Sam's Last Week

I don’t really even know where to start.  The last time I updated the blog was January 30.  After then, there was so little happening each day that I felt like I hardly had anything to update on Facebook, let alone write out a whole blog entry.  Stephen went back to work Mondays, Tuesdays, Thursdays, and Fridays.  He stayed at Brad and Courtney’s house Sunday nights, drove to Tyler to work Monday mornings, stayed at home Monday nights, came back Tuesday evenings, stayed at the hospital with us Wednesdays, drove back to work Thursday mornings, and came back to the hospital Friday evenings to stay for the weekend.  Stephen finally convinced me to stay at Brad and Courtney’s house at night instead of sleeping in Sam’s room.  I cried every night that I left Sam there.  There was so little happening each day, and then all of a sudden everything was happening—Sam was really sick, and I didn’t have the energy to write anything but short Facebook updates.

Here’s sort of an overview of what happened:

After Sam’s first GI surgery, they tried several times (I have no idea how many) to start feeds again, and it just never worked well enough. 

Thursday, January 29: Stephen was at work, so I walked in to Sam’s room, and the night nurse had put the huge cooling blanket on him, 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 looked uncomfortable.  Several nurses commented that he wasn't acting like himself.  After three and a half weeks and countless tests to try to figure out why Sam couldn’t tolerate feeds, the same GI surgeon who did the first surgery took him back to surgery to revise Sam’s stoma because it had narrowed.  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 (the number on top) 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.  When the surgeon 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 be covered from whatever the infection was.   

Saturday, the 31st: Sam’s heart rate was back to normal, and he was fever free, but his BP was still low at times.  He remained on the ventilator since his vitals were so unstable after surgery—he came off the vent the morning following his first two surgeries, so this was new to us. 

Monday, February 2: I sent a text to my family saying Sam looked much more like himself that day.  They kept Sam intubated until the 4th because they did a lumbar puncture to check cerebrospinal fluid for any signs of infection, and he had to be completely sedated for that.  One of the nurses said she thought it looked like Sam had ulcers in his mouth.  Sam started having bleeding out of the stoma and the suction from the NG tube, which meant he was bleeding somewhere between his stomach and the end of the stoma.  Sam had more blood infusions than I can count in the last week, but this was the first day he got plasma and platelets to replace his low blood counts.   

Tuesday, the 3rd: his coagulation factors were off, so he was at risk for bleeding.  In order to give him blood products they had to add another PICC line because his other central lines were taken with the other medicines he was getting.  They did the lumbar puncture, and the cultures and tests came back normal. 

Wednesday, the 4th: They extubated Sam, but he was coughing and gagging a lot and his breathing was labored, so they put him on high flow oxygen.  Once they extubated, we were able to see a lot more clearly that he had sores in his mouth, and his lips looked so raw and chapped.  By this point, all the cultures and tests had come back negative for any bacterial, fungal, or viral infection, so the doctors assumed he had some kind of virus they couldn’t detect through the tests they had done.  The doctors thought the mouth sores were from the virus.  A hematologist came by to try to figure out a plan for Sam’s coagulation problems.  He started Sam on a few medicines and a continuous plasma drip instead of a short-term infusion.  Culture after culture, test after test, ultrasound after ultrasound revealed nothing.  

Thursday, the 5th:  one of the cardiologists called us at 7:00 A.M. to tell us that they had to re-intubate Sam because he was working so hard to breathe and his CO2 levels were trending up.  The same day, an immunologist diagnosed Sam with Stevens-Johnson Syndrome, a really rare condition that’s basically either an allergic response to one of the medicines or it can be triggered by the virus or whatever he had.  We thought SJS was the cause of the mystery bleeding, too.  He was on several medicines that were on the list of what could trigger SJS, so they stopped his antibiotics that were covering him from the mystery infection and started giving him immunoglobulin to boost his antibodies because they were low.  Sam was initiating breaths, opening his eyes, and fidgeting, so they increased his pain medicine and sedatives.  This was the last day I saw Sam's eyes.  Stephen went to work this day and came back to Dallas to stay that night.      

Friday, the 6th: Stephen went back to work from Dallas.  I was by myself when Dr. Gatlin tried to explain to me how sick Sam was.  Sam's lungs had gotten sicker, so they put him on an oscillator ventilator that gave super short puffs of air.  The oscillator basically gave him 360 really short breaths per minute--he normally breathed around 40 breaths per minute.  The mystery infection was affecting his body's ability to fight whatever it was, so they continued to give him platelets, plasma, and immunoglobulin.  Dr. Gatlin explained that they were giving his body the support that it hopefully needed to be able to fight the infection, but Dr. Gatlin couldn't guarantee that Sam would be able to get over it.  Dr. Gatlin had been through numerous shifts with Sam, and his entire demeanor changed this day--I knew something was seriously wrong.  This was the first day I ever entertained the idea that Sam might not make it through.    

Saturday, the 7th: Sam remained about the same over night.  His lactic acid levels were starting to trend higher, which indicated that he wasn't getting enough oxygenated blood to some part of his body.  Not good.  Normal lactate level is 3 or less, and Sam's was around 10.  Sam was on the diuretic Lasix (very typical for heart babies), and they had to change the type because his kidneys were overworking.  A dermatologist came by to look at the rash, and he thought Sam didn't have SJS.  This allowed the doctors to use more antibiotics to cover Sam more fully.  My mom said something about Sam needing to rally, so I turned his little Aggie cap inside out and put it on his bed.  Stephen and I started the hashtag #rallyforSam.  

Sunday, the 8th:  I woke up with a sinus infection, so I went to an urgent care clinic, got my prescription filled, and was back to the hospital in two hours--I was so thankful it didn't take longer.  Sam had a pneumothorax--basically an air-filled sac that's supposed to be there popped in his left lung, which caused a perforation in his lung and was leaking air outside of it.  The doctor told us they would have to put in a chest tube to alleviate the free air, but Sam's lung absorbed it, so they didn't have to.  Later that afternoon, he had another pneumothorax in the same lung, so they ended up putting the chest tube in.  His vitals dipped during the pneumothorax but recovered after they put in the chest tube.

Monday, the 9th: Once the day before and once that morning, Sam's sats and BP dropped, but once the doctor pulled the air out of the chest tube, he recovered.  I don't know if that means he had more pneumothoraces or if air was leaking from the same one from the day before.  My friend, Stephanie, who works at the Association of Former Students worked with their social media team to help us start the hashtag #rallyforSam.  The Aggie Network shared a post on social media about rallying for Sam.  Sam, I wish I knew the number of people who prayed for you throughout all of this.  Dr. Gatlin was still on since Friday, so he could really see any changes Sam had had.  He told us he was frustrated that Sam wasn't getting better--the antibiotics and blood products should have been helping Sam make some progress, but he wasn't.  The steroid and antifungal creams the nurses were using on Sam's rashes weren't doing anything, so the dermatologist did a skin biopsy.  I still haven't heard the results from that.  Sam's platelet, plasma, and white blood count were still low, so Dr. Gatlin consulted with the hematologist, Dr. Ghisoli, about doing bone marrow testing.  Bone marrow is responsible for producing platelets, plasma, and white blood cells.  Something else that was weird...they had to stop the diuretic on the 7th because his kidneys were overworking.  His blood vessels were leaking fluid, which is a typical inflammatory response, so Sam wasn't able to process the fluid through his kidneys and bladder like he would if the fluid was in his vessels.  The nurse that morning was pressing around on Sam's abdomen during her assessment, and it made Sam pee everywhere, so they put in a cath.  He put out over 200cc (about 7 ounces) in one hour!  His diapers were anywhere from 30-150cc when we changed him every three hours or so.  Sam had a pneumothorax in his right lung, so they had to put in another chest tube.  Stephen and I were in the room for this procedure.  The vitals monitor beeps every time vitals fall outside the limits set, so we listened to the vitals monitor beep for 45 minutes while the doctor put in the chest tube.  Once the tube was in, his vitals got a little better.  Sam's condition continued to deteriorate over the rest of that day.

Tuesday, the 10th: Dr. Gatlin and Dr. Stigall explained that they thought the only chance Sam had was if they could figure out what was causing the underlying issues and fix that.  The risk involved in moving Sam to the lab to do a CT scan was about the same as the risk involved in doing surgery (which in itself was a sign of how serious Sam's condition was), and there was no guarantee that the CT would reveal anything, so the doctors decided to do an exploratory laparotomy to try to find Sam's issue.  His previous issue had been in his gut, so they assumed there was another underlying GI issue.  Dr. Gatlin told us there was a good chance the surgery itself could kill Sam because of his coagulation and BP problems.  The surgeon didn't find anything in Sam's abdomen, which was good, but we still didn't know what the problem was.  We were just thankful he made it through.  Sam's blood gasses showed his lactate was ">20." It was at the highest the machine could read.  As the evening progressed, Sam's blood pressure continued to drop.  Along with increasing medicines, the nurses gave him tons of fluid to help with blood volume in hopes that that would help circulation and raise his pressures.  This would help for a little while, but then his BP would drop again.  Dr. Gatlin and Dr. Stigall explained to us that at some point Sam's pressures would get so low that he wouldn't be able to recover.  

Wednesday, the 11th:  Around 5:00 A.M., Dr. Stigall told me Sam's pressures were beginning to get too low for him to recover.  I woke up Stephen, and we spent Sam's last few hours holding him, praying over him, and telling him how much we love him.