Thursday, June 28, 2012

Home X 2

  The day has gone well.  Abby is happy to be home - as are all of us. We are almost unpacked and settled in with a medicine schedule, activity routine, and hopefully, recovery will continue to go very well.

  Now we get to start packing for our move to Roosevelt (about 10 minutes away from our current location) next month.  Yup - we are under contract!! We are sad to leave Neola, but happy to have a place of our own. I am very thankful for the many long awaited events happening this summer, and am REALLY looking forward to returning to 'normal crazy life' in the fall.

Many have asked me about what is expected during recovery.

Abby CAN: rest, have HEALTHY visitors (she would LOVE to have friends over for short visits - just contact Summer to make arrangements), walk around, watch movies, play, do lots of art projects, reading, crosswords, blow bubbles, make little crafts, etc.

Abby SHOULDN'T:  ride bikes, jump rope, jump on trampolines, jump at all, skip, hop, run, ride horses, swim (for 3-6 weeks), go without oxygen, be around large crowds, no church for a bit, etc.  Kinda hard to tell a 7 year old that their summertime won't be full of the kind of fun that she is used to.  But at least she will be able to enjoy all of those things in several weeks.

 It is truly amazing to me how much 'heart surgery' has changed from when Abby had it almost exactly 7 years ago.  (Really, her first surgery was on June 22, and this one on June 19 - almost exactly 7 years apart.)  Healing happens so much more quickly.

Recovery consists of a few yucky tasting medicines.  She ended up getting thrush  - so she is taking something for that as well.  There aren't nearly as many as I thought there would be.  Lasix - to help with swelling and extra fluids. Tylenol and Ibuprofen as needed - pain management.  Nystatin - thrush. and her normal amoxicillin and baby aspirin and vitamins.

She is also on oxygen 24 hours a day (rather than just at night as she has been for the last 18 months).  The oxygen helps with a few things - mostly to open up airways and help train her lungs to work to their new capacity as the adjust to all of the oxygen rich blood they are now receiving.  She is on just a little bit and we will continue to slowly wean her with time.  It was amazing to see her percentages going in to the 90's.  We haven't seen numbers above the low to mid 80's in a long time.

Recovery also means working hard to regain an appetite, regain weight, regain muscle, and mobility.

Abby looks really good.  There are still many achievements to be made in the next weeks and months.  She will do well.  She always does. :) She is truly amazing. Just love that girl!

Wednesday, June 27, 2012

Heading Home!

Well, all rumors were confirmed - we are heading home today! Yay!!!  It is kinda funny because there is a flurry of activity right at the beginning as we pack up all of our things, talk to nurses, etc. Now that we are finished with that, we sit and tap our fingers waiting for each part of the discharge procedure.  Nothing like a flurry of activity just to hurry up and wait. :}


We are so thankful for the care received here at PCMC.  The whole staff is so wonderful. :)

Tuesday, June 26, 2012

A visit from Emily and... an announcement.

  We had a good night - with the only exception being that of a sneaky canula. That sneaky little thing kept hopping right out of place! It would rest on Abby's nose or on her forehead.  It wouldn't be a big deal except that when it was being sneaky, all of us knew about it because the alarms would go off due to Abby's oxygen levels dipping below 80. (Funny that we used to love seeing her at 80, and now we don't love it.  Not at all.  But sometimes it takes time - anywhere from a few months to a few years to see the complete results of this surgery and see the patients oxygen levels stay consistently in the high 90's.) Finally, we realized that the sneaky canula was in upside down. It really was sneaking off all by itself and did not have the aid of cute 7 yr. old fingers as mom had imagined. ;)

  The amount of oxygen needed is getting now down to 1/8 litre most of the time, while her oxygen levels are still staying above 80, which is great.

  It has been a wonderfully full day.  We went to the playroom and made butterflies, played musical instruments, and had a jolly good time playing the piano. 

  A cute little visitor ambled in today to spend some time with us.  Emily, the dog (keesh - the national dog of the Netherlands) was gentle and great with to hang out on Abby's bed.  The girls loved petting her and her owner was so friendly and told great traveling stories.  What a treat. :)

  A good friend gave Abby a Twilight Turtle (Cloud B) to enjoy during our stay here.  The rules though, were to find another friend to give it to so that they can enjoy it as well.  Today we met a sweet girl that is almost the same age as Abigail.  She is such a sweet heart and the girls had a good chat together.  She was so thrilled to receive the turtle as a gift and kept saying that she had always wanted one and that she loved that it was pink. :)  This little girl has spent about 4 of the last 12 months in the hospital. Not all at once, thankfully, but that is still a lot of time spent staring at the walls. I can't even imagine. We made the room dark and lit up the ceiling with a rainbow of stars.  It was so fun.  Thank you friend for the opportunity that you gave us to bring joy to others.  (I want to respect the privacy of this family and because I forgot to ask their permission to share their story, I have been very vague.  I must say that I am absolutely awestruck at the miracles available through modern science.  I will also share that she has finished her phases of surgery and shouldn't have to have any more in her lifetime.)

  AAAAAAAnnnnnnnddddddd....  there is a really good possibility that we will head home tomorrow.  Depends on x-rays, bloodwork, etc. yay!  All of my fingers and toes are crossed. 

 Notes for personal reference: signs of thrush were noticed today, Nystatin started.  yuck.  But at least Abby was able to communicate well with me and I recognized the signs.



Monday, June 25, 2012

No more chest tubes = happy, happy girl!

 Abby is doing awesome.  Her last chest tube was removed this morning and after a good nap, the girl does not want to stop moving! We just finished with a long walk downstairs to get ice cream and then all the way to the 4th floor to check out the skywalk that connects the hospitals.  She walked everywhere and was so excited to be out and about! We made her come back to rest a bit and she is NOT SO patiently waiting to be able to head back out and go to the play room. :) Just love it!

  All of the movement is helping with all of her body functions and appetite.  Especially with the happiness factor!  Having the last tube removed also showed us just how much it was impeding the deep breaths.  Her oxygen levels have just skyrocketed into the 90's.  Good stuff, I tell ya. Good stuff.

 There is nothin' like bubble gum ice cream to get two girls excited to get out and walk.  We stopped to eat our snack on an outside patio for recovering patients.  There were toys and a garden specially designed for positive outside interaction.  Awesome.  Abby's strongest desire was to see the skybridge that Tessa has been telling her about.  It connects the nearby Eye Center and UofU hospital to PCMC.  We have been taking Tessa there to run and run and run.  The girls both think that it is just so cool to be walking on an indoor bridge that has a beautiful view of much of Salt Lake City.

Saturday, June 23, 2012

Silly Chest Tubes Anyway...

Thursday night Abby's left chest tube clotted off and couldn't drain properly all night. Friday morning they found that it had clotted and were able to easily clear it, but it had allowed fluid to gather around her left lung.  It has been draining properly since, but simply put her a little behind.  This morning the X-ray shows that there is still fluid around her left lung, but her heart and right lung look great.  Otherwise, Abby is doing amazing!  She went on two walks yesterday and is eating well.  She spent most of the day painting, coloring, and watching movies with Tessa, who was thrilled to spend so much time with Sis.  Once they remove the chest tubes they will observe her for another 24 hours before being released.  Since she still needs that left chest tube, our new goal is to have it removed tomorrow (Sunday) and Monday have an echo cardiogram in the morning and be released by afternoon.  Again, this is the goal but it all depends on how well her left side drains throughout today.  Her spirits are up, she seems to be healing from the emotional damage of this situation.  It's so wonderful to see her starting to act like herself again, what a blessing.
Abby made it out of CICU and to her own room!
(afternoon of 6/21)
This morning they removed her external pacer leads and the large chest tube draining fluid from around her heart.  She was doing great and ready form her own room when we got the bad news that there wouldn't be a room available for her in the cardiac wing until tomorrow.  Fortunately, about a half hour later, the floor nurse called and said that a room was available and the CICU nurses decided that it would be Abby's (there was a little boy also waiting for a room in the cardiac unit, but they decided that it was more important for a girl to have a private bathroom), lucky her!  Upon arriving at room 3075 however, Abby was a bit disappointed that the TV was smaller than the one in ICU.....I think she's feeling more like herself.

Thursday, June 21, 2012

Leaving the Cardio ICU!

Abby had a great night!  She slept so well that they actually had to wake her up each time they needed to medicate or check vitals, etc.  Her heart rate has relaxed to a normal sinus rhythm at about 80 bpm (which is excellent for her) and with this her sats are now steady in the high 80's-90% and we have weaned her back to 1 litre of oxygen.  The only meds she is on are pain meds, antibiotic, and Lasix (a diuretic to help keep the area around her heart and lungs free of fluid).  Yesterday they removed the PIC lines from her Atrium and right SVC.  Today they will remove the large chest tube that has been draining fluid from off her heart (she also has two small chest tubes, one draining fluid from around each lung, and will keep these in place for a few more days).  Soooooooo, this afternoon Abby will be transferred from CICU to her own room!  Since the first question she asked after coming out of surgery was 'when do I get my own room?,' this is obviously a big deal for her emotionally as well.  We are so very grateful for her progression during the last 24 hours.  Abby gets so nervous in the ICU with doctors and nurses constantly buzzing about, and this directly affects her heart rate, blood pressure, and sats, not to mention her mood.  We are excited for the healing that will take place in the next few days and anxious to see her running and playing again soon. Thank you to all for your thoughts, prayers, visits, and so much other support.

Wednesday, June 20, 2012

Recovery Wednesday

Abby is doing well today. She continues to make progress in the little things; getting some of the IV's removed, and eating some real food. It is all of these little things that get her out of the CICU (Cardiac Intensive Care Unit) and into a regular recovery room. She is right on track. Thank you for all of your positive thoughts and prayers - it is working (and we really are still working on pictures...)

Tuesday, June 19, 2012

Recovery update

Abby continues to do well in recovery. She is getting more and more color in her face and actually talking now. She has been eating ice chips and will soon graduate to orange slushie. It's the little things...

Thank you to the wonderful friends who totally went out of their way to bring us a DELISH dinner!!! Totally made our day. You rock!

:) Good night.
2:45 pm Update
 Dr. Burch has completed the Fontan!

Dr. Burch just met with us and he has completed the operation.  The anesthesiologist is letting Abby wake up and will take her off the ventilator as soon as possible.  The operation went beautifully!  Once he was in her chest he saw that the two dimensional images from the MRIs and cardio caths were a bit deceiving as to the position of her hepatic and also pulmonary veins.  Because of this, he was able to place the gortex tube for the Fontan outside of her heart as is typically done.  So, he removed the hepatic veins from her heart and stitched up the hole, then attached them to the tube and attached it to her pulmonary arteries as near the branch as possible so that both lungs should receive this hepatic flow.  He also repaired the tricuspid valve, which had been leaking, by putting some sutures near the edges of it.  The hole he made in the heart to repair the tricuspid valve he sewed to the 3.5mm hole in the gortex tube to still allow for a "pop-off" if necessary.  Wow.  So many prayers answered.  So grateful for the miracles of modern medicine.

Abby should be awake now and we should be able to see her VERY soon!!!!!!!!!!!!!!!!!!  :):):):):):) :D:D:D:D:D

Open Heart: Fontan: Off the bypass machine

Update:  1:00 pm - Abby is OFF the bypass! That was much faster than expected.  It'll take the surgeon about 1 1/2 hours to close up.  Whew.

11:29 am  She is successfully on the heart/lung bypass machine

11:03 am There is a lot of scar tissue and so getting in is slow going. She is not yet on the heart/lung bypass.  We are thinking that this may take more like 8-10 hours total.  She is doing really well.

Open Heart Surgery: Fontan and an update

It is 11am and we just received word that Abby is not yet on the bypass machine, as it has been difficult to get through all the scar tissue from previous operations. She is doing great though and her chest is nearly open enough to get started.

Today Abby is having the Fontan.  We have known that this surgery was needed since before she was born.  Basically, the Fontan connects the blood flow from the liver to the lungs.  If you want to read about Abby's specifics in more detail, James has typed it up below. 

Abby' Fontan

During this procedure, the blood flow from Abby's liver will be directed to her lungs. Currently the blood flows from her liver through her hepatic veins into her heart where it mixes with oxygen rich blood that has just come from her lungs and is then pumped through her body. This presents two problems: first, since this blood from her liver is very low in oxygen when it reaches her heart, it lowers her overall oxygen saturation when it mixes with the oxygen rich blood in her heart. Second, since her lungs are not receiving direct blood flow from her liver, they lack the unknown protein or enzyme that keeps them for forming collateral veins. So, as I write this Dr. Birch is doing his very best to correct this issue. Typically, the Fontan is performed by detaching the hepatic veins from the heart and patching the whole. Then theses hepatic veins are attached to a gortex tube and plumbed around the heart and into the pulmonary arteries. However, Abby's hepatic veins attach to the lower side of the heart more centrally, rather than to the side. This means that her heart would rest on and pump against the Fontan where it attaches to the hepatic veins, likely disrupting the flow. Also, her pulmonary veins come into her heart at different angles than typical which would make it extremely difficult to route the tube past them to her pulmonary arteries without disturbing them. Sooooo,  the surgical board has elected to perform a Fontan with a bit of a twist. Today they will put Abby on the bypass machine (a neat gizmo that oxygenates and circulates her blood so that her heart and lungs can be out of service for a bit) and then they will open her heart and place this gortex tube THROUGH her heart. They hope to use at least a 20mm if not 22mm diameter tube and attach it to her heart where the hepatic veins come into it. It will travel through her heart, through her atrial chamber (since her heart is essentially two chambers instead of four((no left ventricle, and her atrium are basically one large chamber)), and out a hole they will make in the top, then connecting to her pulmonary arteries. A 3.5mm hole will be left in the tube in her heart so that if pulmonary pressure is too high it will act as a shunt, or a pop off valve of sorts, allowing some blood flow to route through her heart as it currently does.

Please pray for Dr. Birch and his team

Abby went into the Operating Room at 7:45 am, the surgeon estimates 6 hours plus for the operation. Updates will be posted periodically on here as well as on facebook.

We are working on getting some pictures up - but my silly phone won't communicate well.  I have tons of time to figure it out though - so we'll make it happen soon.