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!

Wednesday, July 7, 2010

Family Walk + Fractured Arm = Mommy Guilt

Well Gwynne is in a cast as of today, and I have tons of guilt over it. Well with a lot of people having Monday off for the Holiday and no mail, UPS, Fed-Ex, etc work was slow yesterday. So I got to bail and head home at a decent time. Got home and thought it would be a great idea to walk the dogs and the family to all go. Best of intentions and family bonding at the core.

Both girls ask if they can take their scooters for the walk and being a good mom I told them they could, but they couldn't wear flip flops and had to put on shoes. Well that made Chloe opt out of the scooter situation and ask to walk one of the heathens that we call Vera & Oso. Lil Miss Gwynne pulled on her pink cowboy boots grabbed her scooter and the family was off for a nice evening walk.

Well Chloe tried to walk Vera, while I had Connor in his wheelchair and Jason was being dragged by Oso. Chloe wasn't able to control Vera and Vera basically was walking Chloe. So I took the leash from Chloe and pushed Connor's chair at the same time. We are about 5 houses from home and barely starting our walk.

I hear a crash and cries. Gwynne just ate it on her scooter in a neighbors drive way and she is not getting up. Just laying there crying. My stellar parenting skills kick in cause I'm irritated at this point(yes less then 5 minutes into the family walk). And I tell her she needs to get up I can't get to her while having her brother and the dog. She complains about her arm and I figure she jammed it she'll cry for awhile and be good. So we continue on with our walk.

The family togetherness gets better and better as we walk! Gwynne his holding her arm crying, Chloe is riding the scooter now with her damn flip flops on and Jason is feeling Gwynne is being a bit of a drama queen. Me! I just wanted everyone to SHUT UP! Yet also getting worried that there is something VERY WRONG with Gwynne's arm. UGH!

So we get home from our lovely family evening walk and I head off to the ER for an X-ray with Gwynne. Since getting to the ER all I have been playing over and over in my OCD brain is......

Why? Why did I have to get off of work at a decent time and think it would be a great idea for the whole family to go for walk? Had I worked my normal long overtime filled day none of this would have happened. Seriously! Had I just came home ate dinner put the kids to bed then walked the dogs none of this would have happened.

This has also brought about more worries about Gwynne and her eating habits. Would you expect a fall from a scooter to fracture an arm? This girl will not eat meat. I have to force her to eat just a bite or two. Now that being said. She will eat sausage, bacon, and chicken nuggets(sometimes). Why those items and nothing else? I'm concerned she is not getting enough protein and hence made it easier for this some what small fall to cause her arm to fracture. So do I feed her a ton of sausage and bacon to get the protein in her? She's skinny enough. LOL! I'm thinking she likes shakes and after dinner she needs to start having a protein shake for dessert. I need to figure out a shake that will be high in protein but still allow her to be hungry for regular meals.

I have thought about the garden burgers/meat. But at the same time I don't want to be making special meals for her. Is that horrible? But at this point for her well being I'm thinking I may have to.

Another issue may be calicum. The kids were on high calorie formula for a long time and then went to pedisure instead of milk. Have you ever tasted pedisure or ensure? That is like drinking a sugar laced milk shake. So they think milk taste gross and I have tried over and over to get them to drink regular milk. Thinking of trying Soy or Rice milk with them. Man I remember drinking like 2-3 big glasses of milk a day. Not these kids! When they eat cereal they eat it dry! What is going on this is not normal!!!!!????

This parenting gig really sucks sometimes. So for the next 4-6 weeks I will have a wonderful reminder of what a great mom I am. UGH!

But we will be off to the craft store to get some items to bedazzle the cast.