One step Forward, Two Steps Back

Today was a rough one. Jaime dropped me off this morning at the usual time and when I got upstairs Meghan our wonderful day nurse mentioned that Simon seemed a little more fussy than usual and was having a harder time taking his early morning nap. I get in around 7:30 in the morning and Simon has usually been woken up around 6am had some smiling time with visiting nurses and then is napping when I arrive or is just ready for a little snuggling with me and then goes right down.

He was clearly happy to see me but almost immediately let me know that something was making him unhappy. We sat for a while and I checked all the regulars (diaper, boob, book, etc) to see what he wanted. None of them seemed to work and then I saw that he was definitely tired, but having trouble sleeping. I thought that he felt warm and was wondering if Simon was teething. He wasn't interested in chomping on anything and then he puked up almost his entire 9 o'clock feeding. That's when I noticed that the redness that I saw yesterday right around his Broviac line (and attributed to changing the dressing) had gotten bigger and now there was some "juice" underneath the dressing as well.

And that's when the fun started.

We went through several folks on the ladder trying to get them aware of something going on (that I thought was serious right away. Neuroses and/or mother's instinct) and also that Simon was getting more and more worked up and so his heart rate was just going up and up. Simon was also feeling hotter and hotter to my touch but his core temp was saying that he wasn't really feverish. He wasn't that interested in nursing around his 12 o'clock feeding which I thought was weird since he'd puked up most of his earlier feeding and the fussiness just increased. His heart rate kept creeping and when it hit 190 I called for Meghan and asked her to get a Dr. She did right away and things picked up from there.

Simon got a whole blood workup sent out and folks finally seemed concerned with the incision site at his Broviac line. Two folks from the OR came looked at the site and they checked his core temp again. When it didn't show that he had a fever I asked that they check his axillary temp too (that's the underneath the armpit one which is supposed to be less accurate) since he's core one (through is little poop shoot) wasn't showing that he had a fever but the little man was wicked hot. Turned out that for whatever reason his core temp wasn't showing it but his axillary temp finally showed that he'd spiked a fever of 102.6

They gave him another dose of Tylenol that didn't seem to touch him and we went for another couple of hours in the same cycle of fitful napping and inconsolable waking periods. His next temp reading was 104 and they added a dose of Motrin overlapping the Tylenol. I think that was the scariest time of the day. Things just seemed way too familiar with Simon presenting much the way that he did that first night. His heart rate was around 216 (120-140 is normal) and his breathing was getting faster and more labored (not as bad as that first night but still not anywhere near the low numbers that we've seen in the last week or so).
Dr Patel and Rosenfeld confirmed what our Cardiac nurse Susan already told me, which is that Simon was going to need to go back on Milrinone and if his breathing picked up more then he might need to be intubated again but that it didn't look like we were quite there yet.
Fuck. Back on Milrinone.

That and they even had to say "intubation".

It was hard that Jaime was at work. Dianne was amazing to have here and by this time Jaime was able to leave early and come right to the hospital. By the time she arrived the Motrin and Tylenol seemed to start taking effect and Simon conked out into a finally restful sleep. It took another hour or so but his fever finally came under control and we got our first smiles of the day. He's resting now with a sleeping heart rate of 132 (it's been in the one teens before this but I'll take it) and even nursed for a brief minute at the 6 and 9pm feedings).

Holy Crap. So much for no more drama. I'm tired. I'm scared. And we're still waiting to know if this is a localized infection or something more systemic. Either way it's a delicate balance of still needing the Broviac line and that's where the infection is. Simon's getting two doses of anti-biotics, he's back on Milrinone but he's resting. So who knows what tomorrow will bring. Things feel relatively under control. Relatively, that's the key term. Nothing has really felt under control since August 1st but....I don't know. Some days are better than others. Some hours are better than others.

Today was a hard day. Simon is a very sick little boy and with as much spirit and fight that he's got, he doesn't need any more on top of what he's already dealing with.

Jaime says: I'm not going to work tomorrow. My manager had to tell me point blank not to come in. She's a nurse so when she tells me I need to be at the hospital...I need to be at the hospital. Of course I want to be here 24/7 but it's a very delicate process trying to figure out what warrants using my PTO when it's already getting low. When we're coasting I feel ok about being at work but when we have a bump, that puts everything into perspective. This really is a matter of life and death.

People keep saying to me "How are you doing this (working/living/functioning) while Simon is as sick as he is?" And I just say I have no other choice. You do what has to be done. I think my greatest life accomplishment this far will be to have weathered this with some kind of grace, humour and compassion for other people. Sometimes I just want the world to stop. I want all work responsibilities absolved. I want to wear a sandwich board that says what's happening. But instead I'll go to work and when people say "how's Simon?" I'll say "he's sick" with a little nod and half smile and then go about my business because life must go on. This is hopefully the hardest thing that Laura and I will have to do.

Anybody know any one that does Reiki? He could probably use a little.

Huge thank you's for all the meals as of late. They are much appreciated.