Monday, December 3

Alex's Angel Fund

 I'm so sorry for the time away.  Life with two little ones is nothing short of a circus - wild animals are loose in my house, someone seems to always be screaming, the floors are filthy and we're constantly entertained.  It's getting better as Gage is getting older and we're all getting accustomed to being a family of four.

But that's not why I'm here today.  I'm here to ask for your help.  When Bryce was in the NICU at Dell we were fortunate enough to meet a family who lived just a few miles from us.  Their son Grayson was one of Bryce's NICU mates.  We got to know each other during various times of stressful waiting in the NICU waiting room and over vigorous hand washing at the scrub sink.  We learned that Grayson's dad cooked at his mother's restaraunt in Leander that we had frequently visited and enjoyed.  Grayson went home well before Bryce so when Bryce was finally allowed to leave home one of the first places we took him was to that fabulous little O'Leander Cafe.

But as the years have been good to us and blessed Bryce with the passing of many milestones we never dared hope for, they have been hard and trying to Grayson's sweet family.

Tragically, Gail lost Grayson due to a mistake during a routine hospital stay in 2010.  Grayson's mom, Gail, reached out to me last week and asked me to share the story of Grayson as well as Alex, the baby they were blessed with after losing Grayson.  Alex is now heavily medically dependent and they are having a very hard time making ends meet.

I've known Gail since Bryce's NICU stay and I know asking for help must be incredibly difficult for her.

Please take a moment to read Gail's story:
 "In January 2010 I lost my mother to cancer. This was fast and furious. Seemed like she was just diagnosed and then gone literally 5 weeks later. In March we brought our son Grayson into the hospital for an MRI and G- tube placement surgery. Sadly the hospital made an error and they left Grayson without oxygen long enough to leave him brain dead. Grayson was on life support for one week and then we had to let him go. So, I lost my mother then 2 months later I lost my son.

Now fast forward to January 2011. In January 2011 we were blessed with our third son Alexander. He was an exact copy of Grayson. They looked exactly alike. Alex seemed to be normal - no complications at least. At 3 months he started showing some symptoms similar to Grayson's. We immediately started testing: CT scans of the brain, blood work and eventually an MRI and EEG.

Now with Grayson, we had all kinds of genetic testing and everything came back normal. They said it was not genetic. That is, of course, until Alexanders MRI spectroscopy scan. It was a spitting image of Grayson's - to the T. At that time they said it was a Mitochondrial Metabolic Genetic Disorder. They immediately started Alexander on a vitamin therapy and seizure medications. Problem was that my cobra plan wouldn't cover the vitamins. They were $1,200.00 per month. Then we had to pay $2,200 for the cobra plan. Nine months later we eventually got MDCP medicaid. This helped with nursing and cutting out the cobra expense. They still would not cover the vitamins. The vitamins are extremely necessary. Without them Alex's brain cells would die off one by one. We held our heads high and gave Alex everything he needed. Alex was surprising everyone. He had mastered 2 sets of goals. We had just written his third set of goals to include walking. He was talking and singing all day long. He loved to play and interact and go for walks.
 Now, on September 27th, 2012 we brought Alexander into the hospital for the first time since his diagnoses. He was having cold symptoms. When we arrived at the hospital ER they examined him and did some chest x-rays. His lungs seemed fine but he was working harder than he should have to to breathe. So they went ahead and put him on a c-pap machine. They admitted us and sent us to ICU. This was common, anytime I brought Grayson we would go to ICU as well. 
Alex was still his normal happy self, talking and smiling. We hit the ICU floor at about 11:00 pm. The next morning at around 10:30 am I noticed that Alex needed some suctioning. I alerted the nurse who then alerted the respiratory therapist. The therapist came in and removed the C-Pap which was on 6 liters of oxygen. Then said oh wait I'll be right back in a minute. She still had not suctioned and did not put the c-pap on and left the room. I noticed very quickly that Alex need help he was in trouble. So I alerted the nurse. Alex's oxygen level was dropping fast. The nurse just stared at him. He was blue and at 20%.  I started screaming and ran to the hall for help.  The first nurse I saw looked at me and said "are those numbers for real?" I said yeah duh. So other help came. They were able to bag Alex back up once they finally got a bag. Because no - there was not one by his bed! No code blue was called for this incident. 
So now we're stable and respiratory is back bagging. She tells the other respiratory therapist to go to supply and get him a clean attachment. The therapist comes back but not with the attachment he knew worked. He decided he would try another one. His mistake is that he didn't also bring the one that he knew worked. So he tried the part and it had an 97% air leak. It didn't work. Instead of going to get the part he knew worked he decided he was going to try and make this piece work.
Well it didn't and before you knew it Alex was dead. Flat lined. They were doing CPR. They were able to bring him back and went ahead and ventilated him. Later that day the decided to put in a central line, which took them 5 hours to put in. Well 12 and half hours later, after pumping him full of fluids and medications, they realized that the central line was not in the vein. The ventilator could not ventilate his lungs. There was too much fluid. They had to place an emergency chest tube to drain the fluid.
Devastating to say the least.  The next two days were long. We had to wait 48 hours to have an MRI.
Results came from the MRI: Alex was in bad shape. They said they didn't think he would ever wake up again. Why?  Because the two incidents had wiped out 90% of his brain stem. We were devastated  The thought of never seeing his beautiful eyes open again seemed unimaginable. I'm happy to report the very next day he opened his eyes. What a relief.
In turn though, Alexander has not been able to breathe on his own again. So 2 weeks later we went ahead and did a tracheotomy surgery. He finally came home on September 12th with a trach and ventilator. Its been very rough.
There are many things that we need for the house to make it more adaptable for everyday needs. I have not been able to return to work as of yet. Hoping to start back soon. Christmas is around the corner and the bills are piling up. For instance I have one car payment left on my vehicle and I cant make the payment. They are threatening to pick it up. Our mortgage dilemma has been temporarily fixed. Our first payment for our trail modification is set for DEC 1st. I'm worried about this. I continue to keep the faith and focus on Alexander and our other son Christian, who started high school this year.
I hate asking for help but at this point we have no other choice. IF you can help or know someone who may be able to help please share our link. God granted me the opportunity to care for one of his most special gifts of all. For that I am thankful. God bless.

With Love,
You can help this wonderful family in their time of need through the website, here is the link to their fundraising page:  Alex's Angel Fund

I'll do my best to keep you all updated with Alex's condition as I can.  And I'll be back soon with news on the Moline boys as well.