Sunday, May 31, 2015

Sam's Story, Part Six

...continued from {Part Five}

We left the hospital again without Sam, but this was the last time.  We went across the street to eat at a place we had been many times before.  I was so mad at everyone for wanting to go eat.  How could anyone want to eat?

Stephen and I rode back to Bertram with my mom.  Thankfully, I slept the whole way there.  We hadn't seen the girls in three weeks, and I was so excited to see them but dreaded having to tell them they wouldn't see Sam again.  When we drove up, the four of us were so excited to see each other.  They didn't ask about Sam right away, so we just watched them play and enjoyed being together.

The next morning, Emory said something about Sam being at the hospital, and Stephen and I decided it was time to tell them.  Emory was angry when we told her.  How could it make sense to them when he looked fine the one day they had seen him in the past eleven weeks?

Over the next few days, Stephen and I made impossible decisions and planned Sam's funeral.  When I was in high school, a boy in my grade passed away.  His mom led the whole service and shamelessly presented the gospel.  My goals for Sam's funeral were to honor him, share the gospel, worship our Lord, and have no regrets.  When we met with Gordon, the pastor, to talk about Sam's service, Stephen and I said we wanted it to be a celebration, which I know is cliche.  Naturally, a funeral for a baby is very sad, but we didn't want anyone to be sadder than necessary, if that makes sense.  We asked Gordon to share the salvation message and read Psalm 27.  That particular Psalm has been special to Stephen and me since Sam was admitted to the CHSU.  Other than that, Gordon was welcome to say what he felt led to share, and he did a wonderful job honoring Sam.  Gordon said that on the number line of eternity, Sam's time on Earth (four months) looks the same as Methuselah's (969 years) because the span of eternity is so immeasurably long.  Our time on Earth is so short compared to eternity in Heaven.  Praise God for that.  I felt at peace at the end of the service, and I think we did the best we could do.  We sang "Your Grace is Enough," which has been an anthem for me since I started staying home with the girls two years ago.  We sang "Something About That Name," which I sang to Sam many times when he was in the hospital, and we sang "How He Loves" by David Crowder.  What Stephen said during the service is {here), and what I said is {here}.

Emory and Harper talk about Sam every day.  It actually helps me process everything by hearing them say Sam is in Heaven, he's not coming back, and that we'll see him again in Heaven soon.  Death isn't taboo when you're four and almost three.  The girls have asked some really hard questions, but each one gives us the chance to talk with them about Sam and salvation, and for that I am thankful.

The hope of Heaven promises forever without empty arms.  Only joy, only peace, only worshipping our Lord and Savior Jesus.  Forever with Jesus.  Forever as a whole family.

I know there will be no crying in Heaven, but I can't imagine my reunion with Sam without a flood of tears.  Sam, your story didn't end on February 11.  Your legacy continues, and your life glorifies God.  I am honored every day to be your mama.  I will hold you in my heart until I can hold you in heaven, my sweet boy.

Wednesday, May 27, 2015

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}...

Monday, May 18, 2015

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}...


Tuesday, May 12, 2015

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}...

Tuesday, May 5, 2015

Sam's Story, Part Two

...continued from {Part One}.

Sam spent two wonderful, memory-filled months at home with us.  The girls didn't waste any time falling in love with him.  Emory and Harper wanted to help me with everything to do with Sam, but it was especially hard to peel Emory off of him.  We spent our days taking care of Sam, holding him, and taking walks around the neighborhood.  We took him to church twice, I took him to MOPs twice, and he made road trips to Bertram twice.  

Sam was an an incredibly content, easy-going, chill, happy baby.  We thought Emory was an easy baby, but Sam put her to shame.  He only fussed or cried if he was hungry, tired, or needed a diaper change.

I took Sam to his two month pediatrician appointment in Tyler with Dr. Hardy on November 24.  It was an uneventful appointment: he was gaining weight well, he got his two month shots, and his oxygen sats were around 80, which was normal for him.

Over the next week, which included Thanksgiving and visiting lots of family, he got fussy and started spitting up.  I was pumping and bottle feeding, but the only thing that really settled him was nursing.  He was just not acting like himself.  When we got back from Thanksgiving, I called the pediatrician to set up an appointment to talk to her about what I thought was reflux.  When I took him on that Wednesday, December 3, he had only gained two ounces in a week and a half, and his sats were in the 50s and 60s.  Dr. Hardy called Dr. Kao to set up an appointment for the next day.  I actually considered taking Sam and the girls to the appointment by myself, but I'm so thankful now that I didn't.

Stephen and I took Sam to see Dr. Kao on December 4.  Each appointment with Dr. Kao started with all the normal baby vital checks, plus a pulse ox test and an EKG.  Looking back at the pictures, I can tell how blue he looked.

Sam's oxygen sats were measuring in the 50s and 60s.  Dr. Kao rushed into the exam room, rushed us into the sonography room, and the sonographer, John, started doing an echo.  They left the pulse ox on during the echo, and Dr. Kao was able to see what Sam's heart was doing on the echo each time his sats crashed.  During the echo, his sats dropped to the 20s and 30s.  John quickly finished the echo, and Dr. Kao walked us (Stephen carrying Sam and I pushing the stroller) to the congenital heart ICU.  A team of nurses, RTs, and doctors were waiting for Sam.  Dr. Kao said several times what a fighter Sam was each time he desatted.  This led me to believe some kids must stop breathing during these spells.

They placed central lines, monitoring lines, and oxygen cannulas to get his sats stable.  He was finally able to rest.

Over the weekend, every time Sam got agitated when he was hungry or uncomfortable, he had tet spells (a rapid drop in oxygen saturation), but he was able to recover on his own without the help of medicine.  On Saturday he had a really scary, sustained tet spell that required they start him on medicines to help heart function.  I blogged about it {here}.

He had his cardiac catheterization on Monday, December 8, which confirmed he was a good candidate for the bidirectional Glenn shunt.

The doctors originally planned on scheduling Sam's Glenn for that Thursday, but he stayed so unstable that they moved it up to Tuesday, December 9.  Stephen and I were woken up early that morning by the surgeon's nurse practitioner telling us they were going to do the surgery that morning.  We had met with the surgeon previously, talked to Dr. Kao numerous times, and researched the surgery on our own, so we thought we were prepared for it.  However, nothing can prepare you for walking your baby to the O.R., kissing him bye, and handing him over to doctors to perform a very serious surgery.  I am not a highly anxious person, but I was terrified.

Dr. Mendeloff's NP came to the waiting room frequently to update us at each step of the surgery.  When she came out to tell us Sam had come off the heart and lung bypass and was doing well, I was so relieved I just burst into tears.  Sam recovered well after the Glenn.  He came off the ventilator the next morning, and they were able to remove the pacing wires and chest drainage tubes as expected.

They moved him to the stepdown floor after a few days, and he started back on bottle feeding, but then he started running fever and tested positive for rhinovirus.  He didn't tolerate feeds well.  They fed him somewhat successfully through an NG tube, but he just didn't completely recover like they expected.

A week after his OHS, his fever spiked, so the nurse and NP suspected he might have an infection somewhere.  His abdomen looked distended, and when I asked about it, the NP ordered an abdominal X-ray.  The X-ray showed that his bowel loops were dilated, so they started him on antibiotics and held off feeds for 24 hours.  Twenty-four hours turned to three days, which turned to five days, which turned to a week.  The doctor suspected he had necrotizing enterocolitis (NEC), which could lead to a perforation and infection.  He never presented symptoms normally.  Babies with NEC usually get better or worse quickly, but Sam stayed about the same.  Sam had countless X-rays, CT scans, and ultrasounds, none of which gave any specific answers.  They eventually started Sam on feeds by NG tube, ND tube, and then by bottle.  The cardiac attending docs consulted with a G.I. specialist, Dr. An, who suggested Sam might have a gut motility issue.  Dr. An started Sam on a motility medicine that seemed to help a little, but he never returned to his pre-surgery feeding volume.

The weekend before Christmas, my parents brought the girls to see us.

I was so devastated that Sam had to spend his first Christmas in the hospital.  I hated that we didn't get to have Christmas as a whole family.  The hospital staff was incredible about trying to give us a good Christmas, but I almost wished we could have pretended like it was just a regular day.  It was so depressing to be there any day, but especially at Christmastime.

They even had gifts for the girls!!

Look at that hair!

After almost a month inpatient, Sam seemed to be doing well enough.  He was discharged on New Year's Day.

Continues in {Part Three}...