Saturday, January 26, 2013

Procedure #4

Gavin had a cardiac catherization this past Wednesday, in an effort to fix the narrowing of his left pulmonary artery (LPA) without having to go through another open heart  procedure.  The rate at which a baby's lungs develop is greatly affected by the amount of blood flow to the lungs.  Gavin's LPA was about 50% of the size it should have been, and therefore his cardiologist was concerned that without intervention, Gavin's left lung would fail to develop normally.

The procedure took about three and a half hours.  First, the cardiologist used a catheter to take pictures of Gavin's heart and examine the LPA, and other areas of his heart's anatomy, in better detail than could be seen on his last echocardiogram.  The next step was to put a balloon on the end of the catheter and inflate it inside of the LPA in an effort to break it open some and allow more blood to pass through to the lungs.  If the balloon didn't work, the next step would be to insert a stent.  The cardiologist was successful in cracking open the artery with the balloon, but one area is still more narrowed than he would like.  However, with Gavin having had an operation nine days prior and only being two months out from his open heart surgery, the cardiologist felt that there would be more risk than necessary to attempt to place the stent.  While the balloon didn't fix the LPA as well as he would have liked, it did make a significant improvement.  Had there been an issue with placing the stent, the only way to fix it would have been another open heart operation.  Gavin's body just needs a break for a little while, before he should endure anything like that (if necessary).

And now we wait.  In about three months, cardiology will do a contrast study to look at Gavin's heart and lungs.  The will measure the amount of pressure and blood flow going from the heart to each lung.  If both lungs look fairly even, then nothing else needs to be done.  If it still seems like the LPA isn't letting enough blood flow through to his left lung, then we'll be back in the cath lab to have that stent placed after all.

As usual, Gavin ended up in the ICU after the procedure.  He really has a hard time coming off of anesthesia and a ventilator.  I personally think the anesthesiologist took him off of the ventilator too soon this time.  Gavin has never come directly out of anesthesia and had a ventilator removed.  He is usually on it for hours, if not days.  This time, he was taken off of it almost immediately.  When we went back to see him, he was really struggling to catch his breath.  It was very ragged and shallow and he was working hard.  The nurse gave him a breathing treatment and some morphine and he was able to get his breathing back to normal.

After an uneventful night in the ICU, Gavin came home.  We are crossing our fingers and praying that this is the last time he'll be in the hospital, until he has to have his colonoscopy closed.  At this point, I would be happy with a full month out of the hospital and surgery free.  He really is a resilient baby.  It still seems surreal at times that he has gone through so much, and we have come close to losing him so many times in his short three months on this earth.  But this kid is a fighter of epic proportions, and I see him getting stronger every day.  He is eating like a champ and finally putting on weight.  One day we'll be out of these newborn clothes and on to the 0-3 month ones!

Chris is headed back, and of course on his way out, the winter storm hit.  And Gavin's ostomy bag started leaking right before we were piling in the car to head to the airport.  Luckily, Chris was here to do ONE MORE bag change.  It is leaps and bounds easier with an extra pair of hands.  Between keeping Gavin's arms and legs down so he doesn't get anything in the opening, and trying to clean and prep the area and get the bag set and placed correctly it seems like it's a requirement to have two people.  The hospital has set up for us to have a nurse come to the house as needed over the next two weeks to help me with the ostomy bag and to check on things like Gavin's weight gain and signs of infection.  It's such a blessing to have the opportunity to have a nurse help the transition from having help to being on my own. 

Gavin was asleep in the backseat when Chris left.  But Lorelai was wide awake and this was the most heartbreaking going away yet.  As soon as he stepped out of the car, she started and screaming and crying "No Daddy bye bye!" over and over again.  Then he went to hug her and she wouldn't let him go.  He literally had to peel each of her hands off of him as she kept screaming for him.  It was absolutely heartbreaking.  Luckily, kids bounce back fast.  The night he left, I heard her Daddy bear on the baby monitor at least 20 times say "Lorelai, Daddy loves you and misses you" as she pressed it again and again before finally falling asleep. 

I woke up this morning and fell back into the routine of being a sole caretaker for the time being.  It's a little tricker trying to manage the ostomy bag, but because Chris changed it before he left, I shouldn't have to change it by myself until tomorrow.  And I'll have the nurse available to help me if I need it.  I LOVE watching Lorelai with Gavin.  If I'm holding him, she'll climb up beside me and just hold his hand.  Sometimes she'll rub the top of his head or his face and just say his name.  She helps pat his back when he needs to burp.  She brings me a diaper if he needs to be changed.  And she loves giving him kisses.

I can't lie.  Life is HARD right now.  But it is so BEAUTIFUL.  The minute you hold Gavin, you can feel how precious and awe inspiring his life and spirit truly are.  Thank you all again for your continued prayers, support and encouragement.  And thank you for following us on Gavin's journey!

Monday, January 21, 2013

Surgery #3

Gavin had his third operation five days before turning three months old.  Once Gavin was diagnosed with Hirschbrung's disease, it was decided that he would need a two part operation.   The first operation was a colostomy, which will help him be able to pass food and stool properly.  The second part, which may be as long as a year away, will involve closing up the colostomy and removing the part of Gavin's colon that no longer works.  The surgeon could not tell us how long the procedure would be, because the team had to biopsy areas of Gavin's colon, and possibly all the way through his large and small intestines, to find out how much of his digestive tract was affected by Hirschbrung's.  Each biopsy would then go to the pathology lab and results were sent back to the OR to determine if the surgeon needed to keep doing biopsies further up.   He would have to repeat the process until he found live tissue.

Luckily, Gavin only seems to be affected in the lower part of his colon, so the surgery was about an hour and a half long.  We were expecting close to four hours, so when I saw the surgeon walk into the waiting room my whole world froze.  As far as I knew, he wasn't supposed to be out yet and any OR updates, including when the procedure was finished, would be transmitted to us through a phone in the OR.  So I sat frozen in my waiting room chair and completely shut down in panic.

Due to the fact that we didn't get any help from Chris's unit in getting him home, we lost about 72 hours trying to arrange his trip.  The surgeon was doing what he could to hold Gavin's operation until Chris landed Monday morning, but his connecting flight from DC was cancelled.  So once he found his luggage, and rented a car, he had to drive the rest of the way to the hospital after spending all night on an international flight.  And Gavin couldn't wait that long to get into the OR.

So while Chris was working on getting to us, Gavin had gone in and come out of surgery.  The surgeon had come out to the waiting room, because his role in the operating room was complete.  He found live cells very soon in the OR, which cut down significantly on the amount of time Gavin had to spend open on the OR table and under anesthesia.  There was a potential for the Hirschbrung's to go all the way up to Gavin's small bowel, but PRAISE GOD it was only the end of his colon that was affected.  The surgeon let me know that Gavin would be going to the ICU because he was having some trouble coming off of the ventilator, but I had expected that going in as he has had trouble with that after his last two operations. 

After the surgeon finished telling me what he found, he asked if I was ok because I wasn't really reacting.  I had spent the night before Gavin's operation in the hospital holding him all night, and his nurse had asked me the same question.  She asked if I was ok, because I seemed to be stoic.  And I realized that's how I've been coping.  I can't break down.  I'm the only parent here, so I have to stay calm, focus on what the doctors and nurses tell me, make sure I ask the questions I need to, because I have to understand everything going on with Gavin as I am the one constant through all of his medical care.  There are certainly times that I do break down, and I can't stop.  But most of the time, the only choice is to hold it together because that's what Gavin needs.  He needs me to be his biggest advocate, and I can't do that if I'm falling apart instead of listening and learning.

But God certainly knows my weaknesses.  I am not a blood and guts kind of person.  So the first time Chris and I were taught how to change Gavin's ostomy is a large blur to me.  When the PA took off his bag and I saw exactly what was done to Gavin in the OR, I just zoned out as the tears started silently falling down my face.  To see your child with an artificial opening and to know that he will have it for at least a year is so heartbreaking.  It was one of the few times I have asked why my beautiful, innocent sweet angel of a son has to go through all of this.  If I could take on every ounce of pain he has had to endure, and multiply it by one hundred, I would take it on every single day of my life.  Luckily, Chris was there and he was able to take it all in when I couldn't.  The next three bag changes we did at home, and he patiently walked me through the steps again and again.  Today, I tried it by myself with him watching and I think I'm finally getting the hang of it, although my heart still breaks every time I do it.

We have been blessed with amazing souls around us.  Between our time at Duke and CHKD, I have developed such an admiration for nurses.  We have had so many that have been beacons of light during the darkest days.  And the three surgeons who have operated on Gavin, have all done so with great skill.  The social workers and chaplains at both hospitals seem to be sent at the exact moments they are needed the most.  The times I would never ask someone to come, and somehow they are sent.  Every nurse, doctor and surgeon who has laid hands on my son, has contributed significantly to him being with us today.  I am eternally grateful to all of them.

Please continue to keep Gavin in your prayers.  He goes in Wednesday to have a stent placed in the pulmonary artery that carries blood from his heart to his left lung.  It is only 50% the size it should be, and the blood flow directly affects how the lungs develop.  It will only be nine days out from his last operation, but this is another procedure that must be done.  Chris will still be here for the stent procedure, but will have to leave two days later.

Gavin was able to come home from the hospital on Friday.  It was unexpected since we were told that he would stay until his stent procedure.  But for the first time since Gavin was born, our entire family was under one roof.  It has been the best three days I have had in a long time.  I never cease to be amazed at Gavin's strength, and I pray that he will keep that strength and fighting spirit through his procedure on Wednesday.  He is my eight pound warrior and I am inspired by him every single day.  He is a living and breathing form of eternal hope.

Friday, January 11, 2013

New Year, New Challenges

Well family and friends, Gavin fought hard and survived 2012!  It has been so amazing having him home and seeing his personality grow as I watch him rise and overcome obstacle after obstacle.  We were hoping that 2013 would be our road to recovery, but it looks like we have a few more hurdles to fight through.

Gavin had been doing well and finally gaining weight.  Two weeks ago, Gavin began vomiting all of his feeds and a significant amount of bile.  I laid him down for a nap and he woke up an hour later screaming.  As I picked him up and prepared to change his diaper, I noticed that his stomach was severely swollen.  So much so that the skin on his abdomen was stretched to its limit.  I called 911 and while I spoke to the operator I was rushing to dress Lorelai and pack a diaper bag.  The ambulance showed up moments later.  I piled into the ambulance with Gavin and Lorelai and headed to the ER.

After getting processed at the ER, the medical team there began pumping Gavin's stomach.  Within two hours, a surgeon came to discuss Gavin going into surgery ASAP as they expected x-rays to show either an abdominal obstruction or a malrotation of his intestines.  However, the x-rays showed nothing.

For a week and a half, Gavin went through multiple x-rays, contrast studies and GI exams.  Nothing was conclusive.  In the meantime, he was unable to eat as his digestive system had shut down and quit working for some undetermined reason.  He lost a significant amount of weight.  So much so that you can now see the wires that were used to put his chest back together after open heart surgery through his skin and you can see the fibers of his abdominal muscles through his skin.  He is now on IV nutrition in an effort to put weight on him.  My heart broke watching my son have to go without food for so long.  But medically, it seemed to be the only choice.

The only option the doctors could think of was to test Gavin for Hirschbrung's Disease.  Nothing in his history would indicate the disease, but they needed to rule it out.  As Gavin's surgeon said, Gavin did not read the textbook on Hirschbrung's.  He does indeed have it.  At least part of his colon has died, and it is possible that part or all of his large intestines is as well.  This will require a two part surgery.  Monday, the surgeons will do a colostomy.  Gavin will have a colostomy bag for at least a year, possibly longer.  Once he is of an age, weight and health status that makes conditions favorable, he will go in to have the parts of his colon and intestines that don't work completely removed.

In addition to this, Gavin's echocardiograms have consistently shown that the pulmonary artery from his heart to his left lung is half the size it should be.  Because blood flow to the lungs directly affects the rate and degree to which the lungs develop, Gavin will need a stent put in that artery to ensure that his left lung receives an adequate amount of blood.

I will not go into my grievances with the Marine Corps at this time, as this blog is to focus on Gavin's story and the amazing, resilient baby that he is.  But I am happy to share that Chris should be on his way home soon to be with us through Gavin's surgery, and hopefully through his stent procedure.

These past two weeks have been indescribably difficult for our family.  Not having Chris here with us through these times feels overwhelming and unbearable most days.  I can't imagine having to be half a world away while my son struggles as Gavin does.  All we can do is pray, fight the fights we can to do what is best for our family and our son and keep hope that some day things will be made right. 

Gavin has all of the nurses falling in love with him again.  He loves being cuddled and it isn't hard to get attention when he smiles the way he does.  He has such a pure, innocent soul and I am so blessed and honored to be Gavin and Lorelai's mom.   Lorelai does great at the hospital with Gavin.  She loves giving him kisses and is very adamant that he will have a pacifier in his mouth.  My heart warms at the love she gives him.

I would like to thank you all again for following our story, and for the support and encouragement you have provided during these hard times.  My aunt sent me a great card the other day.  It said "After every storm there is a rainbow.  And if I have to come paint the darn thing on your ceiling I will!"  Most days lately have been stormy and everything is so much harder with our family divided as it is through this deployment.  But Lorelai and Gavin are my rainbow, and despite what challenges are  bestowed upon our family, we have each other and a massive blanket of prayers from all of you.