Saturday, January 3, 2015

We're Back

Well, we're back in our home away from home, the CHSU at Medical City in Dallas. 

Sam was discharged on Thursday, and he wasn't up to his normal feeds yet. He was eating about an ounce to an ounce and a half every two hours, but that is still significantly less than what he was eating before surgery. 

On Friday morning, he ate pretty well for the first two feeds of the day, but after the next two feeds he vomited most of what he ate. One of the things included in his discharge instructions is that we needed to watch for dehydration and vomiting. I called his cardiologist, Dr. Kao, and she told me to talk to Dr. An, his GI specialist to see what he wanted to do, and then call her back. Dr. An was ok with watching and seeing how Sam did over the weekend, but Dr.Kao was not. She told me to call back if he vomited again, and he did. I called her again, and she told me to call Dr. An back. Dr. An ordered an abdominal X-Ray, so we took Sam to outpatient imaging in Tyler. We asked to talk to the radiologist since it was after hours on a Friday. We were so thankful the radiologist agreed to talk to us because normally they just send the results directly to the requesting doctor. The X-Ray didn't show anything new--good news.  

Sam vomited again later, so we knew he hadn't had much to keep him hydrated throughout the day, and I talked to the on-call GI doctor again who recommended Pedialyte. I mixed half Pedialyte/half breastmilk, which he had about four ounces over four hours, but he vomited most of that, too. The NP who was on call when he was discharged said that an indicator of dehydration can be the fontanel (soft spot on their head) can be sunken in a little. Sam's was so much so that it really worried me!  I called back and talked to the on-call GI doc, who told me to take him to the ER.  

About 7:30 last night, I got to the ER at Trinity Mother Frances in Tyler. There were a TON of people there, but they took Sam back immediately. One thing we have learned is that Sam's condition FREAKS out any medical personnel who isn't cardio specialized. His sats were normal for him, but the nurses and doctors were concerned. The ER doc agreed that he was dehydrated, so they started him on IV fluids about 10:00 P.M., did blood samples and urine samples and a chest X-Ray.  He was unusually blue around his mouth and nail beds, which was also concerning because the Glenn was supposed to fix that. 

Around 10:30 P.M., the ER doc told me they were going to transfer him by ambulance back to Medical City. I don't think they felt comfortable treating Sam in Tyler, and I'm thankful we're back up here where they know what they're doing.   About midnight, they got Sam loaded, and we were off. 

The paramedic who sat in the back of the ambulance with me was so super nice. He said he had never seen a patient who was stable whose sats were in the 80s. He was really fascinated with how well Sam was doing and how well he handled the very bumpy ride. 

We got to Medical City children's ER at about 2:00 A.M.  He ate again after we arrived, and he vomited all of that. About 4:00 A.M. he ate again, and that was the first feed today that he kept everything down. He has eaten several times since then and has kept everything down. He is also on IV fluids to keep him hydrated. 

They have done several tests today. One blood test shows signs of inflammation somewhere, so he's starting back on antibiotics today.  They did an echo early this morning, and his heart function is great. Hallelujah!

I'm going to cut a long story short and say that on the 31st, the day before we were discharged, Sam accidentally took an ounce of another lady's breastmilk before I noticed. I immediately notified the nurse.  I told the nurse and NP about it again today because I was wracking my brain to think of anything that could be causing something. The NP investigated it, and the mom agreed to do a full health panel to check for any illness that may have passed through the BM to Sam.  The results came back negative for anything, praise God!  What a nightmare.

Right now, we're just waiting for labs to come back so the doctors know what to do next.  Sam is resting well, but he obviously doesn't feel well. It's so hard to see our sweet boy in pain!  Continuing to pray for complete healing!

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