Happy
Birthday! Thaddeus turned one back on February 10th. He ate a
cupcake to celebrate. Well, some of it got inside anyway.
When I last left you, we were waiting to
hear from some one to re-schedule Thaddeus' echo and circ. Well
after about another week and a few contacts with various hospital
personnel, we got a call. The scheduling nurse from urology called
us and told us that they had two dates open. The dates they had open were
on his birthday and on leap day. I asked the nurse if she had talked to
cardiology yet and she assured me that they would be there for whatever
day was scheduled. I tried to make a joke, and it failed, so I told her
that we would go ahead with his birthday and his birthday present could be
a clear bill of health. (Relatively speaking anyway.) About a half an
hour later she called back to tell us that cardiology couldn't make it on
the 10th so we'd have to go with the 29th.
So Dede drove down to Milwaukee with Thaddeus on the 29th. Unfortunately
when the anesthesiologist saw Thaddeus, he decided that Thaddeus' had too
much of a cold to be anesthetized so they canceled both procedures and
sent them home. Obviously we were disappointed by this. When Dede got
home she called to set up the next appointment. When she got a hold of
the cardiology nurse, they set up a time for the echo. When she called
urology, she got transferred to several people and eventually told to
call back when a certain other lady was in. Later that night our
cardiologist called us and left a message saying he was sorry that
it got canceled and asking what he could do to help. So I took the
opportunity to send him an email and let him know what our experience had
been from the start of this whole thing. I also expressed concern because
last time it got postponed, it was three months before we were able to
get another date. The next day, Dede got a call from urology saying that
they could schedule us for Friday the 9th. We jumped at the chance.
When the 9th arrived, we were a little concerned because Thaddeus still
had a bit of a cough (as he has had most of the winter). We were
concerned they might send Dede and Thaddeus home again. When Dede
and Thaddeus got to CHW, two anesthetic doctors came to check out Thaddeus
to decide if they could go ahead or not. They were concerned about his
cough. Dede assured them that he was acting himself and the cough was
just kind of an ongoing winter thing. Apparently they paged our
cardiologist several times and he encouraged them to just go ahead
and do it. In the end, Dede thinks what finally convinced them was
just watching Thaddeus crawl around and play happily. (Oh yea, he crawls
now! Everywhere! Including over to Jeremiah's and Daryan's Lego creations
. . .) They finally decided that they didn't have enough grounds to not
do it if he was acting so contented and lively.
The big concern was how would Thaddeus come out of sedation. As it turns
out, Dede said he woke up, started to 'coo' and waved at the nurses. In
fact, they sent us home with 3 days of pain meds for him, and after one
dose, we quit giving it to him and he was fine. So far things are
healing well as far as we can tell.
Yesterday Dede went back down to CHW to talk to the cardiologist about
the echocardiagram results. He was able to tell Dede that the results
looked fantastic. The heart function is great. So much so in fact that he
took Thaddeus off of the blood pressure medication he was on. Thaddeus'
blood work was also good. His pulse ox numbers were also stable.
(His oxygen saturation is still lower than it would be for a
'normal' kid but they are where they expect them to be.) The only
negative that the cardiologist saw was a narrowing of the pulmonary
artery. However, he would have been surprised if he had NOT seen that. They
will keep an eye on that and may or may not go in and try to widen that.
(I think it is basically an angioplasty same as they would use on someone
with cholesterol blocking an artery.) In fact, our cardiologist wants to
use Thaddeus' growth chart to show how things are supposed to go when you
follow the program he is an advocate of. In a sense, he wants to use
Thaddeus as a "Poster Child". You can imagine how pleased,
and proud, we were to hear that.
So looking ahead, we will continue to have regular check ups down in
Milwaukee. We will also go to our pediatrician in FDL for all the
regular baby visits. We will also keep an eye on Thaddeus to see if
we notice any signs that he 'just isn't right' such as lethargy or his
color being off. Any of these signs will indicate that it is time for
Thaddeus to have the third and final surgery (not counting an eventual
transplant). However, if he continues to do as well as he has so far, our
cardiologist said we may not see any signs to indicate when Thaddeus needs
his next surgery. If that is the case, then we will simply plan on doing
it in the summer of 2014. Obviously, plans change, but that is the
thinking as of now.
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