Baby Torture, A Healthy Heart, and a Feeding Miracle!

September 5, 2012- FEES Study

One more test before we move forward with a G-tube… and this has been the one I’ve been most nervous about.  He doesn’t need anesthesia with this one, but I’ve heard the FEES study is tortuous and traumatizing.  That sounds like about the last thing we need.

Jayson, Shelby and I made our long trek to Primary Children’s to visit Dr. Meier for the first time at this location.  We typically see him at Riverton.  We got called back and a speech pathologist greeted us in the room.  We already had met during a previous swallow study.  No surprise there.  The hospital halls are filled with familiar faces these days.  She explained the procedure.  Jayson would have a scope with a camera down his nose to his throat. We would feed him foods of different consistencies and watch the camera to see how he’s swallowing.  The swallow study uses an x-ray to watch the food go from the mouth to the stomach or the lungs.  The FEES study will have the camera that films Jayson’s anatomy as he swallows.  It will show us what his body is doing when he tries to swallow.    

The room soon filled with people: ENT Dr., his nurse, a resident,, the speech pathologist, Shelby and myself.  They asked me to hold him.  Great.  I hate that.  Let mom hold him down while he kicks and screams.  Although I despise being a part of a tortuous procedure with my boy, and I don’t want him to think I would ever harm him, I do those things because I know I can help calm him.  He knows how much I love him, and I know I will be gentler with him than any nurse.  I will also be right in the middle of the action in case I need to intervene on his behalf.  So I reluctantly agreed, and I was outfitted in a nice yellow robe.  They said it would get messy and he may throw up.  Poor baby.  I sat down on a chair and held Jayson sitting up in my lap.  I had a nurse and resident standing near me on each side of me, also holding him down and staring at the screen.  The speech pathologist was at my right ready to feed him and the Dr. was standing on the other side of the room staring at the screen.  

The speech pathologist first used the pudding-like consistency I mixed up with stage 2 baby food thickened with oatmeal.  She added blue dye so we could easily see it go down.  Jayson of course hated the scope going down.  He started freaking out.  He also hated so many people surrounding him and holding him down.  Then while he’s freaking out, the speech pathologist started shoveling food into his mouth.  When a baby is hysterical, he does not eat well.  However, we celebrated as it seemed the food went down without problems.  After two bites, we moved on to a syringe with honey consistency blue food.  After a quick squirt, blue thick liquid went all over Jayson and myself and apparently some ended up in his mouth and seemed to go down again.  Amidst the kicking, screaming, choking and gagging going on in my arms, it seemed like complete chaos—the medical staff guessed, hypothesized and sometimes even conflicted with one another deciding whether the food was going where it should.  One thing was certain--  Jayson had one messed up epiglottis.  It was big, long, floppy, and dysfunctional.  Even the Dr. seemed surprised and expressed he now knows why Jayson is struggling so much with his breathing and eating.  At least we know his epiglottis is crazy.  

Jayson was given a bottle which he tried to suck, but little of the nectar consistency would go down due to his hysterical condition.  Out came the syringe and his face was flooded with liquid once again.  With the choking, gurgling, and gagging I spoke up, “Hey, I think he aspirated.  That’s what he does at home.”  Again, voices and arguments filled the room and I couldn’t tell one statement from another, nor did I know if Jayson had passed the nectar without problem.  The Dr. stated, “We can watch that again and find out,” as the resident interrupted to mention the monitor was not set to record.  None of this was on film.  The resident tried explaining the doctor simply needed to push a button and name the video to begin the recording, and it would retroactively save the data we had collected so far.  He couldn’t be bothered.  “No, we’ll be okay,” he replied.  Well without knowing whether my son could handle a couple of milliliters of nectar consistency, we pushed down some half-nectar down his throat.  I freaked out and said he was aspirating.  I knew it.  I knew it with the nectar, but I couldn’t take anymore.  It was coming out his nose, he was starting to choke and vomit.  I felt a huge feeling of guilt for doing this to my poor baby.  The doctor claimed he could tolerate some half-nectar.  Inaccurate.  No way.  The speech pathologist chimed in to express she wasn’t really sure how he did, and I made a suggestion against my better judgment as a mommy.  I wanted to be done, but it seemed to me that all of this was done in vain without good information.  I suggested they go back to the thicker liquids now that he aspirated and had been eating more.  He’s not going to aspirate the first 2 mls of something he eats.  And I explained that it appears to me that once he aspirates, he just can’t recover, regardless of consistency. 

 I had him calmer than before, and we gave him honey consistency.  Sure enough, he aspirated.  I was right.  I’m his mommy, and I knew he couldn’t tolerate half-nectar.  The room started to settle down and I started to calm down my blue smurf baby.  Once his gown was off, he began smiling and squealing.  He is such a trooper!  I admire him so much.   I was not okay, however.  I was still upset, anxious, and my head was spinning.  I had never seen such chaos in my life.  So much happening at once, and no one could agree on just what WAS happening as my baby was trying to swallow.  Although it was really neat to be able to watch him swallow and observe his dysfunctional epiglottis, I felt like I got more clear information from a swallow study.  And in a swallow study they give them more volume, so I feel more comfortable stating he can or cannot eat a particular consistency.  This test just confused me and tortured my little man. 

 

Everyone sat down and looked right at the Dr.  They all were thinking the question I was about to ask, “So what are we going to do with his epiglottis?” The Dr.stumbled for words.  He grunted, hesitated, paused, began to speak, stopped, and thought some more.  He said that he hoped it would have corrected itself by now.  In most cases of laryngomalacia children are growing out of their conditions at this age.  But give its large size and the way it folded over itself, he isn’t sure it’s going to correct itself.  He claimed it’s clear that it’s closing off his airway, and getting stuck from the secretions.  He said another surgery would just complicate it and likely make it worse.  He said in other oversized epiglottises he can tack them up to the back of the throat, but do to the issues with Jayson’s, it would make his aspiration and swallowing issues much worse because he wouldn’t be able to protect his airway.  He said we don’t have a lot of options.  A tracheotomy is an option if it’s going to prove to be life threatening, which it has.  He said he hates to go backwards, but it might be necessary.  He asked how positioning has been going and I informed him that since I’ve been sleeping Jayson on his side and tummy, he’s been doing much, much better.  My statement made the Dr. feel more comfortable.  He said, “I would like to wait a little longer, if you think we can.  If we can stay on top of the positioning and avoid life-threatening apnea episodes, I think we can avoid a trach.  What do you think?”  I agreed.  Of course I don’t want Jayson on a trach, but we’ll do whatever we have to in order to keep him alive.  For now, I think we’re okay.  I am very anxious about winter and illnesses however.  That’s truly what threatens his life.  We’ll see what happens this winter.  People slowly filed out of the room and I was left with my whirlwind of thoughts and my giggling baby.  I wish I could dismiss the trauma as quickly as he can.

We headed home and pulled into the driveway, emotionally drained and exhausted.  I hobbled in my house on my crutches as Shelby was getting Jayson out of the car.  I heard her saw, “Oh no.  His tube came out a little.  It got snagged or something.”  She brought him inside and I took a look.  It was nearly all the way out.  His tape had come off partially and the tube pulled through the tape.  I pulled it the rest of the way out, which only included about an inch of length.  I wanted to just sit and cry.  It had been an awful day at Primary Children’s and now I had to go back.  Jayson had been tortured beyond belief, and now he had to endure more.  My heart ached.

We turned around and revisited the route I feel I could travel with my eyes closed.  I was relieved that this ER visit would be within normal business hours so we should be able to get in and out of radiology really quick.  At least that’s what I thought. Two and a half hours later, we were still waiting in an ER room to go back to radiology.  I finally voiced a complaint that my child had been without food for nearly 4 hours and we were quickly approaching a hospital stay due to dehydration.  Finally, that got the ball rolling and we immediately got taken back to get the tube placed.  Unfortunately, it was not an easy placement.  The radiologist was good, but he was having a difficult time.  It took him 15-20 minutes to place the tube.  Jayson did really well, but I felt sick thinking about all he had been through.  Finally, the job was done and we spent another 45 minutes waiting to be discharged from the ER.  I was so relieved to get my sweet boy home after an incredibly long, awful day and snuggle him the rest of the night.

September 19, 2012- Cardiology and GI Appointments

I have been incredibly nervous for this appointment.  To be quite honest, I never wanted to have this appointment.  I was worried about what I might find out.  We’ve been concerned about his bradycardic episodes, which have been escalating again lately, but we’ve never suspected a major heart problem.  However, many genetic syndromes involve a heart problem.  I don’t know how I would handle anything being wrong with his heart.  That is the ultimate in my opinion.  I went into this appointment with no expectations.

We got taken right into a room for an echocardiogram.  The technician was very serious and not-so-friendly.  She kept telling me to keep my son under control or they would have to sedate him.  He was doing really well!!  He started fussing when he was tired.  I tried playing his favorite show Yo Gabba Gabba on the i-pad but internet signal was interrupted often.  She asked if there was something else I could figure out to keep him still or entertained.  I was not told that I would need to do that for his echo.  He finally went to sleep and she was able to finish the echo easily.

We were then taken to an exam room where a nurse took Jayson’s vitals.  As usual, they had a difficult time getting his blood pressure.  The nurse tried 4 times and left a welt on his leg from the cuff.  Jayson didn’t even make a fuss.  The heart doctor came in and I absolutely LOVED her!  She was so sweet with Jayson, so patient, so thorough and explained things to me clearly.  Jayson has never had such a thorough examination.  She gave me the greatest news any mommy could ever hope to have—Jayson has a perfectly healthy heart.  I felt like I might pass out from happiness!  I seriously felt light-headed.  It was so amazing, I cried.  She expressed there might be one concern that could result in an inability to get an accurate blood pressure.  She tried to get his blood pressure old school style and was successful.  She confirmed she had no concerns for Jayson.  She feels his bradycardic episodes are respiratory related and his heart rate drops when he struggles to breathe.  I informed her of the one time at the end of July when he had a tachycardic episode while sleeping, and his heart rate went back to normal when Shelby woke him up.  She said that could be evidence of a condition, but whereas it happened just once, she wasn’t too concerned.  The Dr. said if it ever happened again I should call her.  In fact, if I ever had any questions I could call her.  She said Jayson was being discharged from the cardiology clinic “forever” but if I ever wanted him examined, all I had to do was call.  And she gave me a direct number.  What an amazing doctor!  I felt so comfortable and confident leaving her office.  Jayson had a healthy heart.  And mommy had a happy heart!

We had a dysphagia GI appointment that afternoon.  I thought it was at 2 so Shelby and I were taking our sweet time in the cafeteria at Primary Children’s.  At 1:30 I thought I should check the time to be sure.  That’s when I noticed my appointment was at 1:00!!!  Oh no!!!!  I felt so stupid!  I was just down the hall, and had no reason not to be to my appointment on time!  To give myself a little credit—I HAD a dysphagia appointment the previous Wednesday scheduled at 2:00 but the nurse called and asked me to cancel and reschedule because the doctor team was not prepared for my doctor appointment.  So that’s why I had 2:00 in my head, and really THEY were the ones who weren’t prepared, so hopefully they’d be forgiving of my tardiness.  I hobbled really quickly down the hall on my crutches to get to our appointment.  There was a LONG line of people waiting to check in, reschedule, and pay their copays and there was only one receptionist.  Even more, the “system” was down so we were in total gridlock.  A nurse came and grabbed Shelby and Jayson and took them back while I waited at the counter for another 15 minutes.  Finally, she told me she would just bill me later and I was able to get back to Jayson.  

I was anxious for this doctor appointment.  We should finally hear what type of surgery we were doing for Jayson and hopefully get it scheduled!  After the PH probe showed practically no reflux, I expected to hear Jayson’s reflux issues were resolved and we could do the G-tube.  Well, I was surprised to hear his reflux was clinically significant according to the impedence probe study.  And due to his aspiration issues, he was at risk.  He needed to stay on the Prevacid and we still had no idea what to do.  The doctor said it was not a clear decision, nor was it her decision to make.  I think she was implying it was my decision???  I’m not the health specialist!  I don’t know about these things!  She explained if we wanted to be purists, the nissen ensures that he won’t aspirate reflux EVER.  But he could still aspirate oral feeds and his own saliva and secretions.  She said a GJ would likely prevent him from aspirating reflux, but it wasn’t 100%.  And lastly, a G tube is risky, but she felt like it might be worth a try to just do the G-tube and then we can change it if necessary.  She then went on to explain that Jayson is the first patient who qualifies for this medical study that is nationally known.  He has a neurological condition, and he had conflicting data from the two probe studies.  She wants him to get a G-tube and be observed with the expectation that he will likely struggle sometime in the future.  At that point, he would be randomly selected to receive either a nissen with a G-tube or a GJ tube and then the observations and study would continue to see how a neurologically challenged child responded to each treatment.  I obviously felt uncomfortable about the whole thing, but especially the random surgery part.  She told me that I could select which one I wanted since he would be the first patient to qualify, but we’d need to begin with just a G-tube surgery.  The only part that really appealed to me was knowing that the doctors would take very good care of him if he was the ONLY patient who qualified for this study.  They would monitor him closely, and that seemed like a good thing.  But I really didn’t want my son to be a guinea pig to the medical science field, especially where he’s such a fragile little guy.  Really, I didn’t want to have to make this decision at all.  I thought that’s why I put Jayson through so much pain, torture and procedures so that we’d have answers.  And now we don’t.  And I have to make the decision based on my limited knowledge.  My GI doctor recommended I talk with my pulmonologist and see what she suggests with the condition of his lungs.  Our appointment with her was in two more weeks.  I really hope she provides us with a clear answer because I want to get this surgery done!  Flu season and RSV season are fast approaching and I want Jayson in and out of the hospital as soon as possible!!

 Jayson had fun playing in the paper.

September 20, 2012- Feeding Therapy Surprise!

Today was an amazing surprise!  I have so much to do to get ready for Jayson’s early birthday party that I really didn’t want to go to his feeding therapy appointment.  He just started eating some dissolvable solids and he needed more time.  We weren’t ready to take more steps forward, so I felt that this appointment was going to be a waste of time.  I couldn’t have been more wrong!!

I love our feeding therapist.  She is seriously my hero.  She helps us in so many,  many ways and our therapy appointments are always so enjoyable.  She went over the report from the FEES study with us.  I was shocked to see such an organized report from such a chaotic situation.  The report said that Jayson MAY be able to tolerate half nectar consistencies.  I explained how the whole FEES study played out, and the feeding therapist agreed that we should keep it safe with honey and pudding consistencies.  I was so relieved to hear she supported me.   I informed her about our decision to have an early party for Jayson.  She asked if I was going to have a cake for him.  I hesitantly responded, “Well, yes.  But I don’t think he’ll eat it.  I just want him to play in it and put his hands in it.  If he puts his hands in his mouth, I’ll pull the cake out.  I’m interested to see what he’s going to do.”  She said, “Me too,” and walked out of the room.

She came back with a high chair, animal crackers, applesauce and graham crackers.  I had no idea what she was going to do.  I put Jayson in the high chair and she poured applesauce on his tray.  She dipped some animal crackers in the applesauce and put them in Jayson’s mouth.  He smiled and tried to nom on them.  He even bit a piece off.  We were ecstatic to see him chewing and swallowing.  There was a little choking involved.  The animal crackers were not quite soft enough.  We put his hands in the applesauce on the tray and helped him put them in his mouth.  We watched him sucking on his finger and making the mental connection between food and how to get it into his mouth.  With minor assistance, he was able to get the applesauce in his mouth.  We then stuck a graham cracker in the applesauce and put it in his mouth.  He got so excited, bit off a piece, chewed and swallowed and dove for more.  He took another bite.  And another.  And another.  By this time, my therapist and I were crying.  She told me this moment and one other moment with one of her special kiddos were the greatest moments in her career.  I couldn’t help but feel so fortunate that our therapist cared so much for Jayson and his progress.  I just let the tears flow, and I had a hard time closing my jaw.  I was so shocked and surprised at the progress Jayson had made.  He loved food.  He wanted to eat everything.  And the therapist told me he could eat cake.  I never had the expectation that Jayson would eat cake on his real birthday, let alone on his early birthday.  I was over the moon happy and couldn’t believe I almost cancelled this appointment.  Jayson sure had a surprise for us, and I have a feeling he has plenty more coming!

Just as we were about to leave, our therapist asked us about Jayson’s head shape.  She asked if we had a helmet yet.  I told her I hadn’t heard anything about a helmet since he was 3 months old, and we have many doctor appointments.  She said that children with plagiocephaly (flattening of the head) typically go in helmets between the ages of 6 months to a year.  He was nine months, which was late in the game to get a helmet.  Really???  Why hadn’t anybody said anything??  She asked if her physical therapist in her department could come check him out.  She knew a lot about these things.  She came and measured his head and said he definitely needed a helmet, but it may be too late for him.  She asked if there was any reason why a doctor might be against a helmet?  I said that we haven’t had a doctor even bring it up, but I might want to wait until Jayson sees the neurosurgeon on October 26^th about his hypoplasia of the C1 ring.  The therapist said that can be a big concern for helmets and for therapy.  She asked if we were receiving physical or occupational therapy and if we were working on head movement and positioning.  I said that we were.  She said that could be a big problem and may cause him harm.  She suggested holding off until we see the neurosurgeon.  She works with some children who have C1 and C2 ring issues and she has to be really cautious about what she does with them during therapy.  Great.  Why is it that I tend to learn critically important things regarding my son’s health from my feeding therapist instead of one of our 10 specialists that we see????  Why???  What would I do without our feeding therapist watching out for my son???