Hospital at Home and Hospital Visit #3

After Hospital Visit #2

Tuesday, March 20, 2012

The following day was beautiful.  Our first full day at home left me feeling happier than I would be on Christmas morning.  Next to our wedding day and when Jayson was born, I felt this was the happiest day of my life.  It was so wonderful to have my sweet baby home and to have the heavy burden lifted from my shoulders because I was no longer fearful of losing his life.  This equipment would support him.  Mike only worked a half of a day so he could help out at home that afternoon.  We had a wonderful day and I seemed to manage the equipment without a problem.

Let me explain the equipment Jayson depends on to survive:

Feeding Pump

 Jayson has to have milk dripping through his tube nearly 24/7 and it is managed through this pump machine.  I fill the bag with enough formula or milk to last up to 7 hours and push Run.  The tube has to be flushed a few times a day with a syringe and sterile water.  The feeding bag is changed every 24 hours. 

Concentrator

This is the oxygen machine.  Jayson is not in need of high levels of oxygen.  He needs 24% oxygen to stay saturated.  Room air is 21%, so he only needs 3% more.  The oxygen coming out of this machine is 100% oxygen. This machine connects to the high flow machine where only 3% of oxygen is going into Jayson's nose.

Compressor

The compressor pressurizes air.  Jayson is not on oxygen because he needs the saturation. He needs the pressure to open his airway.  The compressor connects to the high flow machine.

High Flow Oxygen Humidifier

This machine is honestly what keeps my son alive and comfortable.  The oxygen is sent through this machine as it is pressurized and the air is warmed and moisturized.  The high pressure air my son needs to open his airway would dry his nose out completely and damage his airway if it was not moisturized.  It would cause more damage than good.  The concentrator is also connected to this machine so that the air going to Jayson's nose is high pressured.  When the air from the concentrator and compressor mixes in the high flow machine, the machine makes it so Jayson is only receiving the extra 3% of oxygen he needs.  This machine has a blue tube about 2 1/2-3 feet long that comes out and connects to his cannula.

Pulse Oximeter

This machine monitors Jayson's oxygen saturation levels and his heart rate.  There's a little sensor that wraps around his foot and it's kept on by the little blue cuff.  This monitor also helps me keep my son alive.  When his oxygen levels drop below 91% or his heart rate drops below 85 (or goes above 165), the alarm sounds. Jayson has severe apnea, so there have been several times where Jayson's body didn't tell him to breathe and the alarm sounded.  I was able to shake him and wake him up.

And this is the drawer full of medical supplies that I use on a daily basis.  Yes, I honestly feed like I've completed nursing school!

Wednesday, March 21, 2012

Wednesday, our second day home, was a day I’ll never forget.  WORST DAY EVER! It was one of the most trying days of my life.  It’s almost humorous looking back.  Here are a few of the things that happened that day:

•       The little guy had a very rough night sleeping.  I was up most of the night with him, calming him down, keeping his fingers off of the tubing, rocking him to sleep, messing with the beeping machines, changing his feeds out.  I was exhausted. 

•      When he got up from his morning nap, I went to switch his feeds from continuous to bolus and I attempted to check that his tube was in the right place using the syringe.  I pulled it back and expected to get stomach contents since he just finished his continuous feeds, but the syringe pulled back very easily without resistance and did not pull a lot out.  I was worried since every other time, I had met a lot of resistance pulling back the syringe, and I typically got more out.  I realized suddenly that I didn’t know who to call.  I had no phone numbers or resources.  I just sat and cried.  I was scared that I was in charge of such a fragile life using this complicated equipment.  I tried calling my friend’s mother-in-law who is a NICU nurse.  She didn’t answer.  I tried calling the Family Relations Coordinator, but she didn’t answer.  I paged her, and thankfully, she called me back.  She answered my question and assured me things were okay.  I cried again because I felt so overwhelmed and insecure.

•        I tied Maya outside because she was taking forever to go potty and I couldn’t keep leaving Jayson to take her out.  After about 30 minutes, I heard her barking near the back door while I was bathing Jayson.  I quickly ran downstairs wondering how she was so close to the back door when I had tied her out.  She had bit through the rope on the tie-out and ran to the back door.  Great.

•       I got Jayson all dressed and ready for his afternoon doctor appointment and planned ahead to give myself an hour and a half to get him in his car seat, in the car, driving time, and into the office.  We came downstairs and I realized we had not prepared the larger oxygen tank for travel.  It did not have the gauge on it.  I instantly felt a lot of anxiety because oxygen tanks can explode!  I gave myself a pep talk—I have done a lot of hard things.  I could do this.  I got the smaller tank with the gauge and made sure it was off.  I saw something that looked like it needed to be twisted to get the gauge off.  I began twisting and it let out this loud POP and blew a lot of air in my face.  I quickly twisted it back and sat and cried.  I was scared.  I tried calling Mike, but I knew he was in important meetings for the day.  I tried calling one of my neighbors because he’s a handyman and works a lot with air compressors.  His number had been disconnected.  I called a couple of neighbors to get his cell number and gave him a call.  He didn’t answer, but I left a message.  Mike finally called me back and talked me through the process and I was able to change the tank myself.

•       I went to find the smaller cannula to switch it out since the travel tanks need the smaller cannula.  I couldn’t find one anywhere, and we should have two nice ones and one old one.  I found the old one and it was full of dried snot from when Jayson has RSV the first time.  I called Mike again and he gave me an idea of some places to look.  Nowhere to be found.  The Home Care people took away two of the smaller tanks, and we assumed the old cannulas must have been connected to them.  I looked at the clock and I had no choice but to use the nasty old cannula.  I took it to the sink to try and wash it out.  I didn’t even think air would be able to pass through.  I used some soap and hot water, and the boogers were still in place.  I decided I could try and blow them out with some forceful air from the oxygen tank.  I connected it up, and turned the tank to 4 liters.  Well, it blew them out all right.  Right into my face.  My face was covers in moistened, old boogers.  Gross!

•       I realized I still needed to get the large oxygen tank in the rolling cart.  Well, it wouldn’t fit.  The tank was too wide.  I searched and searched and finally saw a screw.  I started turning it and it didn’t seem to do anything.  I turned it some more and tried the tank again and it was closer.  I figured it out and finally got the tank into the cart.

•        I needed to put the dog in her kennel.  Wait.  Where was the dog?  I hadn’t seen her in a while.  I called her name and she didn’t come.  I ran upstairs to find her chewing on a baby sock.  Big surprise.  She loves baby socks.  But wait, what was hanging out of the baby sock?  The Velcro for the pulse oximeter.  Where was the pulse oximeter??? In pieces all over the floor and the main sensor piece was gone and certainly in Maya’s stomach.  I called Mike and told him I had it!!! He needed to call poison control or the vet or someone to find out if the pulse oximeter sensor would kill her, and if so, he needed to come home and take Maya to the vet!!!

•       I got Jayson all connected and loaded up to go.  I had the diaper bag on my shoulder, his carrier in one hand, and the rolling oxygen tank in the other.  On our way out the door, the diaper bag slid off my shoulder and hit the oxygen tank twice, causing it to hit the floor with a loud bang, twice.  The cart twisted around and crashed one more time on our way down the back stairs.  I just sat down in my garage and let out some more tears, even though I was undoubtedly going to be late for our appointment at this time.  My handyman neighbor must have got my message and was on his way over when he finds me falling apart in my open garage.  He helped me load Jayson and the oxygen into my car and gave me 3 or 4 hugs.

•       We got to the doctor’s office and I was feeling relieved thinking about the idea of seeing my pediatrician.  I knew he would either give me words of advice or words of encouragement.  But no.  He seemed overwhelmed looking at Jayson’s file about his condition.  He didn’t have much to say at all.  He did not have any suggestions nor did he have any words of encouragement.  He did try and look for some of the tape that was hypoallergenic for Jayson’s face, but as he walked out the office door, I cried some more.

•       Jayson was hungry and it was time to feed him again.  I got out one of the large syringes the Home Care people brought me and poured the pre-mixed formula into it once it was connected to his tube.  I only had one bottle of the pre-mixed formula, and Jayson would be hungry enough to eat two.  The doctor’s office didn’t have any more.  Suddenly, the milk spilt everywhere, all over Jayson’s face and body, all over his blanket, all over my clothes and I tried to move to the sink to get it under control, but we were all tangled in Jayson’s oxygen tubing.  I lost nearly half of his milk all over the two of us and the doctor’s office floor.  The syringe they gave me was the wrong size.  I wanted to cry again, but took a deep breath and told myself, “Hey, we’re in a doctor’s office!  I’m sure they have the right size of syringe.”  I cleaned up a little and found a nurse.  They only had smaller syringes.  I used a small syringe I had and knew would fit to very slowly feed Jayson the ounce of formula he had left.  I walked out of the office with a crying, hungry baby and the both of us smelled like sour milk.

Things got better when we got home.  My neighbor met me at my garage and helped us get into the house.  He helped me bring the equipment downstairs and get Jayson all set up.  He and his wife came over again later with pizzas and a cute Easter decoration filled with candy. 

Mike came home that night and I cried on his shoulder.  I told myself over and over, “Tomorrow is another day.”

Thursday, March 22- Tuesday, March 27, 2012

There was not another day quite that bad, but the following days were still tough.  Jayson needed to be watched and cared for 24/7.  It was exhausting and overwhelming.  I started to feel the strong spiritual support leaving.  I felt so alone.  Mike had to work some extra hours and wasn’t home much to help.  He got home late at night and was tired.  I felt deprived of adult conversation and like he had no idea what I was going through.  Jayson had pulled out his feeding tube two times, and I had to put it back in.  This was definitely my least favorite thing to do and it scared me to death.

The following week, things started to get a little easier.  We started to use a Swaddler during the night and nap time to Velcro down Jayson’s arms to keep him from pulling on his tubes.  This also helped him sleep at night and he started sleeping 8-9 ½ hours at night for four nights!  I felt like I was just starting to get a routine down.  I started thinking I may begin to start some work at home the following week, if things continue to go well. 

Wednesday, March 28, 2012

I was coordinating generous offers from friends and neighbors who wanted to come over and help.  Lauren came over on Wednesday, March 28^th to help us get to the doctor so we didn’t have a repeat of last week.  Jayson woke up that morning sounding a little worse.  He was obstructing again, and that hasn’t happened on the high flow.  I checked all of the machines to ensure they were working.  I tried sucking out some of his boogers with a bulb syringe.  He started fussing and crying a lot, which was really weird for Jayson.  I was glad we were going to the pediatrician because I was beginning to get worried.  Lauren arrived and brought lunch.  She was holding Jayson as I was trying to do some laundry.  Jayson let out five sneezes and out came his feeding tube.  Luckily Lauren was over and could help me get it back in.  He was fussy most of the day and Lauren was trying to hold him, rock him and sing to him.  We got him ready to go to the pediatrician for a weight check, and I was really glad because he had been acting fussy and strange all day.  When we got to the doctor’s office Dr. Templeman checked him out.  Everything looked fine, but the doc even noticed Jayson was whiney and fussy so he was concerned.  He said I was a very good mother and my instincts have proven to be right on every time, so if I was worried then there was probably reason to worry.  He told me to call if I got home and had any questions or problems, and he’d be on call all week and weekend.  We left without answers and got home.  I settled Jayson down and started feeding him and Lauren left to go home to her cute family.  Jayson was still acting strange and was coughing a lot, especially while eating. 

When Mike got home, I was filling him in on the day’s events.  We were just fixing some dinner when Jayson’s whole body went stiff and his arms and legs shot out, his eyes got big, he wasn’t passing any air, and then he’d cough hard like he was choking.  Then he’d finally start breathing again and would pant like crazy with a scared look on his face.  I called Mike over.  He did it about five more times in ten minutes.  Mike and I were all freaked out.  I stood up and put him over my shoulder and started patting his back.  I wondered about suctioning him.  He was congested earlier, and maybe his congestion was keeping him from breathing and causing him to choke.  I sent Mike upstairs for the suctioning equipment.  As he came downstairs, Jayson did it one more time.  I said, “Screw it!  We’re going to the hospital!  I’m tired of playing doctor!”  We packed Jayson up, hooked him up to the pulse oximeter and walked out the door as my sister Tessa showed up.  She jumped back in her car and followed us.  I sat in the backseat with the little guy.  At first he was struggling a little with his breathing, but after a while he was okay again. 

Hospital Visit #3

Mike rushed to Primary Children’s Emergency Department.  They got us right in and started asking questions.  It gets exhausting to tell Jayson’s story these days.  You would think since we’re at Primary Children’s Hospital that I wouldn’t have to retell what has happened at the hospital, but I do.  While I was answering millions of questions, Jayson was just whining and whimpering.  It was so incredibly sad!!!  We eventually got to our examination room and were immediately greeted by the doctor.  She was an amazing doctor!  One of the best that we have seen!  She spent so much time with Jayson, I kept checking her name badge because I kept wondering if she was really a nurse.  She was very thorough and asked some questions, and then asked to be excused to study Jayson’s file and history.  Wow! 

We also had an amazing and muscley Respiratory Therapist!  He could have bench pressed me, easy.  Back to Jayson—the R.T. decided to suction Jayson, even though he sounded okay.  He got a surprising amount out, including a little mucous plug.  He thought it could have been enough to have possibly caused Jayson some respiratory distress.  And then we started the investigation.  Poor little Jayson.  He was starving because we pulled out his feeding tube and he was due for a feeding.  He got poked for a blood sample, but the tech did a bad job so she squeezed him so hard his blood vessel burst, which contaminated his blood sample by escalating his potassium levels.  So, they had to poke him again and do another blood draw.  They had to get a urine sample via catheter to check for a urinary tract infection.  That was the worst!!!  Then they reinserted the feeding tube and finally got him some food running through.  After that, we played the waiting game while they ran his blood samples to test him for viruses, checked his white cell blood count, and checked his CO2 levels. 

It was nearly midnight when the doctor came back and told us the major viruses came back negative, and so did his test for a urinary tract infection.  His blood tests all looked normal.  She said some other virus tests would take 24 hours to come back.  The doctor explained that what she believed happened was Jayson was congested in his upper airway, and then he refluxed and aspirated which caused his episode.  It made sense.  She gave us an option:  we could stay overnight in a special observation room near the E.R. where we would care for him without assistance from a nurse or doctor, or we could go home to watch him ourselves.  She left us so that Mike and I could discuss things.  Mike and I both felt we should just go home.  We had little trust in the doctors here anyway, and we had all of the hospital grade equipment at home to care for him.  The observation room would not accommodate either of us to sleep, so we would just have to sit in a chair all night and watch Jayson.  We could do the same thing at home.  And the doctor’s explanation made sense—congestion and reflux.  We told her of our decision.  She was so sweet and complimentary.  She told me I was one of the most strong, intelligent, caring mothers she had ever seen.  She told me she felt Jayson would receive just as good or possibly better care from me at home, than at the hospital.  But she paused.  The R.T. wheeled in a portable high flow system on an iv pole on the other side of the curtain.  I thought, “I wonder if the R.T. is planning on us staying, so he brought in the iv pole.”   I looked again and the doctor and could see concern in her eyes.  I asked her, “In your personal and professional opinion, do you think he should stay? “  She paused again and said, “As a mother, if I were in this situation, I might lean towards staying, just to be sure.  I just have a feeling that we might need to keep an eye on him.”  That’s all it took.  Finally, someone was showing some genuine compassion and concern!!  I told her I changed my mind and we would like him to stay.  She said she would go prepare our observation room.

It was another hour or so before we saw anyone.  Sure enough, that iv pole with the high flow system was for us.  The R.T. said he hoped we would be staying.  We walked out of the E.R. and into an elevator.  Mike and I looked at each other.  The observation room was on the bottom level near the E.R.  Hmmm… where were we going?  We arrived at the third floor and got wheeled into a private hospital room with a nurse and a tech.  Wow.  We were being admitted.  Why?  It was 2 A.M.  Mike went to get us dinner; we were starving!  I also hadn’t pumped since 2 P.M. that afternoon, so they wheeled me in my own private hospital pump.  Nice!  Private room!  Private bathroom!  Personal pump!  We could get used to this!  But again, why were we even here?  We met the night doctor that night who didn’t say much, and said we’d be meeting with our doctor team in the morning… including our old resident doctor.   Great!  He was our resident doctor last visit, and I hated him.  They had all rotated teams since then, and here he is again on our doctor team.  I really wanted to be a fly on the wall to see his reaction when he sees Jayson is back.  I’m his worst nightmare.

Thursday, March 29, 2012

Mike and I got a couple of hours of sleep before the resident doctor came by in the morning.  “Long time no see!” I said.  He said, “I’ll be honest, I hoped I wouldn’t have to see you or little Jayson again,” with a chuckle.  I bet you did.  He took his time examining Jayson and I suddenly felt comforted at the idea of having him be our doctor.  He knew Jayson well.  He may have not been the man that made things happen, but he sure knows Jayson’s story.  This could be good.  He said, “So the Attending Doctor is Dr. Good.  Given your parenting style, I think you’ll really like him.”  Haha… my parenting style.  What would that be?  Psycho???  I choose to call it “hands-on”, “protective” or “instinctual”. 

The team of doctors came in later that morning and told me they believed Jayson’s episode was caused by refluxing.  That’s what we assumed the previous night.  They suggested two ideas:  giving Jayson Prevacid for his reflux and leave the NG tube, OR giving Jayson Prevacid for his reflux and placing an NJ tube.  I totally forgot about the NJ tube.  My friend’s mom, the NICU nurse, was so certain he needed the NJ tube to begin with.  I asked the doctors why they were still considering leaving the NG tube in place?  They explained it was solely for my convenience.  NJ’s are a pain and keep parents walking on pins and needles.  NJ tubes are placed in the intestines and have to be placed using an X-ray and radiation.  Therefore, if they fall out, the parents have to take the child back to the hospital to have it replaced.  Great.  Jayson had pulled out his NG tube three times in a week!  I told the docs that it seems the NJ is best for Jayson, so that is what we definitely wanted to do.  We could deal with the inconveniences. 

I went downstairs with Jayson to have the NJ tube placed.  I had to hold down my poor little muchkin as the radiology tech and doctor stuck a stiff, long wire down his existing tube.  They guided the tube into his intestines, but it wouldn’t stay.  They had to pull it out two more times, and place the stiff tube down twice more before they determined it was in a good place.  It was crazy to see the x-ray and to see my little one’s insides with a yellow tube in the middle.  I was so anxious to cuddle him.  I tried to erase that memory from his little brain by kissing his head all over.  Sweet, tough baby.

We were told we would stay that day and overnight to see how Jayson would do with the NJ tube.  The team of doctors came back in to tell me news that would break my heart.  Now that the tube was in his intestines, his stomach is no longer getting any food.  His stomach would feel severe hunger pains and would experience cramping over the next week.  His body would get nourishment, but his stomach would feel as if he were starving to death.  I wanted so badly at that moment to switch him places.  I always would have taken his place throughout this whole process, but now I wanted it so badly.  How could a mother watch her little baby suffer such pain over the next few days?  How is it okay for such a sweet, innocent baby to cry and bring up his little legs to his chest in pain?  And how is it all right that there is nothing I can do to help him?  It was a terrible night.  Sure enough, the cramping and starvation started.  The nurses brought him heat packs for his belly, and I spent most of the night rocking him in the chair singing lullabies and whispering it would be all right, even though I knew it wouldn’t.  There is nothing all right about starving your baby.

Friday, March 30, 2012

We met with the doctor team that morning and began packing our things to be discharged.  I received a phone call from the ENT receptionist that morning.  I had called the previous day to see if I could reschedule my ENT appointment for a sooner date, as per doctor order.  She informed me that my request would be impossible since the doctor was going out of town the following week, and was booked the week after that.  However, the ENT Specialist would come see me and Jayson that day to examine him, and see what we should do.  Wow!!!!  This was WONDERFUL news!!   I felt like this hospital visit had a particular purpose—to get Jayson an NJ tube and to see the ENT Specialist.  Although it is painful for him and more difficult for Mike and me to care for, we felt it was for the best.  My mom called a neighbor Vicky and explained Jayson’s situation with his new tube.  Vicky sewed up this adorable little sack with a zipper that allowed enough room for Jayson to freely move his arms and legs, while still restricting his ability to pull the tubes on his face.  She drove it to Salt Lake and Mike picked it up from her.  It was perfect!!  I was already losing my mind watching Jayson 24/7 so he wouldn’t pull out his NG tube (because the LAST thing I wanted to do was put it back in), but now I needed to be even on HIGER alert!  But this little sack would allow me time to go to the bathroom, time to take a shower when he is napping, time to make myself lunch.  Vicky is an angel.
Here is little Jayson sleeping in his sack so his arms can't pull out his tubes.

The ENT Specialist did not come by until after five, but I was so relieved when he arrived.  I showed him the video I took of Jayson’s breathing.  I informed him Jayson had been hospitalized three times in a month.  I explained one admit was due to RSV, but the second was due to his apnea episode, although he still tested positive for RSV.  I explained he had noisy breathing since birth and that the Pulmonologist Specialist said it is certainly Laryngomalasia.  The doctor examined Jayson and explained he would be out of town the next week… he paused… then said the most amazing words, “But I feel that we should bypass his appointment we have scheduled and get him scheduled for surgery the day I get back.”  Miracle.  Nothing short of a miracle.  Then he left.  I never expected that to happen.  I know it’s unnatural for a mother to be excited about her young baby to go into surgery, but I was.  It was what needed to happen to make my baby well.  We were so blessed.

After Hospital Visit #3

Monday, April 2, 2012

The next couple of days were long and terrible.  Terrible and long.  Jayson was in a lot of pain.  His tummy hurt and his face was red from screaming.  He squirmed even when he was asleep.  My stomach ached too.  I was constantly nauseas over the next week watching my poor baby scream in pain, knowing I only had heat packs and lullabies to calm my little guy.  And then one night, I made a huge mistake.  I was the cause of that pain.  I would do anything to change that night.  I somehow prepared Jayson’s feeding bag and primed it, but did not press run.  In fact, somehow I pushed the power button and turned his feeding machine off so it was unable to even beep and remind me to start it.  My poor starving boy literally starved for 5 hours.  I always set my alarm for every two hours to check on him.  I woke up in the middle of the morning and checked him and the machine.  Somehow I was too tired to know it wasn’t running.  All looked well, and I went back to sleep.  I woke up again a couple of hours later and performed the same check.  How did I miss that?? His machine wasn’t even on.  Jayson didn’t seem to mind at the time.  I hurried and emptied the bag since the milk had sat too long and prepared some more milk.  I started his feed and began crying, thinking about how I starved my baby who was already feeling as if he was starving.  I hoped I could somehow increase his feeding levels throughout the day to even it out.  I planned to call the nurse and find out.  Then, I suddenly realized that Jayson’s sleep study was later that night and they said they wanted to remove the feeding tube for his sleep study.  Oh no.  Either he would starve again the following night, or they would cancel the sleep study.  I didn’t want either to happen!  I completely broke down into tears.  How could I be such a horrible mother???  How could I make that type of mistake???  Who the HECK decided I was qualified to be Jayson’s doctor, nurse, and caretaker???  It took a MIRACLE to schedule the sleep study so quickly.  There is a huge waiting list.  I didn’t want them to cancel it; it was going to give us such good information.  But there was no way I could starve my baby for two nights in a row.  What would I do???

Tuesday, April 3, 2012

I literally did not get out of bed that day.  I was so depressed.  When Jayson woke, he began showing more signs of pain and discomfort than usual.  I knew that I did that to him.   I was a bad mom.  When I could pull myself together long enough to stop crying, I began calling nurses.  I called my friend’s mom, the NICU nurse.  I called the home health care nurse.  I called the sleep study nurse and left a message.  I did not begin receiving answers until later that afternoon.  Jayson would be okay.  He didn’t need his blood sugar levels checked.  He couldn’t receive higher dosages of feedings to make up for what he lost.  Finally I received a phone call back from the Sleep Study nurse.  She said we can still plan on doing the sleep study. I explained the situation and how Jayson is already behind on weight and feeling a lot of discomfort due to my mistake, but I really wanted this study done.  She said they were booked for the next couple of weeks.  She said she would call a doctor and see what he recommends.  Miraculously, she called our Pulmonology Specialist.  The man is a saint.  He said he knew Jayson and he was a special case.  He advised going against protocol and allowing Jayson to keep his feeding tube in, and ALSO said he wanted Jayson to receive high-flow oxygen the last two hours of the sleep study.  I felt a HUGE weight being lifted from me.  Wow.  My Heavenly Father truly answers prayers.  I was already feeling so nervous about having Jayson off of high flow that long, and now both concerns have been addressed.  It was a miracle.

The day of the sleep study Jayson just cried and cried.  I knew it was my fault.  He had so much stomach cramping and I felt terrible all day.  My happy little guy just screamed and screamed in the waiting room.  I was the crazy mom singing the same lullaby over and over again loud enough to be heard over his screams trying to calm him down.  It didn’t work.  Once we got him in his small room, he calmed down momentarily as they used Q-tips to put adhesive and glue all over his body so the sensors and leeds would adhere.  His head was covered with 20 or more sensors.  His chest had two belts made of sensors, and his cannula even had a sensor and microphone.  He seriously looked like a zombie. 

I could only imagine how uncomfortable he must have felt!!  But surprisingly, he went to sleep!  He slept for a couple of hours at a time, while I did not sleep at all.  How could I when I could hear him working to breathe in every breath??  I heard so many noises I had never heard before.  He snored louder than an old man.  He had a couple of noises he’d make when he’d inhale and a couple of more when he’d exhale.  I could tell things were getting worse.  I don’t hear all of these sounds because he is on the high flow at home!  He cried a couple of times, so I would rock him back to sleep.  The nurse came in a little before 4:00 AM to prepare him to go back on the high flow.  She told me that we were getting good information.  She set the high flow up and as soon as she placed the cannula in his nose, Jayson let out a vocal sigh of relief.  It was so sad and adorable at the same time.  My poor little man was working so hard to breathe, and was so relieved when he got placed back onto his high flow.  I talked with the nurse until nearly 5:00 AM when I decided to try and get some sleep.  I slept from 5:10-5:45 AM, when she came in to start disconnecting Jayson’s wires.  He was covered in glue and adhesive from head to toe, LITERALLY!  They didn’t wash it off.  He smelled like all sorts of chemicals!  I couldn’t wait to get my little man home and in a bath!  I talked with my mom on the phone until I got home, to help me stay awake.  I got Jayson all bathed and we took a little nap.  Jayson on one couch, and me on the other.

Thursday, April 5, 2012

Today was the day of Jayson’s Swallow Study.  It was just a week ago that Jayson got his NJ tube placed.  I doubt that he would make so much progress in a week that he would be ready to have to tube removed, so I was prepared to hear that he would fail.  Mike and I got Jayson all loaded up and headed to Primary Children’s to the radiology department.  The room was full of nurses, techs, and residents and they were all incredibly nice!  They seemed informed and I could tell they had read Jayson’s history.  They played with him and talked with him.  He was seated in a slightly reclined chair and they said he would first be fed nectar, a thick liquid, to see if he would aspirate.  If he aspirates a thick liquid, then he definitely will with a thin liquid.  The technology was amazing!  I could see my little guy swallowing!  I felt so grateful at that moment for such amazing technology.  I have thought many times throughout this process that my son would be dead without it.  Jayson was slow to swallow.  He hadn’t had a bottle in weeks now.  He finally made a couple of gulps and the liquid collected in the back of his throat.  Finally, some of the thick liquid began trickling to his stomach.  The nurses, techs and residents all began to cheer him on!  The liquid consistently pooled at his epiglottis, and would haphazardly end up in his stomach.  Unfortunately, some of it pooled into his lungs.  They stopped the feeding right away and shut down the equipment.  It was done.  He’s still aspirating.  I couldn’t help but feel disappointed, even though I expected him to fail.  Sigh… More time with the feeding tube.

Once we got home, Mike and I started talking about the surgery.  We were excited, nervous and anxious.  We decided we wanted to hold Jayson’s baby blessing before his surgery.  We wanted him to have his name and a special blessing, but we would have to hold it in our home.  We discussed inviting our families.  We really wanted our families to be there.  But, we discussed the possibility of exposing Jayson to germs and to an illness on Sunday.  He would start showing symptoms by Tuesday and the doctor would not operate if he was ill.  We started feeling really scared.  Mike and I put masks on and vowed we would keep them on day and night until the surgery.  We did not decide exactly what we would do with the baby blessing, but prayed about it together that night.  We both went to bed feeling that we should hold the blessing in our home with just the two of us and the bishop to avoid exposing Jayson to illness.  It may have been selfish, but I wanted to be normal for just one day.  I wanted to celebrate my baby with those I love.  I wanted to throw a fabulous party.  I wanted to feel the love and support of those close to me.  I wanted to be happy, and I felt guilty for thinking of putting my wants and desires above the life and well being of my son.  So I cried myself to sleep.

Friday, April 6, 2012

The next morning I hoped I would wake up with a solid answer.  Nothing.  I still swayed back and forth.  One minute it felt right to hold the blessing with just Mike and myself.  The next minute it felt right to have our families come and wear masks.  I prayed to have a solid answer.  I called a friend to ask her opinion.  It didn’t seem to help.  Just then, our neighbor Michelle brought Jayson’s blessing outfit to us.  She exchanged it for a bigger size.  As she arrived, we noticed an envelope on our porch.  After she left, we opened it up.  It had a large amount of money in it with a note, “Just Because: for the Baby Blessing and Easter”.  I was moved to tears.  Nobody really knew about our baby blessing, since we hadn’t even decided if we would invite anyone to it.  Mike and I talked, and decided that this may have been an answer to our prayers.  We were going to hold the blessing and invite some of our close family members for a small celebration.  I instantly felt complete happiness and excitement!!!  I really really wanted to celebrate my little boy!  Mike and I set some rules:  family could only come for a couple of hours, they all would need to wear masks the entire time they are in our home with Jayson, and no one could touch the baby.  We called our families and told them we were going to hold the party and to spell out the rules.  We told them we wanted them to come, but understood if they didn’t find the trip worth it if they had to wear masks and couldn’t touch the baby.  Our families were very supportive and I began planning a party!!  I spent the next two days working around the clock preparing for the baby blessing and our Little Guy in a Tie party.

My Worst Nightmare

So far, our story is a trilogy of three hospital stays. Here is the diary of the second:

Round Two. I never imagined this would ever happen. It’s hard enough to live a nightmare, to have your worst dreams come true. It’s even more terrible to relive your nightmare. In some ways, going through a terrible experience for the second time lowers your anxiety because you know what to expect. On the other hand, sometimes it elevates your anxiety, because you know what to expect. I don’t know that I’ve ever had the feeling I felt on Sunday… Sick. So sick thinking about what my son was about to go through again. I was willing to do anything to prevent it. I wanted it to be a dream, so badly. I prayed that it wasn’t happening, but knew that my prayers couldn’t change the present, but could only comfort me in the moment and in the future. And I don’t know that I can put into words the feeling of not only reliving the most awful experience of your life, but knowing it was worse this time. I knew there would probably be nothing worse. Interesting feeling… hitting rock bottom. Knowing that very few people have felt the way you felt and experienced what you experienced. Not many people could understand how we were feeling, nor would they like to even imagine.

It’s difficult. I really want to put my feelings on paper and document what happened, but the pain I feel thinking about what happened is intense. I can’t get it out of my mind. It replays day and night, over and over. It takes my breath away in the replays nearly as much as it did in real life. No one should ever have to experience that level of fear. It’s unfair. It’s inhumane. It’s life-changing.

Sunday, March 11, 2012- Monday, March 12, 2012

Jayson became very congested again Sunday morning. He had massive amounts of mucous in his nose and mouth, and was having a difficult time breathing, sleeping, and eating. Oh no. We already did this. There’s no way. All of these were thoughts I had that morning. We went to church to teach a lesson, and I kept him covered. In my heart, I knew this was bad. I knew this was coming. We visited Insta Care that evening. Sure enough, bad news. Jayson had another virus, possibly the same virus, again. The doctor was hopeful we could keep him out of the hospital if we had daily doctor visits and came to the hospital several times a day for suctioning. We were determined we could stay on top of it this time; this illness would not consume our son under our watch! We went home and I got Jayson ready for bed and connected to his oxygen. We increased his levels for the night, just to be on the safe side. A strong feeling came over me and told me things were about to get bad. I felt a strong feeling of comfort and I knew that we would end up in the hospital again sometime that week. We got into bed. Jayson was progressively getting worse and his congestion was interfering with his breathing much more than before. Mike was asleep and I lay awake watching my son take every forced breath. He began gasping for air, which was common with his RSV. It got worse. I got out my phone and began timing it. Twenty seconds. Thirty seconds. Gasping for air for thirty-five seconds. This was bad. I woke Mike up and made him sit with me and watch every breath. Every couple of minutes, Jayson would gasp for twenty to thirty seconds. We decided it was time to go back to the hospital. Just as we began to get out of bed, Jayson’s body went completely limp and relaxed. His eyes were completely closed and he was not passing any air. No gasps. No breaths. Nothing. I screamed, “Michael!!!!!” I shook his little arm. Mike shook his legs. I harshly patted his back. I turned him over. I flipped him from side to side. I slapped his cheeks while tears were streaming down mine. I was screaming, “Jayson! Jayson!” Nothing. No response. I yelled, “Michael! Call 911!” Seconds were flying by with no signs of movement. I got an operator on the phone and I could hardly speak. I just yelled. Help! I just wanted help! I focused on the phone call for a moment while Michael continued to try to get the baby to breathe. It was so hard to remember my address. How do I spell Valerian Circle? How the hell should I know! My child is dying! They told me to get him on the ground and clear his airways. Minutes had gone by. I was preparing for CPR. Why couldn’t I remember the youtube video I watched about CPR? I listened for any air movement. Nothing. Just as I prepped to begin pushing on my little boy’s chest, he took a couple of shallow breaths. My heart leapt in my chest as I thought he might be okay. He stopped breathing again. I moved him side to side. Slapped his little cheeks, tilted his head back again to prepare CPR and he began to whine. Finally I heard the most beautiful sound I had ever heard in my life—his soft cry. My baby cried. And so did I. So hard. Tears of sadness, fear, gratitude and celebration. My son was breathing! The operator on the phone stayed with me until paramedics arrived. They were fast, five minutes maybe. But somehow five minutes felt like forever. They assessed my little guy as he sat there crying and crying. I just watched him kicking and clenching his fists thinking he was my little miracle. The paramedic team assessed him and put him on their oxygen. My little man once again got loaded into the ambulance, but this time in the fire engine.

Primary Children’s

We arrived at Primary Children’s and it all seemed like déjà vu. Arriving by fire truck was not less frightening than by helicopter. Jayson got assessed in the emergency room, and we got buckets of bad news. RSV positive. Again. CO2 levels in his blood were high (62- normal is less than 48). He needed an IV. He was staying for a while. He was going to PICU. After several blood draws and blood curdling screams from my little one, my stomach had enough. I spent the rest of the early morning heaving in the bathroom, hoping I could throw up the terrible memories of shaking my lifeless baby from side to side. No matter how I tried, some memories are impossible to purge.

When the dizziness subsided enough that I could pick myself up off of the bathroom floor, I reentered the Emergency room to see they were prepping my baby for an iv. Last time, it took three or four sticks to get the iv in, and they wouldn’t let me near him to comfort him. However, I felt my presence gave them a sense of urgency to get it right the first time. I didn’t want to leave my son to get an iv without me for that reason, but I knew if I didn’t leave this time, I would end up in a bed next to him after passing out. I waited in the waiting room and a nurse brought me some crackers and apple juice to calm my stomach.

I was soon told that the iv was in and my son was receiving fluids. I entered the room again to find him on high flow oxygen and on an iv. The nurse said he needed to be pricked again to have his blood gases checked now that he was on the high flow. His gases came back lower at 52, so we were ready to get to the PICU. The good thing about going through this a second time was that I knew what to expect. The bad thing was also that I knew what to expect. I hated the PICU. Screaming children in pain and beeping monitors would be enough to make me ill all over again. Fortunately, there were not many admits in the PICU that day. It was much quieter. I knew this was more or less a waiting game. Jayson was really sick, but there wasn’t anything he really needed from PICU, just the high flow. After they could wean the high flow from 7 liters to 4, I knew we would be back on the floor. We were asked to leave the PICU from 7:00-8:00 AM while they had their shift change, and Mike and I ate some breakfast. Shortly after, Mike left to go back home to get me a suitcase of clothes and things, and to take care of Maya.

There is not any privacy in the PICU. It reminds me of many ER’s with just curtains separating patients. I sat down in the rocking recliner and I picked up my son’s fragile little body and cradled it in my arms. I had suddenly come to the quick realization that I had not slept in over 54 hours. I reclined my chair back until it hit the curtain behind me, and cuddling my sickly sleeping baby in my arms, I started drifting off to sleep. Just before closing my eyes, I noticed the family on the other side of the curtain was doing the exact same thing. I overheard their conversation--- baby with RSV, life flighted from Vernal, so dehydrated they couldn’t get an iv in, and had to somehow put it in the baby’s shin bone. Sad. But I felt comforted seeing them rocking their little one in their arms just the way I was rocking mine.

I woke up in a daze. I had a difficult time deciphering whether I was awake or still asleep. I heard many loud noises and heard a calm voice over the intercom system announcing a Code Blue in PICU. Right next door. I looked over my shoulder to the rocker chair near mine to find it empty and the parents standing near the back wall, holding each other and crying. People came running, in all directions. The doctors whose voices comforted me were now yelling for machines and medicines. Lights were no longer dimmed and chaos filled the PICU. Machines were wheeled in with a hurry. Random medicines with long names were injected into this little baby. I looked around, and other families of patients looked just as I did. We all held our little ones tighter for those few moments. I couldn’t hold back the tears. My sobs were not enough to wake my sleeping babe, and I said a prayer out loud. I remembered something that a nurse told me the last time I was in PICU—angels walk these halls. I asked Jayson, “Where are the angels Jayson? We need the angels. Call the angels little Jayson.” My little one woke up and stared up at the ceiling with such focus. I knew the angels were present. Voices started getting softer and calmer next door, and my grip on my own son began to loosen. Machines began to wheel away, and the parents approached their son. Just then, the monitors went off again and the little one flat lined again. Everyone was called back and I rocked Jayson back and forth and said another loud prayer. Unfortunately, this happened another two times before we were able to leave the PICU. Mike finally arrived back at the hospital, concerned about all of the chaos so near to our bed. I informed him of what was happening when the Primary Children’s Family Relations Coordinator again paid us a visit. She informed the nursing staff we were “red-flagged” and insisted we were removed from this traumatic environment right away. Suddenly a room became available upstairs and we were quickly rolled away. I peeked over the curtain to ask the boy’s name. I told the parents there would be many prayers said on Braxton’s behalf. My heart hurt for them.

Things were pretty calm in our hospital room. We again had the half of the room with the window and the bathroom. Everything seemed the same. But this wall I would be staring at for days was lavender, instead of pink. Things were pretty much the same as before. Frequent nurse visits, frequent suctioning, weans on his oxygen a couple of times a day. Mike and I just placed in our Boy Meets World videos, and made ourselves comfortable. The doctor team came by and didn’t tell us anything we didn’t know. They said they would be sure to wean Jayson carefully, because they had read about what happened before. They also said they would have full control over the weans, and respiratory therapy would not be able to wean his oxygen. We thought this visit might be different. Maybe I wouldn’t have to fight to keep my son safe, comfortable and alive this time. Maybe.

Tuesday, March 13, 2012

Tuesday Mike went to work and we spent the day slowly weaning Jayson’s oxygen. I refused to have it weaned overnight when I would be unable to keep a close watch on him. He needed semi-frequent suctioning, but did not show many signs of struggling for breath. He seemed comfortable, which made me feel comfortable.

Wednesday, March 14, 2012

Wednesday the doctor team came for a visit in the early morning. This was a new doctor team than before, and I hoped I would like them just as much. Jayson’s oxygen was weaned to 3.5 liters on high flow. The attending doctor wanted to switch him to a smaller cannula, but leave him at 3.5 liters. I didn’t know that was an option! Typically high flow oxygen requires a larger cannula. I gave her my consent wondering how a smaller cannula might work with the high flow. Suddenly, the respiratory therapy team came in disconnected him from the high flow equipment and told me they were “getting it out of the way so we had more room” and slid it aside. Lies. I said, “But wait! He still needs the high flow. The doctor said we were just switching to a smaller cannula.” The therapist said, “You can’t use a smaller cannula with the high flow oxygen.” The doctor team knew I would oppose a quick wean from high flow to regular oxygen based on what happened before. So they told me they were just going to use a smaller cannula. Again, they weaned him incredibly fast and against their protocol. He should go in half steps from 3.5 to 2.0 before switching to regular oxgen. I hated the doctors. I hated them for risking my son’s health. I hated them for bringing back these feelings I had before. I hated them for betraying my trust. I was done. Done with doctors. Done with trusting. Done with sleeping. Done with leaving my son’s side, once again.

I just sat in anger throughout the rest of the day. Jayson started doing his gasps periodically, struggling to breathe. When I had a chance to sit and think calmly, I came up with some concerns. On high flow, the docs can adjust the oxygen. Jayson only needed 24% oxygen. Now he was getting 100% oxygen. Is that harmful? I also remembered that at Riverton when he was getting high levels of oxygen and struggling to breathe, he retained a lot of CO2 in his system. I wanted his blood gases tested again. I did some research online and my concerns were backed by research studies. I asked to talk with the night doctor. He made me feel stupid. He dismissed my questions and research so easily. “Only premature babies are at risk of oxygen poisoning. A couple of days on 3 liters 100% won’t hurt him. No, there is no evidence that his body is holding in CO2.” I again felt sick to my stomach and wished my concerns would be heard. A kind nurse who heard my concerns turned Jayson’s oxygen to just wall air which is 21% oxygen at 3 liters. I woke up a lot of that night as I heard my baby gasp for air. He was not getting better.

Mike had to leave after tonight to go to Zion's National Park. He only needed two credits to graduate and instead of taking an academic class, he decided to take a hiking class to Zions. Unfortunately, it landed right in the middle of Jayson's hospital stay. I was going to have to get through this alone.

Thursday, March 15, 2012

Thursday was Jayson’s three month birthday! He spent his two month birthday in the hospital, and again his three month birthday!

I talked with the team on Thursday morning about my concerns I asked the night doctor. I then told them that Jayson was gasping for air again, just like he did the night he stopped breathing. The doctor team told me I should be assured by the fact that his oxygen saturation levels only dipped once that night. Even though he would stop breathing for short periods, he was retaining oxygen. That didn’t make me feel better. I reminded them that my son did these gasps for air right before he stopped breathing completely. The doctor informed me that ALL babies stop breathing, and that the important thing was that Jayson started breathing again on his own. That should bring me comfort. It didn’t.

Luckily, I spent the day with one of my favorite nurses. She weaned Jayson’s oxygen throughout the day. He was doing really well statistically, but anytime he took a nap, he would gasp for air. He was doing it less periodically, and more consistently. Any nurse or technician was able to walk in any time he was sleeping and see him do it. They said he was definitely obstructing, and it was concerning. The doctors popped in at some point and even saw him obstructing. They called the Ear Nose and Throat doctors, and convinced them to come by, even though they typically don’t come by to examine RSV patients. Miraculously, they came by and agreed to do a scope. The ENT doctors had no interest in listening to me and what I had observed. They did their scope quickly, which was very difficult to watch. Jayson was so upset, and I’m certain he was in pain. ENT said they didn’t see anything obvious. They said he was swollen much like a RSV patient would be, and that his cheek bones were more concave which puts pressure on his nasal passages. They said his vocal chords were especially swollen. They said he would probably need to be scoped again once he recovered from RSV, and they were on their way. Sigh. Still no answers.

I did not sleep much that night. I held my baby while he frequently struggled for breaths as he slept. He would gasp for up to 45 seconds at a time, and his oxygen levels would only go down to 94%. One concerned nurse listened with her stethoscope to hear if any air was passing through. None. Nothing. I took a video to show the doctors in the morning. They needed to be reminded that Jayson was not in the hospital for RSV, but because he stopped breathing.

Here is the video I took of Jayson. During part of this video, you can see his forced, noisy breathing. You can hear and see the obstruction. During other parts of this video, you will see him trying to move air and there isn't any air passing through for quite a few seconds. His body is moving up and down on its own trying to move air, and his head is tilted back because it's supposed to help open his airway.

Friday, March 16, 2012

Friday morning I showed the doctor team my video. They claimed it helped them to see what he was doing. They had seen him obstruct, but he was still passing air. I informed them of what the nurse had observed, that there was not any air passing through he was completely obstructing. The team again reminded me that his saturation levels were good, and that alone should comfort me. They felt he should be ready to go home soon. I told them I would never sleep! They told me they would consider sending me home with a monitor, even though it would go off like crazy. I said that might give me a little peace of mind, but my son would still stop breathing for up to 45 seconds and the monitor wouldn’t go off. How long would he have to stop breathing before it would alarm me??? They informed me that his oxygen levels should drop low enough to alarm me after 20 seconds. It didn’t. They told me that Jayson would be monitored on .5 liters of oxygen for the next 24 hours, and if he was doing well, he would go home the following day on .5 liters of oxygen. They said they would give the Pulmonary Specialist a call and see if he had any recommendations; but again, he doesn’t like dealing with RSV patients. I was informed later that the Pulmonary Specialist would like his CO2 levels tested again through a blood gas test, and that he would like to have a swallow test done to rule some other things out. Finally. I had wanted his blood gases tested for days, and no one would listen.

I got Jayson to sleep a little after midnight, which was a difficult task. He was so uncomfortable trying to breathe at this point that he wouldn’t sleep. I stayed up rocking him until 2:30 in the morning. They were able to come in at that point and draw his blood and I went to sleep… for a couple of hours.

Saturday, March 17, 2012

I woke up early Saturday morning, eager to learn of the test results. I saw the resident doctor, who told me his gases were high at 56. I thought two things: Thank goodness, they’ll put him back on high flow. Crap, we may go back to PICU. I was wrong on both accounts. I asked him what he thought we should do. He said, “Nothing, really. They’re high, but not too high. They were higher when he was admitted. They’ll probably lower over time, once you guys get home this afternoon.” I asked, “What about the other test the Pulmonary Specialist wants done?” He said, “I don’t think it’s too important. It’s more to rule something out. If you really want to, you can do it as outpatient.” If looks could kill, he would have been dead. I said, “You do a test to see if his blood gases are high, and they’re high. And you want to send us home? My son is struggling with every breath and you want to send us home?” He just replied with, “Yep.” Wow. I walked away before I junk punched him.

I fed my baby and looked up blood gases on my ipad. They were high enough to be concerned. I started feeding Jayson and he started gasping for air while eating. This was the first time he had done it while being awake! I took his food away for a few minutes and he was still struggling to breathe while wide awake. Just then, the team of doctors walked in. The attending doc said, “So it looks like Jayson had another good night. His oxygen levels are looking good on .5 liters of oxygen, so we can send you home on .5 liters. His CO2 levels were a little high, so we’re going to have you follow up with your pediatrician once you get home and we’ll have you do the swallow test as outpatient. And you can follow up with ENT in a couple of weeks to see about the obstructive breathing. We’ll send you home with a monitor for now. We’re feeling pretty good right now.” I just stared at them. A good few seconds went by and I took a deep breath. Finally, I opened my mouth. First I let out a chuckle. “So you feel good about sending Jayson home today?” “Yes, yes we do.” “Really? My son is still struggling to breathe. He’s now even obstructing while awake! While eating! My son is doing much better with the RSV. It’s true. But he is not here because of RSV. He is here because he stopped breathing in my arms. And now, he is worse! He is much worse than he was on Sunday when he was admitted! He wasn’t gasping for air every minute of the day on Sunday. I’ve wondered if I’m just being an overprotective first time mother, but I’m not. Last time we were here, only one of the doctors was able to catch a glimpse of Jayson’s obstructive breathing. At the beginning of the week, no one had any idea what I was talking about. Now, you can ask any doctor and any nurse at any given time to come in, and you can see it. All of the nurses have seen it for extended periods of time. And they’re all concerned!! I hate to get all psycho on you, but if you plan to send my son home today, I hope you’re prepared to be held legally liable for whatever happens to him. We will be back, and I hope for your sakes that he’s not even worse off than he is right now!” They seemed surprised. The attending doc seemed to digest some of it. I’m not sure if it was the statement that Jayson was worse now than he was in PICU that got her, or the threat of a lawsuit, but she stopped and thought for a minute. She said she would call the Pulmonary Specialist to see if he would talk with her and give her any reason to keep him, and see about doing the Swallow Test today. Then they walked out the door.

I felt so alone. I needed help. I needed Mike, and he was in Zions for the final 2 credit class he needed to graduate. I needed my mom, and she was two hours away. I needed my nurse friends who would back me up, but I had nobody. Just me. I called the Family Relations Coordinator and she didn’t work on the weekends. I called my friend’s mother-in-law who is a nurse and she didn’t answer. I called Laura, my mom’s best friend and she didn’t have a lot to say. Finally, my friend’s mother-in-law called me back. She told me I had every reason to fight, and that I should. She said I did good threatening the lawsuit. I prayed hard. I called family and asked them to pray for a reason to keep us. I knew we weren’t supposed to go home yet.

My nurse came in and told me that we were going to do the Swallow Test and I could come with him. Just as we were about to leave the room, a new doctor came in. He was the Pulmonary Specialist. I had to leave Jayson on his own so I could visit with the doctor. He was the very answer to my prayers. I don’t know that a prayer of mine had ever been answered so clearly. He was the first doctor to sit down, make himself comfortable and talk with me. He listened. He wrote things down. He nodded his head. He asked a lot of questions and he gave credit to my answers and observations. I mentioned I had videos of Jayson trying to breathe. I showed them to him. He took me to the computer and showed me Jayson’s x-rays from February and March. He showed me his blood gases and what the numbers meant. He showed me other tests that had been done and why. Jayson was wheeled in after about 40 minutes. He examined Jayson briefly and told me with confidence, “Jayson has what is called Laryngamalacia. It’s an obstructive airway, a floppy airway. He has flaps that open and close when he breaths, and his overlap in a way and down open all of the way back up. Due to apneatic episodes, they sometimes lock down and don’t let any air through.” He drew diagrams on the board. He showed me things using his hands to demonstrate. Everything for a moment in time made perfect sense. I felt the spirit so strong and felt like I let out the biggest sigh of relief, and as I did all of the stress, fear, sorrow, and concern left my body. I knew Jayson was going to be okay. We finally knew what was wrong, thanks to this man. I asked him what needed to be done at the hospital to help Jayson. He said he needed to stay another 24-48 hours to be observed and get Jayson back on high flow. He needed to be on at least 2-3 liters to keep his airway open. He said he needed to be on high flow at home as well. Jayson needed another blood gas test, and his CO2 levels needed to be below 46. I felt so relieved and validated. I was a good mom, and I did the right thing fighting for my boy.

Then we got more news. Jayson failed his Swallow Test. What does this mean? I didn’t even know what it was. The nurse said he failed on thick and thin liquids. The doctor explained Jayson has been getting liquids in his lungs because his airway wasn’t closing off when he ate. He was also refluxing, and that liquid was again going into his lungs. They called it silent reflux, since he wasn’t showing any signs of it. Wow. That explained why he wasn’t gaining weight, and even more why he was having a hard time. The nurse said he would need an NJ feeding tube, into his intestines. Terrible. But it’s what my son needed. Jayson had not eaten for many hours and I hadn’t seen the team of doctors, which made me nervous. There’s no way they would try and fight what the Pulmonary Specialist said, would they? They finally came in and told me that Jayson would be going back on high flow, but they were trying to avoid having to go back down to PICU to do it. That was taking some time. They said they were going to get him set up with a NG tube in his stomach. I asked about the NJ tube the nurse said was recommended. The docs mentioned the NG was easier to deal with at home. Again, we’re talking about going home.

The nurse came in with the tube materials and prepared to teach me. She said I needed to be trained in how to place them, because they often come out. Are you kidding me?? Jayson squirmed and screamed as the nurse placed the tube and she tried to explain to me what to do. I could hardly handle the screaming, but I was trying to focus on what she was telling me. Just then, the attending doctor came in and needed to talk with me. Well, the baby was screaming and in pain, and I was trying to help the nurse tape on the tube. The doctor kept talking and even moved and squatted down so “I could focus on her and what she was saying”. She kept calling my name and asking me to focus. I could not even believe her. I don’t remember much about what she said. Something about high flow. No PICU. 1 Liter. And going home tomorrow. I’ve never wanted to punch anyone more than I did her at that moment.

Just as I finally broke down in tears, our home teacher and good friend Anthony Faulker and his wife walked in. I needed him so badly. I needed a man to help me fight. The respiratory therapist came in to hook Jayson back up to high flow. We bombarded him with questions, and he was so kind and patient. He answered many of our questions, and ultimately told us there were some things he couldn’t tell us because the hospital was owned by an Insurance company which paid his salary. It just so happens that it’s my insurance company. He also eluded that the insurance company doesn’t like us to stay too long, because they usually end up paying for it, and so that’s why the doctors are pushing us out the door. We were about to pass up that secret number of days. We felt that pressure the first time he was hospitalized by the other doctors at around six days, but they backed down without me fighting against them because they could tell that Jayson just wasn’t ready. These doctors weren’t so observant or understanding. I told the respiratory therapist that the doctor mentioned something about us going home tomorrow and he was surprised. He said he’d suggest waiting at least 48 hours, but he can’t argue with the doctors. Our nurse had overheard this entire conversation and she asked if we’d like to ask these tough questions to the doctors. She said she was interested in hearing the answers to these questions as well.

The attending doctor came in with her guard down. She was apologetic and back-pedaled a lot. She said she must have been mistaken if she said he would be going home tomorrow. She wanted to give him all the time he needed. Lie. I told her that I wanted Jayson on at least 2 liters on high flow, because that’s what the Pulmonary Specialist said. I told her I understood what she was doing, and that she didn’t want Jayson to end back in PICU because that costs the hospital more money, so to avoid it she had to start him on 1 liter. She seemed surprised I figured it out. She stuttered and said, “Oh, oh, you know what happened? I forgot to tell you, but it was all miscommunication. The Pulmonary Specialist told me that he wanted Jayson to start out on 1 Liter and to work his way up if he needed it. See, he told us two different things. No problem. If you feel more comfortable with him on 2 liters, we’ll do that.” Lie. It was at that point I said, “Well Doctor, the thing is that the Pulmonary Specialist came in and sat and listened to me. He examined my son. He explained all of the x-rays, blood tests, and all the other things you guys have done to him at this hospital. No one else has. He validated my concerns, and he gave my son a diagnosis. He explained it to me and drew me diagrams so that I would understand. He was real and listened and he was honest with me. That man is a good doctor. I have trust issues with you. You’ve lied to me many times and your team has rarely examined my son. When it comes to believing a doctor, I’m going to trust the Pulmonary Specialist and he told me my son should be on 2-3 liters on high flow while at the hospital and then at home.” She told me okay, smiled, asked if we have any more questions, then said she’d see us in the morning.

Wow. I almost collapsed from exhaustion at that moment. I had fought many battles for my son that day, and we were victorious. It was at that moment that I felt the heavy, heavy burden that I had felt for months leave my body. That was it. I had fought the fight I needed to fight. We had found out what was wrong with my sweet boy. I knew that was it; there were no more problems. The spirit confirmed to me that Jayson was finally in good hands and all was going to be well. I felt fresh, renewed, and at peace. Finally.

Mike finally walked in the door! I was so excited, relieved and mad at the same time. I missed him, and I needed him. But I was so mad he was gone and left me to fight this battle all on my own. He seemed so concerned and upset, both about me and Jayson. It was nice spending the rest of the evening as a family.

Mike and I decided to get some dinner and take a moment away from the hospital room now that things were under control. As we came back upstairs, we saw the nurse was in the room with Jayson. Jayson’s left side of his face was huge, cherry red, and swollen. His eye was nearly swollen shut. I asked what happened. Apparently, in the short period of time that we were gone to dinner, Jayson woke up and pulled the tape off of his face and attempted to pull the feeding tube out. It was obvious he was allergic to the tape, and the action of quickly pulling it off caused great irritation. I asked what we could do about it, and she said she put some cream on it and contacted the wound team, but they couldn’t come in until the following day. His face was super hot from the irritation and he was starting to fuss. We got some ice and put it on his cheek which helped with the redness and swelling. Jayson kept reaching towards his face, which told us he was in pain.

Sunday, March 18, 2012

We needed to check Jayson’s blood gas levels that night to see if the high flow was doing its job. He had a hard time getting to sleep and staying asleep again do to the continuous feed and his sore cheek. I held and rocked him from 1:00-3:00 AM until he could get his blood gases checked. He seemed super uncomfortable with the feeding tube. He was super wiggly and fidgety, and I had to hold him and rock him to keep him asleep. Surprisingly, he slept through the test and didn’t even wake up when he was pricked. I went to bed at 4:00 AM and got a couple of hours of sleep. The next morning, the nurse told me his CO2 levels were at 46. Just what we needed to go home. The team of doctors came by and this time asked how I was feeling about things. I said it seemed like Jayson was doing much better on the high flow, but he had a rough night. He finally wasn’t gasping for air the entire night! But, he was struggling to adjust to the feeding tube and couldn’t get comfortable. I wanted one more night at the hospital to see if he could calm down and get a good night’s sleep before I would feel comfortable taking him home. I also needed to learn a lot more about the feeding tube and high flow at home. They conceded and said it would be fine if we stayed one more day.

The wound team came that morning and looked at Jayson’s cheek. It was a lot better than the previous night, but was still very red and irritated. It had even broken out into bumps and a rash. The wound team used a different tape on his cheek which is more hypoallergenic. It seemed to work better.

Monday, March 19, 2012

Jayson slept like a champ that night. I didn’t. I stayed up until 4:00 AM again watching him breathe, making sure he was in great shape if we were to go home. I knew it was time for us to go home. I think the team of doctors was more excited to hear that than we were to say it. We prepped for discharge and it was chaotic. Finally we got loaded up in the car and headed for home! I was so happy to be going home to our cute puppy and to cuddle my baby on my very own couch. Especially knowing he would be okay hooked up to all of the equipment he needed. I was told to hurry home because IHC Home Care would be to our house at 4:00 PM to hook up our equipment and a nurse would be by shortly after to help with Jayson’s feed. He was going to be hungry around 5:00 PM. I got home and got a welcome home from Maya that made me cry. She was so excited to see us and I could tell she was so worried. We got all settled and patiently waited for the Home Care people to come. Well… 4:00 PM came and went. 5:00 PM came and went. Jayson was hungry! At 5:15 PM I got a phone call that the equipment people were late, and the nurse couldn’t come help me with feeds without the equipment. I remember seeing the bolus feeds in the big syringe at the hospital. I pulled out our big syringe, mixed up some formula, and started feeding the little guy. I hoped and prayed I was doing it right. It was nearly six before the equipment people and the nurse showed up. The nurse was cranky because she was really behind schedule thanks to the equipment people. She rushed through the feeding system so quickly and I was so tired, I really wasn’t sure what to do. The respiratory therapist with the oxygen equipment took his time and explained things pretty well, but again, I was tired so I didn’t remember much. I was so incredibly overwhelmed. Mike came home as the respiratory therapist was finishing up. As he walked out that door, Mike and I looked at all of the equipment in our living room and at each other. We gave one another a hug and let out a large sigh. We’d figure it out, somehow.