Wednesday, October 21, 2015

Three Years Old!

It seems surreal that Gavin is now three years old.  When I think back to when we received a prenatal diagnosis of Down Syndrome, heart complications, GI complications and many unknowns in regards to survival it seems like such a foreign place to me.  It seems like ages have passed since we spent hours by his hospital bed praying desperately that God would spare our son.

Fast forward three years and our world is completely different and so full of true happiness.  Gavin is thriving in so many ways!  He's pulling up to stand and getting so close to being ready to walk.  He is doing great with eating purees and is well on his way to eating solid foods.  He is signing and babbling all the time.  And he is always giving kisses.  The kid has never met a stranger.  He wants everyone to say hi to him and hold him so that he can give them a kiss. 

We joke that he's like a little old man because Gavin will yell at you if you walk into the room and don't say hi to him.  He will also throw your cell phone across the room if it's around when you're supposed to be spending time with him.  If you're holding him and aren't looking at him or giving him your undivided attention, he will bring your face back to his so that you are looking at him when he wants your attention.

His laugh is infectious.  When he really starts cracking up at something, it makes us all laugh until we start crying.  He is also starting to hit the troublesome toddler stage a little bit.  If Lorelai gets too rough with him, he has started holding his own.  They love each other so much and they play amazingly well together, but on the times when they fight...well they fight just like typical siblings do.  Developmentally, it is great to see!  Gavin is extremely opinionated and it has been amazing to see him go from being indifferent of so many things to really caring about and having true opinions on what he wants and doesn't want.

So to be where we started and where he is today is nothing short of a miracle. 

There are always underlying health concerns.  Gavin doesn't have a pulmonary valve in his heart and it is causing pressures to rise in the right chamber of his heart.  At some point, he will need to have another open heart surgery and then hopefully any valve replacements after that can be done through an artery in his leg.  The procedure has already been done in pediatrics elsewhere in the country, but the next surgery would involve putting a conduit in place for future valve placement.  The trick is balancing intervening when he is so young with making sure something is done before the pressures get too high.  If the pressures grow too much before intervention, there is a risk of losing the ability of the right side of his heart to work.  We don't know exactly when the next surgery would be but it will be sooner than we initially expected.  He still has two hernias that are monitored regularly and luckily no surgery is needed for either of those right now.

We are also waiting for a swallow study to see if anything from a medical standpoint is impacting his ability to eat solid food.  Life is full of doctors and therapists, but it has been a long time since he has had a hospital stay.  Our normal is always evolving but there is such relief in not living in hospitals or with a colostomy anymore.

I know this year is going to be full of more incredible breakthroughs for our little guy.  This is going to be the year that he walks and talks.  I can feel it.  And I cannot wait for the day that I hear that little voice say "I love you."

Wednesday, November 26, 2014

A Season to be Thankful

It has been a LONG time since I've updated everyone on Gavin.  He's two years old now!  It's amazing how far he's come over the past two years.  He's a superhero for sure.  Things have been super busy and Gavin has been accomplishing a ton of things!

We were able to start an aggressive Early Intervention strategy.  Gavin receives therapy services three days a week right now.  He gets feeding and speech therapy, physical therapy and developmental therapy.  We're going to add occupational therapy soon which means four therapy appointments a week.  That's a lot!  It does wear Gavin out pretty quickly, but taking such an aggressive intervention approach has allowed Gavin to skyrocket developmentally.  When we started in June, Gavin wasn't sitting unassisted, he wasn't interested in toys, he couldn't eat food or take clear liquids and he wasn't very communicative or interactive with others.

In five months, he is now sitting on his own and transitioning from laying down to sitting on his own. I had literally just talked to one of his therapists about wanting to work on the transition from laying down to sitting when I went to check on Gavin in his room, because he was laughing hysterically.  I went to see what he was laughing about and he was sitting up in his crib by himself!  He's also moving in circles on his belly now and scooting forward and reaching for things that he wants.  He's starting to get his knees under his body and rocking back and forth.  This kid is going to be mobile soon!  He loves working on the exercise ball which has really helped him develop great core strength.

He's also playing with toys now and playing interactively with us.  He likes to play catch.  He is studying his toys more and making purposeful sounds when he's playing.  Babbling with purpose is a huge achievement for him!  He loves looking at himself in the mirror and giving himself kisses.  He's a ham.  He is rotating his torso to reach for toys and is showing emotion when he doesn't get a toy he wants fast enough.  Five months ago, he was indifferent with toys and wasn't aware if one was taken.  Today he has specific toys he likes to play with and he makes consistent decisions to choose those toys.  He is aware when something he wants is gone and is able to express that emotion!

Five months ago, Gavin couldn't swallow purees or figure out to use his tongue to move the food to the back of his mouth to swallow.  Now, he takes twenty to thirty bites of food consistently and he enjoys it!  We still have a lot of work with tongue control and chewing, but he is able to take different flavors, different consistencies and different temperatures!  He will take a few sips of water out of an open cup and we are working hard on learning how to drink from a straw.  As far as speech, his receptive communication is fantastic.  He understands what we say to him and when we tell him to do things.  He is mimicking behavior and finally did his first sign last night by mimicking me when I signed "finished".  The joy of seeing him communicate with sign language was overwhelming.  That is such a significant milestone and we have been working hard on sign and spoken language.  This was the first big break through.  I know he will speak one day and in his own time.  But I can't wait until he can communicate with us more through sign language until that day comes.  I am so excited for him to be able to communicate what he wants.  We're close!

We have been seeing our standard group of specialists - cardiology, surgery, pediatrician, ENT and ophthamology.  Gavin still has pulmonary stenosis which we closely monitor and he needs his pulmonary valve replaced and his tricuspid valve is leaking.  In a couple of months, we will repeat a lung profusion study to see if we need to place a stent for the pulmonary stenosis or if the last angioplasty is still holding.  We're hoping that addressing the stenosis will allow us to prolong surgery for his heart valves, but that also depends on pressure levels in his heart.  He is consistently growing and his vitals are great so hopefully we won't need surgical intervention for a while.  We just had our last appointment with the surgeon.  Gavin is officially healed and cleared from his surgery in January.  He hasn't had any complications in the recovery process, but he is at lifelong risk for a serious infection so we just have to be aware and recognize those symptoms if they arise.  Gavin has two abdominal hernias that he will eventually need surgery on, but the surgeon wants to wait as long as possible to let Gavin's insides heal from the other four abdominal surgeries he's had.  The surgeon has transferred us to a GI doctor to follow long-term with Gavin's Hirschsprung's disease.  GI will help us work out a nutrition plan and teach us long term care plan to manage the Hirschsprung's.  So we don't need to see the surgeon again until it's time for hernia surgery.  But we'll replace those appointments with GI appointments now.  Gavin had tubes placed this summer and the surgery was the best one yet.  Gavin came off anesthesia with no problems (besides crankiness) and he had absolutely no cardiac or breathing issues in the 24 hours following surgery.  He had a sedated hearing test during that procedure, because all hearing tests up to that point had been inconclusive.  We had no idea if Gavin had hearing loss or not.  With the tubes placed, Gavin passed the hearing test with flying colors!

We have also been back to the Down Syndrome clinic.  The doctor couldn't believe that Gavin was the same kid she saw back in May.  Gavin has grown so much physically and developmentally and the doctor said she never would have expected so much progress in such a short amount of time.  Usually, the Down Syndrome clinic is a once a year visit, but they wanted to see Gavin back sooner because they were worried about his growth.  After this visit, we don't return for a year!  We got great nutrition advice for moving forward with feeding therapy and transitioning Gavin from a primarily bottle/milk diet to a more mixed diet while balancing his Hirschsprung's during that transition.  The nutrition will work closely with our feeding therapist and our GI doctor to have a team approach to moving Gavin's diet forward safely, but aggressively.  All of his blood tests are normal and he's healthy!  He is just small for his age.  He is 21 lbs now, but he feels like 30!  It is such a relief to be over the 20 lbs mark, know that his nutrition is giving him all the  nutrients he needs despite not getting a significant portion of solids and to know that he is steadily growing.

I still can't believe he's two!  He goes to preschool with Lorelai and he loves it.  His teachers are very proactive about working with his therapists and helping Gavin progress in class.  He is the only non-mobile kid in the class, but they were so wonderful to take him in and take such great care of him.  They have noticed that he interacts more with the other kids in the class than he did three months ago.  Lorelai loves walking him to class and seeing him on the playground.  He is thriving there!

I think that captures most of what we have had going on.  It's been super busy over here, but Gavin is making incredible progress.  All of his therapists and doctors are amazed at how far he's come since birth and especially over this last five or six months.  He is such a happy and cuddly kid.  He's only had to have two surgeries this year and certainly being able to recover and grow and just be a kid outside of the hospital has really helped Gavin be able to meet so many milestones this year.  As always, thank you for all of your prayers, encouragement and support!

Thursday, May 8, 2014

First Visit to the Down Syndrome Clinic

We have been BUSY with doctors this past month.  We have so much to be grateful for and our little man never ceases to amaze me with his strength and perseverance.  In April, we were making the rounds with doctors to coordinate ear and eye surgery for Gavin.  We have tried glasses and patching and were waiting on drops to help Gavin avoid eye surgery.  That process started nearly a year ago and every appointment has led us in the direction of surgery.  So now that the major surgeries have been completed, we were finally able to have Gavin's surgical consult for his eye operation.  We went in expecting to get a surgery date.  After careful evaluation and a second opinion, the doctor concluded that there is absolutely evidence of the problems he had been diagnosed previously and there was no need for further intervention.  No more glasses, no more eye patching and no surgery!  It was such an incredible blessing and relief to walk out of a surgical consult with the news that no surgery is required.  Gavin still needs surgery for his ears and he has an abdominal hernia at his old colostomy site, but his eyes are doing great!  Now, we only need to coordinate with two clinics instead of three.  So nice to see our little man get a much needed break.

Last week, we had an appointment at the Duke Down Syndrome Clinic.  I was excited about the visit, because I wanted answers for why Gavin hasn't gained weight in 9 months and how to progress developmentally.  At 18 months old, Gavin is developmentally 7 to 9 months old and it feels like we're at a stalemate.  To go somewhere so full of hope and answers was something I very much looked forward to.  First, we met with a geneticist who discussed Gavin's medical history and our medical history.  She told us not to stress about Gavin's development.  She said that Gavin has been through some serious surgeries and serious recoveries and that he is an incredible little boy to have survived what he has survived.  Now that things have calmed down, we can focus on development.  She reminded us to not lose sight of what Gavin has been through and to remember that coming home from the hospital is not synonymous with recovery being complete.  His little body went through more in 15 months than most people go through their entire lives.

Next, we met with a social worker who gave us great insight on various special needs programs and opportunities to look into to get Gavin extra help and aid as he gets older.  Some of the waiting lists are five or six years long, so knowing to get him on those lists now is crucial for making sure we prepare for his future.

A speech and feeding therapist met with us after that.  This was a meeting I really wanted, since Gavin has trouble with eating solids and isn't growing.  I don't want my little man to end back up on a feeding tube.  She took the feeding issues we mentioned and met with a nutritionist to figure out how to move forward.

Then, FINALLY, we met with the lead doctor at the Down Syndrome clinic.  She was looking over Gavin's records and taking in what all of the other people we met with recommended during our visit to get a comprehensive picture on Gavin.  She walked into the room and said, "First things first:  you two are marvelous parents."  That just took my breath away.  I know that other parents who have kids with developmental delays will understand this.  When your child struggles and doesn't progress like they "should", you really beat yourself up as a parent.  Am I doing enough therapy?  Am I pushing him hard enough?  Am I doing too much therapy?  Is he exhausted?  Why can't I get my child to eat?  What am I doing wrong?  Why isn't he crawling or putting weight on his legs?  What else should I be doing?  That is the mindset that I went into this appointment with.  A pleading for some medical professional to tell me what I was doing wrong and what I need to change to best help Gavin.  I couldn't help but smile when she made her comment about us as parents.  My thought was, "This is a doctor that really does get what we go through and I guess she knows what parents in the DS community need to hear."  How awesome that she takes the time to let us know that we're doing ok.

Her next comment was, "Gavin is one tough kid.  It is incredible what he has been through and that he is sitting here now smiling and so well behaved."  (Then Gavin started crying and she said she was going to take the last part back. Lol)  She recommended speech, feeding and physical therapy to help Gavin progress developmentally.  But she also reminded us that Gavin is a miracle and that he has survived more than most patients that she sees.  And now that he has overcome so many seemingly impossible obstacles his first year of life, we can now breathe and work on his development.  She has put priority on his feeding, nutrition and weight gain, but she said overall she's not worried.  He hasn't had a chance to just be a baby and grow like most babies do, but this year should be his year to just be a baby.  That warmed my heart.  I haven't ever thought of things like that.  And I really forget most days that our norm is not the world's norm.  So to step back and hear that Gavin is doing awesome was something I really needed and didn't even realize it!

Today we had an official speech and feeding therapy consult.  I was a little dejected afterwards, which is what reminded me that I needed to write a post tonight.  We have too much good news to get discouraged now.  They recommended that Gavin go to speech and feeding therapy three times a week.  THREE times a week!  That doesn't include his physical therapy appointments, specialist appointments, primary care appointments and somehow we have to figure out how to work in between all of it.  That is so much intervention and care and I don't mean to complain, but that many appointments gets to be overwhelming after a while.  And it gets to be exhausting for Gavin.  We will absolutely do whatever it takes to support him and get him the care he needs, but hearing how much help he requires just leaves me dejected.  Back to the thoughts of what haven't I done?  What else could I be doing?  How can I help him more so that he doesn't need this many appointments and therapies?

So I made myself go back to when I found out Chris was deploying knowing all of Gavin's health complications.  The first moment I saw Gavin in the ICU and everything was so REAL for the first time.  Seeing the first scar on his perfect little body. Watching him crash in the ICU.  Sitting in the waiting room while he went through open heart surgery at 18 days old waiting for the dreaded call no parent wants and few have to be in a position to wait for.  Realizing that I would have to put a feeding tube down his nose and throat.  Finding out part of his colon died.  The moment seeing a colostomy on my child weakened my knees.  Learning to care for an ostomy.  The many gut wrenching moments I handed my son over to a stranger with the faith that they would save his life or improve his quality of life.  And going through all of those past moments and those feelings put our current challenges into a completely different perspective.  None of it seems so overwhelming anymore.  People have it so much worse than we do.  Heck, we've had it much worse than we do now.

We have great medical care.  We have a great support system and so many people lifting Gavin in prayer.  We have so much to be grateful for and are blessed more than most.  We have our little miracle, who apparently isn't quite finished being so miraculous.  He has changed my heart and soul forever.  Thank you so much for continuing to follow our story and for keeping Gavin in your prayers.

Tuesday, April 22, 2014

18 Month Update

Gavin is now 18 months old!  It's hard to believe that much time has passed on this incredible journey.  I still get tears in my eyes sometimes when I hold him and I can't help but thank God for the miracles he has performed in our lives.  The baby that would have to be a medical miracle to survive...was born a miracle and survived!  Gavin has the most loving and adorable personality.  He still loves cuddling and his smile and laugh are truly infectious.  He is babbling more these days and meeting some milestones that we have worked months together to achieve.  He is able to sit on his own for longer periods of time, he is reaching out to grab things, putting more weight on his legs, making progress with eating and he is always blowing kisses.  He just did his first sign this past week by signing milk!  I am so thankful for each and every milestone.  Feeding is still a challenge, but we made progress this past week that made me literally jump for joy.  Most of us take learning and knowing how to eat solid foods for granted.  I have learned so much on the technical nature of feeding that I never thought about before.  Gavin is working hard at it and certainly making progress, but his nutrition is primarily coming from formula and pediasure.  We have been working closely with our doctors to find ways to help Gavin put on weight while we work through feeding therapy skills.  He is 18 pounds now and has been that same weight for about 9 months with no gain.  While he does have some cardiac concerns, those issues do not seem to be contributing to his lack of weight gain.  So our next step is to meet with a nutritionist and possibly do some blood work to see if there is anything else going on.  He's getting plenty of calories, but those calories aren't translating to weight gain.  Hopefully, we'll get some answers for how to help him there in the next month or two.

May is going to be a big month for us.  Gavin has eye surgery and ear surgery coming up.  Both are fairly time sensitive to prevent any long terms vision or hearing loss.  The surgeons are working hard to schedule the procedures at the same time, but we have to align the schedules of both surgeons, plus have the cardiologist give the blessing for his heart to undergo anesthesia and surgery, determine if he will have a cardiac anesthesiologist or a regular anesthesiologist and schedule post op care since Gavin usually has to recover in ICU due to his reaction to anesthesia.  Around June, we will get a surgery date from our general surgeon to repair an abdominal hernia Gavin has developed at his last abdominal surgical site.  Then, he goes back to the cath lab in August in an attempt to stabilize growing pressures in his heart.  Whew!  And with all of that, this year is still ten times easier than last year.  We are making so much progress and this kid goes through all of these trials and tribulations like a champ.  With milk and a rocking chair, this kid can make it through anything.

Now to share some AWESOME news of answered prayers.  Last July, Gavin had a sleep study that showed his oxygen saturation levels dropped below 80, 116 times an hour.  His brain had to wake his body up 121 times an hour to remind his body to breathe.  Gavin had SEVERELY obstructed sleep apnea.  The result of that was to have his tonsils and adenoids out.  We just repeated the sleep study last month and Gavin's oxygen saturation levels NEVER dropped below 90!  On top of that, his brain woke his body up ONCE to remind it to breathe.  We knew without improvements, that there would be the possibility of putting him on oxygen when he slept, other surgical options and possible cardiac intervention.  But none of that was necessary, because Gavin shocked us all (again!) by having such an amazing recovery.  We are so grateful to that surgeon.  Never underestimate the power of good news!

Please keep our little man in your prayers.  His little body has some more fighting to do.  Luckily, he's more of a fighter than anyone I have ever known.  I am blessed every day to be his mommy and to be surrounded by family and friends that encourage and support us.

Sunday, February 9, 2014

The Next Chapter

The first week of January, Gavin had his sixth operation, which was a pull-through procedure to reconnect his intestines and close his colostomy.  We spent the night before surgery in the hospital with Gavin while he had a bowel prep and lab work done to make sure his body was ready for surgery.  The surgeon told us the procedure went beautifully.  We knew anesthesiology was going to attempt to take Gavin off the ventilator in the OR in hopes that his surgery in November to remove tonsils and adenoids would have helped with some of the complications he has experienced with anesthesia in the past.

However, the anesthesiologist came to speak with us in the waiting room about half an hour after we spoke with the surgeon.  She said that Gavin was given 1/4 of the sedation he needed for surgery and she had the surgeon use a local anesthetic on Gavin's belly.  But they were still unable to wake him so he was sent to the ICU on the ventilator.  It took more than 8 hours for Gavin to wake up in the ICU.  We had a nurse dedicated to Gavin during the whole process.  She rarely left the room and made sure someone else was in the room if she had to do something else.  At one point, Gavin rapidly turned a deep red color from head to toe.  (Minus all of his scars.  They stood out bright white against the deep red of his body)  All of his monitors started beeping and his temperature was a little over 103.  Within a minute, the ICU doctor was on the phone with surgery and nurses and respiratory therapists surrounded Gavin's bed to care for him.  The response was amazing.  Within an hour, his temperature was back down to normal levels and things began to calm down.

After 8 hours on the ventilator, Gavin was beginning to wake up for longer periods of time, so the ICU doctor, our nurse and a respiratory therapist began the procedure to get Gavin off the vent.  They would turn the flow of oxygen off to see if Gavin would breathe, but his chest just stayed eerily still while the line showing his respirations on a monitor went completely flat.  Then everyone started yelling "Breathe, Gavin!" and that woke him up enough for his chest to rise once with a breath.  Obviously, the decision was made to keep him on the vent because he wasn't able to breathe on his own.  The medical staff would yell "Breathe, Gavin" and I simultaneously yelled, "Plug it back in!" in my head.  Watching his chest lay completely still and hearing the rapid beep on the monitor as his respirations went flat was unnerving to say the least.  This went on for about three or four more cycles over the course of a few hours before he was awake enough to take the vent off and put him on a CPAP machine and finally a nasal cannula.  Needless to say, I slept by his ICU bed all night!

The rest of the recovery had some ups and downs, before Gavin turned a corner and just started healing at a miraculous rate.  He had eight staples in his little belly and a scar that went from one side to the other of his abdomen, but four days post op he was on nothing but Tylenol for pain and discomfort.  He is such an incredible baby!

So the past 15 months has been focused on healing and stabilizing his heart, ostomy (and intestinal) care and lots of physical and occupational therapy.  But it seems like we have made it through those crazy, hard times and we're ready to be on the other side of that hardship.

We are moving on to the next chapter now.  Post-op care for this last surgery involves six months of twice a day dilations for our little man.  That was a surprise, but we're taking it in stride.  It's really not a big deal compared to everything else we've been through.  It certainly isn't placing a feeding tube or changing a colostomy bag!   From there, we'll continue to work with the surgeon, our primary care pediatrician, feeding therapists and nutritionists to figure out life with Hirschsprung's disease and what that means in regards to Gavin's diet and long term care.

He is due for a repeat sleep study to see if his severely obstructed sleep apnea was corrected with surgery.  Hopefully, we will see a dramatic difference in his results.  If not, we will work with both his ENT and cardiologist to find a way ahead and explore as many options as possible to avoid surgery but control the effects prolonged apnea may have on his body.

Pressure is building in the right chamber of Gavin's heart.  There is a significant amount of leaking around his pulmonary valve.  We weren't prepared to hear this, but it is a normal progression of his heart condition.  The speed of the progression isn't normal, but the symptoms are.  In six months, Gavin will return to the cath lab.  Our hope is that repeat cath care will prolong the need for surgical intervention and control the rate that pressure is building in his right chamber.  The cardiologist is certain Gavin will still require a stent, but he is going to do everything possible to make sure that Gavin is older, bigger and stronger before that has to be done.  But, it all depends on how Gavin's heart responds to other treatments.  I was honestly expecting to hear that everything looked the same as it did at his last echo which was in October.  This news floored me and I'm still wrapping my head around it.  It's a part of life with a cardiac kid, but I guess the "bad" news is never something you get used to.

The good news is Gavin IS bigger and stronger and healthier.  He's been progressing so much since his last operation.  He is such a happy, cuddly baby who inspires love and joy in so many.  I love this little boy more than life, and we have been forever changed by this little blessing.  No matter what hardships, obstacles or uncertainties come our way, I know that we will weather the storm.  This next chapter holds so many unknowns and we have no guarantees how things will turn out, but we were in this position 15 months ago and today we have a miracle who has changed our world for the better. 

Thank you again for everyone who has kept our family in your thoughts and prayers.  Your strength and encouragement continues to help us on our journey and give us hope when our hearts are weary.

Wednesday, January 1, 2014

New Beginnings

Last night, as I watched the ball drop while holding both kids on my lap, I couldn't help but reflect on 2013 and where I was on New Year's Eve a year ago.  December 31, 2012, I was rocking Gavin in his hospital room after five days of test after test and no answers as to why his abdomen was swollen and why he was unable to eat.  The end of 2012 was rough to say the least, - Chris was deployed, Gavin made a dramatic entrance two weeks early, had two surgeries his first month of life and survived a very scary day involving a crash cart by his bed in ICU.  He required oxygen his first 40 days of life.  I learned how to insert his feeding tube and test for placement since he only fed by a tube, and through the few tips I learned from the OTs at Duke, I taught him how to eat from a bottle.  On December 26, after having him home from the hospital a little less than a month, I found myself on the phone with a 911 operator with a shaky voice and trembling hands as I waited on an ambulance to rush Gavin to the hospital...again.

It took nearly two weeks to find a diagnosis for Gavin.  But sitting in that rocking chair last New Year's Eve, uncertain of what was coming, I held my son with silent tears streaming down my face begging God to not take my baby from me and to provide the doctors with the wisdom they needed to diagnosis him and find a treatment.  That treatment ended up being an emergency colostomy and learning to care of an ostomy, and eventually learning to put Gavin's intestines back in his body on a regular basis, was certainly something I was not prepared for.  It has been nearly a year now that he has had the colostomy, and I have to say it's not nearly as bad as I originally thought it would be.  It's just our normal life and it's not nearly the mountain of impossibility I had expected.

2013 started off scary.  Gavin had three operations and two heart catherizations.  We spent A LOT of time in the hospital and many hours in doctor's offices and testing areas and early intervention therapies.  I was overwhelmed and exhausted at tackling life with two kids, working full time and dealing with all of the medical complications with Chris half a world away.  I had the Marine Corps tell me that Gavin's situation was "unfortunate", but not an emergency.  They also told me that if my son wasn't going to be dead in 72 hours, then his surgery and condition did not constitute an emergency.  Life was hard, overwhelming and I felt downright defeated.

But, when God gives us more than we can handle, he sends angels to fill the gaps.  He sent people to bring or deliver dinner.  He had churches all over the country lifting Gavin in prayer.  He led a complete stranger into my home to deliver a year supply of diapers, maid service, toys for Lorelai, an incredible spa package and a night on the Spirit of Norfolk.  So many friends, family and strangers alike came together and wrote our Congressman to help file a Congressional Inquiry to get Chris home.  And it worked.  Strangers became friends and volunteered to help change Gavin's ostomy bags.  And the outpouring of love and encouragement our family has received far exceeds anything I could have ever imagined.  All of these things....these signs of humanity's beauty, empathy and compassion....all of these people who took from their family to give to all has combined to change me forever.

Despite all of the challenges and hardships of 2013, I will always look back on this year and remember these great moments.  I cannot adequately describe what these moments have meant to me.  I have been humbled, encouraged and inspired.  2013 changed how I look at the world.  I have been through hell this year, but it doesn't feel that way.  I feel as though I have been blessed beyond anything I deserve and I am eternally grateful for everyone that came to fill the gaps and show me that my journey was most certainly a blessing and not a hardship.  So has this year been hell?  Sure, but that's not how I see it or how I'll remember it years down the road.  Someone once told me that a diamond is nothing more than a piece of coal that made it through the fire.  I'm not quite a diamond, but not so much coal any more either. :)

So, as I look forward to 2014, I face this new year with many anxieties as I did last year.  Tomorrow, Gavin will go into the hospital in preparation for his sixth surgery.  He will go through some surgical prep procedures tomorrow, and then he will go into the OR first thing on Friday.  This is a BIG surgery for him.  We have our normal anesthesia concerns, but this surgery is going to reconnect and close his colostomy and to essentially make him whole again.  This should be a 7-10 day hospital stay.  While sitting in surgery waiting rooms doesn't necessarily get easier, it does become somewhat normal.  The thing that I will never get used to though, is walking my baby to the double doors of the operating room and handing him over to a nurse before turning and walking away.  That moment is always scary and intimidating as I kiss him and pray for God to watch over him through the next procedure he is going to endure.  I find comfort in Gavin's strength and fighting spirit.

Gavin laughs hysterically these days and has started mimicking things that we do.  He's sitting on his own and is making great strides in eating solid foods.  He has the absolute best personality and is such a light in this world.  Lorelai adores him and he loves watching her and playing with her.  Their love for each other brings tears to my eyes sometimes.  Gavin has been through so much in his 14 months, but he is stronger and happier than ever.  If you could lift him in prayer tomorrow, Friday and through his recovery we would greatly appreciate it.

2014 is going to start off with major changes for my family.  Most are a massive leap of faith and the future is very scary and uncertain.  But 2013 started off the same way, and I think it ended up being an incredible year full of hope, faith and love. 

Tuesday, November 5, 2013

More Hurdles

Gavin went to see his General Surgeon today for a pre-op visit.  We were expecting to schedule his pull-through procedure which would close his ostomy.  Cardiac anesthesia was on board to take his case in the OR and the PICU was ready to take Gavin in during recovery.

But, we recently received a diagnosis from Duke that said Gavin has severely obstructed sleep apnea.  We knew that translated to more attentive anesthesia care and ICU recovery after surgery, but that's all we were expecting.  Today, the surgeon halted surgery until Gavin has a consult with ENT.

Luckily, our surgeon had already spoke with doctors from the ENT clinic, so we have an appointment first thing in the morning.  If the ENT says Gavin's tonsils or adenoids need to come out, then that has to occur before his general surgery.  This way, his risks under prolonged anesthesia are mitigated.  That is an extra surgery we weren't expecting, and we definitely didn't expect anything to stand in the way of surgery this week.  But, at least the care is comprehensive.  So Gavin may still be in surgery this week, but just not the one we were expecting.  And as soon as he recovers from that one, he will be going in to have his ostomy closed.  That would make six surgeries for our little man.

It is nice to finally have a diagnosis that may explain his issues with anesthesia though.  His last three times under anesthesia at the Children's Hospital here, I have stressed and emphasized to anesthesiology that Gavin has issues coming off of the ventilator.  And every time I have been ignored and watched Gavin struggle to recover in the Post Anesthesia Care Unit.  Having this diagnosis helps the doctors listen, but at the same time, it makes me livid.

I understand to many doctors, that I am just a mom.  But I am a mom of a sick child.  A mom who knows how her son cries sound coming off the ventilator.  A mom who has had to hold oxygen to her son's face to stop him from de-sating.  A mom who has spent MONTHS in the hospital by her son's bed.  A mom who has seen cardiologists, general surgeons, audiologists, opthamologists, various ICU doctors, hospitalists and primary care physicians.  A mom who has seen great medical care and outright negligent patient care.  A mom who has sat in the waiting room for 8 hours while her son was in open heart surgery without positive expectations.  A mom who knows how many swallows her son can take on a bottle before choking.  A mom who knows how to place a feeding tube so her son can eat.  A mom who knows how to put her son's intestines back into his body.  So while doctors all of a sudden listen to a diagnosis such as severely obstructed sleep apnea, I, as a mom, have communicated the symptoms prior to a diagnosis.  He desats significantly in his sleep.  He breathes loudly.  He has cardiac and lung issues.  He spent 45 days on ventilators, CPAP machines, nasal cannulas and blow by oxygen.  He has been under anesthesia six times and exhibits the same symptoms coming out.  But, apparently, he has had to struggle because I'm just a mom.  What do I know? Now that there's a clinical diagnosis, people are bending over backward to do things right. 

Now, please understand that I am grateful for that.  But I am a mom of a sick child.  I expect doctors and nurses to listen to me when I say something is wrong with my child.  To listen when I advocate for my child and not outright ignore me.  This didn't start out as a rant, but there is a lot of frustration in my heart right now.  I feel like I should have fought harder than I have.  I feel justified in my anger and frustration towards anesthesiologists, but I also feel outrage at the fact that they treated me like I was just another mom.  Anesthesiologists only deal with my child for a moment and then they are gone from his care.

But they must understand what it means to be a mom of a sick child.  I have watched my child struggle for life.  I have watched him code.  I have spent days and nights by his ICU bed just praying he would open his eyes.  So yes, I am just a mom.  But I am a mom of a sick child.  Don't mess with my son, because I will take him to a hospital where anesthesiology does listen and does respond to his physical cues instead of treating him like another patient in the queue.  Because that care does exist.  I have experienced it with my son, and that is what makes substandard care so much more infuriating. 

I apologize for the long rant, but I do think it's important to share the struggles and the frustrations that come along with raising a sick child.  I do try to focus on the positive and stay upbeat. Our surgeons are wonderful, and this issue has only been with anesthesiology.  But I think, to understand why we are so grateful for the good times, it is important to note the struggles, fear, frustration and anger too. 

We could certainly use prayers for Gavin. November is going to be a big month for him with either one or two surgeries.  Hopefully, this new diagnosis will ensure him the care he needs and deserves.  The little guy is still growing strong and fighting hard.  No matter how mad or frustrated I get, his smile and his coos make everything better.  He always calms my heart no matter what struggle we are facing.