Sunday, June 12, 2011

Abby's Recovery

It's hard to believe that we were still in the hospital a week ago.  You'd never know by looking at her that she just had open heart surgery!  I'd say she is 80% back to normal and would probably be more so if we'd let her, but we do have to try and hold her back from doing all of the crazy things she'd like to be doing.  Her recovery has been nothing short of a miracle, never would we have thought she would be doing so well this quickly. 

Up until today she's been walking a little hunched over - I don't think she likes her shirt rubbing against the incision and she is extremely self conscious of it which I never would have expected.  She doesn't want to look at it and doesn't want anyone else to either.  A couple of nights she actually slept in the shirt she was wearing that day because she got so upset when I tried to take it off.  I felt so bad the other day when she said that if someone doesn't like her they would say "ha ha Abby has an owie" and I told her that no one doesn't like her, everyone loves her and she said "but someone that doesn't know me might not like me and they would say that".  Where in the world did that come from?

Today we went to Allouezfest and she got to see her friend Ava and later she got a visit from her friend Cece and she was thrilled, they played dressup for a while and even played a game of croquet! She'll still be home for a couple of weeks until she is healed and we are comfortable sending her back to daycare so it's nice when she gets these special little visits!

Tuesday, June 7, 2011

Abby's Home!

Yeah!  We are all back home as of late yesterday afternoon.  Abby is doing incredibly well - way better than we could have ever dreamed or hoped for.  Even at the hospital yesterday morning she still wasn't really eating much, didn't want to go potty and would only take a few steps - the minute we got in the car she completely changed - She was singing along with the songs I put on my ipod for her and wanted a Happy Meal.  When we got home, she wanted to go see her new garden and she walked all the way there and back holding our hands but within about 10 minutes she was no longer holding on and was asking to ride her bike!  Needless to say we said "NO"!  Then she went over to the neighbors to see their dog, she plopped down on the grass to play with her and then got up without any help or even a wince.  She had a great nights sleep too - no one coming in to take her temp or check her blood pressure, she was as relaxed as she could be sleeping with her arms up over her head like she always does - except that I had thought that that was supposed to hurt - but not her!

We may have a very hard time trying to restrict her the next two week, but i'd say shes about 80% back to normal.  She even smacked her brother this morning when he tried giving her a kiss - such brotherly/sisterly love!

Thank you again for all your well wishes and prayers for her - they definately worked!

Sunday, June 5, 2011

The Healing Power of Family

Today, my parents, Logan, my brother Tim and his fiance Lisa spent the afternoon with us.  You should have seen the smile on her face when she saw them - especially her big brother.  He even got her to go down to the playroom in a wheelchair and then for a ride outside in the healing garden.  Before they left, we reminded her that she had one more goal to meet today in order to get her 5th sticker and therefore her prize and she did it!  While it was only a few steps she still did it and has gained some confidence back so Fluffy the white guinea pig will soon be joining our family.  Now to keep her walking I told her that she could earn toys for her guinea pig by continuing to keep trying - this could get expensive, but it's worth it!

Ups and Downs of Recovery

Abby was moved about 1pm yesterday from the CICU to the step-down unit which basically means that she no longer needs the 1 to 1 care.  Obviously we were thrilled that she didn't need the care, but the first quite a few hours weren't real thrilled with the lack of care either.  We'd gone from such exceptional care, someone always there telling you what was going on, what their goals were etc to pretty much nothing.  We knew that we needed to get her up and out of bed, but that's not such an easy thing when a child has just had open heart surgery and we kind of felt like we had been dumped and didn't have the support we had in the CICU.  We obviously were worried that we could hurt her, but thanks to my friend, Molly (thanks, Molly) she convinced us that we can't really hurt her. Abby was refusing to take any medicine, and we basically had to hold her down to give it to her, she wouldn't drink and we didn't know if she should be eating or if it was ok that she not.  Finally we asked and were told it was ok that she not eat but that the sooner she was up the better, finally someone came in to help us get her up and get her to the bathroom, but she was getting herself so worked up she got sick a little bit.  So not only was she scared to get up, but she's also never thrown-up either so that had her pretty upset.  She went back to bed and we decided not to push it any more for the day because she was getting REALLY mad at us - i've never heard "I hate you, you're mean" so many times in my life!   Her pain seemed to be in her back which was from laying around and we couldn't convince her that if she got up it would be better so we figured tomorrows a new day and maybe we'll get more help.

Later last night we made a call to my parents so she could talk with them and with Logan and Logan answered the phone - she had the hugest smile on her face when she heard his voice, it made me cry!  Talking to them really cheered her up.  She had a pretty quiet night and slept fairly well.

Thankfully, this morning she seemed to be doing a lot better, she ate breakfast, was drinking and this awesome therapist came in and was the first person that Abby didn't scowl at!  She worked on movement of her legs and arms and basically made her sit up, put her feet over the edge of the bed and walk to Dad in the chair and she did it!  She's been sitting in the chair every since!  We were just having such a hard time reasoning with her that we've realized we just need to make her do it and know that it will be ok!

Our goal for this afternoon is to get her walking around the room and hope that a visit from Ama and Papa and Logan will help make that happen.  She's been crying a lot because she wants to go home and because she misses Logan.

The cardiologist came in the room a little earlier and says that if she stays as good as she is today we will be going home tomorrow!  Obviously we know she'll recover much quicker at home, but its also a bit scary.  Pat's pretty tough with her if need be because she can be a stubborn little thing and if she doesn't want to do something, she's not doing it.  He finally told her that if she doesn't get out of bed and walk, she's never going to leave - nice one Dad, that's a little harsh! 

A co-worker friend of mine had given her a school book that had a sticker chart in it so we figured out some goals that we could work on today and that she would get a sticker each time she did one of them and once she got 5 stickers she would get a prize.  We put on there:  eat breakfast, sit up in bed, move to the chair, go potty and walk around the room - so far she has 3 stickers and  I have a feeling we are going to be getting a guinea pig in the very near future - he already has a name "Fluffy".

So, hopefully my next update will be that we're coming home!  Thank you again to everyone for all of your love and support and your prayers.

Saturday, June 4, 2011

Abby's Road to Recovery!

Its been just about 24 hours since Abby came out of surgery and never in a million years would we have expected that she would have come this far!

She was pretty sedated until probably about 4am so she would wake up for a minute or two and go back to sleep so Pat and I took turns sitting with her so that she would never wake up and not find us there.

She had a low grade temperature which they said was normal when you are on the heart/lung machine and that it typically goes away after about 24 hours or so.  When she came out of surgery she had 2 drain tubes, a central line, a line in both hands and one in her foot and I am happy to say that as of about an hour ago, they are all gone with the exception of one in her hand which is there strictly to administer the antibiotic and pain medication if needed - she hasn't even had any of that since 5 am.  Her fever is now gone as well. 

The only discomfort she has had at all has been from the drain tubes and from what we've been told that is typically the only pain that kids complain about, so now that they are out she has no pain whatsoever.  In anticipation of taking them out, she wasn't able to drink anything so she has been crying a bit that she wanted something to drink - she's now had 2 glasses of apple juice and 3 popsicles.

She is still quite sleepy but has bursts of spunk that come out too - she even stuck her tongue out at me this morning, not sure why, but i've never been so happy to see her sassiness come thru as I was today.  Right now she is dozing off watching Sponge Bob.

The care here has been beyond wonderful - these are truly the greatest people you'd every want to meet, even down to the custodial staff, even they stop to say hello to her. 

Friday, June 3, 2011

Post-Surgery Update

The nurse came out and updated us at least every hour and she went on and off the heart and lung machine very well and they were able to repair the hole with her own tissue rather than a synthetic material which is great.  She was in surgery for a little under 4 hrs.  They let us spend a few minutes with her before they took her up to the CICU and got her settled there.  After about an hour we were able to go up and now are with her all the time.

She is still sedated, she did start to wake up a little once and was very agitated and was trying to pull the canula out of her nose.  My guess is that she didn't know where she was and the effects of the medication made her very anxious.  They gave her a little morphine and she was out again.  They're going to try to just keep her sedated thru the night so she can rest more easily.  She's having very little ouput thru her drainage tubes so its possible they may even come out tomorrow.  The Dr. also said that come tomorrow morning they may be able to start removing some of the lines she currently has in. Now its on to recovery!

Surgery Day

We got to the hospital about 6am today to register and have her temp and blood pressure taken again.  All she kept saying was "I don't want any medicine" so we told her it was just a little juice and she would only have to take it one time.  She also wasn't very happy that she had to change out of her jammies and wear a hospital gown.

Giving her her DSi last night was a saving grace because it kept her really occupied and her mind off of everything.  They gave her some Versid (sp?) and about 30 minutes later, she was loopier than loopy.  We were so worried that she would be scared when they took her and I knew i'd be a blubbering fool so it was actually really kind of nice that once it kicked in she was definately in her "happy place".  When they took her from us to take her into the operating room, she was laughing hysterically and asking me why I had 3 eyes.

So, now the long wait begins - they hope to be finished by about noon and said they would be out at about 9 to give us an update.  At that time, the surgeon will be about ready to go in and do his part.  They came out after about 15 minutes and told us they had given her anesthesia, put in the breathing tube and ivs.  I believe the next step is putting her on the heart lung bypass machine at which time Dr. Woods will come in and do the repair - the repair is only supposed to take him about 35-45 minutes.  Will update when we know more.

Thursday, June 2, 2011

Pre-Operative Appointment

Today we arrived at the hospital at 9:30 am to meet with the Child Life Specialist so she could show Abby a video about what her hospital experience would be like.  She also showed her some of the things that the doctors will be using such as the mask to administer anesthesia, a syringe for medicine and a doll that she could draw on.  She also gave us a tour and showed her where she would  be be staying and took us to the various playrooms.

Once we were done with that, we met with the Surgeons Physicians Assistant who took her medical history, explained the procedure again and answered any questions as well as giving her an exam.  She spent most of the time sitting on the examining table listening to my ipod which I had loaded with Princess music and a few songs that Logan likes.  So as we were talking, she suddenly turns it up and we could hear Dynamite playing - she starts bopping and soon so did the PA and the two of them were having a great time with it!  At the end he asked her if she had any questions and she said "why do you want to keep my pee in that cup".

She also had to have an echo done, an EKG, have blood drawn and an x-ray.  We didn't want her leaving today with a bad ending so before the xray we headed to the lab to have blood drawn.  I'm definately very quesy when it comes to stuff like that, but I held her on my lap while he drew vial after vial of blood and she cried and cried and cried.  When we were done she turned white as a ghost for a little bit so I carried her to xray and she fell asleep for about 30 minutes.  Once we went into xray she woke up and was back to her usual self, did the xray and we went back to the hotel so she could finally go swimming.

We spent a really nice night swimming, had dinner at her favorite place - Noodles and came back to the hotel to give her a bath and let her play with her new present from us - a DSi.

We have to be back at the hospital at 6am and surgery is at 7:30 and should take about 4 hours.  I keep thinking that in 12 hours it will be half way done.

It's kind of been a roller coaster ride, it was devastating when we first found out and then as we talked to people here and other parents and we came to accept it and realized it was for the best and it would make her stronger.  We also knew it could be a whole lot worse.

Tonight, on the other hand, at least for myself, has been really hard.  While I have complete faith in their medical abilities, seeing her so upset at having blood drawn is haunting me - I keep thinking about what it will be like in the morning when they take her into the operating room and how she will be when she comes out.  My biggest fear is that she will be scared or in pain and as many times as I'm told that she won't be, the fear of the unknown is very scary. 

Please say a special prayer for her tonight!

Tuesday, May 31, 2011

Meeting with the Surgeon and Telling the Kids

Today Pat and I went down to Milwaukee to meet with Abby's surgeon - Dr. Woods and it couldn't have gone better!  Every time we talk with someone at Children's Hospital we are amazed and today was no exception.  It truly takes a special person to work in a children's hospital - I think they need to use the slogan "parents first, doctors and nurses second" because that is truly how they act.  They give you all the time you need to answer questions, ease your concerns and just reassure you.

We went armed with literally a 2 page list of questions and when he got done talking to us, he had addressed every question on that list except for the one about whether or not she could wear her own pjs.  And the answer to that question is yes, she can!  Of course she can, they've literally thought of everything! 

He explained the procedure in detail, talked to us about what possible issues they could run into and how they would deal with them and most impressively he allowed us to be involved in deciding what type of incision he would make, he explained the advantages and disadvantages to each and offered what he would do if she were his child, without us even asking. 

We left there feeling really good about everything, knowing that she is in the best care with the most incredible people!  I don't think people realize how lucky we are to have a hospital like that only 2 hours away from us.

After we got home from Logan's soccer game tonight we told both of the kids what was going on.  We told Logan first, explained to him in terms he could understand that Abby has a hole in her heart and they need to fix it so she can continue to grow big and strong.  We told him where he would be during all of this and that he would be able to come and visit his sister.  I have been worrying so much about how he would react and he took it really well, had a few questions but overall seemed to be ok with everything.  Abby, being only 4, doesn't really understand, we just said she has an owie that needs to be fixed and that we're going to a special hospital for just kids and that Mom and Dad will be with her the whole time.  We told her that they need to fix it so that she can keeping dancing, swimming and doing gymnastics and if they didn't do it she would get really tired and not be able to do those things.  She said "and so I can chase Sandy (our neighbors dog, who she dearly loves).  We said they will give her some medicine to make her sleepy so they can fix the owie, she wasn't real thrilled about that and said she doesn't like medicine, but when we told her she could bring Kitty with and that she would be getting lots of presents, the medicine thing didn't seem so bad.  Overall, it went incredibly well, I should have known I was worrying waaaaaaaaayyyyyyy too much about it.

Obviously, we'd prefer not to have to see her go thru this, but we feel some relief after talking to the doctor, he said that if you're going to have a heart defect this is the one to have.  He said they only do about 3 of these procedures a year that are just closures.  But, they do 300+ per year that are closures combined with other issues, so I guess we have to look at it that we're pretty lucky - it could be a whole lot worse!

Hopefully our calmness and positive attitudes towards this remain with us thru Friday!  Good thoughts and prayers, however, are still welcome!

Tuesday, May 24, 2011

My Little Princess!

Since Abby was 8 weeks old, we've known that she had a heart issue.  She was diagnosed with an ASD (Atrial Septal Defect) which is basically a hole in her heart and she also had Pulmonic Stynosis which is a narrow valve.  The Pulmonic Stynosis is now gone as her valve has grown with her.  Every baby is born with a hole in their heart, but usually it closes on its own, hers has not.  We were told that if it didn't close by age 3, in all likelihood it would need to be closed for her.

It definately has not slowed her down, she has absolutely no symptoms whatsoever!  We were told by our cardiologist a year or so ago that once the hole was closed we would be amazed at how much more energy she has.  Well, anyone that knows Abby knows there is no lack of energy or spunk in that girl.  And, for those that don't know her well, think Tazmanian Devil - a sweet one, but that's about the energy level she has.

We are so lucky to have a wonderful Pediatric Cardiologist right here in Green Bay by the name of Dr. Cousineau.  Abby seems him on a yearly basis and they perform an echocardiogram each year - she thinks they want to see what she had for breakfast!  At her 3 year visit, it had not closed and he sent all her test results to Children's Hospital in Milwaukee and they got back to him indicating that she would be a candidate for a non-surgical repair but they wanted her to gain some weight.

At her 4 year visit, they performed the echo in addition to an x-ray and EKG and sent them back down to Children's Hospital.  Unfortunately, they now feel that it cannot be closed non-surgically because there is not enough wall to attach the device to and because the right side of her heart is slightly enlarged.

After the initial shock I talked to a friend who is a Pedicatric Intensive Care Doctor and he explained that this surgery is more common than you'd know and that she would be just fine!  Once we had accepted the surgery all the parental concerns came about - would she be scared?  Could we stay with her?  Would she be in pain?  What would her recovery be like?  I have to say that every concern we had, Children's Hospital had an answer to - it's almost like that hospital was designed by Moms!  Our wondeful family and friends also put us in touch with some other people whose children had gone thru heart surgery for much more severe issues.   The common theme seemed to be that we would be in the best place with the best doctors and have the best care.  Everyone raved about hospital and the care that their children received.  I heard over and over again that they do not allow your child to be in pain - something we desperately needed to hear.

So, here we are..................we have a consultation with the surgeon next Tuesday, May 31 at 10.  Next Thursday at 10am, she has some preoperative testing  and at 7:30 on Friday morning she will have surgery.  The surgery is expected to last approximately 4 hours, only 45 minutes of it will actually be repairing the hole and they assign 1 nurse to every 2 families and all she does is watches the surgery's on a monitor and comes out and updates you each step of the way. 

They said our stay will be 3-5 nights and we can stay with her the whole time so with any luck we will be home early the following week.

We're still trying to figure out what, how and when to tell the kids what is going on but we've decided that we are going to have a really fun Memorial Day weekend and we'll deal with it all on Tuesday.
Logan will be staying with his grandparents and will be very busy while we're gone - hopefully he won't be too upset - as much as those two can fight, he's very protective of his little sister and has never really been away from her.

Please keep them both in your thoughts and prayers and we will add updates as we have something to update.

Feel free to post comments on here with little notes to Abby, she'll love it!

With Love,

The Kawulas; Pat, Lisa, Logan and Abby