5/31/04 - More good news today. Toby's pCO2 was a little up, but his bicarb level was
29! The lowest it's been in quite a while! Also Toby had an ultrasound study of his
heart right before surgery the other day and today we learned that his pulmonary
hypertension is improved! Sometimes pulmonary hypertension is very slow to
improve and sometimes it doesn't improve at all, so Toby has improved at a better than
expected rate. Yippee! Tomorrow we hope he will have his swallowing study...
5/30/04 - Toby is recovering well from the surgery. He had a blood gas this morning
that was better than it's been in weeks. His pCO2 was 48, pH 7.45 and Bicarb holding
steady at about 36. We are very happy about that. Lets hope its a trend. He sounds
pretty swollen still but he is making some real baby sounds too. That is very exciting.
He was transferred out of the intensive care unit to the pulmonology unit tonight,
where he is hanging out across the hall from his very first roomate, Mr. Moon! Small
5/29/04 - The last three days have been very long and complicated, but here is the short
version. Thursday morning Toby was doing better than he had in a couple of days so
the doctors weren't sure they wanted to do the procedure. Toby was NPO (no food) so
they would let us know what they decide so we could feed him if the procedure was a
no-go. He was very upset from being hungry and all I could do to help him stay calm is
hold him with both arms. It was 3 pm before we heard 'no procedure'. Toby had been
NPO for 15 hours and I spend the entire day sitting in a chair holding a binkie in his
screaming mouth. We were upset with that and the cancellation since that's what we
brought Toby to Childrens' for.
Friday they decided to go ahead with the visualization of the airway. They lasered
away some of the swollen tissue that was blocking his airway and found that he has
partial paralysis of one vocal cord, and mild subglottic stenosis. We are very happy to
finally know what we are dealing with and they are making a plan for followup. Toby's
vocal cords will likely heal on their own. The larger issue is can he close his airway off
when he swallows with this partial paralysis. We will find out next week in a swallow
Toby made it through the surgery with flying colors. He didn't need to be intubated
afterwards, which was a real possibility. And he had a pretty good blood gas this
morning. We hope he will continue to have good gasses and he's heading in the right
5/26/04 - Today Toby was transferred to Childrens'. We met with the pulmonologist
and he said Toby will get his procedure tomorrow afternoon. Assuming they do not
find anything very complicated, Toby will be able to go back to UW to convelesce,
which makes him very happy! He did great during the transport, sleeping quietly
during the ambulance ride. This was Toby's and my second ambulance ride together.
Although this time he was a separate person! Before the transport, we had fun with
Maggie and Toby's matching outfits. Go Sun Devils!!!
5/25/04 - Last night a Pulmonologist from Childrens' Hospital came and evaluated
Toby. He believes that we should admit Toby to Childrens' where they can visualize
his entire airway (under general anesthesia of course) and determine once and for all
whether there is an obstruction and what should be done about it. We agree, so
tomorrow Toby will leave the UW for Childrens', just down the road a bit. Otherwise,
no change. Toby sounds pretty good today. And he's over 8 pounds!!!!