Friday, May 13, 2011

Reach Out to Rowan, B&B Day 25, May 13

Sorry y'all, Blogger was down last night and most of this morning, so I couldn't get this post out.  Please read below to learn more about the brave Mr. Rowan Jameson Windham, 4-year-old superhero!

Day 25 of Mission Boss Your Heart Memorial Blitz, Focus #4 (Final Focus): Reach Out to Rowan! View his mommy's blog HERE. View his foundation HERE.

Day 25of Chrissie's 31-day battle, May 13, 2010:
Post 1, Post 2, Post 3, Post 4

(Rowan in the NICU)

Our son Rowan Jameson Windham was born 5 weeks early and spent the first month of his life in the NICU at Methodist Children's Hospital.  Once we were able to take him home, we thought things would return to normal.  However, Rowan's health issues would only worsen and become more complicated.  By 4 months old, he had his first major surgery.  Now, at 4 years old, he has been in the operating room under anesthesia 46 times.  He has been hospitalized more than 600 days of his life at this point, spending most of his birthdays and every major holiday, more than once, in the hospital.  He even went to Cincinnai Children's Hospital in Ohio, where he spent 5 weeks before being flown home on a medical transfer back to Methodist Children's Hospitlal in San Antonio.

(Rowan malnourished, failure to thrive, before being put on iv tpn nutrition)

(Rowan on his medical flight from the hospital in Ohio back to the hospital in Texas)

Rowan has been diagnosed with Shwachman-Diamond Syndrome, a genetic disorder that compromises his immune system, gi system, blood and bone marrow.  His pancreas does not function properly, so he does not digest things normally and does not grow adequately through normal means of nutrition.  All of his blood cell lines are affected at different times as well, so one week he may need a blood transfusion, the next time plasma or platelets may be low, and he needs iron infusons routinely every couple weeks.  His bone marrow function is also an issue and he recieves immunoglobulins routinely, every few weeks, and neupogen bone marrow infusions twice a week, every week, to help boost his bone marrow production.

(Rowan receiving one of many blood transfusions in the hospital)
(Rowan at the Children's Cancer and Blood Clinic recieving one of his routine iron and ivig infusions)

Another one of Rowan's gi issues is eosiniphilic disorder, which is considered 'the mother of all allergies'.  His body does not tolerate any form of protein at all, and most other foods cause major gi bleeding and/or rash or other skin reactions.  Rowan has to have a special man-made amino acid formula fed through his g-tube 24 hours a day.  Other than that, he can only drink water by mouth and the only foods that he seems to be able to tolerate have been potato, cucumber and tomato.  Plain sugar candy is his biggest treat.

(Rowan right after his nissen fundoplication/gtube surgery)

(Some of the hardware under Rowan's gown-central line, gtube and monitors)

Rowan takes 26 different doses of medicine a day.  He has a gtube in his stomach for 24 hour feedings, but unfortunately he does not grow from that type of nutrition so he also requires 12 hour iv nutrition every night.  He has a broviac central iv line in his chest for those feeds, and his iv meds, labs and infusions.  His central line has been damaged, broken or pulled out on several occassions, and been the source of many life threatening septic infections.  He has gone into septic shock repeatedly, and we have almost lost him to that too many times.  The very things that keep him alive, are the very things that are the greatest risks to his life at times.

(Rowan septic, fighting 106+ fever)

(Rowan post-op- craniectomy/laminectomy surgery)

Rowan has had two brain/skull surgeries in the past year.  One was to correct a Chiari malformation of his brain, which means that the lower portion of his brain was pushing outside of the base of the skull.  They removed a small piece at the base of his skull and part of his C1 and C2 vertebrae, and shrunk up the base of the brain because it was obstructing the flow of csf fluid from his brain and spine.  The second surgery was 6 months later and required them placing a vp shunt in his skull, to remove excess fluid from his brain and drain it down into his abdomen. 

(Rowan post-op- vp shunt surgery)

In addition to all of these health issues, Rowan also has generalized seizure disorder and sleep apnea.  When he was first diagnosed, his 24 hr eeg showed 25-30 seizures a day.  They are fortunately now pretty well controlled by him taking 3 anti-seizure medications each day.  His apnea requires him to be monitored on continuous pulse-oximeter monitoring at night and he recieves nasal canula oxygen every night as well.

(Rowan during his 24 hour eeg monitoring his seizure activity)

(Rowan on his nightly nasal canula oxygen)

Despite all of these serious health issues, the extent of his level of daily required care, the many emergency trips to the hospital, extended hospital stays, and repeat surgeries, Rowan is one of the happiest, most content children you will ever meet.  Rowan passes time in the car looking for good veins for ivs.  At home, he makes homemade CAT scans for his action figures and pretends to feed his baby through a g-tube.  He knows what medications he needs and when.  All of this may sound very sad and uncharacteristic of a typical 4 year old boy, however, he doesn't feel sorry for himself about any of it, so how can we?  Rowan continues to show a maturity, faith and strength way beyond his years, and it's hard to miss how God is using him to put things into perspective for us healthy adults.  He thanks nurses who have to start ivs on him, tells me himself when he needs to go into the emergency room, even if its Christmas morning.  He accepts when he needs another surgery, looks forward to seeing favorite nurses in the hospital and gets excited about things like getting to eat baby ice cubes in the hospital.  You will not hear a complaint come out of this child's mouth about going to or being in the hospital or doctor's office.  He doesn't get to go to school or play on the playground or play at McDonald's like other children his age, and he doesn't even get to eat food like we all do around him...but he is happy about what he does get.  He has literally cried happy tears at getting even one taste of a new food, watermelon.  And when it didn't agree with his body and he experienced gi bleeding from it, he simply said "well, at least I got to taste it once".  How many of us act this way?  Not me.  I can admit that.  But Rowan's strength, perseverance and contentment, in what most would call a VERY difficult set of circumstances, is awe-inspiring and something that helps me grow as a person every single day.  I pray that we all could learn from children like Rowan, and be able to thank God for each and every small gift from above, not wasting time complaining about what isn't what we would consider perfect in life...just taking each day one moment at a time, being grateful for everything, feeling sorry about nothing!

(Rowan: always smiling-even when he's in the hospital:-)

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