Hospital at Home & 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.