NJ Tube Drama, Mother's Day, Heart Attack, and My Birthday Wishes

May 12, 2012

NJ Tube Madness

Jayson has had his NJ tube for nearly two months now.  We have been so protective of his tube, knowing that if it ever came out just a centimeter we’d have to take him to the hospital to have it replaced.  We’ve taken him to the hospital before, only to find out it was still in place.  There have been recent times in which I wanted him to pull his tube out.  It has been getting clogged multiple times a day, which causes it to leak all over the couch, the rug, his bed and our bed.  I’ve been doing laundry day and night just to wash the many things that have become drenched in his milk, and sometimes even his stomach bile.  Bleh!   They typically pull it out for a sleep study, but they decided not to pull it.  Dang it!  Friends told me just to pull it out so he could get a new one, but I was afraid it might hurt him.  I was just trying to be patient and wait until the next Swallow Study.  Perhaps they would replace the tube then.

Well, Saturday night it happened.  I was dancing with Jayson in the kitchen, enjoying the experience of doing something normal with my baby.  I disconnected him from all of his tubes for a brief moment and just sang and danced.  He smiled and giggled as I twirled him around and bounced him on my hip. His tube spun around with us and sprung up and down as we bounced.   I thought, “Wow… this is what it feels like to be a normal mom.  This is what normal moms and babies do,” and I smiled from ear to ear.  I was thinking about how I should do simple things like this more often, when the tube caught on something, and Jayson’s arm went up slapping the tube and tearing the tape off of his face.  I hurried and pushed the tube against his face, and yelled for Mike.  He helped me lay Jayson down to analyze the situation.  The tube had come out a good 8 inches.  It was time. 

Jayson and I both are sad he pulled out his tube :(

I pulled the tube the rest of the way out and tried calling Riverton Hospital.  They said they cannot replace it so we’d have to go to Primary Children’s.  Dang it.  I was hoping for a change of scenery.  I called Primary Children’s to find out if we could go right into radiology like I had been told by doctors before.  The receptionist on the phone transferred us to radiology where I was greeted by an automatic message stating their office was closed.  Great.  I called back again, and the unfriendly receptionist informed me that no one else was available to answer my questions; they were attending to a trauma.  I explained to her more about my situation and asked her if I could speak with the ER.  She asked me if this was an emergency; if it was I should call 911.  No, it was not.  But apparently I can’t speak with the ER.  I can bring my child to the ER or dial 911.  She informed me that she needed to take other calls that WERE in fact traumas or emergencies and she hung up.  Awesome.  Guess we should just pack up and battle it out once we get there.  And I could feel it; it was going to be a battle, and I was getting tired of being nice.

We arrived at the hospital and checked in at the ER desk.  I told them we were there simply for a tube replacement and needed to be seen by radiology.  I was informed that because radiology was closed at 8:00 on a Saturday night that we would have to been seen in the ER.  I told the nice lady that we had been to the ER 3 times in the last month and a half.  That was $600 in copays.  We couldn’t do another copay when it wasn’t for an emergency.  Especially when it’s likely we’d be back again in the near future when it was in fact an emergency.  We were told we could go straight to radiology.  A man came and talked to us and left to talk to radiology to see what he could do.  A lot of nothing.  That’s what he could do.  He said if it wasn’t a Saturday night, he could get us right into radiology, but tonight we had to be seen in ER.  That didn’t make sense to me.  Honestly, if I could control it, I would ensure my son only pulls out his tube M-F during business hours.  But I can’t.  It doesn’t seem like I should have to pay $200 just because of the timing.  It should depend on the procedure.  I talked with the nice receptionist again and she said she was really going to try and help me. 

The charge nurse came out and talked to us.  She listened to our situation and informed us we needed to be seen in the ER.  I sighed and said okay.  But, I did not want Jayson to actually be seen.  I didn’t want him out of his covered car seat and exposed to hospital germs when all we needed was his tube replaced.  She said that if he was admitted to the ER that he would need to be seen by a doctor, get his weight checked, etc. just as any other ER patient.  I was about to throw a fit, and she could see it.  She told me if we had a special standing order from our doctor saying we could get the NJ tube replaced we could go straight into radiology without being seen.  Really?  Why hadn’t we heard this before??? Why did we need an order to have the tube replaced?  Isn’t it enough that it came out?  Isn’t it enough that it’s on four different sets of discharge paperwork in their computers?  Isn’t it enough that we’ve been in the ER twice to have the tube checked while we were there?  And isn’t it interesting that NOBODY (not doctors, nurses, discharge nurses, ER nurses, pedicatricians) NOBODY told us that we needed an order from a doctor on file to get our tube replaced?  Really???  This might have been the most nonsensical of all nonsensical medical incidences!!!!  And shouldn’t that have been mentioned to me when I called the not-so-sweet-or-patient receptionist on the phone before I arrived??  The charge nurse was shocked after I listed all of my points and she said she would make this happen for us.  And I didn’t even have to get violent.

But then the nurse came back, with a doctor.  This could be good.  The doctor started explaining the policy to me.  I had heard it three times before.  She said that if she overrode policy to meet my request, she could be held legally liable if a tube was placed in my boy when it shouldn’t have been.  I understood it, but I didn’t like it.  I told her that I had not been notified of this policy when the tube was placed, the other three times we were hospitalized, the two times we were in the ER checking on the tube, nor by phone when I called earlier.  She felt really bad we had been through so much.  She told us that if we called our on-call doctor and got him/her to send in an order, they would do it.  Problem.  That phone number is on my fridge because the lady on the phone never told me to bring it when I called to ask what I needed to bring or do when getting the tube replaced!!!  The charge nurse went to look up the phone number and Mike and I crossed our fingers this would work.  We got the number and had the on-call doctor paged.  We awaited a call back, and the nice doctor called us during her son’s concert.  I told the receptionist we had her on the phone and the charge nurse came out.  I handed her the phone and I imagined the doctor to say something like, “Jayson West can have his NJ tube replaced.”  The nurse said, “Okay.  Thank you.  We’ll carry out the order,” and hung up.  That was it?  I should have called a friend to do that for me and saved us all the trouble!

We waited a few more minutes and then got taken back to radiology where we met four people—a doctor, a nurse, a technician and a resident.  This time I didn’t have to hold Jayson down, there was enough people to do that for me.  I stood at his head and talked in his little ear and tickled his sweet face.  The resident was in charge and I had a really hard time being patient.  The doctor kept telling him what to do, and he was really struggling.  So was Jayson.  The last two times the tube was placed rather easily within 15-20 minutes.  This time, it took 45.  Jayson had had it too.  He was so uncomfortable and possibly in pain.  I wanted to just yell, “Stop! Nevermind!  Don’t put the tube back in!”  But I had no choice.  Finally, the deed was done and we could go home.  My poor, poor baby.  He’s been through so much.  The team of medical people told us what a good job we had done at keeping the tube in so long, and flushing it so it didn’t clog permanently.  I was glad we worked so hard to protect it so that Jayson did not have to go through this on a frequent basis.  We were determined to take care of the new tube as well.  I suddenly started getting excited about the next swallow test, hoping that we might get good results and Jayson could be rid of this feeding tube once and for all.  Two more weeks until the next Swallow Study.  My fingers would be crossed until then.

May 13, 2012

Mother's Day

Today, I am grateful.  I celebrated my first Mother's Day today, and it was an emotional day.  I feel so blessed to be a mommy and that my sweet baby is still alive and with me.  I am also so blessed to still have my mommy after her scary heart attack.  We've been through a lot, had many challenges and experienced a lot of heartache.  But today, I am grateful.  I am a mom and I have my mom.  What could be greater than that?

Dear Jayson,

I waited a long time for you.  Before I knew you, I loved you.  I knew you were going to be special.  When you were inside me, I could feel your spirit.  I could feel your perseverance, your positivity, and your determination.  The instant you made your entrance in the world and looked at me with your big eyes, I recognized you.  My heart felt whole.  I felt complete.  Every experience I had ever had was intended to prepare me for this moment-- to be your mother.  You have been my greatest teacher.  You changed me, forever.  Life will never be the same.  I love more.  I live more.  I pray more and I cry more.  Every day is truly a gift and I celebrate every moment you are here with me.  I don't take anything for granted.  Jayson,  I will forever love and adore you.  I promise to sing to you, cuddle with you, and watch you sleep.  I promise to teach you, read to you, and be your biggest cheerleader.  I promise to encourage you, defend you, and support your dreams.  I promise to love and protect you every minute of every day.  You are my angel, my love, my life.  Sweet baby, thank you for choosing me as your mommy. 

May 14, 2012

My Mommy's Heart Attack

There are certain decisions that should never have to be made.  No one should ever have to choose between their baby and their mommy.  I’ve had to do that a lot lately.  Thursday night, life got scarier and more complicated.  I’m getting accustomed to the feeling of fearing for my child’s life, but fearing my mother’s is new to me.  My mom had a heart attack Thursday.  She started with chest pains the night before and had a friend come and sit with her.  Things eased up late at night and she went to bed, only to wake with more severe pains in the morning.  Her friend called her at noon to see how she was feeling and found out she was still in pain and not feeling well.  My mother doesn’t have health insurance.  Her decisions regarding her health and unfortunately driven by finances, and not by concerns for her own life.  Her friend came and drove her to the doctor.  The doctor did an EKG and found some minor abnormalities, but didn’t believe it was a heart attack.  He sent her to Logan Regional Hospital’s ER.  While there, they placed her on observation throughout the day.  As her pain persisted, they did some blood tests to find out a particular count was rather elevating, indicating a heart attack.  They waited a period of time and repeated the test and placed her in ICU in the meantime.  The numbers were significantly elevated.  She had been suffering from an ongoing heart attack.  Within an hour, she was placed on a gurney and life-flighted to McKay Dee Hospital for surgery.  Mike and I packed up the baby and placed him on his travel oxygen and headed to the hospital, about an hour away.  We waited a couple of hours late at night in a waiting room as they did the procedure.  They placed catheters through her groin and up her artery to her heart.  They searched for any problems.   They found a vessel that was clogged and rather thin.  It was about to collapse.  But that wasn’t the cause of the heart attack.  They found another vessel that was completely closed and collapsed.  The doc spent a lot of time and effort to open it up and clear out many blood clots and calcium.  He placed a stent to keep the vessel open and things were much better.  He said she would need a second procedure to work on the other vessel before leaving the hospital. 

They wheeled her to her room and said she would need her wound from the surgery cleaned, some blood drawn and a catheter.  We would need to wait outside while the nurses did these things, but she wanted someone to stay with her and hold her hand.  I was elected since I had the most medical experience at this point.  For whatever reason, I am fine holding my baby’s hand through all of his tortuous events.  I hate it.  It’s awful, but I can physically do it.  But with my mother, I almost passed out.  Several times.  I had to sit down a couple of times and support her from a distance.  I have always had a weak stomach regarding medical things.  I would enter a hospital and desire to throw up.  I still do; I still get nauseas.  But it’s an amazing God-given gift to be given strength when I need it for my son.

My sister came in for me when I was getting too dizzy and Mike and I left to get the baby home.  He shouldn’t be there to begin with, but what do you do?  We are not supposed to go anywhere but doctors appointments, and he can only be on travel oxygen for a short period of time.  But what do you do when your mother has a heart attack and is life-flighted, then taken into heart surgery???  I was a mess, and Mike insisted he needed to drive and be there for me.  We didn’t know what would happen.  So he did not want to stay home with the baby.

Over the next couple of days, my mom had some minor problems come up and they even postponed her second surgery to allow her time to recover.  I wanted to be with her, and there were times she was alone.  I know how important it is to have someone there to advocate for you when needed.  I really wanted to be there.  I brought Jayson with me a second time on Friday to be with my mom.  Saturday night I planned to see her once Mike got home with Jayson, but then Jayson pulled out his NJ tube and we had to go to the hospital.  Sunday, Jayson stayed home with Mike and I went to see her for Mother’s Day.  I was informed that day to watch Jayson closely because the person in the room next to my mom had pneumonia and Tuberculosis.  Great.  I never should have brought him to the hospital.

My mom opening her Mother's Day present I made her.

I got a call late Sunday night from my sister telling me that the surgery was scheduled for Monday morning at 8:00 AM.  Originally, they were thinking Monday afternoon or even Tuesday.  The doctor was concerned and wanted to move forward with the second procedure as soon as he could.  Bad, bad timing.  Mike worked on Monday, and I couldn’t take Jayson and expose him to more illnesses at the hospital.  My older sister’s kids had finals that day.  She homeschools them, so she needed to drive them to the testing location and pick them up.  She couldn’t come.  Tessa had already adjusted her work schedule to be off in the afternoon.  It was too late to adjust it again, so she had to go to work.  No one was going to be able to be with my mom while she had her second heart surgery.  How terrible!!!  I tried calling several friends to see if they could go with me and just stay with Jayson in the car or waiting room while I stay with my mother.  But it was 11:00 PM, and there was a limited number of friends I could call that late.  The friends I called had limited time to rearrange their schedules for the following morning to help me.  And I can’t get a babysitter to watch my sweet boy.  I felt like I had to choose between my mom and my baby.  I wanted to be there with her and tell her it will be okay, hold her hand as she’s wheeled in, and be the first person she sees when she wakes up.  But I needed to be there for my boy and I really couldn’t expose him to the illnesses at the hospital.  My heart felt torn in two. 

I called my little sister the morning of the surgery and told her I was considering going, even though it wasn’t what was best for Jayson.  I had just learned of the risks of surgery, and there were a lot.  I would never forgive myself if something were to have happened and I wasn’t there; no one was there.  My sister turned her car around and headed back to the hospital.  She decided to call in to work and get the day off…again.  Bless her!!!  I was so relieved that someone would be with my mom, even though it couldn’t be me.

Thank goodness her surgery went well.  It lasted nearly 3 hours and the doctors placed three more stents.  They placed one in the vessel as planned, and two more in the original vessel to open it up in a couple of more concerning places.  She seemed to recover quite quickly now that both vessels were open.  I didn’t get up to visit her the day of surgery until 9:30 at night.  I had to wait until Mike was home, and Jayson pulled his NJ tube partially out again.  I had to determine if it was in place or not.  Finally I was able to see her and she looked god!!  She was scheduled to go home the day after the second procedure, on Tuesday.  She arrived at home Tuesday night and is doing well.  Our family is so blessed!!!  Although, I think we have endured MORE than enough in our family with two life-flights and now six hospitalizations.  Maybe that means everything from here on out will be smooth sailing??? :)

May 15, 2012

Five Months!

The little man is 5 months old!
He's 13 lbs 3 oz and 26 inches long
He loves to play, smile, laugh, giggle.
He can grab things and bring them to his mouth.  He puts everything in his mouth!
He loves bath time and is starting to love tummy time.
He cuddles with his stuffed toys while he falls asleep.
He recognizes mommy's and daddy's voices and is almost rolling from back to belly.  He rolls from back to side all the time, and from side to belly all the time.  We're waiting for the one complete roll!
He's finally in 3-6 months clothing!

May 16, 2012

Disappointment

I awoke this morning feeling inspired and hopeful.  We were getting the official results of the sleep study today, and I really expected good news.  I observed some good things during the sleep study.  I was both excited and anxious about the possibility of weaning Jayson's oxygen.  If we could begin weaning, we would be taking a big step in the right direction.  But I've seen bad things happen when we've weaned Jayson's oxygen in the past.  I was really nervous.

We got all packed up and headed to our new pulmonologist.  I had heard good things about her.  She used to work at Primary Children's Hospital and now has her own private practice.  I was not confident my insurance would even cover her, since I had already received a call weeks before informing me they were having some problems working with my insurance.  But it didn't matter.  My pulmonologist left, and she is the last person in the Western United States who can read sleep studies.  I would do whatever it takes to get some answers.

We entered the fancy, sterile office (after it took us 15 minutes to get out of the car and inside with all of Jayson's equipment) and checked in at the front desk.  They took my insurance card and I paid my copay.  Good sign.  Maybe my insurance will cover this visit after all.  As the receptionist was looking up my information, she confirmed Jayson's birthday as March 23, 2011.  What?  Where did that come from.  "No," I informed her.  "It is December 15, 2011."  Crazy.  What a mistake.  She fixed it in the computer and then got a confused look on her face.  "You are here to discuss the sleep study, right?" she asked.  "Yes."  "Hmmm... We don't have it.  Did you do it here?"  "No," I said, "We did it at Primary's.  We were told that there were problems with my insurance, so we did the study at Primary's and the Pulmonologist was going to read it and discuss it with us."  "Well, we don't have it."  What does that mean exactly?  Well I quickly found out.  They didn't have it.  They didn't request it.  They didn't notice that it was not in my file or in the computer.  They were not aware that in order to have an appointment to learn about the sleep study that you would have to actually HAVE the sleep study.  Do you know what that told me?  Yes, once again I am acquainted with a doctor who does not even look at my child's file before the appointment.  Once again, we have a doctor who just doesn't care.

The receptionist said, "Well I can have the doctor call over to Primary's to try and get the study faxed over."  Seriously???  I was told by the last pulmonologist that it can take the doctor over 15 hours to truly analyze a sleep study.  A good doctor reads the raw data, watches the video, and analyzes it.  Then, the doctor writes a summary and analysis.  I said to the receptionist, "I think I'd rather reschedule.  The doctor needs time to analyze the sleep study before my appointment."  She responded, "Oh no, the pulmonologist is a great doctor and she used to work for Primary's.  She can analyze it really quickly."  Wow.  Again, my son was clearly not worth their time.  I started to tear up in frustrated and rebuttlaled, "But you see, there have been many things doctors have missed with my son when they didn't carefully examine him and look at the data and information.  He needs someone to take the time to look at the data, especially if she's going to make decisions on weaning his oxygen."  The receptionist told me the doctor would try to get the study and would talk to me shortly.  I was fuming.  No one was listening.  I felt out of control, again.  I was getting so tired of this feeling... frustration, fear, anger.  I awoke so hopeful this morning.

The doctor came out minutes later.  She was frustrated too.  No one took her calls at Primary Children's.  Dang them.  They didn't send her the study.  Go ahead, pass the buck.  I know all about this game.  No, you didn't request the study.  You didn't notice you didn't have the study because you clearly never even looked at my son's file before our appointment.  Don't try blaming your poor practice on another hospital.  These were all truths I wanted to say to her face, right then and there.  And I wanted to say them in my psycho mommy hostile voice too.  BUT then I remembered this is the last pulmonologist in the Western U.S. who could see us and read this study.  If I upset her, she might care even less about us than she already does right now.  Yes, it's sad.  I had no choice but to play her game.  I couldn't hide the tears of disappointment however.  She said, "I'm sorry.  I think we better reschedule.  Primary's just won't answer their phones so they won't be able to get the study to me right away.  But where did you drive from?  Oh, just West Jordan?  Good, no biggie."  I wanted to slap her.  No, no biggie at all.  I would like to see her pack up her 5 month old chronically sick child with his oxygen tank, feeding pump, pulse oximeter, diaper bag and medical file to head to the appointment that was just canceled.  No biggie.  Her last line was my favorite.  "Oh, look.  I see he's on oxygen.  How much?"  She had no idea.  She knew nothing about the most precious child in the world.  Her loss. 

I went home fuming that today was such a disappointment. I went home disappointed we were without answers.  I went home confused about what we would do when our only hope was a doctor who was a complete flake and a failure.  I went home feeling defeated, and I cried it all out.  It felt good to cry.

An hour later, I received a phone call from the same doctor.  She explained she was trying to get the sleep study sent to her that afternoon because she had an opening the following day at 1:15 and we could come back then.  I took this opportunity to let this doctor know about my true feelings.  I explained how important this doctor's appointment was to us and that in a way Jayson's life depended on it.  I said Jayson isn't a patient who had a sleep study because he snores or has nightmares.  He has life-threatening apnea and the analysis of the sleep study would determine whether we should wean his oxygen or not.  I got up the courage to said bluntly and honestly, "If you do not have the time to give my little boy what he needs, please let us know and we will find someone who will."  She explained that technicians analyze the study and she merely writes a report summarizing what they find.  She could do that quickly that afternoon.  She again blamed these problems on Primary Children's Hospital and said that her patients and their parents are typically very satisfied with her.  Then she reminded us that she is the ONLY sleep specialist in Utah, Idaho, Wyoming, Arizona, Nevada, and Washington.  We didn't really have a lot of options.  I accepted the appointment for the following day, feeling a little better that I at least let her know how I felt.  I was hoping she would take what I said into consideration and decide to allocate the time needed to analyze the study.  Until then, I would be saying lots and lots of prayers.

May 17, 2012

Birthday Wishes

Today is my 28th birthday.  And today, I really only had three birthday wishes.  1.  I wanted a bubble bath.  A nice, hot bubble bath with candles and music in the bathroom without disruptions.  I was determined to make this happen during Jayson's morning nap.  and 2.  Stay OUT of Primary Children's Hospital.  And 3. Good news from the Pulmonary doctor about Jayson's sleep study.

My birthday wake up call wasn't a phone call, or a text message.  It was Jayson's monitor alarm going off.  I almost didn't pay attention, since I figured Jayson was starting to wake up and wiggling, which affects the signal of the sensor.  I had a strong feeling I should check it out, so I looked at the monitor that was still sounding to see Jayson's heart rate was at 61.  Bad. That's a Code Blue again.  He was still sound asleep.  I watched him to see if he was breathing.  No.  I called out his name and shook him gently, and he responded and woke up and began breathing again.  His monitor went up to the 90's, and then the 120's.  I let out a sigh of relief and sat down on the bed.  I thought we were done with these scary events.  Apparently not.  My heart was just beginning to beat again when the alarm went off again.  I looked at it quickly and saw his heart rate drop from the 80's... 70's...55... 51...51...55.  I didn't know what to do this time. He was wide awake and he was breathing.  I grabbed my stethoscope to take a listen to his heart when the monitor went back up to the 70's, 90's, and 120's.  Another Code Blue, while he was awake.  I let out a deep sigh, but this time not out of relief.  This was going to be a long, rough day.

I was told if he ever had a bradycardic episode like the previous one again he needed to come straight to the hospital.  Later I was told that if he looked okay, there was no need to go to the hospital.  He looked fine.  So which was it?  Hospital or no hospital? I called my pediatrician and left a message. He would tell me what to do.  I started getting the baby ready and waited for a call back.  I took the dog out and discovered I must have forgot to take my phone with me.  I missed a call, from my doctor's nurse.  The message told me my doctor was out of the office and to make an appointment to be seen that day by one of the partner doctors.  I made my appointment and looked at the clock.  Time seemed to have flown by while I was problem solving and it was nearly time for our Pulmonologist appointment.  No bubble bath.  Sad day.  On my birthday.

I got myself ready and packed the baby all up to go to the doctor.  I didn't call anyone to come help us get packed up and loaded into the car this time.  I had already had a couple of doctor's appointments that week, and I really didn't want to ask for MORE help.  Since I had to do it all on my own, I was running late.  It took so much time to get him all packed up and loaded in the car!!!  I struggled to get us in the car and caught his monitor cable under his car seat and pulled it partially off.  I quickly put it back on, pulled out of the garage and drove a couple of blocks when Jayson's monitor started going off.  I looked at it to see that there was no signal. Great!  I didn't have time for this.  I spent the next 15 minutes in the back seat trying to get his sensor to register with the monitor.  It would not work.  Normally he'd be okay and I'd tell myself it was just a short 30 minute drive.  But, my son had stopped breathing and his heart nearly stopped TWICE earlier that morning.  There was no way I would feel comfortable driving to the doctor myself without his monitor.  I just started crying.  On my birthday.  I didn't know what to do.  I was supposed to have been at the doctor's office already, and I still couldn't get his monitor to work.  I thought of friends who constantly offer to help.  But many of them would need to pick up children from school and could not accompany me for the rest of the afternoon to go to two doctor appointments.  Others had young children.  Jayson can't be around kids and we didn't have time to pack up another baby to head to the doctor.  I called Michael and just cried.  And yelled.  I was mad at him and none of this was his fault.  But why did I always have to work through these tough and scary situations by myself?  I was tired of doing it by myself.  Mike said he'd call the doctor's office and explain the situation.  He also suggested I call one of my closest friends Melissa, but she has a toddler.  Mike suggested that maybe someone could watch her little girl while she accompanied me to the doctor.  It was worth a shot.

I gave my friend a call, and bless her heart.  She dropped everything she was doing, and called her aunt to come watch her daughter for a few minutes until her mother could make the longer drive to her come to stay for the afternoon.  I pulled up to her house and she sat with me and hugged me while I cried.  Her aunt sped down the residential road, flipped a quick U-ey and went running into the house.  I loved her too.  Melissa hopped in the back seat to keep an eye on Jayson and make sure he was breathing while I drove the doctor.

We arrived a half hour late, but the doctor still had 10 minutes to spend with us.  Not what I hoped for and not the most ideal situation, but it is what it is.  The doc came in slightly irritated that we were late, but sat down and got right to business.  She said she analyzed the sleep study data, but could not make the official write up analysis since she was not yet under contract with Primary Children's to do so.  She showed me some graphs which were much easier to read than the raw data I received from the previous sleep study.  She said it was crazy what the test revealed.  "I don't really know the story, so I don't know why your son was put on high flow to begin with, but if you look at the data, he starts out on high flow air with no additional oxygen.  He's having central and obstructive apnea, desaturating frequently, and has an irregular heart rate.  He's slowly weaned off the high flow and onto regular oxygen.  Notice when he's off the high flow, all apnea episodes stop.  He doesn't desaturate in oxygen.  His heart rate becomes regular.  Everything was best at 1/4 liter of oxygen.  He just needs a little extra oxygen.  High flow was actually hurting him.  He should stay off high flow and all he needs is 1/4 liter of regular oxygen."  Wow.  Crazy.  Unbelievable.  I suddenly felt so incredibly grateful.  My prayers were answered in so many ways.  First, my son can finally be completely off of high flow.  Second, I lacked serious trust in this doctor.  I didn't know if I would listen to her if she believed in her professional opinion that we should wean his oxygen.  However, I couldn't argue with the concrete data in front of my face.  Third, I was going to be soooo incredibly nervous to begin weaning his oxygen.  I saw myself watching him constantly and never sleeping out of fear something bad would happen if he was off of the high flow.  However, I could see that the high flow is hurting him.  The data shows he did much better on just regular oxygen.  I did not have much to fear.  Blessings.  So many blessings.  The surgery worked, and now the high flow was causing problems when it was once solving them. This was a big step in the right direction.  The biggest.

The doctor examined Jayson and said she was very surprised that Jayson aspirates.  She said his lungs don't sound damaged at all, and children who aspirate often have permanent lung damage.  Wonderful!  She said he looked very healthy, considering.  The doc also noticed his palate is a little further back than normal, which makes his airway narrow.  She said he has small nares, narrow nasal passages, a narrow airway at his mouth near his palate, and likely a narrow airway to his lungs.  This explains a lot of his difficulties, and she expects he'll eventually grow out of them.

I walked out of that office in awe.  I never expected to hear such great news.  I never expected to turn the dial on the oxygen gauge to 1/4.  It was the best birthday gift ever!  I couldn't ask for anything more.  But the day was not over yet.  We had another doctor appointment.

Jayson saw a partner doctor to our pediatrician who we've seen once before.  He's so sweet and cautious.  He examined Jayson and felt he looked well, despite his episode that morning.  Jayson slept in our bed with us the previous night because he was having some mild seizure-like episodes.  I didn't put him on our wedge in our bed that night, which escalates his reflux.  We assumed he refluxed and hit the vagus nerve again, which caused his heart rate to drop.  The doctor wanted him to have an EKG just to be sure.  He wrote us up a script and sent us downstairs for the EKG. 

When Melissa, the little man and I arrived at the radiology desk, the receptionist looked at the stroller, took the order and asked if it was for my baby.  Yes it was.  She informed me that the IMC hospital doesn't do EKG's on babies who are not inpatient at the hospital.  All babies get sent to Primary Children's.  That's where I needed to go.  I told them my doctor sent me down here and said we could do it here.  The receptionist told me she would find out and that we should take a seat.  Shortly after, the manager, a supervisor, and a NICU technician came out into the waiting room to speak with me.  They were so sweet and understanding.  I told them why we were there and what we needed done.  They informed me of the protocol, which the receptionist had just explained.  I told them I understood, and I knew my face had disappointment written all over it.  The manager asked, "Did you come here because it was closer?  Is it because Primary Children's is farther away?"  I replied, "No, I came here because my doctor said he wanted to see my son before he referred us to the hospital.  We're there so often, he wanted to make sure we had reason to be there.  And he sent us here.  To be honest, today's my birthday, and it was my birthday wish to stay out of Primary Children's.  We were just there on Saturday."  I let out a sigh of disappointment.  The manager looked at the supervisor and they both nodded.  She said she would make an exception for Jayson, for my birthday.  What another birthday blessing!  I appreciated them so much.  They were sweet, they listened, and they made an exception.  I know how rare that is.

Jayson's EKG came back normal.  Well, abnormally normal.  Normal for him.  We finally made our journey home, and everything was well.  I really wanted to call it a day, and move on to the next. Maybe tomorrow could be my birthday.  We could try again.  It was a day full of good news, but I was exhausted from spending the day in doctors' offices and a hospital.  But my hubby and sister managed to make it a special evening.  Mike came home with dinner and a birthday cake.  I had gifts on my porch and received many Facebook and text messages.  I felt loved and celebrated.  The day started out rough and ended wonderfully.  I spent the evening with my precious boy, my amazing husband, my sister and her fiance.  I may have not got my bubble bath, but we didn't end up at Primary's and we got the most wonderful news about weaning Jayson's oxygen.  Most importantly, I spent the day with my baby and my family.  It was perfect.

I turned 28 today, and this is a birthday I will never forget.  I grew up this year.  I became an adult and a mommy.  I learned about life, pain, suffering, blessings, miracles and answers to prayers.  I actually feel different this birthday.  It's not just another tally mark chalking up the number of years I've been alive.  That tally mark represents a lot.  And I know a lot more good is to come in my 28th year.  I can feel it.