Sam's Story, Part Three

...continued from {Part Two}

When we left the hospital with Sam, I was very nervous.  Before his hospital stay, Sam wasn't on any medication at home.  Now he was on four, and each one was given at different times throughout the day, and I was responsible for giving them!  I remember comparing taking Sam home with going home after having each of the kids.  I was hardly completely recovered from each C-section, so I had a lot of recovery to do at home.  I thought the same about Sam--we were going to be rehabilitating him at home.  

When Sam was discharged on Thursday, he wasn't back to his normal feed volume yet.  Actually, at this point, we didn't know what his normal feed volume was since it had been weeks since he was taking milk again instead of IV nutrition.  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. 

The girls were so excited to see Sam again.  They don't allow visitors younger than 12 in the CHSU, so the girls hadn't seen him in a month.

We had Christmas with my parents and the five of us at our house on January 2.  

Sam ate pretty well for the first two feeds of that 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 told me to watch and see how Sam did over the weekend, but Dr. Kao wasn't comfortable with that. She told me to call back if Sam vomited again, and he did. I called Dr. Kao 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 after the scan 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, and I didn't want to wait until Monday for the results. The X-Ray didn't show anything new. 

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, of 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 a sunken fontanel (soft spot on their head). 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 on Friday, I got to the ER at Trinity Mother Frances in Tyler. There were so many people, and I was so worried about him getting sick with something else.  After I told the receptionist why we were there, she gave me some paperwork to fill out, but they called Sam back before I could barely start filling any of the papers out.  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 (cyanosis is a sign of low oxygen sats) around his mouth and nail beds, which was also concerning because the Glenn was supposed to fix that. 

Around 10:30 P.M., the E.R. doc told me they were going to transfer him by ambulance back to Medical City.  I called Granmommy to come stay with the girls, and Jill and Taylor stayed with the girls until Granmommy could get to our house.  About midnight, they got Sam loaded.  He and I rode in the ambulance, while Stephen followed in his car.  

We got to the E.R. at Medical City Children's around 2:00 A.M on Saturday.  We thought they were going to send Sam straight back to the CHSU because the EMT had told us Dr. Stigall was expecting Sam, but they kept him in the E.R. until around 5:00 A.M.  I was such a wreck.  Sam cried until I gave him a bottle, but he would throw it all up.  It was a horrible cycle.  Finally, once they got him settled in the CHSU, I started to calm down.  I knew the CHSU doctors knew Sam's case so well, and that they were the absolute best doctors to handle his care.  Sam had more X-rays and an ultrasound later that day that didn't reveal anything.    

On Sunday, Dr. Roden, the general pediatric surgeon who had been on Sam's case since he started having possible GI issues, requested a CT with contrast for Monday morning when the pediatric radiologists were working. The attending cardiologists didn't want to wait that long, so they ordered a CT with contrast for that same day to be read by the general radiologists.  I couldn't believe Sam was able to keep down enough contrast, but this CT finally showed what the doctors had suspected for weeks: Sam had fluid in his abdomen.  However, the scan couldn't verify whether the fluid was inside or outside his bowel, and the location determined his course of treatment. 

We were told there would be a plan in place early the morning of Monday, January 5.  Even after the pediatric radiologists read the CT results on Monday, they couldn't confirm the fluid's location based on the results of that CT, so they ordered another one.  The CT on Monday gave the doctors a lot more information.  The doctors said the way Sam was positioned was finally just right to show that there were multiple areas of fluid and air, which meant there was a perforation in his bowel at some point that leaked fluid into his abdomen, and his situation was much more serious than they expected.

The rest of that day, we overheard the nurses and doctors talking on the floor amongst themselves and on the phone with general pediatric surgery trying to get some answers about what the course of treatment would be for Sam.  I tell you what, the CHSU nurses, NPs, and doctors advocated for Sam countless times.  I think they were as frustrated as we were that it had taken so long to figure out what the heck was wrong with Sam!!  Dr. Gatlin updated us throughout the day with each step toward getting Sam to surgery.

Finally, around 4:30 P.M., we were told they were prepping an O.R. and getting a surgical team together to do Sam's surgery that night.  Dr. Kadesky, a surgeon we hadn't met before this day (which made me incredibly nervous at first, but Stephen and I both really liked him) came to talk to us about what his plan was during Sam's surgery.  He assumed that Sam's condition was pretty simple because Sam was acting uncomfortable but not as sick as other babies whose conditions are more serious.  

Around 5:30 P.M., they took Sam back to the O.R.  I was much more unsettled during this surgery than during Sam's OHS.  We knew the precise plan of action for the Glenn, but basically, Dr. Kadesky was going to be doing exploratory surgery and then correcting whatever he found.  Dr. Kadesky said he would either be able to quickly fix whatever problem was in Sam's abdomen or assess the situation and formulate a plan for an additional surgery later on if the situation was more complicated. 

A nurse called us once Sam was under anesthesia, and then we got text updates throughout the rest of the surgery.  With the Glenn, Dr. Mendeloff's NP came out in person to update us and we were able to ask questions.  With this surgery, all we were told from the texts was, "Everything is going well with the procedure," but we had to wait until it was over to learn what Dr. Kadesky found.

Around 8:00 P.M., we got a text that said they were finishing the surgery and that Dr. Kadesky would be out soon to update us.  I expected the surgery to take longer, so I was immediately worried.  Dr. Kadesky explained that Sam's condition was much more complicated than he had expected.  Sam had an ischemic stricture with perforated bowel and an abdominal abscess.  The stricture was essentially a part of the bowel that had been damaged, and once it started healing on its own, the bowel narrowed, much like how a scar heals.  Dr. Kadesky removed an inch or two of Sam's colon that was damaged, and Sam had a colostomy to allow his intestines to heal.  The plan was that in 6-8 weeks after this surgery, Dr. Kadesky would reverse the ostomy and close the incision.  He told us Sam would be in the hospital for about three more weeks--until he was eating well again.   

After the surgery, Dr. Kadesky said he wasn't sure why Sam had the stricture, but the cardiologists later explained that it was due to low perfusion to the bowel.  Because Sam's heart anatomy caused drastically low oxygen saturation shortly before his OHS, his intestines didn't get adequately oxygenated blood, and a part of his intestine basically began to die.  Once he had the Glenn and his sats got back to his normal, his intestines started functioning better again.  There was a strain at the stricture, which caused the perforation.  His body created an abscess around the perforation to protect the rest of his abdomen and body from the infection.  Never throughout any of our doctor appointments before or after Sam was born were we warned that his heart issue might affect any other parts of his body.

After Sam's OHS, I was astounded at how comfortable he was.  He came off the ventilator the morning following the surgery and only took Tylenol for pain.  After the first abdominal surgery, he was able to wean off the ventilator the following morning, but he was in so much pain.  The nurses gave him his PRN pain medicine, but nothing seemed to help.  I couldn't pick Sam up to comfort him.  Two days after his surgery, they put Sam on a continuous pain medicine drip, and he was finally able to rest comfortably.  A few days after his abdominal surgery, they moved Sam from the ICU level of the CHSU to their stepdown floor.  His nurses took care of him and another baby each shift, and the doctors and NPs made rounds twice a day and were always available, but just not right outside his room like they were on the ICU floor.

That weekend, we went to my parents' to see the girls.  When I called the nurse on Saturday to check on Sam, she told me they started Sam on methadone because he was showing symptoms of withdrawing from the pain medicine after they weaned him off the continuous drip.  I had a little panic moment because of the little that I knew about methadone.  When we got back from Bertram, Sam was resting better and more comfortable than when we left on Friday.  

Stephen was able to stay in Dallas with us the entire first five weeks, and I am so thankful to his boss, Misty, for her flexibility.   

Continues in {Part Four}...