Sam's Story, Part Five

...continued from {Part Four}

On 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 after the second abdominal surgery 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.

On Monday, February 2, I sent a text to my family and friends 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.  Sam's skin under his neck and along his groin on his left leg was raw--the nurses thought it was a yeast infection.  One of the nurses said she thought it looked like Sam also had ulcers in his mouth.  Sam started 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 throughout his last week, but this was the first day he got plasma and platelets to replace his low blood counts.   

On Tuesday, the 3rd, Sam's 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.  Instead of a fever, Sam's body was hypothermic.  The cardiologists said this can be the body's response when septic.  The nurses used the warming blankets to keep his temperature as close to normal as possible. 

On Wednesday, the 4th, Sam was extubated, 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, Dr. Ghisoli, 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.  

On Thursday, the 5th, Dr. Stromberg, one of the attending 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.  Later that 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 a reaction triggered by the infection.  Sam still had what looked like a rash under his neck and along his groin, and he had broken, raw skin on his face where tape had been and around the colostomy bag.  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 infection and started giving him immunoglobulin (IVIG) 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 beautiful eyes.  Stephen went to work this day and came back to Dallas to stay that night.
    

  

On Friday, the 6th, Stephen drove back to Tyler from Dallas to go to work.  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 oscillating 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 infection was affecting his body's ability to fight the infection, so they continued to give him platelets, plasma, and IVIG.  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.  I called Stephen and had Dr. Gatlin explain everything to him over the phone.  Stephen left work and got to the hospital as quickly as he could.  I called my mom, and she and my dad came to the hospital to be with us.  I texted my friends to give them an update, and Stephanie called me right away and asked if I was worried.  I told her I was, and she, Jill, Taylor, Brooke, and Suzanna came to the hospital.  Stephanie told me when they came to the unit to see us, Stephen walked out and said he didn't think Sam was going to make it, and my friends were just shocked.  But once they saw Sam, they understood.  

I'm so thankful for these girls who have loved Sam, me, and the rest of our family so well.

There were supposed to be only two visitors in Sam's room at a time, but Sam's sweet nurse, Seema, allowed the six of us.  We prayed over Sam, and Stephanie read and quoted scripture.  

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.  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 his skin, 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.  Numerous friends and family took pictures with rally caps on and included the hashtag on social media.  

On 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 by the time they were ready to put a chest tube in, 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.

Once the day before and once on the morning of Monday, the 9th, 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 share Sam's story using the hashtag #rallyforSam.  The Aggie Network shared a post on social media about rallying for Sam.  You can see my entry about their first post {here}.  Sam, I wish I knew the number of people who prayed for you throughout all of this.  

On Monday morning, 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 skin weren't doing anything, so the dermatologist did a skin biopsy.  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 urinary catheter.  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 excruciating 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.  The last picture we have of Sam is from this day.

On 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 rooms in the CHSU are designed to be used as operating rooms, if necessary.  Sam's condition was so unstable, the cardiologists decided the only option was to do his surgery in his room.  While the surgery team was prepping the room, Stephen and I got on our knees and prayed for a miracle.  I refused to give up.  The lead surgical nurse told me they were all praying people, too.  I know Sam was covered in prayer that night.  

Dr. Kadesky was out of town, so a surgeon we had never met before named Dr. Renard did the exploratory lap. Before he operated, Dr. Renard told us he doesn't usually operate unless there's a good chance of a positive outcome, but the cardiologists felt like this was the only option. I know Sam's situation was so dire, and the doctors were gentle with us, but honest. 

Sometime during the surgery, my mom, Granmommy, Stephanie, Taylor, Jill, Stephen's mom, Mike, and Sarah got to the hospital.  Dr. Gatlin came out to the waiting room once to update us, and Sam was doing okay then.  Dr. Renard didn't find anything in Sam's abdomen, so we still didn't know what the problem was.  We were just thankful he made it through the surgery.

That evening in the waiting room, I heard Dr. Renard talking to another family.  Dr. Renard was going to be operating on their baby, Nicholas, immediately after Sam's surgery had finished.  I met Nicholas's mom, Laura, and she stayed up with us almost the whole night.  Nicholas's case was eerily similar to Sam's.  Laura and I still talk often.  

After the surgery, 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.  Sam was so swollen from all the fluid and his skin was so broken from the infection.  He didn't look like Sam anymore.  I remember thinking if I didn't know which room he was in, I wouldn't be able to recognize him.  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.  I stayed up all night with my mom, Granmommy, Stephanie, Taylor, Jill, Laura, and Stephen's mom.  Around 2:00 A.M., Stephen fell asleep on the couch in Sam's room, Stephanie and Taylor went to their hotel, and Jill drove all the way back to Tyler.  I spent time in Sam's room, and then would walk out into the waiting room to take a break. 
  

On Wednesday, February 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 then asked if I could hold Sam.  I had asked a few hours before if I could hold Sam, and Dr. Stigall had said moving Sam might kill him.  When Dr. Stigall agreed to let me hold him, I knew it wouldn't be much longer before Sam went to heaven.  Dr. Stigall and Sam's nurse, Nissy, worked so hard to move his bed around so that it wouldn't be in the way of the spiderweb of lines coming from the medicine pumps.  I hadn't held Sam in a week, and he felt so heavy.  The nurses, RTs, and techs on the floor came by to give us a hug, pray with us, and say goodbye to Sam.  Dr. Kao came by and said, "I don't know what happened.  Sam was just so normal."  Those words haunt me.  Sam's prognosis was so good.  The people on Sam's medical team have grieved with us.  They love the babies they take care of.  We didn't choose to live a life where babies get sick and die, but they did.  

Dr. Stigall called the chaplain, who came and baptized Sam.   Stephen and I spent the next four hours holding Sam, praying over him, and telling him how much we love him.  I started at the top of Sam's crazy hair and prayed for every part of his body down to the tip of his tiny toes.  When Sam's nurses changed shifts at 7:00, I apologized to his new nurse, Stacy, for having to start her day that way.  She told me she volunteered to be with Sam.  Stacy was one of the first nurses Sam ever had when he was admitted on December 4, and she was his last nurse.  

Like Dr. Kao said, we don't know what happened.  We knew about Sam's heart defects.  His heart worked as well as it possibly could have up until the very end.  Somehow, Sam got some kind of infection that affected his bone marrow, so that he wasn't able to fight the infection and his blood wouldn't clot anymore.

Sam was healed completely and forever at 8:50 A.M. on February 11.    

Continues in {Part Six}...