick kiddos and their families – especially their mommy and daddies. 

I am currently listening to Josh Garrels and taking great hope in Christ Jesus who has overcome.  Though life is painful now, it will not always be that way for those who are in Christ.  Josh says it well with the following in his song Pilot Me:

“I will arise and follow you over - Savior please, pilot me - Over the waves and through every sorrow - Savior please, pilot me - When I have no more strength left to follow - Fall on my knees, pilot me - May your sun rise and lead me on - Over the sea's - Savior pilot me - O' Lord”

Anna' Mid Day Update

We apologize for the lack of updates.  It’s been a long tough day.  Anna is currently still in surgery, but we are hopeful she will be finished within the hour.  For quicker updates please see @bentleybrian twitter account, Tina’s facebook page or my facebook page.  Here is a brief summary of what has transpired today.

It took almost 2 full hours to get through scar tissue.  She finally went on heart and lung by pass around 10am.  The surgery progressed rapidly with the team getting to about 75% finished by about 12pm.  She came back off the heart and lung by pass machine briefly and then had to go back on.  The surgeon saw something he did not like and needed to be revised.  She went back on heart and lung by pass around 1pm.

At about 2pm she came back off the heart and lung by pass machine.  They are in the process of getting bleeding to stop and hope to be wrapped up in about an hour.

Thank you for your continued prayers.  We are grateful!!!

A Long Day That Has Just Began

We were able to get back to the townhome from the hospital last night around 5:30.  Miss. Lauren and Zach were still off exploring the Charleston Fort and beach area.  We settled in and tried to catch up on messages from family and friends.  It was nice being out of the hospital for the day but the weight of having to be back at 5:30am this morning was still looming over us.  Tina and I had a long hug and prayer and tried to remind each other that Christ is King and will give enough grace to sustain us during this trial.  We confess and believe He has overcome the world, sin, death, and disease.  We believe His will, will come to pass perfectly. 

The grandparents and a dear friend from Michigan who flew into Charleston to support us came over around 6:30.  It was nice having a house full of people to keep our mind from dwelling too much on Anna’s coming surgery.  Miss. Lauren and Zach arrived back home around the same time and Zach had much to tell us about his grand adventures from the day. 

We all enjoyed a nice big meal provided from our dear friends at CrossBridge Ministries and just had some sweet fellowship.  Everyone left around 8:00pm and we got the kids down and then turned in.  Sleep was minimal.  Tina and I were up at 4:00am crying and pleading with our Lord to sustain us, protect Anna and for His will to be done.  Having to let Anna go this go around was starting to be overwhelming.  She looks so healthy but we know she desperately needs this procedure. 

Anna asked where we were going and we told her back to the doctors so they could work on her boo-boo on her heart.  We felt bad because she has no real idea what that means.  We can do nothing but trust in the Lord to cause these memories to be faint shadows in her mind.    

Once at the hospital we got through check in really quickly.  That was nice.  But, unfortunately Anna’ anxiety started to increase once we got back to the nurses check in area.  She would not take the oral medication that was going to help her relax.  Tina and I had to hold her down and try to force her to take it.  This was terrible for us.  I kept thinking, “there must be a better way to get her this medicine!”  They finally decided to give her a shot , which caused her to cry even more, but she was relaxed and out of it within 5 mins. 

Letting her go was amplified by the stress of getting her the medicine.  It took Tina and me some time to compose ourselves after letting her go and then we headed off the PCICU waiting room.  We are now waiting for the first update, which should come shortly.  We will try and give another update later this afternoon.  Again, we covet your prayers.  Thank you for your faithfulness to lift Anna and our family up.  May our gracious King Jesus be exalted through our trial and may He bless you for your faithfulness in praying.

 

Pre-Op

Tina has asked me to make a quick blog update, so this is my attempt to fill everyone in.. 

Everyone arrived safely to Charleston yesterday. We had no real serious issues upon arrival except the heating system in the town home we are staying in went out.  It got a little chilly last night with the temperature dropping to around 40, but we got out a few more blankets and we're able to keep warm. Anna ended up in bed with Tina and I around 3am. Sleep was off and on but we did get a few hours of shut eye. 

We were up around 6am this morning. Tina, Anna and myself were off to the hospital around 7am, while Zachary and Mrs. Lauren stayed behind to meet the HVCA technician. I think Mrs. Lauren and Zachary might go to the Charleston Fort and beach this afternoon. I'm sure they will have a blast. 

We arrived at the hospital a hour early, which worked out well for us since we breezed through registration without any bumps. Once up in the Pre-Op room Anna finally starting giving us some issues. Up to this point she had been having fun and in a really great mood. But as soon as the nurses starting trying to get her weight and height she got very frightened. This was our first real trial this morning. It's hard to see your child so scared. 

Well, she finally calmed down enough to get her weight, height, O2 sat, EKG, and blood pressures. The nurses gave her a baby doll and medical toy kit, which caused her get into a better mood. We then took off for x-rays and the echocardiogram and she did phenomenal.  

So, now we are back in the Pre-Op room. We still have the following left for the day: Blood work (going to be tough) and then meetings with doctors. I'm sure Tina will give an update on any surprises we might find out after the meetings today. But if for some reason she doesn't, please know we desperately covet your prayers. The surgery should start early in the morning around 7am. We will try and give updates as we can. 

One Super Busy Day

The day started early for me today!  I was standing in line at the polls this morning at 6:30 am.  Yes, I was actually in the line at 6:30 am.  There were about 15 people in front of me and it was dark and cold outside.  But, I knew if I was going to get to vote today it would have to be early, real early.  So, as you know the polls opened at 7:00 and I was back in my car at 7:18.  Not too bad of a wait time!

From there I headed home to get the kids dressed and fed before Miss. Lauren arrived at 8:30.  As soon as she arrived I headed to the hair dresser to take care of some grey roots.  Since I figure my hair will be pulled back into a pony tail for the next 4 weeks or so I thought it would be a good idea to take care of that so people don't mistake me for Anna Grace's grandma :)

The next stop on my busy day was to the Toyota dealership to have my van serviced for the big car trip.  I don't need to be breaking down with two kiddos in the car with me.  It took longer there than I anticipated, but the car has had an oil change, tires checked and been throughly looked over and deemed road worthy :)

Next stop, the car wash.  I use one of those places you wash it yourself.  It's just cheaper and I'm slightly embarassed by the sheer number of goldfish laying on the floorboard - so it's really better for me to take care of that on my own :)  The car has been washed and vacumed and is now ready to be packed to the top with suitcases!

Next stop - Sam's Club.  I just needed to stock up on some basics before we head out of town - you know toilet paper, paper towels, diapers, wipes, etc.  Forgetting that kids were out of school today - Sam's was packed, but at least I didn't have my kids with me thanks to our sweet Miss. Lauren!  We now have 5,000 rolls of toilet paper and 2,000 rolls of paper towels.

Once I got home I needed to sit down at the computer and pay some last minute bills.  The next thing I knew, it was 5:00 and time for Miss Luaren to go home.  We said good-bye to her and then the kids and I picked up dinner and brought it home.  Then bath and bedtime and I just now finished the packing of the suitcases!  I have to say, packing Anna Grace's bag was very emotional for me, more so than I thought it would be.  Packing all of the pajamas and slippers in anticpation of her heart surgery was just plain hard.  In the midst of the craziness of running around today the truth is, I have a very sick little girl and all of those little pajamas reminded me of what all the running around is really for.  Stop.  Deep breath.  Pray.  Yes, the Fontan is here and the Lord will be with us.  OK, I can go on.

What a super busy crazy day (and a tad bit emotional too)!  Brian is trying to get things wrapped up with his work.  The kids and Miss. Lauren and I are heading out Wednesday morning.  Brian is going to follow later in the day once he gets things in order with his work.

Tomorrow is going to be another big busy day for us and we head to Charleston and get settled.

I do have to say that throughout the day today so many friends and family have called me or sent me notes or dropped goody bags by our house today - just to tell us that they love us and are praying for us.  It has meant so much to all of us to know that we are surround by people who love and support us and are so faithfully praying for Anna Grace.  We are so grateful to each of you!  I am not an eloquent enough writer to express how much these things mean to us.  To each of you I just want you to know that we sincerely thank you and we appreciate you thinking of us and loving on our family.

Since we will be on the road a good bit tomorrow I might not update tomorrow night, but I plan to on Thursday for sure.  Thank you friends for continuing to follow our story!

A Day At The Lake & Surgery

It was a beautiful day here Saturday and our family went down to visit Mee-Mee and Grand-pop down at the lake for the day.

We took a really long boat ride, over an hour at least.  The water was smooth, the temperature was warm and there was a slight breeze.  It was such a lovely day to be on the water and we all had a great time. 

That evening we had a fire in the fire pit down by the water complete with smores - although my kids just wanted the marshmellows and they didn't really want them toasted, they just wanted to eat marshmellows :)

After the fire pit it was time to hit the hot tub.  The kids love sitting in the hot tub after dark.  They had a blast!  It will be the last time in the next 2 months we will get to play in the hot tub so it was especially fun!

We drove home that night and the kids were fast asleep in the car.  We were all tired from all of the fun and memories we made at the lake that day.  What a great day we had!

Sunday night we had our babysitter Miss. Lauren come over to watch the kids and Brain and I went out of a date.  We know that this will be the last date we will be able to have for a while and the evening went by too fast!  Surgery seemed to be the main topic of conversation on our date.  Truthfully, we haven't really talked too much about surgery other than the logistics of it so it was time for us (and good for us) to share how we were feeling about it, what we were going to say to the kids, when we were going to say it.  All things that really needed to be talked about.  At times the conversation was very emotional so I wouldn't say it was a "romantic" date, but it was good for us - if that makes any sense.

Today will be my day to finish doing the laundry.  Tomorrow Miss. Lauren is coming over again to help watch the kids while I do last minute running around to prepare for our trip and do the packing.  I would also really love to clean my house at some point, but I'm not sure if that is going to happen.  I could/should do it today, but why would I want to waste the day cleaning when I could be playing with my kids?!?!?  We have a big week coming up and those memories will be more important than I clean house I think.  I think I may have talked myself out of cleaning today :)

Oh sometime tomorrow I'd like to try to vote in the midst of everthing.  It is the hot topic of conversation in the nation, but it really has been an afterthought for me lately.

Our plan right now is to still to leave on Wednesday morning which will give us the afternoon to buy some grocies and things.  Thursday is a planned 6 hour pre-op appointment.  The paperwork said that there is apossibility that AG will need to be sedated for her pre-op appointment which means fasting the night before.  Ummmmm.... AG has a lot of doctor anxiety so I figure sedation is pretty much guaranteed for her!

Things to pray for:
(1)  Safe travel to Chalreston on Wednesday.
(2)  Pray for Miss. Lauren as she will be keeping Zachary for us during all of the hospital stuff.
(3)  Pray for Dr. Bradley the surgeon.
(4)  Pray for Anna Grace to not be scared and to be cooperative.
(5)  Pray for no complications during surgery.
(6)  Pray for no infection.
(7)  Pray for no chylothorax.
(8)  Pray that we might be an encouragement to others even in the midst of this.

Thank you friends for faithfully following our story and for praying for our family.  The Lord truly has walked and is walking with us through this.  We trust the Lord and His soverign plan for Anna Grace and for our family.  The Lord is changing my heart to focus on each day and to enjoy each precious moment in the day - this has helped me to not focus on or worry about the future so much which might otherwise have consumed me.  I am thankful for this.  I covered it in about 2 sentences here on this blog, but for my life it has been a huge, huge blessing!

Surgery November 9

Quick post to let you know we heard back from Dr R today.  He said that Dr B said we are still fine for the November 9 surgery.  So, looks like we're still planing for surgery next week.  Thank you all for continuing to pray for Anna Grace!