Now to pickup where I left off. Full of smiles we wagoned Muriel down to the 2nd floor - the main floor - of the hospital yesterday evening. She was fussy but seemed stable without being on oxygen and the various drip drugs that had been disappearing over the past few days.
We had noticed since pulling her oxygen that her saturation rate was less than the 99-100% we had been used to seeing. This was wonderfully explained by Dr. VanBurgen as the difference expected by the oxygen use of the largest muscle in the body - her heart. They have redirected (into the lungs) the blue venous blood from her entire body *except* for her heart, which still dumps its blue blood into... well, itself. She will never really be expected to reach 100% without oxygen.
When she woke up we had several meds to give her by mouth, in addition to the supplements (sodium, potassium, calcium). That didn't go well. Once we gave her the sodium laced applesauce (salty applesauce?!) she vomited all of it. Hard to say what if anything had been absorbed by then. A little bit later - now about 8PM - she was given Atavan (same as the night before) to help her sleep. Sure enough she was out cold in less than 30 minutes. I expected her to sleep through most of the night. She didn't seem like she felt very well, and I think this was the first point of starting to worry.
Just past 11PM, after I had to wake her and force a few more meds down, she woke up fairly unhappy. I gave her a bottle of milk and she calmed down, fell asleep, but was making a funny grunting noise with just about every breath. I had no idea what to think of that, but the nurse saw it and didn't seem concerned, so I sang to her a little and she stopped, seemed fast asleep again.
At 2AM very similar - woke up very unhappy, felt hot to the touch. I asked the nurse to take a look at her and she had to do vitals anyway. The temp from under her arm was slightly high, and I asked her to let Sarah know up in the PSHU to see if there is anything to be concerned about. She thought a rectal temp would be more accurate, and asked to call her back if that was also high. In the meantime I had sung to her some more, gave her another bottle, and she had fallen asleep again.
From 3AM I heard her making the grunting noises again and noticed the saturation alarm was going off more often, though still just once or twice, then back to at least above the threshold. I watched it for a while and noticed it was more often in the high 80s than the low 90s now. My concern was growing.
At 4AM the alarm started going off and didn't stop. I got up and looked at the monitor and it was 76. I went over to look at her and she was grunting as before, but starting to wake up (probably due to the blaring alarm), and crying. She was burning hot on her forehead, but especially on her belly. I went to get the nurse and she was already on her way in. We decided to check her temp rectally and it came back very low - around 97. That seemed odd, because her skin was very hot to the touch. She was writhing around and generally very unhappy, and the saturation wasn't getting any higher. In fact it started reading in the 60s. That's the point I started losing my cool.
At first we questioned the reading - it didn't seem like she was turning blue or was in particular distress, so we changed the lead to her hand from her foot and instantly got a reading of 90. It didn't stay there though. Later this was explained that her extremities - in the state they were in at the time - may not have been giving accurate readings. For a brief moment it seemed that she had no temp and her saturation was actually ok. That really didn't jive with the hot skin and how she was acting in my eyes, though.
Then she starting shaking. A lot. I picked her up and held her and wrapped her in a blanket and lost all my cool. The floor nurse left to call Sarah in the PSHU, who was downstairs in less than five minutes. By the time she got there the hand reading was also in the 70s, her heart rate had climbed into the 160s, and she was very upset. Her skin started turning blue/mottled. Sarah quickly looked her over and ordered an immediate X-ray. That team arrived in less than five minutes, with the resident cardiologist. Together they decided we should go back up to the PSHU/ICU and rattled off a bunch of drugs to administer immediately. It took about an hour to pack up all our things and get her moved upstairs, where we ran right into the surgeon's rounds.
To sum up *today*, she is back on oxygen (though they say that may go at any point now), she has received some of her supplements today by IV, and they continue to watch her labs very closely. Sodium, for example, is still quite low. Dangerous as Megan pointed out earlier today. Everyone on staff has bent over backwards to reassure us - Fontan patients simply go through this, but they do get through it. She had a few periods today where she was relaxed and comfortable, and even played with a few toys in her bed. Most of the day, however, she was very upset and loud. Not quite as bad as that first night after surgery, but close.
Megan and I are exhausted. Its taken me all day to get this typed up and posted. I don't have any pictures to spice it up at the moment. I would say I will add more later, but it is probably easier to just call this post done. Tomorrow will be another day, and things will be better. I promise to take pics tomorrow.
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