One of those days

Like a low-grade fever or a dull ache is our sadness today; it's not acute but it's just beneath the surface, taking the edge off happiness.  Josiah is back on nitric oxide as of this morning.  He had a profound desat and they couldn't get him back up until they hooked up his NO.  The staff physician and the surgeon were in the room when this happened.

The plan is for Josiah to have surgery on Monday.  The surgeon wants to discuss his case with the group of 50 on Monday morning to get more input from everyone on what procedure to do in order to get more pulmonary blood flow and thereby increase his saturation levels.

He also tested positive for chylomicrons.  I believe this means that a part of his lymph system was nicked during surgery.  This is quite common as the surgeons are dealing with such a small area on babies.  Due to this, he needs to be on a special non-fat or low-fat milk for 6 weeks.  It took me a while to realize the obvious - if all goes well I'll be pumping for at least 6 more weeks, approximately every three hours or less.  This isn't a big deal when I'm by myself in the hospital but it gets a little more complicated when I'm at home trying to care for my two boys.  I'm clearly hoping to be home soon.  I also realize that I'm ridiculous to even concern myself about this given the current state of things.  So I'll move on.

Yesterday I wrote that Josiah needed his carbon dioxide level increased in his body.  The reason was explained to me like this (mistakes are mine):  pH alters the way blood flows in the body.  The body wants to maintain a normal pH of 7.4.  Josiah has high bicarb (a base) which makes his pH high.  Carbon dioxide is an acid so it wants to go high to counteract the base.  As they increase the carbon dioxide inside Josiah, this decreases the pH which increases blood flow to the brain and then more blood comes back to the lungs through the superior vena cava and gets oxygenated, thus increasing his saturation levels.  It's something like that anyway.

Isaac has been our elixir.  I don't get a lot of joy from using a straw to drink my water but the look on Isaac's face after performing this great feat himself can't help but elicit a laugh from his parents.  During Isaac's previous visit here we heard another boy at RMH say, "He's so cute.  I just want to eat him up," after looking at Isaac.  My sentiments exactly.

Not that he always makes us laugh.  Graham and I were covered in hair after his haircut today.  He sat on Graham's lap while I held his face still and the hairdresser cut.  Isaac was less than impressed.

I met a woman today who is a recent immigrant.  She did not know until her baby was born a few weeks ago that there were heart troubles.  She lives many hours from Toronto so she's here alone with one child who is around 6 years old.  Children are not allowed to visit in the CCCU so that child waits in the hallway while the mother visits the baby.

We are blessed to know God's love during this time.  Thanks so much for your prayers, support, and emails.

Blessings,

Elizabeth