Friday, February 24, 2017

The cost of denial...

Last week's surgery was supposed to be simple. So simple in fact, it wasn't even technically considered a surgery; more a procedure.  And the only reason her doctor admitted Tess into the hospital following the surgery was because he was worried about all of the things that could go wrong for her post-op due to her many health challenges, not because of the surgery itself. So worried, in fact, that he admitted her into the intensive care unit because, as he put it, "If something starts to go wrong for her, it's going to be a situation that will require a one to one nurse and she just can't get that same attention on the regular floor.".

Personally, I thought he was being a bit overdramatic considering how minor the surgery was.

Once again I was right, and I was wrong.

Tess did superbly after surgery. Sore and tired but otherwise fine. We spent the night in the intensive care unit and by nine the next morning were prepping for her to be discharged with a clean bill of health.

Then, around eleven, literally an hour before we were walking out of there, Oreo started pacing around Tess's hospital bed and whimpering. She wouldn't stop until I relented and let her up on the bed to check on Tess. And at first that's all I thought she needed to do because she hadn't been able to get close to Tess since prior to surgery and Oreo starts to stress some when she doesn't get regular access and is able to get up close and personal with her girl. Then I really started to watch Oreo interact with Tess and a warning flare went off. Oreo went right up to Tess's mouth, licked at it, paused to stare at Tess, then flopped right on top of her with a heavy sigh. The type of sigh she tends to heave when Tess is in trouble.

Here's the other thing. As the morning had progressed I thought Tess was starting to look worse rather than better or even the same. But her vitals were good, better than good even. In the words of Tony the Tiger, they were "Great!" No fever, good respirations, normal heart rate. She was smiling and taking her food without any trouble. All the things that I use to determine how she is doing.

Still, she looked, "off".  And then there was the Oreo thing. I very briefly considered telling all the docs that came by on rounds that I was a little worried, but I had nothing concrete to back up my worry with. I couldn't very well say to them, "Oh, by the way, I know she is doing great and all but I think she looks a little off and her dog alerted on her in that special way she has when the shit's about to hit the fan with Tess."

Can you imagine how that would have gone over? I could, and preferring to be able to actually leave the hospital rather than be personally escorted to, say, the Psych Ward, I stowed my worry and we left the hospital.

Cut to us literally being on the ferry and almost home when Tess starts in with a really junky sounding cough. Oh crap. We ended up having to hook up our portable suction in our car to help her clear the junk from her mouth. By six that night Tess was going into full on coughing/retching jags and starting to truly vomit with them.

This is a bigger deal with Tess than with most kids for two reasons:

1: Tess had something called a Nissen Fundoplication surgery done on her when she was four that literally prevents her from being able to throw up, thereby preventing even more aspiration pneumonias. The fact that she was vomiting indicated that the Nissen had let go and now Tess's risk for aspirating and developing an aspiration pneumonia was a lot higher

2:Tess only gets nutrition thru her gtube . It's very regimented and she has very, very little room for error because she would get dehydrated very quickly not to mention she needs the calories and general nutrition. With her vomiting we had to stop feeding her which meant no fluids going in.

Because of this I immediately called her pediatrician. He thought it was probably post op nausea and agreed to keep her food/fluids off for the night and restart them in the morning but to call him if she developed any other symptoms in the night.

After we gave her an anti-nausea med, she seemed a lot better. By the next morning she still looked a little off but her vitals were good and she was smiling and "talking". All really good signs so I put her on Pedialyte for a while then switched her back to her regular food later that afternoon. Cut to around six and she was back to vomiting and looking terrible. We had to stop her fluids again. I spoke with "Dr. Jen" (our island doc) and she agreed Tess should be seen the next day so the next morning she stopped by and, naturally, Tess was looking okay. Once again, good vitals, smiling some, and back on her fluids. Jen and I came up with a plan and we felt pretty good about the fact that Tess seemed like she was maybe turning the corner and feeling better.

By that night we were back to her puking and no fluids. I did the math and realized she had only had in three days, less than the amount of fluids that she normally has in one. Not good. Her heart and oxygen alarm blared all night and by the next morning she was good and truly sick. Scary sick. I got in touch with "Dr. Jen" and told Charlie to expect to be told we had to go to the hospital with her.  Jen came by later in the morning and by that point, I was quite scared. Tess was barely able to keep her eyes open and when they were, they would roll up into the back of her head. Her breathing was super shallow, hitched sounding, and too fast. Super high heart rate as well but no fever. Jen had tried to reach the surgeon who had done Tess's surgery but he wasn't on call. So, for only the second time in the four years or so since Dr. Stephenson gave me his personal cell phone number, I asked Jen to call it. Didn't matter that it was Sunday and I knew for a fact he wasn't the pedi on call. Next to Jen, he knows Tess better than anyone else and I needed him to know what was going on. God love him, he called her back (after she had told us we had to go and had sent us on the boat to take Tess to the hospital) and he agreed 100% with her that Tess needed to be seen asap. His big worry besides dehydration? Sepsis.

Oh. My. God. I hadn't even thought of that and so now it was added to my already super long list of fears for her.

There were several moments on the ride across the bay that Charlie or I would quickly turn around to check on Tess because we thought she had stopped breathing. I am not even close to exaggerating when I tell you that her breathing was so hitched and shallow that there were times we couldn't even hear it. Jen had given us the option of going by ambulance but we thought Tess would be okay in our car. I need to remember how fast Tess crashes, and once again, I will not make the same choice next time.

We even looked at each other and said aloud, "We may have waited too long this time." I cannot begin to explain to you what that feels like but I wouldn't wish it on my worst enemy.

We were scared to death for her. And the guilt for me was so bad because I *knew* even before Jen saw her that she needed to get to the hospital and that we should have taken her on the first boat after the horrible night that she had had. But I wanted her to be okay so badly and to not have to go to the hospital again that I ignored my own gut instincts. So stupid. So so so stupid. Like not enough stupids in the world to tell you how stupid that was of me.

Long story (very long-sorry about that) short, Tess did in fact get diagnosed with sepsis, pretty severe dehydration, and a lower left lobe pneumonia. She was a very sick girl.  She was so sick in fact, that I didn't take even a single picture of her like I normally do when I post on FB that she is in the hospital because I was afraid that her sisters and grandparents would see how very bad she looked and, basically, be as scared as Charlie and I were. (It wasn't until late the next day that I took one with her Superlove and though she is weakly smiling at her sister, all I can see in that pic is how sick she looks. And that was her looking much better than the day before).

There was talk of transporting her to Maine Med but our local hospital felt like things were still under control and that they would move her quickly if she became any more unstable. They were very comforting and reassured us that everything had been caught early and her prognosis was really good.

Thankfully, Dr. Stephenson came in on all of his days off to look at "his girlfriend" himself. And even more thankfully, she responded quickly to the IV antibiotics and fluids they were quickly putting into her.

She stayed in Special Care for four days and got released under the condition that we would call immediately if she developed any symptoms at all, no matter how minor.

She's still not herself, but she is slowly getting better.

As for me, my guard is way up and I won't be ignoring my instincts where the Toodle Bug is concerned again.

And I won't ignore Oreo's either.