We have been back at CHOP for
over a week now and Hayden's infection seems to be pretty much cleared up.
While we have been here, there has been talk about the pressure in Hayden's
left atrium and he was even scheduled for a Cath procedure to possibly balloon
a hole between the two atriums to lower the pressure in the left side. The
doctors chose not to do the scheduled cath procedure and to wait until the
weekly conference with about 60 doctors and surgeons and discuss Hayden's heart
there to come up with a plan. So for now, we are waiting a few days for that
conference and for a decision to be made.
In the meantime, Hayden's oxygen
levels have been dropping spiratically. Each time, we were able to get him back
up with a little sniff of oxygen. The first time it happened was Thursday
afternoon- this was the first time since he was born that I actually saw him
turn a blueish- grey...just another scary sight I never thought I'd have to see
as a parent. Late Friday night Hayden's oxygen saturations dipped extremely low
again and the 'sniff' of oxygen wasn't helping at all. His lowest was around
50%- because of his heart, he usually sits between 75-85, and we are at 100%.
They immediately put him back on a nasal cannula which gives him constant
breathing support and called for blood to be taken and an x-ray. When all of
that came back okay, the doctors came to the conclusion that he needed a blood
transfusion. Which of course meant he needed an IV and the one he had was no
longer working. Through this entire time I had remained calm and stable for
both Hayden and myself but when the IV team poked him 5 different times,
stability and strength were just not there. The first time was by far the
hardest I ever heard him cry. After the second poke, the woman looked at me and
mentioned maybe I shouldn't be in here- I love how they say that actually think
a mother would leave their child at a time like that. After 3 more pokes, they
finally got it in. But not before Hayden and I were traumatized by the entire
ordeal. Almost immediately after the IV was in place, they began running the
blood through. By mid morning the next day, Hayden's oxygen levels were back up
and he was doing much better. I asked the doctor that morning if blood
transfusions were going to become a pattern for Hayden since this is the third
one he has gotten in 6 weeks of life. He said that it shouldn't become a
pattern- what most likely caused this one was the amount of blood they had
taken from him over the past week and he just needed a little boost.
Back to the cath- I asked this
same doctor what his take was on the cath and the reasons behind the confusion-
basically what it comes down to is this: Hayden's surgeon Dr Spray wants the
cath done to make sure the pressure isn't too high in the left side and to make
sure he is still on track for stage two. His cath doctor doesn't want the
procedure done because he is afraid the size hole he makes to measure the
pressure will be too large and then the plan Dr SPray has for Hayden's heart
will not be a possibility. This is the reason Hayden's case will be discussed
on Tuesday mornings conference. Hopefully we will have some answers sometime in
the afternoon!
Hayden's feeds continue to be on
the top of our recovery list. As of this moment, he is 36 hours vomit-free!! We
are now fortifying his breast milk with a special formula called nutramagin-
and he is also on three different meds for reflux. As much as I hate having him
on so many medications, I am learning to adapt to the advice everyone here is
giving me- the most important thing right now is doing whatever it takes to get
Hayden from point A to point B (point A being now, point B being stage 2). This
is sometimes still hard for me- I hate that he has a tube and moreso that he
needs that tube to survive. I want so badly for him to be a normal baby who
eats all their food from a nipple. I constantly have to remind myself that
Hayden needs more help- and hopefully all this is temporary. At any rate, we
have been celebrating off and on all day for Hayden's feeding success- he is
even feeding more from the bottle than he has in a long time too!
Thank you as always for your support through all of
this. Please say some prayers that the decision made is that Hayden's heart is
stable enough to make it to stage 2 without a cath procedure and that Hayden
and I can go home this week. I can feel myself starting to fade on this part of
the journey and being home with Jackson is often all I can think about. Please
also pray for Hayden that he continues to do well with his new feedings and
starts to gain some weight!
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