January 18, 2005: Theresa had a major turn for the worst. From the best day yesterday, to
the worst day (so far) today. The doctors have always said it's a roller coaster ride, but I didn't expect it after
such an optimistic report yesterday.
When I came to see her this morning, I was informed that she couldn't handle the reduced flow rate on the ECMO machine,
so they had to turn it back up to 100%. This meant that they weren't going to be weaning her anytime soon. Also,
her sats and levels hadn't risen back up to where they had been before the ECMO flow rate was lowered, and this indicated
that she could be having some complications.
For some reason, her heparin (an anti-coagulant drug they give to prevent clots from forming in her or the ECMO machine)
levels were down very low, yet so were her platelet levels (one coagulating factor found in .) They gave her LOTS of
products (around 5 units each of platelets and plasma) trying to get her volume and platelet levels up, but they still
weren't in the normal range.
The doctors kept calling in more and more doctors and gathering outside of her room to discuss this phenomenon and try
to come up with a plan. Everything they tried didn't seem to work. They began looking for a massive infection
in Theresa (so far, nothing on the cultures has grown). They did head and abdominal ultrasounds to look for indications
of thrombi (large clots) - none appeared on the ultrasounds, though her ventricles in her head are still enlarged - and they
still don't know why or what that indicates. They considered that clots might be forming in the ECMO machine, or lots
of small clots were forming in her body which would "eat up" her coagulating factors, but those tests were inconclusive.
They also told me that her heart was showing a thickened right ventricle (though it could be the way the liver is pushing
on it) and that is reducing her flow and pumping strength.
All in all was a inconclusive, and VERY stressful day. Tim came after he got off of work, but by then, I had dealt
with everything, and all the doctors and extra specialists they called in, by myself, and was overwhelmed. Tomorrow
they will be doing more testing, and calling on Hematologists (again, a new group of doctors) to see that their theory might
be.
Her nurse, Beena, was wonderful, as were her two daytime perfusionists, Terry and Bruce. They would explain what
the doctors were discussing in easier terminology, and tell me what to worry about, and what was "standard occurances" in
ECMO babies. The doctors and surgeons also stopped to explain things, and answer ANY questions I had. I have faith
that they will do their best to resolve the situation, its just a situation I didn't expect (or want) to be in.
January 19, 2005: Though not quite as stressful a day as yesterday, it certainly had it's
moments. The Pathology and Hematology doctors they called in didn't have much more information to add. They, too,
were scratching their heads, and theorizing. One theory was that she may have a clotting disorder, called Von Wildebrands, similar
to Hemophilia, but the test came back negative (after half a day of waiting and worrying)
Also, the ECMO machine rate was turned up to 110% - NOT a step in the direction we had hoped for!
They also debated changing out the ECMO circuit entirely, but that would mean taking her off for hours (not something
she's really ready for, and it would set back any progress she has made) and that may not even solve the problem, or it could
cause new problems.
They have decided to give her additional products in the form of platelets and cryo (not sure what its an abbreviation
for) that have lots of clotting factors in them. They are also going to raise her heparin levels (contradictory sounding,
I know, but apparently, if you can achieve the correct "balance" of the two, it should help)
After 2 stressful days, I went home to visit with Nathaniel and will go back in the morning.
January 20, 2005: More consultations with all the various departments - more head scratching and
shrugging. They have taken her off of one of her heart medications (Calcium), and are considering taking her off of
the other one (Milrinone). The Cardiologists are noticing more "slight improvements" in her heart function (one positive
thing this week), and they performed another head ultrasound. Although not official, the surgeon, Dr. Cass, said he
didn't notice anything abnormal on it when he was watching them do the ultrasound.
Lots of waiting ... the test results are not in yet, but should be by early afternoon. This will determine
whether the plan they put into action last night has produced any positve results, or if we are back to square one.
When the test results came in, they still showed that Theresa had "Consumptive Coagulapathy" (her body is consuming the
coagulants at a high rate, which indicates clotting somewhere in either her body or the ECMO circuit). Her circuit
flow rate was turned up to .350 Liters/min (from the original .270 LPM). Again, a step in the WRONG direction!
We went to bed hoping that by morning we would see improvement in her condition.
January 21, 2005: When we arrived in her room this morning, we were met by a pale, gray, little
. It was very disheartening and frustrating to see her looking like this. The doctors were there, and some were
even admitting to "getting worried" about Theresa. NOT something that inspires a lot of hope in parents. As we
sat in on their rounds and listened to them, we felt even more hopeless. The school of thought was that she had
many micro-thrombi (small clots) which had developed in her lungs and were preventing them from contributing as much to her
"native circuit" as they had been doing in the early days on ECMO. They decided to turn up her ventilator settings to
try to "inflate" some of the larger aveoli (small air sacs in the lungs) and regain some of her lung usage. They
also increased the heparin levels to try and reduce the clots, and put her on steroids to boost her lungs.
Her surgeon, Dr. Cass, called in another surgeon, Dr. Helmrath, who had a lot of experience in dealing with babies on
ECMO. He suggested that they continue her on the increased ventilator settings and begin to wean her back down to the
original flow rate on ECMO.
Almost immediately, we begin to see good results. Dr. Helmrath, and the neonatologists monitored her throughout
the day, and the results stayed positive. They began to turn down her ventilator settings without negatively impacting
her oxygen satruation levels as well.
Theresa finally pooped! She passed her first meconium (this was slowed down by the fact that she is sedated)
which is great in decreasing her fluid levels in her body. We were very pleased, and Tim even took a photo!
We went to sleep without as much worry as the night before.
January 22, 2005: Although we were anticipating entering her room, and discovering that all the
positive changes from yesterday had somehow been just a dream, we were very pleased to see that in fact, Theresa had continued
to make progress throughout the night. I overheard, Dr. Speer saying that he didn't know if it had been them or God,
but that he didn't care which, since she was doing better. She is back to breathing room air (still on a vent), and
her heart is contributing to her circulation much more than normal with a baby on ECMO. They have decided that since
she is so much improved that they will wean down her ECMO settings .10 LPM each hour as long as her numbers stay good.
She is still on the steriods, and they are trying to increase her output (pee) to reduce the amount of fluid in her
body.
Tim got to take her temperature today, and I got to change her diaper (for the first time) - more poop! The
nurse, Traci, allowed Tim to change the second diaper as well. She seemed surprised that we hadn't been doing it before.
How wonderful to actually be caring for her as parents should. We're praying for lots of pee, too! It's nice to
be able to pray for something so mundane.
Her ECMO circuit flow has been reduced to around .20 LPM, which is about 74% (the lowest they will go on a baby this
small). Her pressure had began to increase (probably due to the steroids she is on), so they gave her pressure medication
and reduced the flow to the lowest setting hoping to correct this.
January 23, 2005: Her oxygen saturation levels are still looking very good. Her fibrinogen,
platelet, and heparin levels are starting to indicate that the Consumptive Coagulapathy has not completely disappeared, and
being that it is a weekend, and that her regular doctors are not working this weekend, we were getting nervous that things
wouldn't be done as swiftly. Fortunately, Dr. Speer came to look at her and her numbers, and immediately ordered a "trial
off" (where they clamp the ECMO circuit off, and allow Theresa's heart and lungs to work on their own for a short period of
time - around 20 minutes). I had just stepped out for lunch with my sister, but Tim got to witness the entire trial.
They increased the ventilator settings during this time, and her numbers looked great, so there is finally some
serious talk of taking her off tomorrow provided that everything goes well. (sooner than we had anticipated with the week
going the way it had been.) Tomorrow will be a happy, yet stressful day for us.
January 24, 2005: I came into her room this morning to witness the last 5 minutes of her
2nd "trial off"! She did just as well if not better than yesterday, so they have paged the surgeons to schedule
her time to be decannulated (remove the tubes which carry the into her vein and artery). We still don't have an exact
time, probably late afternoon today. We are more anxious about this surgery (removing the cannulas) than the original
surgery to place them in. Now that we have spent nearly 2 weeks with her on ECMO, we know the ins and outs of this,
but will be placed in an entirely new situation as she comes off of the circuit and has to do all the work on her own.
She will still require the ventilator support, and once she has stabilized and recovered some (after a few days) they will
determine when to do the corrective surgery to repair the hernia itself. For now, it is still one day at a time.
Though we will miss the constant companionship of her perfusionists, it is good for Theresa that they are no longer needed
for her care.
(update) Basically, the doctors were telling us early evening for the surgery, but the surgery team cleared a spot
around noon. They quickly cleared out the section of the NICU that Theresa is in of all parents and extra people (to
make a more sterile environment), set up their equipment in her room, and performed the surgery in a little over an hour from
start to finish. Dr. Cass and Doug (Dr. Miniati) spoke to us in the waiting room afterwards, and told us that her blood
loss was minimal (less than average), her vital signs stayed good during the entire surgery, and that things were looking
good overall for Theresa. We went in to see her, and she looked very peaceful, and much more comfortable in her new
position. (her head was a little flat on the left side, and her ear was a little bit crumpled, but again, better than
average for spending 2 weeks on one side!) She began to come out of her anesthesia, and opened her one less swollen
eye to look at us. We were finally able to stroke her head without worrying about disturbing the cannulas.
Later, Doug showed Tim some of her current x-rays as compared to some of her past x-rays. Her right lung is actually
a little larger than we had anticipated (or it has expanded while it was resting), and it looks as though there is enough
to grow and contribute to her pulmonary function eventually. (remember: the lungs can grow and expand into her
early childhood, around 8 or 9 years old)
We are pleased with her progress and the challenges that she has overcome in her first 2 weeks of life. This is
only about 1/2 of the first step of many to being declared well enough to come home, but it is a step in the right direction,
and for that we are truly thankful.
If all goes well this week, they are considering performing her corrective hernia surgery as early as Thursday of this
week.
