Sam's Story, Part Four

...continued from {Part Three}

The following Monday, Stephen started going back to work.  During this week, I was able to start putting a play mat down on the floor for Sam and me to play on.  The child life specialist, Brooke, was always so sweet about bringing toys, mobiles, swings, play mats, boppy pillows, anything we could have wanted!  

That hair!  I mean, really.

We were able to put clothes on him again because both arms were line-free, so we could get a onesie on easily.  It made him look a little more "normal," and the shirts and onesies hid his colostomy bag.

On Wednesday, January 14, they started Sam on trophic Pedialyte feeds through an NG tube to try to retrain his system to handle feeding again.  After several hours of feeds, the Pedialyte was just sitting in his stomach, and he wasn't digesting it, so they stopped the feeds.  

Sam's vitals had been stable for several days, so Thursday of that week, the NP said we could take the monitors off of Sam so I could get on the floor with him without being quite so confined.  Around 12:30 P.M., I was rocking Sam while he slept, and his nurse gave him his dose of methadone.  About ten minutes later, it sounded like he was holding his breath, and then he would gasp and then hold his breath again.  I blew in his nose to make him take a breath, but then he held his breath again and started to turn very white.  I called his nurse in, who was so thankfully sitting right outside his room charting, and she immediately started hooking him back up to the monitors, and assessed him while she called the doctor.  Nurses on the floor, the NP, the doctor, and RTs all rushed into Sam's room and started asking questions.  The RT started bagging him, and everyone was trying to stimulate Sam.  The doctor asked what medicines he was on, and the nurse said she had given him his methadone dose about ten minutes previously.  Dr. Stigall ordered a medicine that reverses the effects of methadone, and once it was administered, Sam immediately began breathing again.  I just stood behind this medical team watching them revive my baby, answering questions when they were asked, and praying that Sam would start breathing again.

At first, the NP explained that Sam had had some sort of allergic reaction to the methadone, but we were told later that Sam was given an accidental overdose.  Up to this point, it seemed like Sam was making pretty steady progress, even though he wasn't back on feeds again.  After the overdose, he was lethargic and irritable again.  Around this time, I started feeling pretty depressed.  I had this sense of hope for so long.  Hope that Sam's heart surgery had gone well, he would recover, and then we would go home.  Hope that the gut motility meds would do the trick.  Hope that the abdominal surgery fixed his mystery problem.  Sam was supposed to go home for a few months before returning for the stoma reversal, but at this point, I figured he would stay hospitalized until after that surgery.  It felt like we were never going home.  We had been away from the girls for six weeks.  Emory and Harper were not acting like themselves when we did visit them.  It was just an incredibly miserable time no matter where we were.  

After the methadone dosing incident, Sam was given a care team of nurses.  The care team consisted of the same rotation of nurses for day shift and same rotation of nurses for night shift, and each nurse cared for Sam several days or nights in a row.  This way they were able to tell if there were any changes in his mood, behavior, or progress.

They started trophic feeds several more times and stopped them each time because Sam wasn't digesting the Pedialyte like he was supposed to.  Sam showed symptoms of withdrawing from the methadone--he was fussy, nauseated, clammy, and didn't nap or sleep at night well.  They adjusted his methadone dosing several times to try to keep his withdrawal symptoms at a minimum, while still weaning down to get him off of it entirely.  On January 21, we talked to his surgeon, who said he wasn't too surprised Sam wasn't doing better with the feeds because kids with CHDs take longer to heal, and methadone slows gut motility.  While we were very frustrated that he wasn't handling feeds yet, I was somewhat relieved to know the surgeon wasn't worried.  

On January 26, they placed an ND tube (a tube that went down Sam's nose, past his stomach, and straight to his intestine), in addition to the NG tube, to try feeds this way.  The problem with Sam's digestion seemed to be in his stomach, so the hope was that they could start with feeds straight to his intestine, and once that woke up his system, go through his stomach again.  He was started on trophic Pedialyte again, and they increased the rate at which he was fed every four hours.  He handled this pretty well, but then he started running a mild fever, which prompted the nurses to stop the feeds. 

On Thursday, January 29, Stephen was at work, so I walked into Sam’s room alone.  The night nurse had put the huge cooling blanket on Sam, and he was on high flow oxygen.  I was terrified and convinced he had RSV.  He had been running low-grade fever for a few days and his breathing sounded husky.  For a couple days leading up to this day, Sam just wasn't acting like himself.  He was lethargic, his normally bright eyes just looked sad, and he acted uncomfortable.  Even when he was sleeping, he would cry out.  Several nurses commented that he wasn't acting like himself.  Very early that same morning, Sam spiked a fever.  His heart rate stayed really high (normal for him was 120s-140s, and it was around 200 consistently), his sats were lower than his normal, his blood pressure was low (his systolic number was supposed to be between 80 and 100, and it was in the 60s), and the three tests that show markers for infection and inflammation were starting to creep up again. 

After three and a half weeks and countless tests to try to figure out why Sam couldn’t tolerate feeds, Dr. Kadesky took Sam back to surgery on the 29th to revise the stoma because it had narrowed.  Dr. Kadesky believed the narrowing in his stoma was preventing him from digesting the Pedialyte.  The stoma issue did not explain the infection symptoms, however, so that part was still a mystery.  When Dr. Kadesky came out to talk to us after the surgery, he seemed more concerned with Sam’s other issues than he did with the surgery itself.  Apparently, the anesthesiologist had to work for around an hour giving Sam medicines to get his blood pressures stabilized before he felt comfortable letting the surgeon get started.  The surgeon didn’t find anything abnormal during the surgery, so infection symptoms were still unexplained.  They started him on the three antibiotics he had been on before and after his first GI surgery so he would hopefully be covered from whatever the infection was.   

At this point, the attending cardiologists explained that Sam was now considered to be septic.  This meant he had an infection which triggered an inflammatory response throughout his body.  When I heard "septic," I knew his condition was very serious, but I wasn't as worried as I probably should have been.  Maybe I was just desensitized to the seriousness of our situation since Sam had been in the hospital for so long.

Continues in {Part Five}...