On Friday,
Jonah's irritability worsened. When his new nurse Faith turned him over, his saturation dropped into the 40s. They decided that his tube was too small and
had probably developed a Acoating@ of mucus that made ventilation tough, but
would not be suctioned. The reintubated
him with a larger tube and thought that it would cure everything. Unfortunately it didn't. He
actually got worse as the day went. His
gases went up and down and we was requiring more O2 (usually around 60% but
sometimes up to 100%). He seemed to
level off a bit and we went out to dinner with Mike and Karen (Mummy note: Mike and Karen, amazing friends from Thunder
Bay, offered to drive our car to Ottawa for us and then fly back home...amazing
friends). When we got back his condition
really hadn't changed, he was still unstable and needed much more
O2 than we would have liked. His blood
pressure was also becoming an issue. His
CO2 and pH were both outside the desirable range.
Saturday, April 5
Saturday was
worse. Jonah's morning gases were the worst yet with his
pH at 7.08 and his CO2 in the 60s. His
bp was also low and he wasn't peeing.
The resident on was the young paediatrics fellow who knew lots but didn't seem to be that proactive. Faith was his nurse and wasn't especially encouraging. The doctor on loan from the Civic Hospital,
Dr. Merchant, was right on. He came over
and explained to us exactly what they planned, changing Jonah to the oscillating
ventilator, giving him dopamine for the blood pressure, morphine and palvulon
so he wouldn't fight, etc.
After the transfer to the open bed they also gave him an arterial line
so they could do blood work without pricking him. Once he was switched over to the oscillator
and some tweaking was done, he started to improve. We went over to visit Mike and Karen and when
we call his O2 requirement was 36%, his pH was 7.33, his CO2 was around
36%. He was still paralysed because when
it (palvulon) started to wear off, his saturation dropped. But besides that he looked good.
Overnight
his blood pressure dropped a bit so they gave him albumen and raised his
dopamine.
On Sunday
morning, Jonah's gases weren't quite so nice. They had been gradually reducing his
pressures overnight but he wasn't quite ready for it. They put him back to where he was and his
gases improved but his O2 requirement stayed around 70% and his white blood
count was up to 40 suggesting that the underlying problem was still the
infection. His cultures had grown
nothing so far, though and his antibiotics did not seem to be working. They called infectious disease over for a
consult. By the time Dr. Garber (from
Infectious Diseases) made it in to see him, Jonah had deteriorated even
further. His O2 was at about 95% and his
oscillator settings were maxed. His
blood pressure also continued to fall.
Dr. Garber confirmed what Dr. Merchant had suspected, Jonah's antibiotics should have him well
covered. The problem may be that the
source of infection is a chronic problem (i.e., continuous leaking of fluid
through the perforation in the bowel).
If that is the case then antibiotics will only buy time until surgery
can correct the problem. The problem was that Dr. Cho felt that Jonah was far
too unstable to even attempt surgery (the problem was still unknown so without
an ultrasound it would have been exploratory surgery which is even more
risky). They decided to give him an
antifungal medicine to remedy the possibility that the infection was
fungal. They also planned an ultrasound
for Monday in the hopes that he would be more stable. At this point I was feeling without much hope
but Jonah started fighting again. Very
slowly through the afternoon his blood gases started improving; his blood
pressure came up a bit (still a tad low, but better); his O2 requirements also
started to come down. By midnight (after
another visit with Mike and Karen) we were happy to see the RT lowering the
oscillator amplitude and starting to wean Jonah off the oxygen. He was still at 80% O2 but at least his
ventilator had some room to adjust and his O2 was moving in the right
direction.
On Monday
morning we learned that Rebecca was at CHEO for the week and that she asked for
Jonah. In the morning he had continued
in the right direction from a respiratory point of view but was still
struggling with his blood pressure.
During rounds, Pat the Everything Nurse and Rebecca talked about giving
Jonah hydrocortisone, a steroid, to help his bp and his lungs. They decided to look into it that morning. By
that afternoon, his numbers had slipped again.
His ventilator was maxed, he was on the max dosage of dopamine and
dobutamine, and he was not looking good.
They also got his ultrasound back.
Nothing conclusive was seen on his abdominal view (they still couldn't tell if his bowels were deteriorating or not) but
his head ultrasound was not good. He had
a grade III bleed on the left which we were told may have caused some brain
damage. Worse than that thought was the
presence of "bright spots" on both sides of his brain indicating PVL, periventricular leukomalacia, damage to the brain caused by a lack of
oxygen. Over a week or so (as Rebecca
told us) these bright spots would develop into cysts or scarred tissue. This would mean that Jonah would have a high
risk of developing severe cerebral palsy.
Rebecca solemnly told us that if Jonah required any new interventions
other than was he was already getting, she would recommend not doing it. That is, if he didn't start to get better on his own, we should
let him go.
The next
morning, Rebecca was happy with Jonah's progress.
They were planning on weening his dopamine (the dobutamine had already
been stopped) and his ventilator pressures.
Pat, the Everything Nurse, put in another arterial line for us (Rebecca
had been up all night and was probably a tad shaky). For most of the day Jonah continued to hold
his own. The only problem started to
show in the early evening when his bicarbonate levels were a tad low, causing
some metabolic acidosis. They gave him
some albumen and then the resident gave him some saline (have we heard this
before?). The difference is that this
time the res had called the on-call doctor, Joanne Harrold, for a consult and
Joanne agreed. The saline also helped a
bit but not enough. They put him on a
bicarb drip which helped level out his gases until morning. Overnight, his
blood pressure stayed stable at a mean of about 40 so they took him off the
dopamine altogether.
The next day
went reasonably well. Al from NFLD was
his nurse for the second day in a row and was starting to grow on us. He had also grown attached to Jonah who seems
to have that effect on people. He was
stable all day with pretty good numbers.
His edema (bloatedness) was still bad though and he was still on
palvulon. We were comfortable enough
with Jonah and Al to go to Walmart for stuff and take respective naps. During the day we continued visiting with
Jonah and reading to him (I had started The Hobbit a few days before). That evening was still good and overnight was
alright when we called.
On Thursday
morning before we came in, though, he had an episode in which his O2
requirement went up to 100% for a couple of hours. X-rays showed that his lungs were getting
worse, his left lung was overextended to the point
where Rebecca was concerned about a puncture.
His edema was also affecting his breathing. When we got in at 9:30ish he was at 88% O2
but his other numbers looked okay, although his blood pressure was fluctuating
between 30 and 38. Nurse Black Cloud
wasn't helping.
Within 10 minutes of meeting her she had asked 1) if we had Jonah
baptized; 2) If we had lots of pictures; and 3) if we had family nearby. She was also commenting on his high oxygen
requirements, she didn't notice that his saturation wave was
very shallow and that it was still 94% in spite of this. My theory that because the sensor was on his
wrist rather than his foot, it was affecting the reading (his wrist was much
thicker than his foot) was confirmed when she moved the sensor to his foot and
his saturation immediately jumped to 100% and the wave looked much better. Within an hour his O2 levels were down to
60%ish and he was still saturated to 96%.
Friday, April 11
The next
morning I got up to check on Jonah first because Lez was up more of the
night. Jonah was still holding his
own. He had Nurse Black Cloud
again and she had already made footprints.
I got Margot (the charge nurse) to put them away for the time being.
Jonah's O2 crept up to 100% by the time the doctor (Joanne)
came by for rounds. She said that his
PIE on his left side had worsened so much that his left lung was crowding out
his right. They could have turned him to
try to work his right lung more but she said it wasn't strong enough to work by itself. They could
also have turned up the pressure on the ventilator (it had been higher in the
past) but he was already at high risk for pneumothorax in his left lung. Joanne said the best we could do is leave him
alone and hope he settled down.
Saturday, April 12
The next
morning was about the same. Al was in
again and commented on how his condition had deteriorated since Wednesday. (His oxygenation and edema had gotten worse). Mahmud looked at the x-ray which now showed
that his left lung was not longer overextended.
The problem was that it was very paleBmeaning that it wasn't getting much air in it. Muhmud did a suction/bagging technique
because they felt that there may have been a mucus plug. They got a little out but not a tremendous
amount. They then decided to turn up the
pressure and amplitude on the ventilator to try to reinflate the left
lung. There was no immediate change but
we hoped that eventually the lung would work better to help out his right. He spent the rest of the day at about 92-93%
saturation (still on 100% O2). Mahmud
was also taking an active approach to reduce Jonah's edema by giving him laisex and a different
steroid that didn't affect kidneys or water retention. He also reduced his overall fluids. The problem with this approach was that it
would probably lower his blood pressure so the also put him back on
dopamine. Mahmud also stopped the
palvulon but said that it would be a while before he started moving again.
We were
pleased with Mahmud's approach and hoped it would pay off. There were no great changes that day or that
night but Jonah stayed stable. Janice
was in that night ane we felt (somewhat) comfortable enough to leave the hospital. He was fine all night.
On Sunday
morning Jonah's saturation dropped into the 80s
(84-86%). Mahmud was on again and, after
looking at the new x-ray, said that his left lung looked a bit better but the
right lung was now a bit overinflated.
They felt that the tube was down too far and was favouring that
lung. Melissa the RT, pulled it out a
bit and retaped it. Jonah's sats started to creep back up and by noon he was
back in the 93-94% range. Al commented
that both sides sounded better. Jonah's next gas was pretty good and Al told up to get out
more so we went to the By-Ward Market and to Chapters.
When we got
back Jonah had been weened down to 88% O2 and was still doing well. He was also moving his lips more (he had
partly opened an eye that morning). He
was stable for the rest of the afternoon and evening.
That night
Janice was with him again. She was very
cautious not to ween him off the O2 too quickly and even though his sats were
95-97% she didn't turn him down. He was stable with her all night so it was
okay. One thing that did concern her
though was his billirubin (indirect).
Rather than the typical jaundice which is treated with photo-therapy,
Jonah was getting higher numbers because his liver was getting tired. They say this always happens when a baby is
on TPN for a long time and wouldn't become a serious problem for several months
(6-12 mos Al later told us).
Jonah had Al
again on Monday. He had been stable all
night and started off the day well. His
x-ray showed slight improvement again with the left lung still partially
plugged but doing better. He handled
handling reasonably well and his vent setting and O2 were slowly reduced
throughout the day. By that night his
MAP (Mean Airway Pressure) was 10, amplitude was 22, and O2 was 80%. His gases were some of the best he had. (He also opened both eyesB alternating sides).
Al convinced us to get out again and then we took a nap. When we got back, Heather was on again,
but she seemed a bit better and didn't try to convince us that Jonah was deathly
ill this time. We stayed until 12am and
then walked home with Julie who was visiting Ryan without Bob. Jonah had a
great night with good gases and reduced O2 (down to 65-70%).
On Tuesday
morning we were late for rounds but were later filled in that Jonah's left lung was still partially collapsed (partly due
to the reduced pressures on the ventilator).
Since his numbers were still improving, though, they decided not to try
anything with the ventilator but rather to try to turn him over on his tummy
because it helps ventilate his lungs.
During the
turn we got a couple of pictures without the tube and tape on his face. He didn't look too comfy at first but appeared to
settle into his foam bed in a few minutes.
Unfortunately his numbers weren't great.
His O2 was weaned down to about 85% but it didn't get much lower. We went home for the night leaving him with
Heather (who was much less pessimistic tonight) in the hopes that his numbers
would improve as he settled more. They
didn't. His
gases weren't awful but they weren't great either.
The next
morning they had turned him back on his back after a so-so night. Dr. Walker was on again and had a new idea
today. Since turning him didn't seem to help things, today the plan was to put him
back on the conventional ventilator. The
x-ray had shown that his right lung was over-extended and his left lung was
uninflated (much like Saturday's first x-ray). Dr. Walker felt that, rather then keeping
Jonah on the oscillator and intermittently bagging him with the puffer to open
the airways as Mahmud did, putting him on the conventional ventilator would
better inflate his left lung. The risk,
of course, was that the higher pressures and more aggressive action of the
conventional might cause an air-leak in the already over-extended right lung.
This was a
bigger concern for us than for Dr. Walker I think, because we knew that his
right lung was doing all the work for th past week and that without it, his
left lung didn't have a chance. We had also seen slow but steady improvement
since Saturday in his oxygenation and his blood gases. To hear Dr. Walker say that he was getting
worse and that he needed some pretty significant changes was a bit
confusing.
Thursday, April 17
The next
morning, Al had Jonah again. Al again
commented on how much worse Jonah had gotten since he left him with the edema
and his O2 around 90%.
Sidenote
from last night : right after they took Jonah off the conventional ventilator,
Dr. Heon noticed that his right side seemed larger. Fearing a pneumothorax they did another chest
x-ray. I was pacing in the hallway
waiting where Supernurse Jeannie saw me and asked how I was doing. When I explained the x-ray she took me right
over to look at it. It looked
surprisingly better than we expected.
On the
rounds that day they skipped our room and did Jonah absolutely last. Dr. Walker showed us today's x-ray which was as bad an x-ray as we had seen. Jonah's right lung was very large and his left lung
had almost deflated again. Dr. Walker
explained that they may have taken him off the conventional ventilator too
quickly the day before. He showed how
the x-ray Jeannie showed me was better because the conventional ventilator was
able to push air through the tight airway into the left lung whereas the
oscillator couldn't. The
problem came when they reduced his pressures, trying to protect the right
lung. That's when the gases went wonky. His suggestion was to try him on the
conventional ventilator again.
When it came
time to re-assess they did a chest x-ray.
It showed that Jonah's right lung had very slightly gone down in
size and that hid left lung had inflated very slightly. After much more discussion (we were not
consulted - they knew that we preferred to continue as we were) Al came in and
said we were getting our way. We asked
to make sure that Dr. Walker wasn't just giving in to know-it-all parents and
essentially washing his hands of the situation.
Al told us that they decided that it was the best course of action for
Jonah. Allister the RT also came into
inform us and he was more reassuring. He
was happy with the decision because he was even more worried about a pneumothorax
than we were and he felt the conventional ventilator would be a very risky
venture. Satisfied that we had spoken up
for Jonah and helped reach a healthy compromise, we went for a snack.
That evening
Janice and the little red-head RT, Clarissa, were told to continue with the
decided upon therapy and in the morning they would do another x-ray to see how
he did. Dr. Bridget Something was on
call and was scheduled to be on until Sunday.
The
ventilation technique seemed to be working okay. Allister had turned down the mean air
pressure to 9 in hopes of reducing the strain on the right lung so that used up
all of Jonah's reserve O2 (he had been about 85% but
needed to be turned to 100% to compensate).
He was still saturating at 94% thought and he seemed to respond to the
bagging.
His other
issues were the problem. His blood
pressure had remained at about 30/18 (21) or so all day and was not
improving. He still hadn't peed since the previous night. The resident on duty, called Bridget and she instructed him to give saline followed by
laisex.
We mentioned
that they had tried saline boluses last night and in the past and that it never
worked but he said that Bridget had told him to try that first and then
increase the dopamine. Janice explained
that the laisex might make a difference so we gave in. The treatment, of course, had no effect other
than to make Jonah even puffier. Mohamud
called Bridget again and she told him to try albumen followed by laisex this
time. We again told him that they tried
that before with no results. To his
credit Mohammed looked it up in the charts and when he saw we were right he called
Bridget back. She told him to start
Jonah on dobutamine. A smaller dose
though. We were happy with this. But by this time Jonah's sats had dropped into the high 80s. Clarissa, the RT, asked Janice about the next
scheduled round of bagging and puffing.
Janice skeptically asked, "Do you think it's helping..." I explained the reasoning that the doctors,
Allister and Al had discussed and tried to explain the benefits might not be
visible immediately in the gases.
Clarissa tried to explain why I was wrong but she wasn't convincing me.
Regardless, they had already decided to skip the next bag/puff anyway
and certainly weren't going to listen to a Dad. I later found out that when I went to get Lez
a drink, Janice commented that "your husband really isn't ready to let go, is he?" She too had already written him
off. Throughout the night we checked in
(from our parent room) and each update was the sameB his ventilation and gases were okay but his
blood pressure was still way down and he still wasn't peeing.
This continued even when his dopamine was increased to 20 and his
dobutamine to 10.
The next
morning Bridget came in early and explained that the resident had kept her
informed every couple of hours overnight.
She chose not to use more dobutamine because those drugs work by
constricting the blood vessels so that the blood pressure increases and she was
worried that Jonah's blood vessels were almost closed. Since he hadn't responded to the drugs so far at all, she
thought the problem was due to his lungs squishing his heart (as seen in the
x-rays). To solve this problem, they
decided to put Jonah back on the conventional ventilator and hope it opened up
his left lung so that his right one would give his heart some room. The danger of course was still that his lung
might not handle the pressure, but they had no choice. Margot and Al made the change with Lisa, the
RT. We went in to see him
and he seemed to be doing okay. His sats
had increased from what they were on the oscillator and his CO2 on the
transcutaneous was dropping. Al
suggested we take Jonah and all his equipment into the nursing room so we could
hold him in private while they monitored his tolerance of the new
ventilator. Again Al, Margot and Lisa
made the move. When they got him set up
Al said he would do a blood gas and suggested we get some breakfast so that
when he was done we could be uninterrupted.
Jonah seemed stable so we agreed and went to the Oasis coffee shop for a
bagel. We were sitting finishing our
bagels when Margot came in and said that "he isn't doing very well" and suggested we go up. When we got to the room Jonah's numbers were bad.
His sats were in the 50s and his heart rate was below 100. Al explained as he unhooked Jonah's wires that he must have blown pneumothorax because
he had been doing fine and then just lost it.
They quickly got him wrapped up and into Lez's arms.
Bridget came in and listened for a heartbeat but couldn't hear anything above the ventilator. The finally extubated him. She listened again and heart only a very
faint heartbeat. They left us with him
for a few minutes while we both held him.
A while later Bridget came in again and confirmed that his heart had
stopped. He was gone.
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