Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Thursday, October 14, 2010

Phase 2

We were brought to Phase 2 shortly after for the remainder of her recovery. Phase 2 started out as normal as can be for a baby coming out of anesthesia. They had said if she didn't settle by 11:15 we could give her some tylenol because we knew she had a sore throat but other than that she shouldn't have any pain. I put on the call light right at 11:15 to request the tylenol. It was 11:50 when they finally got it to her. I was getting so irritated because I knew they could hear us struggling in the room! She gave her the tylenol finally and said to give her 1/2 an hour for it to kick in. The nurse called anesthesia and they said to give her another dose of fentanyl. We went from thinking we'd be going home within the hour to being there for another hour. Once they get a narcotic they have to stay an hour for monitoring. This is when we really started paying attention to this high heart rate that she had. We had a new nurse at this point - thank goodness - and she was really good about constantly coming in to check on her. She even left our door open so she could make sure she could hear Kara and us in case there were any problems. The poor other patients in phase 2!

I don't remember the time frame of much at this point. The red light was blinking and the alarms were going off pretty constant because of her heart rate though. I remember watching it - it had been in the 170's, and her oxygen level had been 98-99%. Her heartrate started climbing - 180's, 190's 200's and her 02 level started dropping - 95%, 92%, then her pulse hit 214 and 02 hit 85%. I calmly said to Brian "get the nurse. Put on the call light. GET THE NURSE." The nurse heard us and came running in. Kara was SO not with it. They paged anesthesia right away and the three of us tried our hardest to keep her awake - her eyes were rolling back in her head and we just kept her moving - took her blood pressure to keep her awake and to check that out and then the anesthesiologist student came in. We all tried to put the pieces of the puzzle together but had no idea what was happening. Nothing was adding up. I remember a lady coming in and talking to the nurse - after she left I asked her who she was. She was a nurse coordinator/liaison and she told her that we could be admitted if necessary, that would be no problem. The nurse told me we aren't talking about that yet, we're going to give her some time. Throughout the next few hours we had our surgeon come in a few times, the anesthesiologist resident, the anesthesiologist herself, all to keep an extra eye on Kara. The anesthesiologist was so nice. She explained that that's why they warn us so much in preop of the way they come out of the anesthesia and that's why they don't like to give babies hardly any extra drugs. She said because of Kara's allergy history they used as little of everything as possible. Then Dr. S. came in again and explained that because we didn't know what was going on with Kara it was best for her to be admitted for observation of her vitals. She wasn't comfortable sending us home, especially because we live so far away. She left the room, I looked at Brian and started to cry! I had held it together pretty well but to know now how worried they were about her, I really started to panic! Lab came in for a blood draw and x-ray came in to do an abdomen xray to make sure there was no puncture or anything from the surgery that could be causing problems. All this came out just fine.

Even though Kara was extremely fussy, she seemed most irritable at her feet. I kept thinking it was because of the IV (in her foot), the blood pressure cuff (on her other leg) and the O2 sensor that was on the IV foot. She screamed each time they took her pressure which was to be expected but it seemed that anytime a cord pulled even the slightest bit, or her foot got bumped, she'd scream! I kept thinking there was something wrong with her IV and checked out her IV. Her foot looked a little puffy so we had the nurse check it out thinking maybe it was going bad. Her other foot actually was a little puffier than her IV one so we figured she was just fine. She has somewhat chubby feet but I never remembered them being that chubby! We put it off as irritability and were on our way to the floor.

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