Monday, January 17, 2011

Looking back.....

WARNING: This is a long one! But, if you want a recap of some of what Gavin has gone through in his life.....Read on! It has a happy ending! :)


This past Saturday, January 15, marked two anniversaries for our family. January 15 will always be a day that our family will never forget. Looking back on this day is bittersweet.

The first anniversary is of Joel's Dad's death. This past Saturday marked 11 years since he has been gone from us. When I look back to the day he died, I remember that I had just given birth to Nolan, 2 weeks before. It was a bittersweet time. I was so in love with my newborn and was flying high with having a new baby to love, but it was an emotional time for our family because Joel's Dad was far away in a hospital waiting for a transplant. Joel flew out to see him twice after Nolan was born...he was there to see him just hours before he died. It's sad not having Dan here with us, to this day....but when we think about him, there is always a smile brought to our faces! He was quite the guy!

The second anniversary is of Gavin's 1st, of several, heart surgeries. Saturday marked 4 years since that stressful day. Gavin was supposed to have had this surgery 2 times before this day, but he had an infection both times, so they had to be canceled. It was kind of scary knowing that Gavin was going to have surgery on the anniversary of Dan's death. We were told how difficult this surgery was going to be and that Gavin's condition, going into surgery, was very poor. The doctors had no choice but to do surgery on him, but the conditions were not good for operating on Gavin. It was unspoken between us, but I'm sure that many of us were worried that we might have 2 deaths to remember on this day.

Here is a picture of Gavin waiting to have surgery. He had been in the hospital for several weeks, on a ventilator, because his lungs were such a mess due to pneumonia and high pulmonary pressures. He started out at a hospital near our home, and then was flown by helicopter to the hospital that was going to do his cardiac surgery.



(I miss that scar-free chest, that was without the huge lump of a sternum, that he has now. :( Because Gavin's sternum bone had to be opened up so many times in a short period of time, his sternum is raised up A LOT, and it even shows through when he is wearing a shirt! But, that scar and bone are certainly a reminder to us, of what our warrior boy has had to go through in his short life!)

The surgeon that was going to do Gavin's surgery is one of the best! But, even with all of his experience and successes, we were told that Gavin's case would be a very difficult one for him to do.....and that they were even planning for the worst. Can you imagine how hard it was to let them take him back to surgery?! I was so scared!

This is why we were fearful that Gavin might share the same day of death with his Grandpa. Gavin was named after Dan, since his middle name is Daniel.....but I am so thankful that they didn't have to share something else in common as well!

This is Gavin after surgery:



He was totally sedated and hooked up to TONS of lines, tubing, pumps and meds those days after the surgery, but he WAS ALIVE! Several doctors told us that they "went in expecting the worst, but they came out with the best result that they had hoped for!" We were on cloud nine those first few days after the surgery!

Here is a picture of all our boys, on one of the many visits they had to make to see their little brother in the hospital:



Of course, Gavin decided to keep them on their toes, because the next few months proved to be totally opposite from the best case scenerio! Here is a short recap:

Gavin needed 2 more open-heart surgeries, because one of the valves that they repaired had broken open again, and then his heart went into second degree heart block, so he needed to have a pacemaker put in. Also, Gavin's lungs were such a mess that he could not be taken off the ventilator, despite many trials and meds to help him to get off from it. He also coded a couple of times during this time, and we were certain that there was no way he would ever get home again, and if he did, it would be with a trach and a ventilator. Long story short...by the grace of God, Gavin surprised us all by successfully getting off the ventilator, despite how horrible his lungs were, and despite having the severe leak that he had (and still has today) in his Mitral valve! It was truly a miracle!

Here is a picture of Gavin, with him off the ventilator and doing physical therapy in the hospital.



Even though Gavin was able to be extubated, he still had a long way to go! Because we were a couple of hours from our home and I was missing my other boys terribly, (since I could only see them on some weekends when they came to visit during that 3 1/2 month stay at this hospital), the doctors decided that Gavin was stable enough to fly back to the hospital that was closer to our home. This was such a happy day for us!

Didn't Gavin look happy about this?!



Little did we know that this crazy roller-coaster ride was far from over! Once he was admitted back to the other hospital, they did all their tests on him again and they told us that he and his lungs "were a mess!" The other hospital we had just left were so excited by the progress that Gavin had made and they were so hopeful for his recovery! And, so were we!

It was quite a blow to us, to hear how badly the doctors at this hospital thought he was doing! They decided to change up a ton of his meds and put him on HIGH doses of dieuretics, plus antibiotics. This is where our new roller-coaster began!

We had planned on getting home within a week or so, but it didn't turn out this way! The next month did not go well at all!

This is when Gavin came down with C-Diff, from all the antibiotics he had been on, and this is when he was constantly having diarrhea from the C-diff. (Like 30 diapers a day!), and despite all this loss of hydration due to the C-Diff, they continued to give him all those dieuretics! His body was being so depleted of much needed fluids and they did nothing to stop this! In fact, they didn't even have him on an I.V. at this time, because they said his lungs were so full of fluid and he couldn't handle additional fluid intake. I told them that I understood that his lungs were full of fluid, but the rest of his body SURE WASN'T! He was losing weight and he was extremely irritable and couldn't sleep at all. It was a nightmare that I think of once and awhile, and I wish that I could go back to again....so that I could change all of what happened!

I was pleading with them to help my son! I knew he was not doing well and I begged them to put him on I.V. fluids. They told me that I "was just a Mom" and that they knew what they were doing. Finally, after a couple of days of this, one doctor listened to me and put him on I.V. fluids....at 10cc an hour!....like that was going to make any difference! But, it was too late anyway.

Long story short: Gavin had a stroke, also called a hypoxic brain injury. It was due to him being so severely dehydrated, and he probably also had a very low blood sugar! It landed him back in the ICU, and on a ventilator again!

This one mistake has forever changed his, and our life! The stroke affected his entire brain!.....(Permanent damage). The CT scan showed that he should not have even been alive!

Gavin spent another month in the hospital, and the only reason they sent him home was because I told them that I could probably take better care of him at home, than what they were doing in the hospital! They were very against sending him home, but I insisted that since I had a nursing degree, Gavin would be in capable hands and that they didn't get to make choices for him any longer....because they had messed up.....Big time!

Here is a picture of Gavin the month that he came home.....after 4 1/2 months in the hospital. (We were told to expect 10-14 days! I'd say that was a very long 10-14 days!!!) To this day, this is one of my favorite pictures of Gavin! I think it's because he was finally home with all of his loving family! Oh, and he looks really cute in it too! :)



Of course, Gavin began having seizures after the stroke, and his lungs continued to be a mess! He was on so many medications and we were constantly going to one of his 12 doctors! He also ended up in the hospital more times than I can count, and I really had a difficult time trusting any doctors or nurses that cared for him there, after all that had happened!

But, look at my guy today!



He is doing so well and exceeding all of his doctor's expectations! He will always suffer from the stroke that he had, and his heart still needs some repair, but he is ALIVE! And, he is the light of our family! God has taken such great care of Gavin and, such great care of our family! I don't know why all of this happened to Gavin, but I do know that we are all better people because of it! Gavin, and all of our trials, have truly been a blessing! Life and God are truly Good!


"Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us." Romans 5:1-5

13 comments:

Lacey said...

So did he have AV canal? And just had complications from that?
I can't believe still how similar their stories are. The same exact brain injury. The only difference is we have a documented low blood sugar of 17, but they think it bottomed out to zero. And like Gavin, I was the one that was telling them something was wrong, that they were missing something. The fact that they told you that you were just the mom, I know if they were to tell you that today, you would have punched them out! No one knows them better than we do, medical degree or not!
The only thing I wish, is that I had the blog back when we were going through our hell with Jax. It would have just been nice to be able to look back.
We really need to get to Disney World together, these boys need to meet.

Reagan Leigh said...

Thank you for the recap! What a trying time you guys went through. Gavin really is quite the trooper! I am extremely jaded now when it comes to doctors and their ability (or even willingness) to help Reagan. I can't even imagine how bad I would be if Reagan had endured something similar! I think you did the right thing in getting him out of that hospital! What a nightmare!

stephanie said...

I never knew the whole story. My goodness, what you all went through.
But here he is today!! strong willed little warrior! What a blessing. Thank you for sharing Gavin's amazing miracle!!

Cammie Heflin said...

Oh how I LOVE the baby pix of Gavin!!! I was always told about how horrible Addy's lungs were too and they weren't sure she'd ever be off of oxygen and medications. Not only did she blow that out of the water, she's been dismissed from pulmonology!

Colleen said...

Wow, you have all gone through so much...this is why Doctors need to listen to us when we think something isn't right with our children....Mama knows best!!

Jessica mommy to Alex/ RTS said...

Loved seeing baby Gavin! Your story is a hard one, but the grace you show is amazing. SImply amazing.

April said...

Wow, what a tender journey- I loved reading the whole story- thank you.

ANewKindOfPerfect said...

I knew that Gavin and Jaxson had the same story, but it still blows me away. The last picture of smiling Gavin - I just love him!

Becky said...

Those pictures are SO SWEET! (and tender) Thanks for sharing them. What a journey, huh? You've done such an amazing job!!! Sending love.

Zoey's mom said...

Oh sweet Gavin,what a road you have traveled in your little life already.What a strong fighter boy you are though,that is for sure!A miracle if there ever was one!

Don't you wonder why some of our kids get hit so much harder than others?I mean multiple things!I swear,Zoey and Gavin and Jax are really similar ... that AV canal defect that I see so many kids fly through to and after surgery,just wasn't the case for our little ones.And those strokes .. I tell you,it is one of the things I grapple with the most,even more than the leukemia.

BUt our children have taught us so much through their struggles.We would trade it all in a second to not have them work so hard at everything but,this was their path,their journey and we are so blessed to have them show us the way.

Thanks for sharing his story again Alicia.A reminder of staying strong in our faith and unending hope of infinite possibilities.

Annette Gysen said...

Alicia,

Your re-telling Gavin's story reminds me of God telling the people of Israel to tell the story of their deliverance so that they would remember what He had done for them and be thankful. What a blessing your family and Gavin's testimony (isn't it awesome that he has a testimony?)is!

Angie Proudfit said...

I knew the story, but needed to hear it again! Truely amazing to see where Gavin is today! Keep looking forward and up, Alicia! Love you guys!

Michelle said...

Wow you guys all went through so much - especially Gavin! So sorry to hear that other hospital failed to see what was going on or listen to you. You're right - Gavin is such a fighter and what a cute little guy he is!