As I type this I’m sitting in an empty hospital room. The only other time I have sat in this
empty room was when Alessandra had her heart surgery. All the same feelings from that surgery have returned. The stomach twisting anxiety, the slow
moving clock and I’m holding on to the only thing I can to keep myself
together: an unshakable trust in God.
I have to trust.
I know it’s been awhile since I posted so I’ll try to bring
you up to speed. After we were
discharged from PCH on the 12/1 we had several follow up appointments as
outpatients. One of those
appointments was an x-ray that revealed some fluid in Alessandra’s chest. Return of the chylothroax. She was admitted back to the
CVICU to have a chest tube placed and the fluid drained. Chylorthorax is a thick milky substance
that is produced by the lymphatic system. Sometimes, during heart or lung surgery, the
“vessels” that this liquid travels through can be cut causing a leakage into
the body. I added the quotations
to vessels because I believe they are more like canals or tissue grooves and
not necessarily a vessel. Anyway. The issue with her chyl was
caught shortly after surgery, but the drainage tapered off, the tube was
removed and we were sent home with an ng feeding tube and some non-fat formula
that we were to continue for 6-8 weeks.
However, since being readmitted to the hospital the chyl output is still
high. Too high. Ali's cardiologist
and surgeon discussed an aggressive measure to remedy this. The decision was made that she would be
off formula and completely NPO for a period of a few days. A catheter will be inserted into her
femoral artery and she will be given IV nutrition for several days.
Right now she is back in the lab, being put to sleep so they
can insert this tube. Of course
before we sign the consent form for any type of procedure, the risks are discussed
which usually leaving me white in the face and trembling as I sign the forms. The risks for this procedure include blood
clotting, and she would not be a candidate for the medicine used to treat
blood clots because of her physiology. It really sucks. I didn’t go to medical school and for this particular
procedure the decision was made quickly. I didn’t have time to google
or chat with fellow heart moms.
Not that the internet and the experience of others makes me a qualified
mom-doctor, but it helps me to know what questions to ask, what to expect and
sometimes what doctors to specifically request. This was one of those times where I have to just trust. Trust that the doctors know what they
are doing, trust that they will handle her with the same care they would use
for their own children and trust that God has a plan for us in all of this. I don't know what else I can do.
This is all to solve priority problem number 1, her
chylotharx. Unfortunately that is
not the only after surgery side-effect that we are dealing with. Ali has been throwing up a lot since
surgery. Several times a day. It appears to be a mystery since no
known cause can be identified. We worked with some GI doctors the other night and they did study and which found some surprising results. Ali has malrotated intestines. We knew during my pregnancy that with a heterotaxy
diagnosis that this was a possibility, however she had an anatomy scan after
birth and we were told that her intestines were fine. We never thought to challenge that because her eating and gi
functions were perfectly normal.
From birth to about 4 months she nursed like a champ, gained tons of
weight and had zero gi issues.
Well, now we know. To make it more confusing, although her intestines
are malrotated, they are not kinked in anyway and are therefore not her reason
for vomiting. Which is pretty
obvious to us anyhow since she didn’t vomit prior to surgery. This is all very confusing but it means
that she may need an additional surgery on her intestines at some point and the
cause for her throwing up is still unknown.
The past few days have been so horrible, and not just for
us. An entire nation weeps this
weekend over recent events. The uncommon desert rain outside seems
fitting. Things feel dark and sad.
