Category Archives: Post-Transplant

First Day of School


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Zayne woke up this morning and told me “First day of school with a new heart!”

Preschool has been in session for nearly 1 month, and Zayne is ready to join her friends.  She will start out by attending for a few hours in the morning.  Eventually, I hope to get her back to a full day.  When I last brought Zayne to school on June 29th, I  had to carry her from the car into the school.   This time, it was a different story – she ran!

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Not only did she run to the school, but she ran around the playground and climbed on equipment. While walking back to my car, I saw Zayne running with a couple of friends trailing behind her.  With her old heart, the playground was a place where she just stood and waiting for playtime to end (unless she was on a swing).   Not only is she running in the playground, but she played on equipment and played with friends.  Her new heart has changed her both physically and socially.  I’m glad that she is no longer standing by herself in the playground.  Her new found energy also resulted in her first incident report for the year on Day 1.  I hope that isn’t a trend.

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Climbing at a different playground (not at the school)

 

Zayne really wanted to wear a backpack when we went on a hike.  After 10 minutes, I got hook her pack onto mine for the rest of the day.  At least she had fun packing it with band-aids and snacks.

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Mamma Mia

Taking bad tasting medicine twice each day is meeting more resistance.  Sometimes the meds hurt her stomach, sometimes they make her gag, sometimes she just doesn’t want to take them.  We have been playing Rocket Ship for the past 2 months, but the rockets are flying all over the place and keep getting ‘lost in space’ – these syringe rockets are taking longer and longer to fly in the mouth shuttle bay at space station Zayne.  This evening I came up with a new weapon to get Zayne to take meds:  singing and dancing to the Abba song “Mamma Mia”.  Since there are now 3 meds at night, we also danced to Dancing Queen to get the final syringe finished.  I don’t think singing and dancing will work when I have to wake her to take meds, so it will probably just be an evening event.

20150826_160006cLast week, Zayne attended her first swim class since transplant.  I didn’t recognize this kid.  She was so happy, excited, and yelling that she wanted to be the first to go out with the instructor.  Before her new heart, I had to bribe her to participate in class.  She would often tell the instructor “no thank you” when asked to demonstrate a skill.  She is on the road to learning to swim!
Zayne could barely squeeze into her bathing suite since gaining 4 lbs since the last time she last wore it 2 months ago.

 

 

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Zayne received a pair of custom decorated Converse sneakers from Peach’s Neet Feet.  This organization creates custom, hand-painted shoes to celebrate children who are fighting cancer and living with disabilities.  Zayne picked the decorations on her shoes:  stegosaurus, woolly mammoth, shark, and her name.  Zayne tells me she can run really fast with her new shoes (close-up pics on Facebook ).

She is still not cooperating during her twice each week clinic appointments.  I think she is getting tired of 7 am hospital visits which involve blood draws, echo, EKG, height, weight, and physical exam.  At least the blood letting has 20150827_081519dropped to just once each week.  I like the idea of the EKG stickers over her mouth, since she can’t complain when her lips are stuck together.

Zayne is thrilled that her cousin, Liza, is back after being away all summer.

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Scooter Sees Light of Day

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The purple scooter has gone outside and is staying outside.  Zayne received the scooter last year during the winter and liked riding it in the house.  She did not want to ride the scooter 20150810_174610outside; probably for the same reason that she wouldn’t ride her bike – lack of stamina.  When she got home from the hospital, I packed away all outdoor riding toys so she would not be tempted to break her sternum restrictions.  The scooter was left in the house, because it is stable and she didn’t do much on it.  After transplant, the indoor scooter became a danger because she was going wild and fast.  Indoor riding had to be restricted, but the day her restrictions were lifted, she was riding fast outdoors and not looking back.  We ride scooters every day (I got one too, since I do not want to be left out of the fun).

 

Zayne is down to 2 medicines twice each day, and only one blood draw each week.  She still is seen at cardiology clinic twice each week and receives an echo and ECG each visit.  Zayne is 20150813_080121doing well and doesn’t have any graft specific antibodies (that is a good thing – no antibody rejection for her new heart).  I think she is getting tired of clinic visits, getting poked, and being told what to do all of the time.  She is not cooperating during the visits.  It took 2 nurses to try and get a height while Zayne laughed and kept her heels off the floor.

It seems to be snake season in Colorado.  In the past week, we have come across 3 garter snakes that meet unfortunate circumstances (car tires and garage door).  Zayne decided that she should earn a dollar for each snake.  Somehow, she corrupted the idea that paid her money for spotting wild animals while on car trips.  She was so excited, that I had to pay up.

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We just watched the US Pro Challenge bike race go by our neighborhood.  There was so much build up and excitement for 10 seconds of the Peloton going by.  Zayne said “is that all?”
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Still doing a lot of creek visits.  She really enjoys poking at the water with a ‘fishing stick’.  With the nice weather, there are a lot of people playing on the water.  So far, she isn’t interested in creek swimming or tubing.  However, she is excited to start swim lessons next week.  Before transplant, she got very tired in the pool and didn’t make much progress.  I’m thinking that the lessons are going to be a different experience for her.  Hiking has been different – she hiked on her own 2 feet all the way up South Table Mountain to Castle Rock.  It took a long time, but she made it.  At least we didn’t run into any of the rattlesnakes that other hikers encountered.

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Painted lady being set free

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Playing at Clear Creek

 

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Leading the way on a hike

 

 

 

 

 

 

 

 

 

 

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First time on Castle Rock in Golden with new heart

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First Hike

Zayne did amazing on her first hikes with her new heart.  She actually went uphill on her own 2 legs (with some help on the really steep sections).  She made it to 20150731_155149the waterfall (Treasure Falls at the bottom of Wolf Creek Pass) and enjoyed the spray from the falls.  She ran 20150731_153346down the entire path to go back to the car and asked if she could hike back to the falls.  The next day, an uphill (are there any other kinds of hikes in Colorado) hike to Opal Lake challenged the muscles in her legs.  We took lots of rests, but the distant thunder made me want to get to the lake at a quicker pace.  She walked about 1/2 way until I put her in the backpack and continued the trudge while carrying nearly 50 lbs.  She better start hiking on her own more, because I can’t handle the pack getting much heavier.  I keep telling Zayne that I hope I don’t drop her when taking the pack on and off.20150801_130020

Even though Zayne is not allowed to swim (incision is still healing), she thoroughly enjoyed wading in the Pagosa River holding a bindweed flower and her ‘fishing stick’.  She even got to touch some hot spring water along the river, but seemed to prefer cold water.

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Back home, Zayne is still a bundle of energy and walked around Golden showing off her new ‘Recycled Parts Inside’ t-shirt.

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Happy 1 Month Transplantversary!

One month ago (June 29), I received the call that a heart was available for Zayne.  Due to an unthinkable tragedy in another young life, a generous gift from the grief stricken family, a 4.5 hour operation, the constant oversight by medical staff, and medications, Zayne has a chance at life that didn’t exist with her diseased heart.  She is running all around the house and outside.  Today, she ran across a field to the playground – this feat was not achievable with her old heart.  The playground was deserted, but that might have been due to the sand wasps (we didn’t play there, either).

wpid-20150729_171954.jpgZayne wanted to show her muscles since she is getting stronger everyday and is continually running races in the house.  She is asking when she can ride her bike and scooter outside, when I can hold her by her feet and swing her around, and she can start swim class.  Restrictions should be lifted in another month.  Her incision is healing well, and she is ready to go full force.

One medication, a diuretic, has been dropped, because her pericardial effusion (fluid around the heart) is gone.  As of today, she no longer needs to rinse her mouth 3x/day to prevent thrush.  An antibiotic will drop off after this weekend, and she has reached her anti-rejection goal levels so no dosage increase this week.  Zayne has been fighting against gingival hyperplasia, and has areas with swollen and bleeding gums.  It has gotten much better after a huge oral hygine effort: daily flossing, Waterpik, brushing multiple times/day, fluoride rinse, and viewing disgusting images on the web.  In a few months, her medication dosage will be lowered which should reduce side effects.

 

 

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Growth

The picture says it all.

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On the day of transplant, weight is in the 1 percentile.  Today, weight is in the 4th percentile.  It looks like the old heart was holding her back.

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Baking and Tasting

The last time we made a cake, Zayne would only eat the flour.  What a difference a heart transplant makes – she actually 20150718_125908tried sugar, salt, baking powder, cocoa, butter, and vanilla.  She still likes her old favorites – flour (I don’t understand this one) and vanilla.  Finally, sugar has made the ‘like’ list; Zayne must be on the mend.  Also, butter is back after a 1 yr hiatus.

* Update: * I’ve been asked if Zayne has eaten the cake.  She eats the icing.  Does that count?

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When I tire of having races in the house, we go out for walks.  For some reason, she can run around indoors a lot more than outdoors.  Benefits to walking along the creek include playing in the water with a stick or throwing rocks.

Racing after prairie dogs seemed to be the most running that I’ve seen outside.  I’ll have to find a colony near the house

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Let’s Bake A Cake

Zayne was running around screaming “Let’s bake a cake”, because she hit 30 pounds on the scale.  She didn’t forget my promise 30Poundsthat we would celebrate when she hit 30 pounds.  So far, she has gained 2 pounds since transplant.  Appetite is up, but pickiness still prevails.

Zayne loves running around the house and riding her ‘house scooter’.  When her sternum restrictions are lifted (by the end of August) the scooter will be moved to the outdoors.  She has even put on her heart heroes cape that we received a couple of years ago HeartCapefrom Heart Heroes, and runs around the house.  When I bring her to the creek for a walk, she seems to limit her running and walks at a leisurely pace.  However, she is walking longer distances, and can go much farther than before.20150717_184821(0)

Due to a reduced immune system, Zayne is supposed to keep away from crowds and public areas, and not play in dirt.  Hopefully, walks along Clear Creek and wading in the water are acceptable diversions.  We have to exercise that new heart and get out of the house.  I’m struggling trying to find safe activities which do not include the house.  The other day, we took a drive into the mountains and Zayne got to enjoy a deserted playground in Silver Plume, CO.  20150715_132648I’m running after her with hand sanitizer and keep reminding her to not touch her face.  She ate 85% of a double chocolate Milano after playing (pre-transplant, she only nibbled).

Today, was a very bad and a very good day for the medication.  Zayne has been having a really difficult time taking one of her anti-rejection medications, cyclosporin.  It tastes horrible and can be difficult to keep down.  Trying to convince her to take a medication 2x (and sometimes 3x) every day that makes her gag is difficult.  Due to the medication schedule and early morning hospital appointments, Zayne is not getting enough sleep during the night.  I had to wake her up before 8 this morning to take her meds, and she was not happy.  I bargained with her that she only needed to take 2 of her 6 syringes, and got her to drink 3 oz of Pediasure to fill her stomach.  Unfortunately, the cyclosporin caused gagging, burning throat, stomach pain,20150715_131232 and a mess in my bed.    Offering 30 minutes of video was the only way I could get her to take her replacement dose as requested by the transplant coordinator.  I came up with the good part for medication dosing by having Zayne hold the Hershey’s Syrup in her mouth while I release the syringe of cyclosporin.  So far, 2 doses have resulted in no gagging.  This is great, since Zayne must continue to take this medication.

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