What Led Up to This Episode. . .

Thank you, Cathy, for asking what led to this episode.   I think it's a great idea to share this part of Lily's story because it's could be a great source of information for someone who's potentially facing a situation like this.


I should preface by saying that she had done amazingly well the few weeks leading up to this incident.  Her vomiting had pretty much gone away.  Really, we had to watch her more for gagging because she kept putting her fingers in her mouth, and that would cause her to vomit.  So all was well. . .


Late Wednesday night/early Thursday morning, Lily vomited in her crib.  We didn't know this until we woke up with her the next morning.  Of course, our first thought was that she had gagged herself.  Dave gives her her water/Miralax combination as he's getting ready for work, and I think she spit a little of that up.  So again, I was thinking that she gagged herself.  When I fed her the formula, she vomited.  My initial thought was that she had gotten congested from vomiting in her crib, so again, no real worries, just the sinking feeling that the vomiting would again not be predictable.  She was quite lethargic, so a little while later, I took her out of her feeder seat and laid her on a pillow on the floor.  About 30 minutes to an hour later, she vomited.  That led me to believe that she had a stomach virus. . .again.  (She has a cousin who had recently possibly had a stomach virus, and Lily had been around her, so naturally, I thought Lily had caught what she had.)


I put her on a Pedialyte and water regimen, and she had trouble throughout the day keeping that down.  Still, I thought stomach virus.  That night, she was flinching a little from pain, but I still thought that this was just pain from the virus.  I wanted to check her oxygen levels, just to be on the safe side, and put the pulse ox on her.  Her oxygen levels were great, but her heart rate was in the high 170s.  I know that dehydration can cause a high heart rate, and being that she had vomited so much, we figured she needed water.  After we gave her the water, her heart rate went down in the 160s, so that led me to believe that the problem was that Lily just needed water.  I might add that all day she was lethargic and her poor little eyes showed that she was not feeling well at all.


One other thing was that her stomach looked distended.  Since I had recently increased Lily's 1.5 calorie formula and lowered the 1.0 calorie formula, and her face looked a little puffy, so I thought that maybe she was gaining a little weight.


Dave slept in the living room with Lily to listen out for her in case she vomited overnight.  In the morning, I woke up to her making this cooing sound that was very happy sounding, so I thought that maybe she was finally feeling better.  But that cooing sound kept going and sounded the same each time.  It was quite an eery sound.  Dave asked me to give Lily her water/Miralax combination.  When I picked Lily up, when I carried her over to her seat, when I set her down--she flinched and her eyes got big as if something hurt her.  She even seemed quite uncomfortable sitting in her seat.  I pulled out the pulse ox again, this time to check her heart rate.  It was in the 190s!  I had even watched as it got above 200.  That told me that something just wasn't right, so I made arrangements for Soleil and headed for the ER.


I'll save the details of the ER for a later date, for there's one part of that story that I'd like to share.  But I will say that I truly believe that Lily's recent diaphragmatic hernia diagnosis helped the ER staff to consider her problem a bowel problem, which it was.  It was also helpful that Lily had not had a stool since Tuesday or Wednesday, when she's normally at least once a day.  It all rushed on us so quickly, it seems.


But Lily is doing well.  She is extubated!  Her sats were at 100 when they pulled the tube out, but they put oxygen on her since she was asleep and that's what we usually do when she's at home.  Although her heart rate has gone up a little, she's had pretty good numbers with that throughout the day.  The doctor is talking about her going home around the middle of next week, but I'm wondering about that.  I know of other T-18 children whose recovery from bowel surgery has been a much slower process, so I'm at least keeping that in mind.  Trying not to be negative, but trying not to have false hope as well.


Thank you so much for the thoughts and prayers sent Lily's way.  I hope to report with more good news in the next day or so.