Here is a slightly piecemeal and brief background of our Jameson and his illness. Jameson was born September 2007. He was a bundle of surprises: he unexpectedly came 5 weeks early. He surprised us by having Down syndrome. He gave us a big shock by having a fused bowel and needing emergency surgery followed by a 3 week NICU stay at birth. We learned early on to expect adventure with our feisty second born.
But after such an astonishing start, life settled down and we maintained a pretty "normal" and healthy existence. He had hypothyroidism, needed PE tubes in his ears, and went to physical and occupation therapy. All very easy and no big deal. We were so grateful for his health and his abilities! Jameson was an active and vibrant boy.
And then he had two hernia surgeries in the summer of 2010. The first was in June and was a completely textbook case. The second was in August and a little strange since it was so soon after the first, but no one was overly concerned. It wasn't until he went into surgery that things began to unravel. Hubs wrote up this very detailed timeline mid September 2010 to explain what we went through starting with his what-we-thought-was routine-hernia-repair. Instead, it was was the beginning of his four month PICU stay, ending in Jameson's entrance to heaven.
Here are the particulars of his enduring medical trials: 8/31/10 -
Minor hernia repair. The procedure went well according to the surgeon,
but strangely J's hydrocele had blood in it. He took a long time to
recover from anesthesia and his chest felt tight during ventilation.
Meghan was told they'd like to keep him overnight for observation, so I
brought items for a one night study session at the hospital. When I
arrived J was obviously in acute respiratory distress-retractions and a
respiratory rate of 52. I was angry, convinced he had aspirated during
the procedure and they hadn't noticed. The x-ray showed a massive
unilateral pleural effusion, not an aspiration, and only about 10-20%
left lung capacity. He had a chest tube placed that evening,
unfortunately revealing the presence of blood in the effusion. They
immediately drained 500ml and he continued to put out ~110ml/hr through
the next couple days. He was in horrible pain and had a hell of a time
breathing; it was absolutely heart-breaking. He stayed pretty steadily
miserable until the third night when his chest tube repeatedly clogged
and he deteriorated significantly overnight with his right lung now
beginning to be surrounded by fluid, too.
We needed to get a CT but his kidney function was questionable as
indicated by creatinine levels, so on day 3 the team settled for an
ultrasound. On day 4 he was not fairing well at all; recognizing this
his team informed us he was critically ill and transferred J to the PICU
with an ECHO, VATs, new chest tube, and an MRI enroute. He was
intubated 9/3 and has been sedated on the ventilator since. The MRI
showed a peculiar mass in his mediastinum, his lungs looked like crap,
he had splenomegaly, weird stippling in his spleen, and ascites...but
his brain was okay. He had a bilateral bone marrow biopsy looking for
leukemia despite normal blood counts and cytology. That evening we
learned it didn't appear to be clearly leukemia. Saturday, still waiting
on clearance for a CT, we did another VATs procedure to biopsy a
mediastinal mass evaluating for lymphoma. That night we learned it
probably wasn’t lymphoma…another kind of relief, but really just another
night of terrifying exercise of wondering.
Sunday morning’s rounds was
shaping up to be a grab-bag of tests to take a stab at what may be
plaguing Jameson, when it was divulged renal gave the okay to do a CT
the day before. So we got the CT and the accompanying tonnage of his
diagnosis: lymphangiomatosis with thoracic and lumbar vertebral
infiltration, likely diffusely spread in his spleen, abdomen,
mediastinum, and thoracic cavity.
After almost 10 days of chasing
fluids, clogged chest tubes, electrolyte balance, positive blood
cultures, renal toxicity, deteriorating lung function, constipation,
skin breakdown, IV intolerance, sedation, diminishing kidney function
and fluid overload, questionable endocrine function, and renewed
questions of cardiac function his status went from waning to grim the
evening of the 14th. He survived a painful ambulance transfer to Mpls
Children’s hospital and was placed on ECMO minutes before the stroke of
midnight ringing in his 3rd birthday.
With God’s help, his lungs will
recover while on ECMO and an experimental chemotherapeutic drug will
force his lymphatics to seal up so we can eventually take him home to
really celebrate his birthday. Throughout J’s ordeal we have been the
beneficiaries of an overwhelming outpouring of support from our family,
friends, and God-blessed strangers, for which we are eternally grateful.
The medical teams in both the PICU and up on 4200 in St. Paul
Children’s, and the PICU in Mpls have been absolutely sensational in
both expertise and compassion. Their tolerance of my insatiable need to
see and understand what is happening with Jameson is beyond any
reasonable expectation. Please continue to lend your thoughts and
prayers to Jameson, our gloriously beautiful boy. God bless you all, as
he has blessed us! Thank you.
