On Saturday July 20th at 11 months old, Ian
caught a cold which caused him some respiratory issues. Matthew took Ian into
emergency Sunday morning with labored breathing. Late afternoon I arrived with
the kids, and some food for Matthew. Matthew went home with the kids, and I
stayed with Ian. They did a chest X-Ray on Ian. (I hate those contraptions they
put babies in to take the X-Ray, they are so scary to them.) The emergency
doctor admitted Ian because his symptoms were not improving with treatment. The
doctor in emergency said Ian had Bronchiolitis.
At the hospital again…
Overnight Ian’s breathing became more labored and he was
getting very tired. I was able to doze off once in a while but Ian was working
so hard to breathe I woke up every half an hour or so, because he would whimper
a little. Then the nurse would come in and give him stuff to help him breathe.
Early Monday morning the nurse called the rapid response team for Ian as his
oxygen was too low (he was on oxygen already). They decided to put him in the
PICU. (Pediatric intensive care unit).
Once I knew where Ian’s room was in the PICU, I left to go pick something up
for breakfast. I hated seeing my baby be poked for blood and IV’s, and tubes
being shoved down his throat. When I got back they told me that once Ian
arrived in the PICU they had sedated him. Because he had been on so many meds
in his life, Ian took a bit to sedate. They put in another IV, and intubated
him (tube through his mouth, and into his
trachea - just above the lungs). Soon after I got into the room a
doctor tried to put in an arterial line (a
thin catheter inserted into an artery, it is a fast and accurate way to measure
blood pressure, and get blood gas samples), and on the third try he got it.
The doctor tried to put in a central line but after three tries he gave up. It
took a few pokes with Ian because he had had so many IV's in his life. Normally
they would have booked an OR to put in a PICC or Central line, but there was no
time for that. In the PICU, they just sterilize an area, and do it right in the
room. I noticed they had a different color for all the sterile blankets, tool
kits etc. I asked about it later and the doctor said they even do surgeries in
a PICU room if they have to. After the PICC line was in and they had stopped
trying for the central line, Ian started waking up and fought the ventilator by
trying to breathe on his own. By doing so he completely collapsed both lungs.
His oxygen went down to 15%, when it should be 100%. All of a sudden there were
doctors and nurses everywhere. Eventually they were able to get Ian's oxygen
back up by hand 'bagging' him. Ian needed 80% oxygen, and the ventilator was at
a pressure of 38. Every time they stopped bagging by hand and put Ian back on
the ventilator his lungs would collapse and they would have to bag him up by
hand again. The doctor told someone to get the lung bypass machine – the ECMO
machine. (An ECMO - is an extracorporeal technique of providing both cardiac
and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve
their function - Wikipedia.) Someone explained to me that they
would need to cut a large hole in Ian’s neck, insert the tubes through that
hole following the jugular and put them into Ian’s heart, the machine would do
the work of Ian’s lungs so his lungs could rest and heal. While they were
bringing the ECMO machine down, the RT (Respiratory Therapist) and Dr. Jon Duff
the Intensivist (critical care physician) decided as a last resort to try a
different mode on the ventilator (Bi-Vent - a mode not usually used on
babies/children.) I could hear them talking, and although I didn’t understand
everything they had said I understood enough to know that this was a long
shot. It worked!
During that intense time, the room became very quiet and
little was said – Ian was dying, and I prayed, not letting my eyes leave my
baby. The Intensivist and head RT glanced at me a few times. I was sitting on a
chair by the wall and outwardly I looked pretty calm for a mother watching her
child die. I wasn’t crying, not even tearing up, just sitting there watching
the monitors, watching the medical team work on Ian, listening carefully to
everything that was being said. I knew when the doctors glanced my way that
they were talking about me. Later Dr. Duff explained they had had a
conversation about me, and wondered if I knew what was going on. They concluded
that I did, and continued working on Ian. Every few minutes someone would stand
back from Ian’s bed, ask if I was ok, and ask if I had any questions. I was
very thankful for the caring bedside manner everyone had. Now that the
ventilator was on bi-vent and keeping Ian’s lungs inflated they parked the ECMO
machine outside Ian’s door just in case. If the bi-vent mode continued to work
they wouldn’t need the ECMO. What a relief. They gave Ian boluses (shots) of
Rocuronium to medically paralyze him. Ian’s oxygen levels went down to 7% while
we were there at one point and there was some talk about putting him on a
different machine (a nebuliser – basically it shakes the lungs to loosen phlegm),
but he never needed the nebuliser.
.
The Intensivist said Ian's lungs were very tough to inflate,
worse than he'd seen in about a year which is quite something considering the
Stollery gets critical patients from all over North America. With this bi-vent
mode they would keep Ian's lungs inflated for 3.6 seconds and only let air out
for 0.3 seconds. Very quick ‘exhales’. Normally, if someone needs help
breathing and is on a ventilator they would let air out for closer to 3 seconds.
The Intensivist in the PICU said Ian was acting like he had a very bad case of
pneumonia. Interestingly, IUGR babies (and therefore most TTTS donors),
preemies and babies who previously needed ventilator support are at a higher
risk of contracting pneumonia.
It was so sudden that Ian was back in the hospital in life
threatening condition. Life had changed so fast. We barely had time to process
it all.
On Tuesday Ian had improved slightly. His lungs sounded a
bit better, but Ian was still “very very sick.”
That's how one of the doctors
described Ian’s condition during rounds that day. I tried to be at the
hospital in time for rounds every day, but it was difficult since I didn’t like
asking people to take my 4 kids at 7am. My sister Rebekah, sister-in-law Linda
and mother-in law were able to babysit early most days so I could make it in
time. During rounds, the doctors would go over Ian’s medical history, and
decide what could be done next. Then they would ask me if I had any questions
about anything or if I had anything to add – in the Stollery the medical teams
really included me in the medical plan for Ian. If I missed rounds, and the
Intensivist Dr. Jon Duff saw me walking in, he would personally fill me in on
everything that had changed and ask me if I had any questions. Ian's oxygen
levels would go up and down, depending on how relaxed he was and if he was
trying to fight the ventilator. We were so thankful Ian was is in the Stollery.
The medical teams there are amazing! Always ready to answer my many questions,
and quick to explain things. They are friendly and personable. When things got
intense and scary in the room, someone always asked how I was doing and if I
knew what was going on.
. |
| There is always at least one nurse at the bedside in the PICU (and the NICU) |
On Wednesday they were decreasing the pressure on the
ventilator a little every 4 hrs. The ventilator was still in the bi-vent mode.
But little by little the pressure was turned down from 38 to 20. So much
better! Ian woke up every once in a while, often when he heard me talking. He
was awake just long enough to move his arms and legs a little. Then they had to
give him extra sedatives and they put restraints on his arms, and he didn’t
have much strength to fight those. Ian didn't open his eyes quite yet and I’m
not sure he could with the doses of pain meds he was on. On Tuesday, whenever he woke up a little he
would desat. Wednesday he wasn’t desatting when he stirred, but they did still
give him extra boluses of drugs (Midazolam and morphine) on top of what he was
getting in his IV (morphine and chloral-hydrate - The continuous infusion of
chloral-hydrate is a study we agreed to be a part of so that Ian didn’t need as
many narcotics which seems to help get patients extubated quicker). I talked to
Dr. Duff that day and he said Ian was responding well to treatment and they
were hoping to extubate Ian on Friday. Normally when a child has lungs as sick
as Ian’s the doctors wait 7-10 days before extubating. This doctor thought Ian
was doing so well he could be extubated in 4 days! I wasn’t really counting on
Friday, but was still hoping.
On Thursday (I think) Ian and I had a special visitor. The
dietitian that had helped us in the hospital after Ian’s third surgery and
later at doctor visits had noticed Ian’s name on a list of patients, so she
came by to say hi and visit. We hadn’t seen her since the beginning of April
and she was surprised at how big Ian had grown!
Friday morning they waited for me to get in to do rounds,
and during rounds they decided to go ahead with the plan to extubate Ian. They
stopped the sedatives and waited for them to wear off. At 2pm Ian was finally
ready. Because Ian is such a charmer even when sedated and intubated, he had
lots of adoring nurses, respiratory therapists, doctors and medical staff
watching the exciting event. The room was full of people. Ian did very well, he
didn’t even cry! We all cheered! Ian was
extubated only 4 days after being intubated! I was so proud of him! When I left
shortly after, Ian was still on oxygen and doing great. Such a tough little guy!
. |
| Just extubated! |
 |
| Ryan visiting Ian in the PICU. |
Saturday we all came to see Ian as a family. He hadn’t needed oxygen all night and was going
to be moved out of the PICU soon. Matthew stayed with him overnight Saturday.
Sunday morning I came to the hospital with the kids, and we
worked out a plan so we could all go to church in the afternoon and then I
would go to the hospital and spend the night with Ian.
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