Waiting for this cath had actually
become a joke between us and the doctors. Hayden had been scheduled for three
that had fallen through, so we were sure something would happen that wouldn't
allow this one to happen either. First it was surgical conference to decide if
the one ordered was even needed, then it was fevers, the fevers lead to staph
infection and two and a half weeks after his first scheduled cath, he was
finally ready to go. Through our three week stay leading up, we were busy
dealing with all sorts of desating that lead us back into the CICU and thinking
his desating was either seizure related, feeds related or heart related. He had
an EEG that confirmed the desating episodes were not seizures. Then he had an
ND tube placed late last week (his tube usually goes to his stomach but the ND
means it passes through ths stomach and goes deep into his intestines, feeding
him continuously). This helped his desating a little, but not 100%. The cath
seemed to be the thing that would give us all our answers, or so we hoped-or
didn't hope. Thats the thing about being heart parents- you never know what to
wish and hope for. Do we hope his heart gives us the answers? yes and no- yes
because then maybe we can figure out how to help him but NO! we don't want his
heart to have any more issues than it already does! I learned to stop hoping
and praying for specific things to happen- and just start praying that they can
find out whats wrong and fix it- whatever that may be. I have also learned to
stop trying to calculate and figure out when we will be going home. I would
pray every night to go home and cry myself to sleep every night to be with
Jackson and my family to be whole again. I still ache for Jackson, but I've
stopped praying to go home. I now pray that I can find a way to be comfortable
being here.
The morning of the cath was like
any other morning of a procedure- no feeds after 4am and waiting for the call
that they were ready for him. He was second case, and the doctors and nurses
assumed he would go anywhere between 11 and 1. They called for him at 12:40,
and he was taken away at 1:00. We got updates every 45 minutes to an hour and
he was out of cath sometime after 4pm. We spoke to Dr Rome, his cath doctor,
who explained what interventions they did. First they lightly ballooned his aortic
arch and then they made a hole and put a stent between his left and right
atriums. The pressure they were looking for was less than 12 in his left
atrium. Anything over 12 would mean needing a ballooning and stent. Dr Rome
said at lowest his pressures were 12, highest was 30. We were both pretty
shocked by how high the pressures got and were glad they went ahead and did the
cath in hopes this would help him breathe better and feed better.
We were brought back to Hayden
and I immediately knew something was off- love (and hate) that mothers
intuition. He looked swollen slightly and he was very unhappy. He was trying
hard to move around but because he was coming off sedation, couldn't. He was
trying hard to cry but again, coming off sedation, he couldn't. It was so hard
to watch him and not be able to pick him up and comfort him (after a cath
procedure, there is a 4-6 hour 'flat' time where they cannot be held and must
lie flat). As he was doing this, his oxygen started to go down. He was at
around 80% when we first got back to see him but was soon drifting in the 60's.
We gave him blow by oxygen that was working for a bit- he already had a nasal
cannula on so they were bumping up his breathing support with that. He
continued to become more uncomfortable and more unstable- with his oxygen
dipping lower and lower. Little by little more and more people started coming
into his room to offer help. His oxygen was in the 50's and wasn't coming up
and it started getting pretty scary in here. I made eye contact with my dad and
asked him to get Jackson out of here as I could just tell this wasn't going
anywhere good anytime soon. His oxygen went even lower- into the 40's and the
nurse was covering his airways with a mask to bring him up- and it wasn't
working. By this time his room was full of about 15-20 people between nurses,
doctors, respiratory, etc. I was bedside holding Hayden's hand trying to calm
him and making eye contact with Rob who was across the room just in shock. His
personal nurse kept making eye contact with me and I kept pleading with her to
tell me what was happening...to which she would look back with the same
terrified eyes I had and say 'I don't know what's happening'. Hayden's oxygen
continued to dip lower and lower- every time I thought it couldn't get any
lower, it would drop another 5. At one point he was at 23% and I thought 'oh
god, is this going to be it?' Nothing seemed to be working and no one seemed to
know why. As a heart mom, I am sadly learning through being here and witnessing
death and also following several families who have experienced death that
anything can happen with these babies. Things can go from bad to worse to
tragic way too fast. The entire time he was dropping in oxygen, he was in
hysterics and was screaming under that mask. It was all I could do not to rip
that thing off his precious face- but knowing that was the only thing keeping
his sats where they were and that without it, well...
I made a promise to Hayden a few
weeks back that I would never allow him to cry as long as I could help it. IV's
had been the enemy and after that horrible night when they poked him 5 times
and he cried harder than I had ever heard, I promised him he would never cry
that hard again. And until last night, I'd stayed true to my promise. Anyone
that has met Hayden knows he doesn't want for anything- he is held, kissed and
loved every single second of the day. Even when I am sleeping, he has a slew of
fans here at the hospital that come and scoop him up in the late hours of the
night, or early morning. Watching him in that state was unbearable...and I do
believe had I been able to pick him up yesterday in the midst of his episode,
he would have calmed, even just a little bit. The only thing keeping me from
completely loosing myself was one very important lady. The nurse that was
giving him oxygen to breathe had become a personal friend over the last few
weeks and I am still trying to find her today to squeeze her and thank her for
saving both Hayden and myself in that horrific moment. The whole time she was
holding oxygen to his face, she was making eye contact with me smiling and
winking, saying 'it's going to be okay'. She is my hero and I can't wait to see
her to tell her how amazing I think she is. Its people like her that make me
believe God has angels on earth- and I thank God he sent her to us.
Long cath story short, the cath
procedure technically went as planned- it was the recovery that did not go
well. Once they were able to sedate him and bring his oxygen up a bit, they
decided to reintubate him and stabilize him completely before trying to figure
out what was going on. They did an echo and we were happy to hear that another
doctor-turned-friend had been reading the results from her home (thank you
:) The outcome was good- his heart seemed stable and he did not need to
go back into the cath lab last night. They are still keeping heart function in
their back pocket but for now, it seems to be good. All in all, they think what
happened was our sensitive Hayden had a bad reaction to the anesthetics, some
extra back up of mucus, possible lung pressure, learning his new heart- again,
etc.
Today's plan~ they just extubated him and I am
waiting for the green light to hold him again! It's been a long 22 hours. Now
we wait to see how he handles it and hopefully restart his continuous feeds. If
he accepts those, then they will try to bring his tube back up into his stomach
and see if he accepts those feeds without desating. If not, we figure out what
type of tubing he needs to feed from home. Thank you for your continued love
and support throughout this ongoing journey.
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