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9/3 noon: The doctors at our hospital discovered an "anomaly"
in Timothy's heart that they want investigated by specialists. A team
from UCLA will come up this afternoon (9/3) to transfer him to the
neonatal unit there. It could be nothing at all or it could be more
serious; we don't know. We would appreciate your prayers.
9/3 3:30 p.m.: Timothy is being taken by helicopter right now to UCLA
neonatal ICU. There his heart will be evaluated. Local
doctors now say he has an obstruction in the aorta (leading from the
heart) and while it's not causing a problem yet, it could and they want
to check it out before it becomes an
"emergency."
9/4 10:00 a.m.: Timothy has been diagnosed with some congenital heart
defects that will require at least one surgery, probably in about a
week. He will remain in ICU until then and during recovery
afterwards. There are still many unknowns. We'll be staying
in Camarillo and driving to UCLA daily to visit him. We'll put
updates here as possible.
9/4 10:00 p.m.: Email update (posted here)
Update - 9/5 9:00 p.m.: Timothy's situation has worsened. His lower
left ventricle is smaller than thought and the mitral valve also is small
(as well as the previously diagnosed problems with the aorta valve and
blockage in the aorta). His situation has moved to the top of the
critical list in the NICU. The doctors will decide what route to
take by tomorrow morning. Timothy now has a femoral IV and is on a
breathing machine. When Kelli held him for a few minutes this
afternoon, the oxygen level in his blood plummeted and he was put on the
ventilator. Now all his feeding will be done through an IV and we
won't be able to hold him.
We have been encouraged
by our family and friends - by their notes and their prayers. Our
need for a car was answered almost immediately and several have
volunteered to help with the boys. Because our time is short now,
we're not able to respond quickly to those emails and offers; we will as
soon as possible.
Please pray that:
1) the group of doctors and surgeons discussing and deciding the
situation would have wisdom
2) Timothy's heart would be healed
3) we would make the most of our limited time with Luke and Mark
4) we would trust God (as sovereign and good) especially when things
aren't looking good from our perspective
Update- 9/6 10:30 pm. Timothy is scheduled for open heart surgery
Friday. Time is not certain because he is following one other
surgery and any heart transplant operations that become possible would
come first. Best estimate for start of the 6-hour procedure is 9-10
a.m.; we'll try to post an update here when we know on Fri.
The problem is that Timothy's left
ventricle (chamber) is small and the doctors have decided that
it's best to make his heart operate on the right ventricle only.
This will take a series of three operations over the next several years
(best-case scenario). It's an unhappy situation in that 1) he will
live with essentially half of a heart; 2) typically the right half is not
as important as the left; 3) there are many possible complications and
no guarantees; 4) as the doctor said, we have a long road
ahead.
We're very thankful that the operation
is able to proceed so quickly and that the surgeon performing the
operation is one of the best in the world (Dr.
Laks). We're also thankful for the world-class facilities and
top-notch doctors and nurses at UCLA. They have impressed us very
much with their competence and compassion.
Friday's operation is the highest risk
of the three. There are many possible complications and
problems that could result. We ask for your prayers that:
1. The doctors would have steady hands
(they work long hours and do many surgeries).
2. The doctors would make wise
decisions, even as they are working on his heart (it may look different
in reality than on an ultrasound and they could make on-the-spot changes
as needed).
3. That Timothy's body would respond
well to the surgery and there would not be any significant or lasting
complications.
I don't think we can really overstate
the importance of this surgery (a look at some of the websites below
will show how serious this is). Nor can we adequately express our
deep thanks to so many friends who are praying for us and encouraging
us. Please pray earnestly and frequently for Timothy on Friday; we
will update this page as quickly as possible.
Our Hope:
"On him we have set our hope that
he will continue to deliver us, as you help us by your prayers.
Then many will give thanks on our behalf for the gracious favor granted
us in answer to the prayers of many" (2 Cor 1:10-11).
Technical Terms:
They've called Timothy's condition
"Shone's Complex" and it looks very similar to descriptions of
HLHS on the web.
Names of procedures in Friday's
operation:
1) Damus-Kay-Stensel
2) Blalock-Taussig (BT) Shunt
3) Modified Norwood
Update - 9/7 11:10 am. Timothy
entered the operating room at approximately 11:00 am.
Update -9/7 5:15 pm. Timothy
is still in OR, but has been off the heart-lung machine for an hour
now. It may be another hour or two before he goes to ICU.
This is still a very critical time.
Update - 9/7 7:35 pm. At
6pm Timothy was put back on the heart-lung machine. No additional
word from the doctors in the last 90 minutes.
Update- 9/7 8:15 pm. Timothy
is off the heart-lung machine again. They had to replace a
shunt. Situation is better at this time, but the next 24 hours are
very critical.
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