5/24/04 - There have been the usual ups and downs. Toby has had a few doses of
morphine to help him stay comfortable. His blood gas today showed that he still has
high CO2 and bicarbonate. He is quite squeeky because he hasn't had any of his
favorite drug, albuterol, in a few days. But he got some doses today. It's probably
going to be a much longer haul than we were hoping. But he is in good hands.
5/21/04 - Toby is still having fussy times, sometimes he is inconsolable. So today they
had another look at his kidneys, and found that he has kidney stones - poor baby! It
will be a while before they go away or pass, so he'll have some pain meds for a while.
Otherwise he seems to be doing fine. He was pretty stinky today so he got another
bath. Good thing he likes baths!
5/20/04 - Toby was pretty mad today. He was awake and wanted to eat! I sure hope he
gets accustomed to this new routine. We think we see improvement already in Toby's
oxygen requirements and sounds. But we may be just seeing what we want to see.
His blood pressure was up and down a little and correlated with how mad or how
asleep he was. Not a big surprise.
5/19/04 - Well, what a long day with a nice ending. Toby was a little more awake than
yesterday but not freaking out all day like Monday. He slept well last night and his
blood pressure is returning to normal. Plus, he had a long ultrasound exam of his
kidneys and it looks like all is well. No blood pressure drugs or anticoagulants!!! He
also had another eye exam and the result was very good. Stage 2 with no progression.
The doctor believes it is going to heal itself. Woo hoo! He also had an ear, nose and
throat doc put a scope in his throat to see if there is anything going on there. The idea
was that if he has significant swelling restricting his airway, that may be contributing to
his inability to ventilate (or even be the cause). This was a long shot but worth a look.
Turns out he does have significant swelling restricting his airway. And he has acid
reflux (a common preemie disorder) aggravating the swelling. So he is now spending
his time at a 45 degree angle and is on an antacid. The ENT believes the swelling is
contributing to the ventilation problem. He also believes that Toby is probably
aspirating when he refluxes. So between the 'no nippling' rule, the 45 degree angle, the
antacid, the diuretics, and the high oxygen levels, we believe Toby will start to improve
5/18/04 - Toby only fussed for a couple hours today instead of screaming his head off
all day like yesterday. He was probably exhausted from all the crying. Tonight the
nurse checked his blood pressure and it was sky high. It seemed to me it might be
because he is so frustrated with the 'no eating' rule. But the doctor says that's
probably not it. It could be a blood clot blocking flow to the kidneys. They plan to
observe his blood pressure overnight and image his kidneys tomorrow. If he doesn't
improve he will have to go on blood pressure drugs and possibly anticoagulants. We
are very bummed.