Monday, May 28, 2012

Post-Op Check

Charlotte had an appointment with Dr. Horne for her post-op check.  The best thing about the appointment was to see Charlotte's oxygen level was 92%.  Thank you Lord !!  I was really dreading this appointment because I thought Dr. Horne might take out the stitches that Charlotte has in her tummy.  Charlotte thinks that her stitches are a spider, it's really cute.  I can ask her where her spider is and she will pull her shirt up.  I don't know how she came up with "spider" because if we are outside and she sees a spider she screams bloody murder, so I would have thought it would scare her to have a spider on her tummy??? 
Anyway, Dr. Horne wanted to wait til the following Tuesday to remove the stitches and have a chest x-ray to make sure the plural effusion had totally resolved.  I was hoping that he would have an x-ray during the visit because Charlotte has had a wet cough that doesn't seem to be getting better and I wonder if it's related to the effusion, or allergies?  I pray that it is only allergy related so that maybe allergy medicine will take care of her symptoms.  The only thing that worries me is that it is more apparent at night when she lays down.  I think that I will call the pediatrician Saturday morning and see what she thinks.  I know I am probably over thinking things, but I get worried very easily when it comes to Charlotte.  I hate  to think that something could be going on with her lungs and me wait til Tuesday for the x-ray, I would never forgive myself.  Besides, the only time she complains about anything is when she coughs.  She gets this look on her face and I can tell it hurts and she tells me "I ok mama, I ok".  Bless her little heart.

I decided to call the Pediatrician on Saturday and she agreed with me that Charlotte is suffering from allergies.  Charlotte's x-ray looked good so I am feeling much better about the labored breathing at night.  I think maybe the muscles in her chest are just tight and it hurts when she lays flat.  Glad we got the x-ray out of the way instead of having it at the cardiology office.  Lord, I pray that you heal my little angel, and help her overcome the pain that she is suffering from.     

Wednesday, May 16, 2012

Home bound :)

Six days, the longest six says of our lives since out last stay in Charleston (Charlotte's birth) and finally we get the green light to go home.  Brian has gone with Charlotte to x-ray and echo and I stayed behind to make a few phone calls.  Around 1p.m. the doctor came in and announced that as long as the reports of the x-ray and echo come back normal we get to leave today.  I am so ready to get home, back to my children, our life, back to being normal.  About an hour later the doctor comes back in and informs me that everything looks good, he is waiting the final report, but we are getting discharged!!!  I hug this man, the doctor, and I head straight to the echo department to find Brian and Charlotte.  I want to tell them the GREAT news!!  Seems that the echo took a little longer that I thought because when I got there, I had to wait about 5 minutes before the door opened.  I didn't want to disturb the tech knowing so I just waited.  When the door opened, Brian is carrying Charlotte out to the wagon and I just started crying.  Brian is all worried and all I can say is "home".  I think after a few minutes, Brian finally understood what I was telling him.  As we walk down the hall, I finally get it together enough to tell him everything looked good to the doctor and we were being discharged.  We get back to the room and I get everything all packed up, Brian takes it to Ronald McDonald House and he packs everything there so that when we are ready to leave all we have to do is put it in the truck.  It's probably 1ish by this time and we decide to head to the cafeteria to get lunch because Charlotte is hungry.  We wanted to eat somewhere else seeing as we've ate hospital food but o-well.  We didn't get back to the room and seated when the nurse walks in with discharge instructions.  Brian said, "I knew this would happen".  Charlotte ate half my pizza and right as the nurse was finishing up instructions, Charlotte thew up all over herself :(  I am about to panic thinking we are going to have to stay.  Seems that the wet cough is a little drainage as well and it has made her tummy sick.  I am surprised that we are getting to leave but THANK GOD we are out of here!!  I am so happy, but I think Charlotte is more excited and happy than I am.
    I thought when I laid out her clothes that the shirt I chose was fitting for the occasion.  It tells a story that only a heart family would understand.  We head back to RMH, pack up the truck and head to the ponderosa.  We get home before the girls get there, but we are waiting outside for them.  When they get out of the truck, Charlotte runs to the girls and they run to her :) such a sweet sight.  It gets a little crazy having everyone together, but I sure have missed the crazy and loud giggles and screams of all of the girls playing together.  The sound of laughter is music to my ears.  I am so glad to be home, THANK YOU LORD for all your blessings and answered prayers! 

Just a little note, there was a little girls names Katherine in the bed beside Charlotte in PCICU.  Her parents have just found out that Katherine is in need of a heart transplant.  The day we left PCICU, they had found out that Katherine had been approved and placed on the transplant list.  Please keep this family in your prayers!!  Also, I met another couple that live in Boiling Springs that have a daughter named Kirby.  Please keep this family in your prayers as they travel the road of unknown like so many of us.

Post-op Day Six

This morning at 3 a.m. when the nurse came in to check vitals, she woke Charlotte up and I was upset.  Why can't these people realize that we all need sleep?  Well, I guess the Lord had a blessing in store for me.  After the nurse left, Charlotte asked me to turn on the movie Despicable me.  While we are laying in her bed trying to get her back to sleep she looks at me and says "chickalay mama".  I get the box and cut up the chicken and gave it to her.  Little to my surprise, she ate all the chicken, 2 strips, and drank the rest of her orange crush from supper.  A little picnic does the body good:)  I have been praying for her to get her appetite back and the Lord answered my pray!

  Finally around 4:30, Charlotte falls back to sleep and so do I til the nurse comes back at 6 a.m, vicious cycle around here.  I figure I just need to get up and get a shower because around here after 6 a.m. the revolving door of doctors and nurses start.  Charlotte is scheduled for another chest x-ray and echo this morning.  Hopefully we will get good news, because if they look good, we get out of here today!!  The x-ray looks good from the one yesterday morning, so now we wait to hear about the echo.

Poor Brian, Charlotte has walked his legs off this morning, asking him to pull her in the wagon.  He pulls up to the door of the room after walking all over the hospital, and she just sits there looking at him like hello, what are you doing, take me for a ride!!  He falls for it every time and off they go.  Charlotte doesn't care where you take her, just as long as you take her.  I know for a fact that Daddy would move heaven and earth for his little angel, so a little wagon ride, nothing to it.  After all that she has been through, if it makes her happy, he's happy to do it :)

Tuesday, May 15, 2012

Post-op Day Five

Charlotte has done well through all of this so far.  Last night was a little rough because of the IV:( The nurse was kind enough to run the meds through slowly and it seemed to help.  Finally Charlotte is up and ready to troll around the hospital.  She's funny, when we get her out of the room, she cries when we have to go back and she just begs us to take her "dis way" as she points in the opposite direction of the room.  We got her out to the Atrium this morning, and she had so much fun.  Our room overlooks the Atrium and there are kites and things hanging from the ceiling and she had been begging to go since we have been on 8D.  Charlotte has a love for trains, so when she found the train table she didn't want to play with anything else. 
I must admit it is a little challenging getting her around with a monitor attached to her with wires that hang.  Finally I just decide to let it lay on the floor and let her drag it around, what could it hurt?  Saves my back that's for sure!!  I know with all the walking and playing it makes for a really tired little girl.  Today has been a little concerning for Brian and I.  Charlotte just looks weary, and her eyes are a little sunken in.  Then she tells me she wants to potty and when I sit her on the potty she screams and cries:(  I think she is constipated and I have asked for some miralax, I just hope it works quick.  Charlotte hasn't had anything to eat most of the day, and that bothers me a little.  Usually she eats one meal a day, but so far nothing.  Brian and I took her to the cafeteria to see if she saw something she wanted for lunch........Pickles, dill pickles.  I can't believe she has picked pickles for lunch, but hey if that's what she wants.  It's Poop time in room 831:)  I think if you could smell it all the way to Spartanburg if you tried!!  I am so Thankful that she has pooped, she acts some better now!  Supper time and we take her back, "chickalay" is what she has spotted this time.  I don't believe it, but she ate two strips of chicken and drank a orange crush.  We got great news that Charlotte's meds have been changed over to oral and the one dose of the second fluid medicine was all she needed, so no more IV, Thank you LORD!      

Post-Op Day Four

Happy Mother's Day to me:)    I miss my older girls so much, I hate that we are away from one another,  prayerfully it want be much longer before we are back home and all together.  So last night was uneventful to my surprise, at least til 4 a.m.  The nurse came in and was checking vital and asked if Charlotte had a wet diaper.  I proceed to check and sure enough, she was soaked, bed and all!  So I changed her diaper and washed her off and the nurse changed the bed sheets.  After all that excitement, Charlotte wanted me to sleep with her.  I'm thinking how is this possible???  Well, I scoot her over to the side of the bed, Chest tube, wires, everything I can move and SQUEEZE in the best I can:)  After I got in and somewhat comfortable, she snuggles up to me and rubs her face on my shirt like she always does at home.  I knew I was where I was suppose to be.  It was nice to see her snugly and happy:)  It took forever for us to fall asleep, or so I thought, then a knock at the door at 5 a.m. - X-ray.  It didn't take long and back to sleep we went til daddy woke us up at 7:30, come in the room.  Dr. Savage came in this morning for rounds.  The x-ray still shows some fluid built up on the right side, but not as bad as yesterday.  He wants to leave the chest tube in another day and if we want we can go to the Atrium or even outside for a walk.  Brian and I was happy with the news, an uneventful day to just get her out and about and working on getting the fluid gone.  Maybe an hour later, Dr. Bradley walks in the room, all smiles and has decided to pull the chest tube!!!!  OMG I am screaming inside, I am happy, but nervous because I know another traumatic morning:(  Morphine here we come.  Dr. Bradley said as long as she does well today and her afternoon x-ray looks the same or better he will leave her alone.  If it has changed for the worse, he will have to place a small chest tube to drain the fluid on the right side:(  Not something I wanted to hear or even think about, so I'm looking at my glass half full today and pray for no complications!!!  As soon as Dr. Bradley leaves, Charlotte passes out asleep and has slept very well this morning.  Seems her O2 has been off since last night too, but her O2 is even better now that the tube is gone!!  Check out this sleeping position, I think she looks so cute:)

So the day has gone really good.  Brian and I have gotten her out and about wondering the halls this afternoon, and Charlotte has done really well.  Charlotte has walked the halls of 8D and 7C, walked the unit, we even took her outside and she chased after a pigeon.  I honestly think we may get to go home in a day or two at this rate!!!  She loves riding in the wagon and I get so tickled at her and Brian, he keeps telling her that what happens in Charleston, stays in Charleston. 

She definitely is getting spoiled while we are here.  Waiting on her hand and foot, man it must be nice.  I just hope she doesn't get to use to it so when we get back to reality she doesn't expect it.  The only trouble we have had this afternoon is the IV.  The lasix can run through the IV, but when the flush runs, she complains that it hurts.  The nurse decided to run the flush slower to see if it helped and it did.  Then tonight the nurse came in at 10 p.m. to get the IV lasix running and Charlotte screamed.  I asked the nurse to turn the IV off and see if she could just get her lasix orally.  I didn't realize it would take an act of congress to get that to happen.  The nurse paged the doctor and because Dr. Bradley decided to wait til morning on an x-ray, the night doctor ordered an x-ray to check her lungs because the chest tube was pulled this morning.  So we play the waiting game while we wait on the x-ray report and the decision on the oral med.  I pray to the Lord that she can get the oral meds, if she can't she will have to endure another stick for and IV that she will only need for a few doses of IV lasix.  Needless to say I am not real happy at the thought of torturing my daughter for that.  The x-ray came back and the doctor has added another fluid med and it has to be given IV.  I am not happy, but if it helps pull the fluid off then lets get it started.  Now the test to see how the IV holds up.  Lord, PLEASE be with my baby and help her get through this round of meds so she doesn't have to endure another IV!!

Sunday, May 13, 2012

Post-op Day Three

Day three, sheww it has started out terrible!!!  I was so looking foreword to coming to the floor, but sleeping on what ever they call this thing is miserable, not to mention that the nurse came in the room every hour last night.  Charlotte's O2 level dropped during the night and had to be put back on O2:(  Then meds every 4 hours and vitals every 4 hours.  I just wish that those 4 hours were the same 4 hours.  Then at 5:30 this morning x-ray showed up, then at 8 a.m. the lab showed up.  Then after the lab ordeal, the nurse realized the IV wasn't working anymore and had to go through another IV again.  Torture, pure and simple torture.  One good thing is that the O2 was taken off and Dr. Bradley came by and removed the small chest tube and pacing wires.  It was torture as well, but at least with the chest tube, the nurse gave her some morphine to help with the pain. 

This afternoon, after the chest tube, x-ray came back and so did Echo.  The x-ray shows a small plural effusion on the right side of Charlotte's chest, but the echo was good.  So with the effusion, she has to have O2 AGAIN and I have to get her out of the bed.  It's hard to get her up when she is attached to things that don't give her room to get up!!  After talking with the nurse, we have decided to get her up this evening and sit in a chair and blow bubbles, maybe even take a walk around the unit.
So I FINALLY got her to let me put on some jammies, she really didn't want to, but seeing as we are going out of the room, she needs something on!  Bless her heart, she has been sweating like a mule and I know that is why she didn't want them on, but Meme has worked so hard on these jammies for her, I hate to not wear them.  Charlotte is not a happy camper, but we are getting her up for a walk to see how it goes.  As I expected, not so well.  She cried the whole time she was out of the bed, even while in the wheel chair.  I hate to see her upset, but I know it's for the best.  She has to get rid of the fluid on the right side of her chest or we don't get to go home:(  After the outing, the nurse gave Charlotte some pain meds and she was like a different child, all smiles and sitting up in the bed playing with daddy.  That's the Charlotte I know and miss and can't wait til she is back 100%!!!

Saturday, May 12, 2012

Post-Op Day Two

Brian and I stayed with Charlotte last night til she fell asleep, which was 10 p.m.  It makes for a long day when we just sit in the unit all day long not being able to hold her.  When we left, we asked the nurse to call us if she woke asking for us.  Never got a phone call, so I pray that everything went well.  The nurse told us she watched movies when she woke, but didn't stay awake long.    I hate leaving her!!  Until this trip, I have not spent one night away from her and I absolutely hate that she's not sleeping with me.  I find myself waking up in the middle of the night looking for her.

We got to the unit around 8 a.m. and she's awake watching movies and looks like the Queen on PCICU.  The nurse tells us that Charlotte has had a few episodes of vomiting, but it was clear so they think it's just mucus.  Still, I get a little worried, but after a few episodes while I am there and see for myself that most of it is just juice and water that she has just drank, I don't worry as much.  Cathy the NP stoped by and told me not to worry to much because day 2 seems to be the worst for some reason.    Charlotte is asking me to hold her and I can't, so I try my best to climb in the bed with her and hold her.  The nurse decides to give her some Zophran and it helps a lot.  After about an hour Charlotte is asking for something to drink and I asked for a Popsicle to give her.  Charlotte isn't much on Popsicles, but she is absolutely tearing this one up!!!  I'm sure it feels good in her dry mouth.
 This afternoon was an exciting day!!!  We were kicked out of the unit because of a surgery case that had came back, but when we got back, Charlotte was missing some lines:)  The nurse had taken out her IJ line, this line is in her jugular vein in her neck and the arterial line in her wrist, also had taken away the O2, and the bandage off her incision.  YEA, getting a little closer to 8D!!  I get so excited when the little things start to happen:) 
Look at this beautiful face, finally a smile that will make any heart melt!!!  This day has turned out to be a pretty good day after all.  Me found out about 5:30 that we were moving to the floor and by 6:15 we were gone.  It is great to be walking the "MILE".  Brian and I both had tears of happiness flowing because that Mile is the best mile ever.  It means that Charlotte has accomplished so much and that it want be to much longer before we see Maggie, Anna, Emma, Lily and Campobello!!!  Thank you Lord for your blessings.

Post-op Day One

We asked the nurse to call us during the night if she was taken of the vent, and I got a call around 2:30 this morning that she was off the vent!!  Praise the Lord!  She seems to be doing great and she's even had a wipe down.  Seems after being taken of the vent, she threw up all over the place so the nurse didn't have a choice. We made it to the hospital around 8 a.m. and when I walked in she was sleeping like an angel.  Brian was able to get Lily inside the unit to blow kisses to Charlotte.  Lily has asked so many questions, and it is so hard to make her understand what's going on. 
It was so nice to see her beautiful face.  I walked up beside the bed and she opens her eyes and I tell her good morning, and she says "good morning mama".  It was the sweetest words, her little voice cracked and low.  I wanted to pick her up and hug her, but I know that is impossible right now, soon though.  I am staying with her as much as I can.  Charlotte is still really sleepy and that's good because she needs the rest.  We sneak out for lunch while she sleeps and back as soon as we are finished.  It seems that when Charlotte sleeps, her oxygen level drops, so the doctor wants her on O2 while she sleeps to help keep it up.  While she is awake, it runs 88% and higher.  When she sleeps, it runs in the high 70's low 80's.  You can tell in the picture that Charlotte isn't to happy with the O2.  She gave her nurse a fight when it was time to get the nasal cannula put on.  I don't blame her to much, all the tape they use always irritates her skin and she claws at it.  I keep telling the nurses to use a different tape, but everything this go round has tore her skin up.  I just pray that the Lord helps her though all this and we get out of here in a few days. 

Surgery Day

It's 2 a.m. and I am laying in the bed staring at Charlotte while she sleeps.  I can not sleep for praying.  I know that God will take care of her, but still I can't sleep.  I look at how peaceful she is and how sweet and beautiful, and I just Thank God for the time we have had together these last two years.  She is my little miracle baby.  I decide to get up at 2:30 and get a shower, and get ready.  I wake Brian up 4:00 so he can get ready and help me with Charlotte.  She is so sweet, even at 4:30 in the morning she is sweet and loving and so full of questions.  "Where we going" and Brian tells her to the hospital.  "We see Dr. Bradley?"  Brian tells her yes and she's fine, gets her bath and dressed and all wrapped up in her blanket and back to sleep.  Must be nice to sleep in a time like this, but look at her, she is knocked out!!
We have made it to the hospital and all checked in and everyone has come to introduce themselves again and the CRNA tells me I have to wake her up to give her some versed.  This is med that will help her if she is anxious and let's just say it works REALLY well:)  Look at those cheeks,
they look like they are about to bust, she is smiling so much.  We have laughed at her so much this morning after this med, that she is laughing at us.  I am just thankful that she is "drunk" because I don't think I could hand her over to anyone if she was crying and screaming.  This makes it so much easier!!  It's about 6:15 and Tim the CRNA tells us it is time to go.  We hold her tight, Pray to God and Tim takes her in his arms and off they go.  She still has no clue, she's all smiles.  We head to PCICU, get a pager and wait for the first page to let us know things have started. 

9:15 and first page, surgery started on time and Charlotte is stable.  10:15, Charlotte on bypass, stable and doing well.  11:30 , off bypass and finishing up, Dr. Bradley will be in to talk with you around 12:30 so make sure you are available.  Of course this scares me a bit, it's only been what 3 hours and we were told 5-6 hrs, what has happened?  Dr. Bradley shows up and tells us that everything went really well and quicker that he thought, that we should be able to see her in about an hour.  SHEWW, let me wipe the sweat off my brow and catch my breath, I was waiting for the bad news.  Finally get to see our sweet angel.  She's on a vent, has lines everywhere and knocked out, but hey she made it through and it will be just a matter of time before we see those beautiful brown eyes.

Pre-op Day

Pre-op day and we are on our way to the hospital.  Charlotte keeps asking where we going and Brian keeps telling telling her we are going to the hospital.  We get all checked in with admitting, then up to SDS to check in and we have a wonderful nurse named Christan.  We meet Christan when we cam down in March.  We instantly made a connection with her, so we were happy to see a familiar face.  Pre-op is scheduled from 9 - 2 today, not to happy about that. 

We start off with weight, blood pressure, temperature, you know the usual stuff.  Then Charlotte gets a EEG, then we go to Echo.  So far so good, then the nurse puts this cream and a band-aid on both arms and Charlotte hates band-aids.  I know what's coming, hopefully it will only take one stick!  Dr. Bradley comes in to talk to Brian and I about what he has decided to do and we are a little taken back.  The procedure is something that hasn't been mentioned to us until this minute, it's kind of a blow??  I really don't know how else to describe it.  We were under the impression that this was going to be a simple surgery.  Anyway, A Bi-Directional Glen procedure, closure of the ASD with a fenestration, and remove the shunt that she has will be done.  The surgery is scheduled to last 5- 6 hours.  I just start praying immediately after talking and taking in all this information.  Dr. Bradley seems to think the Glen is the best route because of the small right ventricle that Charlotte has, but she will still be able to use the ventricle.  This is good news, so we agree that Dr, Bradley knows what is best and we sign the consent form.  The Nurse gives us some instructions about a special bath that I have to give Charlotte 0_0, wow, it is crazy what you have to do to get ready for surgery.  We meet with Anesthesia, Cardiology, and the blood draw and we are FINALLY finished!  It is now 3:30 in the after noon and it is just crazy that it takes all day to get through what we just went through. 

Off to the Ronald McDonald house to get checked in and meet up with Oma, Papa and Lily, then off to eat, play and have a good time.   We have met some friends for supper that live down here and it is great to see them.  Charlotte has found a new friend and she is so sweet to Jayden, she want leave him alone. 

Finally off to the park to play out so we can get back to the room for a bath and to bed.  We have to be at the hospital at 5:30 a.m., but I have to get Charlotte up for another special bath before we leave so looks like we have to get up about 3:30 - 4:00 a.m.  Fun times at the park!!!  I am happy that my parents are here and have brought Lily.  The girls play well together and they are having a great time.  I hate that we have to leave, but surgery looms and we have to get ready.