Thursday, July 15, 2010

Connor's Journey

Well in a little over three months Connor and his sisters will be turning 7. It's amazing how far all three have come since their early arrival at just a day past 25 weeks gestation.

All three had a rough start from intubation, brain bleeds, tons of medications to keep everything going and functioning. Being switched from a regular ventilator to an oscillator and their little bodies shaking from the air trying to be pushed into there undeveloped lungs to get them to expand. We never knew what to expect one day to the next in the NICU with these little ones we had been blessed with. Never knowing if we should rejoice or prepare to plan a funeral for a little life cut short.

Everything was looking good after the first few months and it was looking like we were going to go home with all three of our babies. The full extent of the side effects of their prematurity unknown. That would be tackled as they developed and issues arose. But looking back Connor wasn't keeping up the pace that his sisters were in the NICU. We brought Chloe home in March 2004 and were rejoicing that our babies where finally making the leap to come home. Only to be gut checked not soon after that Chloe may be the ONLY ONE ever coming home.

Not only Connor but Gwynne became life threatening ill and the NICU staff had no idea what was making them sick. In April 2004 they were both diagnoses with Cytomeglovirus AKA CMV. There bodies had already been riddled with various infections and with this we saw the two of them put back on the ventilators again. Even then Connor was not able to maintain healthy oxygen or CO2 levels. Connor's suspected neurological issues went from bad to worse if he survived this illness.

Connor was never able to ween off from the ventilator after this. His O2 and CO2 levels began coming up, but the vent settings weren't coming down. The talk of a trach and transferring him to the PICU began. A few short months later the NICU said he had out grown their care and expertise and need to be cared for by the PICU. So off we went. We fought against the trach, but it got to be too much fighting with the PICU over the large doses of sedation Connor was being given to keep him calm and from pulling out the intubation tube. Not to mention the medication that completely paralyzed him. It is so hard to see your little baby like that. So we signed the paperwork for the trach to be placed.

The first attempt of placing the trach failed. The hospital Connor was at was ill equipped with the things the ENT needed to do the surgery. So one raining day in August of 2004 he was transported by ambulance to Children's Hospital Los Angeles(CHLA). His trach was put in successfully the second time and he was eventually and unfortunately transferred to their vent patient floor from the PICU at CHLA. I say unfortunately as things went to hell again very quickly.

The hospital sent him from the PICU which is one on one or two to one care to a floor with one nurse for several patients (who knows how many the nurse had). They never mentioned this move to us and it happened on a weekend I was out of town and my husband was graduating from school. Basically, NO VISITOR'S for this little guy who had had someone at his bedside 24/7 from the time he was born. I truly feel my baby Bubba felt alone and abandon and he gave up. Which led him to code on the vent floor within 24 hours of being transferred from the PICU.

Our world was falling apart again. Back to the PICU and test after test. It wasn't looking good. Connor's eyes were rolled up in his head he wasn't responding to light, he was swelled up from all the fluids that were pushed into him as well as steroids. Suddenly there where seizures that were not there before. The hospital staff was ignoring them and telling me they were tremors and he has always had those. Momma bear kicked in and neurology was there the next morning. They were screaming for medications STAT to stop his seizures within in seconds of walking up to his bedside. But I thought they were just tremors??!! I never wanted to hug a damn doctor as much as I wanted to that day.

All the tests are in and the doctor wants to set up a meeting with "the team" to go over Connor's prognosis. Crap! This can't be good, I mean we are not blind, stupid or delusional about the situation at hand.

So we get a diagnosis of brain atrophy and that they don't know if it was directly caused by the coding at CHLA or when he was sick in the NICU. In other words don't blame or sue us, it's not our fault. The conversation went to hell in a hand basket with me threatening to punch out the doctor to my right who would NOT SHUT THE FRACK UP. "The Teams" view was that Connor and I quote "was in a vegetative state, living in complete darkness. He would never be able to appreciate life, us, his sisters, etc" There suggestion is that we remove life support and keep him comfortable until he died. Or if we didn't feel comfortable with that they would just wait until an infection came and wouldn't treat him for it. They would medicate to keep him comfortable until the infection took him. The freakin doctor was on repeat with this, hence the threat to knock him out. Which he quickly shut up at that point and security was not needed.

Here we were with an 11 month old son and a really horrible prognosis from the doctors. He was almost a year and fought so hard. Do we let him go and pull his life support? Or do we give him a chance to live? Really no person should EVER have to ponder this for a loved one, let alone their child!

Jason and I saw how well the girls were doing and how they had changed since coming home from the hospital. So we decided Connor needed to come home and get out the hospital environment and we requested and immediate transfer back to the local hospital so we could work on getting him home.

After 15 months of living his life in a hospital Connor came home. I'm not going to lie, we had to jump through hoops and give up any privacy to make this happen. But it was worth it without a doubt. Connor came home with a home nurse since he could not be left alone and would die if he became disconnected from his vent or his trach came out for too long. Seriously, within in seconds of him being disconnected from his vent the boy would start turning blue.

We took him home thinking this was how life was going to be. Never knowing what his brain was capable of. Would his brain tell his body to breath on his own? Were his lungs strong enough? How long would he live? Did we make the right choice for Connor? Or are we making the right choice for us? Are we being fair to the girls with the attention and care Connor will need?

All of these were questions we were asking ourselves over and over.

My goodness the progress Boogie has made over these last several years. He steals every ones heart he comes into contact with. He loves to be touched, cuddled, loved. He doesn't like to be left alone and secluded. He loves when his sisters and cousins play with him. He just beams happiness and unconditional love. I don't care what mood you're in. You can't help but smile and be happy when your around him.

So you have read this far and your asking yourself okay so what's with this walk down memory lane?

This post is show that he is NOT in a vegetative state, he is NOT living in darkness and he is fully able to appreciate his family and the people in his life!

Not only that but as of today he is officially off his vent and no longer needs it. He can do the breathing on his own! His brain is doing what it is suppose to be doing and telling his body what to do. It seems unreal that we are here today. But oh it is so wonderful to rejoice in this major accomplishment!!!!!!

Thank you to all the nurses who have helped us over the years, we couldn't have done it without your help. And to everyone who ever sent out prayers, good thoughts for our family, THANK YOU!

The true test is still coming. Flu season will be upon us, but my mommy gut is telling me that we won't have a big issue with this. I think it is bye bye vent from here on out!


The Grasshoppa:Triplets Plus Two Momma said...

Amy--I had no idea.

My heart just broke a million pieces for you, for your son and for all you have had to do to get to where you are.

I am in AWE of your strength as I simply can't imagine.

What an amazing story and how blessed Connor is to have a momma that fights from her heart and gut. You saved him and brought him to this place.

You are amazing. HUGS to you and HUGS to that gorgeous boy.

Please have a coke today ;)

MoDLin said...

You have been such an amazing advocate for your son. Connor is here and doing better than expected because you have fought for him all the way. Hooray for no more vent! That's HUGE!!! Congratulations to all of you!

Mandie said...

AMY!!!! This was a WONDERFUL post!!!! As stupid as this seems, thank you for talking about Connor's abilities. I often wonder but am too afraid to ask, probably like most people, sensitive questions. One I have, is whether or not Connor will ever be able to regain mobility and strength enough to do tasks on his own? Is there hope that he may be able to overcome some of his obstacles with constant PT, OT, ST, etc.? Sorry if this is a dumb question, but I just always hope for the best outcome for kiddos like Connor, and have a kind of optimistic streak (how very unlike me) thinking that if you never give up giving him every chance he can have then maybe it would pay off, kwim?

Anyway, I am so excited for your family as Connor and the girls start school and am hopeful that he will be off the vent sooner rather than later. Great job, Momma! That's why we were given angels, because someone out there knew we could handle it! :)

Much love and strength!!! <3