The Good, the Bad, and the Ugly of Tube Feeding: The Ugly

The Ugly

I have been dreading this post.  I didn't want to revisit the drama that took place in December and think about the risks of our upcoming procedure.  Well, today it was all thrown back in my face and I have been forced to deal with it.  So it's time.  It's time I tell the ~short~ version of the crazy fiasco we've been dealing with.  And yes, this is the short version. 

On October 26th Jayson had his GJ feeding tube placed.  We wondered why many nurses mentioned they had never seen a tube like that.  They were unsure how to use the tube, flush it, etc.  That was a warning sign.

Jayson had a couple of hospital admits over the next couple of weeks.  Many more nurses and doctors said they had never seen a tube like that before.  The wound nurses, who specialize in tube wounds, mentioned his tube was highly abnormal.

On November 23rd Jayson's tube caught on his carseat and pulled out of the peg at about 11:00 PM.  I called the hospital to give them a heads up we were coming.  The on-call GI doc told me to turn around and go home.  There would be nobody available in radiology to help us until morning.  And then, they have a busy morning so they wouldn't be able to replace it until the afternoon.  I reminded him that my child is SOLELY tube fed and he would be without food for many hours and would get dehydrated.  He said most children can go 10 hours without getting dehydrated, and they can rehydrate him once he gets to the hospital.  It would be best if we turned around and went home and just called in the morning to see when we should come in.  Obviously, we disregarded his advice and came in.  Jayson was already beginning to get dehydrated so an iv was placed.  We were taken to the RTU.  We saw a GI doc in the morning who laughed when he saw our tube.  He told us it was nearly impossible to replace this tube.  There was only a 10% chance they could get it back in, and he would have to undergo anesthesia.  There would be a risk of perforation and discomfort.  He recommended we have an NJ placed down his nose again over the next 4 weeks until his stoma is 8 weeks old and we can switch out the tube.  He said that even if they were to get the tube back in, that it would likely not last another 4 weeks anyway.  An NJ was probably our safest bet.  I was furious to say the least.  We went to radiology where a radiologist tried to place the tube for 40 minutes.  Imagine pure horrid torture for your little 11 month old baby for 40 minutes.  The tube wouldn't go down.  My favorite moment was when the radiologist asked me if we could remove his cannula while he placed the NJ tube because it would make it easier.  Actually no.  He kinda needs it to breath.  But thanks for asking.  The tech got so aggressive with holding Jayson down that she partially pulled out his iv.  It was bleeding everywhere.  He was literally swimming and soaking in his own blood.  I'm scrambling to find paper towels, a towel, something and he keeps working and Jayson keeps screaming.  He told the tech to page our nurse.  Our nurse was in a completely different department of the hospital!  Jayson was bleeding all over!  He's screaming!  And the radiologist continues shoving a tube down his nose and throat.  I seriously wanted to cause him bodily harm.  So I took the tape off Jayson's arm.  I pulled the iv the rest of the way out.  I put pressure on it to get it to stop bleeding.  I found tape to tape it up.  Yeah, it's almost like I work there.  After 40 minutes, the radiologist said he couldn't get it in.  We went back to our room and waited for the next radiologist to get to work and we would give it another try.  She tried for 20 minutes.  No success.  It seemed to hit something every time, and it would coil.  It simply would not go down.  Jayse was tortured for nothing.  The GI doc returned and told us that we would put Jayson under anesthesia the next morning and they would try to place the GJ surgically.  Again, there was only a 10% success rate.  If it didn't work, they would be forced to replace the entire tube which isn't recommended until 8 weeks after surgery.  There would be high risks involved.  We were a nervous wreck, but we experienced a miracle!  They got the tube placed and it stayed in place.  We got to go home Sunday afternoon after nearly 3 days of being in the hospital for a tube replacement.  The doc told us to baby our tube.  He'd be surprised if it made it another 4 weeks.

December 5 I met with our GI doc who placed the tube.  She admitted that this is a tube she doesn't typically place in babies.  She said she chose it because they ran out of the tube they typically use.  She didn't feel it was necessary to tell me because "I was so insistent that it get done quickly".  I explained I was trying to avoid RSV season, but if she didn't have the appropriate medical supplies we definitely would have waited.  She said it didn't matter because we would replace it soon anyway.  I should go to the radiology department to set the appointment for the end of December and see what special supplies we might need.  She hasn't worked with a size 20 french Corpak tube before, and she feared we may need special supplies to switch it out.

 When I went to radiology, I got some shocking information:

• Placing any GJ tube in a baby under 2 is a high risk procedure and should be avoided whenever possible.
• Jayson's particular tube is measured at size 20 french.  That is a tube that is typically used in a large adult.  It should never, in any circumstances, be used in a child, let alone a baby.
• There is a high risk of perforation (which results in death) with Jayson's particular tube do to the method needed to pop it off to switch it out AND the fact that it's size is so large it nearly fills his entire bowel.  It can cause ulcers that could rupture.
• There has been a couple of deaths in the past couple of months with babies with the same or similar tubes as Jayson.  One was in critical condition from a perforation that morning and he had the exact tube Jayson had.
• To lower the risks, Jayson's crummy tube somehow needed to stay in 4-5 months before switching out.  But since it was pieced together, taped, and flimsy, no one expected it to last that long.

After some drama and meeting with the doctor then risk management, I was left without a plan or a solution. I was told the radiology and GI departments would be having a meeting and I would hear about what they discuss.  I never heard.  When I originally confronted the doctor she told me it was my fault since I opted to have the GJ tube to save his lungs (instead of the G tube), and because I insisted it was done quickly.  Mike and I decided the only thing we could do was completely baby this tube and make it last the 4-5 months radiology suggested.

Well, we did it.  It's been 4 months.  We are planning to switch it out in the next 2-3 weeks.  I had an appointment with our GI doc two weeks ago and it went surprisingly well.  We had a plan and she explained how she was going out of her way to make it right.  I was going to give her another chance.  I considered switching doctors, but it takes 3-6 months to get an appointment and I knew we couldn't wait that long.  I had to make this work.  Our doctor called me last week to tell me she spoke with a couple of the radiologists and each of them suggested a different tube.  One suggested a 16 french while the other suggested a 18 french.  We could choose from the AMT brand or the Kimberly Clark.  We needed to look up the pros and cons of each and let her know.  I could tell she knew very little about the tubes, so it was totally up to Mike and me.  We fasted and prayed hard for the past week.  We've asked those we know and trust for counsel and advice.  We had pretty much decided the 18 french was the best option.  We also discovered that AMT does not make a 16 or 18 french.  How interesting that our doctor suggested it when it doesn't exist.

As I went to Primary's today for our neurosurgery appointment, I had to get an xray for the appointment.  While I was in radiology, I decided to ask to see what the tubes look like that Jayse would potentially be getting.  This simple request turned into something I didn't anticipate.  I heard from a couple of people in radiology who once again informed me of the risks of this procedure.  They also informed me that as a result of my formal complaint, there was a big meeting between GI docs, radiology and surgeons so they could all get on the same page.  They established certain protocols and procedures for going about things in the safest way.  I was informed of my doctor's plan for Jayson's procedure.  She and one of the radiologists were privately meeting and discussing their plan.  It was NOT following the newest protocols.  It was breaking some of the new rules, and it was not safe.  I was also told that the 18 french was already ordered for my son, although I had not yet requested it.  The radiologists told me that the 16 french was definitely the safest decision for my son and we needed to quickly switch to a 14 french as soon as possible.  The 16-20 fr tubes were dangerous and greatly increased the risk of bowel perforation and ulceration.  Why was this not discussed with me by my DOCTOR???  Why wasn't the safest recommendation made to me in the first place instead of asking me to choose between two tubes?  Why wasn't protocol followed in planning his procedure?  Why aren't the safest of precautions taken when planning my son's procedure?  I just don't understand!!!

I left furious.  I was seriously crying and shaking.  Although I was not told anything specifically negative about my doctor by the radiology department, I decided right then and there I was done.  I need a new doctor, but I can't wait 3-6 months!  I need one in the next couple of weeks who can switch out this tube!  And I need a radiologist I can trust!  And I want this procedure done in the OR.  And I want a scope to check his stomach and bowels to see if there is any damage due to the current tube placed.  And I want the doctor and radiologist to follow the new protocol established.  And I won't negotiate or back down.

I spoke with risk management again hoping she could help me with these requests, and that did not go well.  I was told that there is really nothing they can do to help me.  They won't help me get a new doctor.  That was not an option for me.  I later got a call from risk management apologizing and we are now working on a plan.  One of our beloved doctors is going to get involved and I'm hoping she can help us find a solution.  If not, I suppose we will be flying across the country to go to another hospital.  I will NOT risk my son's life, especially for such a small procedure.  And especially when his life is at risk due to one of OUR doctor's mistakes.  I won't.  I will fix this, and he will be okay.  I'm just beyond exhausted.  Life is hard enough.  I don't need to deal with hospital politics on top of everything.  I won't play their game.  I will make sure that my son gets the absolute best care he can receive.  He deserves nothing less.

And THAT my friends, is the UGLY of tube feeding.  And unfortunately the saga continues until this &*%$ tube is out of my boy, and a safe one is inside.  Please send your thoughts and prayers our way. xoxox

Happy Valentine's Day!

Happy Valentine's Day to all of our friends and family!  We love you and thank you for your love and support!

The Good, The Bad, and The Ugly of Tube Feeding: Part 2

The Bad

I am going to be completely honest... I strongly dislike feeding tubes.  I might actually HATE feeding tubes.  I am grateful Jayson has one because it keeps him alive, and I try to keep a positive attitude by focusing on the positives, but truth be told-- they are not fun.

The NG - Feeding Tube down the nose into the stomach (A week in March)

• Jayson had to be held down while screaming, crying, choking and gagging while getting the tube placed.
• The tube had to be taped down, which caused rashes, blisters and skin breakdown.  Jayson has to have special tape ordered for his face so he doesn't blister.
• I had to replace the tube myself any time he pulled it out, which was 2-3 times.
• The NG tube is easily clogged.
• Jayson's reflux pill has to be cut, crushed, and dissolved so that it can be flushed down his tube.

The NJ- Feeding Tube down the nose into the intestines (March-end of October)

• Jayson was refluxing and aspirating with the tube in his stomach so he had to have the tube moved to his intestines.  Jayson had to go through a period of hunger when his body had to adjust to not having food in his stomach.  This lasted for a couple of weeks and was a terrible experience.
• The tube has to be placed by a radiologist any time it comes out.  He has to use an xray machine in continuous mode so he is exposed to radiation.
• Jayson has to be wrapped up in a blanket, towels, and/or an Ace bandage to hold his legs and arms down.  I have to hold his head and body still while the radiologist goes to work threading the tube down his nose, throat, stomach and carefully trying to loop it so it ends up in his jejunum (intestines).
• Jayson is crying, coughing, choking and gagging the entire time the radiologist is trying to place this tube.  This process many times took in between 10-40 minutes.  I was seriously horrific.
• The NJ tube came out dozens of times which required a hospital visit each time and exposure to all of the germs in the ER and a LOT of ER copays.
• With an NJ tube, Jayson has to be on a continuous drip of formula all the time.  He is hooked to a feeding tube 24/7.
• This tube is also taped onto the face which causes rashes, blisters and skin breakdown.  This tube had to be fastened even more securely than the other since it required a hospital visit every time it comes out just 1 cm.  
• The NJ tube starts getting gross and clogged after a couple of weeks.  When it's clogged, Jayson can't eat or get his meds and it requires that it is pulled out and a new one put in.
• If Jayson throws up with this tube, it can dislodge it and cause many problems.
• The NG and NJ both cause oral aversion.  Babies associate things in their mouths and noses with the discomfort of the feeding tube.  Therefore, they tend not to like food, binkies, or anything in their mouths.  They tend to also forget how to use their mouths to eat and swallow.  Jayson has only had some mile oral aversion issues.

The GJ- Surgically placed feeding tube in the stomach and the intestines (October-current)

•  This tube is entered surgically.  No one wants their child to have surgery.  This was supposed to be a simple procedure, but it was not easy for Jayson to recover. I seriously hate the idea of a foreign object surgically placed in his body.
• Jayson's stoma has to be cleaned every day and easily gets infected and irritated.  He also easily collects granulation tissue which bleeds and is painful for him.
• Jayson will permanently have a scar where his tube is in his tummy.
• His tube can pull out of his tummy so we have to constantly be watching Jayson so he doesn't pull it out, and so it doesn't get snagged.  If it ever pulls out of his belly, I have to open his emergency kit and pull out a tube with an end that looks like a cork and stick it into his bleeding stoma. It then has to surgically be replaced in the hospital. Luckily I have never had to do this.
• Jayson's particular GJ tube is more likely to snag and pull out of his intestines.  This happened in November and required a 3 day hospital stay and a miracle to get it back in.
• Every couple of months Jayson has to go under anesthesia to have a procedure to replace the tube.  There are risks associated with anesthesia and they are elevated with Jayson's breathing issues.
• This tube is also required to be running continuously so Jayson is constantly connected to his feeding machine, which is getting to be more difficult now that he wants to roll around, move and play.
• Again, if Jayson throws up it can dislodge the tube and cause lots of problems
• With placing and replacing this GJ tube there is a risk of stomach perforation, which often results in death.
• Babies often forget how to eat by mouth after having these tubes long-term.  Fortunately, Jayson does not seem to be having many oral aversion issues at this time.
• Jayson's belly needs to be vented often to avoid vomiting, gas, pain and discomfort.  This requires me to open his G-port and allow gassy air and some stomach contents to exit his tube.

Tubes in General

• It's difficult to go anywhere.  We have his pump in his feeding backpack, with his emergency kit, with his feeding bag, with his flushing supplies anywhere we go.
• Tubes clog.  When they clog, the machine wants to run but can't.  When it can't run, it spits out the tube which therefore feeds the bed, couch, rug, floor, etc.  Just in case you were wondering, the bed and couch are NEVER hungry.
• Sometimes the port to the tube extension pops open, or the G port used for venting is not sealed completely and Jayson is suddenly soaked in his own bile and stomach contents.  That. Is. Nasty.
• Tubes are messy business.  We have permanent stains on our mattress, Jayson's wedge, Jayson's co-sleeper bassinet, our couch cushions, our pillows, our rug, and many other household items from tube leakage, clogs, and medicines. 
• If only I had a dollar for every time I've gone to work with formula, medicine or stomach contents on my face, clothes or in my hair from a tube complication that resulted in me bathing in nastiness.
• Jayson's tummy is used to not having food.  Therefore, if the machine stops running or I forget to press run, it takes many, many hours for Jayson to realize he's hungry.  By that point, Jayson is typically at needing hospitalization to help with dehydration.
• Sometimes tubes are dislodged, kinked, in the wrong place, etc. and cause lots of pain and discomfort.  Because they are inside of Jayson, I cannot see what is causing his pain and discomfort without an xray.
• People stare.  This is a little better now with the GJ instead of the NJ taped to his face, but people stare at a baby with a feeding tube.
• All feeding tubes require supplies.  They may be different supplies, but we always have to have supplies with us and be sure to order them on time with our home healthcare company so we don't run out.  I always have to make sure the diaper bag is stocked with what we need wherever we go.
• I missed out on many months of breastfeeding and bonding with my baby.
• The feeding machine alarm goes off every couple of hours when it is time for more milk, which is sometimes during inconvenient times... like during a legislative session when we are about to present, or in the middle of my nap. 
• Jayson's formula has to be blended so it doesn't clog the tube.  Not a huge deal, but in the middle of the night the blender can wake up the baby, which is no bueno.

 I feel better after letting myself vent.  The feeding tube sucks.  No getting around it.  I honestly I associate the feeding tube with a lot of pain, anger and resentment.  When I think of the feeding tube, it takes me back to that first day Jayson had his placed.  See my old post My Worst Nightmare.  One minute I was breastfeeding my baby, the next minute the nurses were taking him downstairs for a quick test, and he comes up with a feeding tube.  I had no idea that there was even a small possibility he would need a feeding tube.  It was never brought up.  I had no idea that would be the last time I would breastfeed my baby.  I had no idea that would be the last time he would drink from a bottle.  I had no idea that would be the last time in a very long time I would see his smiling face without a tube taped to it.  I felt like my life changed instantly, and I had no say in it.  My baby was different and would be treated differently.  All in a moment.  I hated that day.  I hated that tube.  I still do.  We have recently had another major event happen involving the feeding tube that just adds to that bad taste in my mouth.  I will be sharing the "Ugly" of the feeding tube in my next post.  Thank you for listening and allowing me to be honest and vent my feelings.

The Legislature

My post on the Bad of Tube Feeding will have to wait.  I've been preparing ALL night for our 2 minute testimony for the legislature tomorrow about the Early Intervention Program.  Jayson and I will be attending a legislative committee meeting attempting to convince congressmen to preserve the funding that is threatened to be cut.  If it is, there will only be enough funding for 1% of the delayed baby population.  Right now, EI is servicing 7%.  It would be devastating for all of those babies to lose services, and potentially Jayson.  Here is my testimony and my plea.  I hope it touches their hearts in the morning!

I want you all to imagine one of your children at 2 months of age.  Small, cute, perfect.  Imagine that one day in a flash your life changed.  He suddenly was on oxygen, had a feeding tube placed down his nose, and was hooked to all sorts of monitors.  Just as you’re digesting all of these changes, a doctor tells you words that take your breath away and break your heart, “Your child has a genetic syndrome.  He will not develop like typical children; he will have disabilities.  

This is our story.  Jayson’s health problems and delays were difficult to digest.  We received comfort knowing that we would not be doing it alone.  Two different Early Intervention therapists have been coming to our home to provide services for feeding, speech, occupational, physical, and vision therapy.  That’s a lot of therapy for a baby!  For those of you who had children, I bet many of them just rolled over one day.  I would imagine most of your children learned to pick up a cheerio and eat it effortlessly.  Not my son.  He has had to be shown and taught how to do natural things, and he has to practice a lot, every day.  I have two master’s degrees in elementary education, but I did not know how to teach a baby to do these things.  I didn’t know there were nine developmental steps to getting a child to pick up and eat a Cheerio.  Without the help of the therapists, I do not think Jayson would have learned to pick up a Cheerio last week.    In fact, I do not know that he would be lifting his head, pushing up on his arms, tracking objects with his eyes or saying momma at this point in time without the services he receives.  Jayson’s developmental progress and ability to meet his potential is in your hands.

Imagine the skills Jayson will acquire by the time he enters elementary school.  Imagine Jayson’s friends who may be caught up by the time they enter preschool.  Imagine the money saved by addressing developmental delays early.  Imagine the impact your decision has on Jayson and his friends.  Help them reach their potential.   Please, give this program the funding it needs to serve Utah babies and families.  Thank you.

Tristin West

The Good, The Bad, and The Ugly of Tube Feeding: Part 1

The Good

I'm sure many of you are thinking, "What is good about tube feeding, other than the whole saving his life thing?"  You're right.  The obvious advantage of tube feeding is that it has saved my son's life.  But that's not what I'm focusing on in this post.  I'm going to focus some other positives that might not be as obvious, and some of them might be even humorous:

• I get more sleep than a typical mom.  Jayson's feeding bag will hold 6 hours of food at a time, so I haven't had to wake up at night to feed him.  In fact, I don't have to wake up early in the morning to feed him.  Anytime he is sleeping, I can sleep.  I don't ever have to wake him to feed him.  When his machine goes off, I pour some more milk in and go back to bed.
• It is a lot easier to keep a tubie hydrated when they're sick.  I don't have to worry about Jayse refusing to eat while he's sick or even nauseous.  In most cases, I just keep his feeds running and he stays hydrated.
• I didn't have to feel a lot of shame when I quit breastfeeding; instead I was a hero.  Jayson stopped eating by mouth at 2 months.  This was so sad and hard, and I was determined to keep pumping.  My supply really decreased, but I continued to pump until Jayson was 6 months old.  At that point, I decided I was done.  I didn't want to keep pumping, and my supply was nearly gone.  Instead of feeling guilty, embarrassed and ashamed that I quit, I felt proud.  Nurses, friends and family admired the fact I was committed for that long.
• I haven't had to hear Jayson's cry due to hunger.  This little fact has diminished the number of reasons why my child might cry during the day.  It may explain one of the reasons why my son has been such a happy, easy baby.  His body is constantly getting nourishment.
• I never have to worry about how much he is eating.  I actually know how much to the very milliliter that he is eating each day.  This makes it very easy to manage his weight.  Little J was failure to thrive until about 5 1/2 months old, and since then he has been steady at a perfect 50th percentile.  If he's going through a growth spurt, our doctor will instruct us to increase his rate.  If he's gaining to quickly, we level off his rate for a while.  It is great!
• Ever had a hungry baby screaming in the back seat of the car as you're driving as fast as you can to get home to feed the starvin marvin?  Nope, I haven't. :)  Tubie takes care of that for me!  And roadtrips are a breeze!
• Feeding tube supplies are good for many things beyond tube feeding.  You can use syringes of all sizes for making pancakes, baking cookies, frosting a cake or cookies, squirting your husband or misbehaving cat, or they make very fun bath toys!  I have also used Jayson's medical tapes for many household fixes.
• Although I missed this bonding experience, no one needs to hold the baby or the bottle while he eats.  He can play, roll around, sit, sleep, watch a movie, and kiss his mom all while getting some nums.
• Because Jayson is exclusively tube fed, insurance has been providing our formula for us over the past couple of months, which saves us hundreds of dollars!
• I've cleaned many neglected places in my house due to "tube sprays"... the walls, the ceiling, behind pictures, the blinds, the windows... you name it, it's been sprayed.
• It is easy peasy to get Jayson to take his meds.  I just put them through the tube!  We have never had to force meds down our child's throat, hide them in his food or convince him they are tasty.  Down the tube they go!
• We haven't tried this one yet, but I'm pretty sure the tubie will get us to the front of the lines at an amusement park!

 So there you have it! I bet you never knew there were so many positive sides and benefits to tube feeding!  But wait until tomorrow's post, the Bad of tube feeding, before begging the doctor to put in an NG tube in all of your hungry munchkins!

I Love my Tubie!-- J's Feeding Equipment

Just like most people, I had no idea there was a Feeding Tube Awareness Week.  In fact, before Jayson, I didn't know anybody with a feeding tube and I knew next to nothing about them.  Well now, I guess I could be considered an expert!  Throughout this week I want to write some posts focused on Jayson's feeding tube and feeding complications.  There are a lot of mixed feelings I have regarding his tube, and we had a HUGE fiasco regarding his GJ tube placement in October that I have been reluctant to post about.  I think I'm ready to get it out in the open this week.

For today, I'm going to make a quick post about his feeding tube equipment.  Jayson used to have an NJ feeding tube.  He received that tube in March of 2011 and didn't get to remove it until October of 2011.  The NJ tube went down his nose, throat, stomach and wound through his intestines.  It was taped to his face to keep it in place.  Jayson has incredibly sensitive skin and is allergic to the most common tape used, Tegaderm.  We had to get special supplies from the wound team to protect his face.  We could not easily get those supplies, so we ended up having to buy them out of pocket.  This was rather expensive, but worth it.  Jayson needed Cavalon wipes to prep and protect the skin, then a cooshy adhesive strip called Mepilex that I would cut to go under his tube to protect his face.  We then would put the tube on top of the Mepilex and carefully place the sheet of Mepore clear tape on top.  This process was incredibly challenging and required two people.  It was tortuous for Jayson because he didn't like anyone touching his face.  This tape job would last anywhere from 1-3 days, and the process would need to be repeated again.  It was definitely NOT one of my favorite things to do.  And with every tape replacement was the chance the tube would be misplaced.  If it came out just 1 cm, we would have to go back to the hospital to have it checked by x-ray and possibly replaced (which was another horrific experience).  Due to all of this drama, we were excited about the surgically placed GJ tube.

Now that we have a GJ tube, it is not necessarily any easier.  We just traded one system for another.  Jayson's whole in his stomach is called his stoma.  His stoma needs to be cleaned daily.  After his bath, I use the Cavalon wipes to remove the old tape and prep the skin for new tape over his stoma.  I take off the old gauze and throw it away, and clean the stoma area with Q-tips and sterile water.  There is always drainage, sometimes more than other.  There is often times some blood as well.  Some scar tissue can build up around the stoma, which is painful;  it is called granulation tissue.  Jayson has some granulation tissue so we are using a prescription cream on it right now.  I then place a square of gauze around his stoma and cut a strip of tape to keep it in place.  I then replace the tape below which is intended to protect the tube and keep it in place.  There are two ways Jayson's GJ tube can come out.  It can pull out of his stoma.  This would be very bad, as it could tear and perforate his stomach.  The long, narrow tube itself can pull out of the unit which is nearly impossible to replace in his current tube (this happened in November).  We are ever so protective of his tubie!

Jayson's current GJ tube has two ports.  One is a G port going straight to his stomach, and the other is his J port going into his intestines.  Right now, he gets everything through his J port.  We are hoping that sometime soon we can try some formula and meds in his G port.  Up to this point, Jayson has not been able to tolerate food in his stomach.  He refluxes and then aspirates the food and reflux into his lungs.  That is why we have to have the tube in his intestines.  He still refluxes, but not as often and not usually food.  This provides protection to his lungs.  We have a swallow study scheduled at the end of the month, and we hope that he has improved in his ability to swallow.  If so, we will be trying some feeds in his G-port so that we will be closer to removing the tube!

Both the NJ and the GJ tubes have required a feeding pump which we keep in his feeding backpack.  One day he can wear this around!  The bag itself is replaced every 24 hours and is refilled with his formula throughout the day.  The machine is programed to run until the food runs out, and it runs right now at 55 mls per hour.  The machine will let us know if there is a kink or clog in the tube, or if the food runs out.  Each feeding lasts about 4-5 hours and then we have to refill the back and prime the tube.  It easily connects and disconnects from Jayson's feeding tube.

For us, the feeding tube has become a way of life.  It has kept our little man alive, and it no longer seems complicated.  We are fortunate to live in this time when we have great technology available to us.  Without it, our son would not be here.

Highs and Lows

Today was both an amazing and awful day.   One of the best, and one of the worst.  That is how it goes-- extreme highs and extreme lows.  Steps forwards and steps backwards.  Today, we had only steps forward, but even steps forwards can be extremely difficult.

Jayson had his appointment to get his stitches removed today.  I knew it was going to be awful.  We have done this before, and Jayson is getting smarter.  He would know what to expect.  We both would.  He also would be getting his synagis shots to help prevent RSV, and I was planning to request a blood draw as well.  Poor Jayse Face.  I woke up extremely anxious, and I had a difficult time getting anything accomplished all morning.  I found myself forgetting what I was doing, pacing, wringing my hands, holding my breath.  I was a mess.

We got to our appointment early.  That is practically a first.  We spent some time checking out the gift shop and picking up a couple of clearance steals.  As Mike and I were pushing the stroller and walking towards our doctor's office, we noticed an adorable Asian baby.  I couldn't help but stop and talk to this cute 4 month old little guy.  His mom was so sweet and friendly.  Her English was limited but we managed to communicate.  Another couple walked by with their 1 year old toddler, and they stopped too.  We all began talking about our little boys, baby hair, shots, baby shoes, weight gain, and stresses of being parents.  It was wonderful.  It was one of the few moments I have experienced where I felt like a normal mom talking about normal mom things.  I cannot even describe how amazing it felt.  When these ladies saw my little guy, they didn't see an oxygen cannula or wires, tubes or cables.  They saw curls and a big smile. 

We got in the room, and it's like Jayson knew what was coming.  He started getting anxious and fussy right off the bat.  Our doctor came in and counted the sutures; he wanted to make sure he got them all.  The resident didn't do that the first time around.  He asked me to find a comfortable position with Jayson and he started going to work.  Distraction typically works well for Jayson.  Last time, he did well watching his Yo Gabba Gabba video.  This time, he had little interest.  He knew what was happening.  The doc cleaned the area and moistened the scabs to help the sutures come out.  Jayson did not like this.  I'm assuming it stung or he had a reaction to the cleaner.  He already was incredibly upset before the doctor even got started.  The doctor took his time and carefully pulled on each stitch with tweezers and carefully clipped with his scissors.  Unlike the resident who hastily cut into his skin to remove the past sutures.  The doc gave Jayson breaks to calm down.  He rubbed Jayson's head and back, told Jayse he was sorry, and made calming noises.  I already knew I loved our pediatrician, but today confirmed it.  He is such a good man.  Some of the sutures were really difficult.  Some of the scabs wouldn't give and were covering the sutures.  It took the doctor about 20-30 minutes to get them all out.  For the last two, I had no choice but to hold Jayse down with a good amount of force.  It was the only way.  Jayse was inconsolable and there was no way he would let us near him.  I felt awful.  Holding your child down while he is kicking, hitting, bucking and screaming is beyond horrifying.  He kept mumbling 'mama' and looking at me with this look in his eyes like he was confused.  He didn't understand why I was helping the doctor hurt him. Why was I holding him down?  Why wasn't I holding him while he cried?  Why was I ignoring his cries and screams?  It felt so wrong, and I felt like the most terrible mother on the planet.  It was finally over, but neither of us felt better.  Jayse kept crying and crying.  He felt so betrayed, scared, and confused.  I felt so guilty for betraying his trust.  Minutes after the last suture was pulled, his started coughing hysterically and couldn't catch his breath.  He was desatting and turning purple.  He finally got a couple of breaths in to only start coughing again until he started throwing up mucous.  I did that.  I made him that upset.  I felt awful. 

Jayson finally started getting tired and began to fall asleep on my shoulder.  Just as he calmed down, it was time for his synagis shots.  I set him on the table and he knew something was going to happen.  Again, he looked at me with those eyes.  Betrayal.  False sense of security.  One minute I'm comforting him, and the next he's getting two HUGE needles in his legs.  I couldn't grab him fast enough.  I rocked him, snuggled him, kissed him all over and told him it was done.  This was one of the hardest days I have been through. 

We got Jayse in his carseat easily, which he typically fights.  He let out a large sigh once he was strapped in.  He knew he was safe in his seat and that it was really all over.  We couldn't wait to get him home and love on him and spoil him with love and kisses all night.  This little boy has been through so much.

After such a difficult day, I did not expect such a great turn of events.  I didn't expect Jayson to even be interested in eating, but I thought I would try.  I was wrong.  We have been working hard on feedings for the past 3 weeks, but today was a huge break through.  Normally I have to prompt him to open his mouth, and even fight him sometimes.  He has also been spitting out a lot of his food while eating.  Today, he anticipated the feeding.  He opened his mouth wide when he saw me get a spoonful.  He dove for each bite as I offered it to him.  He effortlessly swallowed every bite.  It was beautiful and amazing.  I kept adding more and more baby food.  He ate 1 1/4 jars of baby food and was begging for more.  I then offered him a veggie stick.  These are always difficult for him to eat, but an important part of his therapy.  We are lucky to get a bite or two in.  Not tonight.  He ate the entire stick.  He opened his mouth, closed it around the stick, sucked on it until it was moist, bit down to break off a piece, sucked on it, chewed it and swallowed it.  I watched his face through this process.  He was intensely focusing on every little movement of his mouth.  I couldn't help but think how easy eating comes to most babies.  They don't have to focus on every little step.  They don't scrunch up their foreheads and close their eyes as they concentrated on eating.  They don't get the biggest smile on their face because they are proud of their victory over that piece of veggie stick.  How fortunate I am to be able to witness such a moment.  I offered Jayson a Ritz cracker, which he is typically really fond of.  Not as much tonight.  He took a couple of bites and began fussing.  I assumed he was getting tired so I set it down on his tray.  I saw Jayson look at the Ritz cracker, reach for it and miss.  He reached again, and touched it.  He picked up his hand placed it on the cracker, and picked it up.  I started celebrating and he attempted to throw it but it landed in his lap.  My crazy toddler attempted to throw his food.  I dreamed of this moment!!!!  I put a puff in Jayson's mouth to see if he wanted a couple before we finished our feeding session.  He accepted it so I grabbed another.  He started spitting the puff out, so I set the new puff on his tray and helped the stray food back into his mouth.  I looked down to pick back up his puff and it was gone.  I looked around, no puff.  I saw Jayson's right hand was in a fist.  I wondered... did he pick it up?  No way, it was way too small.  Suddenly, he opened his fist and a puff fell on the floor.  I started crying.  What a miracle!  Perhaps it was unintentional, but even so, he has never held something that small in his fist before!!!  I set down a few more puffs on his tray and watched.  His eyes stared right at the puffs.  He lifted his hand and set it on top of the pile of puffs.  He closed his hand around the puff and picked it up.  I still wasn't sure it was in there... but it was!  He intentionally picked something up!  He intentionally picked up food!  Sooooo many firsts in one night!  So many miracles!  After his feeding session I just sat and watched my son and let the tears stream down my cheeks.  He looked so proud, and my heart has never felt so full.

I know it seems trivial.  My son ate today.  He picked up some food.  These are giants I didn't know if my son would ever tackle.  I did not have these expectations, as most parents do.  He is making huge strides.  He is surprising and inspiring me every single day.  I am so blessed to be raising a very determined, persistent, amazing little boy.  He is going to do amazing things.  I always knew that, and today I was one of the days I got to witness it.