His Time

At 9:30am Friday morning, the doctors took Drew off the ventilator. He was wide awake and wanted the breathing tube out...all very good signs. As I reported in previous posts, his body seemed to be responding to treatment. Less than an hour after he was pulled from the ventilator, Drew began to breath in a difficult pattern, the same that sent him to the ventilator 2 weeks ago. The doctors were very worried but wanted to give him a chance to come out of this pattern. It became evident as the day ticked away that, that simply wouldn't happen. Around 10pm he started to decline and it was evident to Robert and I that we had some really tough decisions to make. If he was re-intubated he would most certainly live a life attached to a ventilator. We had decided, when this journey first began, that we did not want that for him. While medical intervention has helped many, those choices are skirting with the will of God.

The time came when we had to make the decision. We prayed fervently to receive a peace about our choice....I instantly did. At the conclusion of our prayer, I immediately felt an overwhelming sense that told me his Heavenly Father was calling him home. I was brought to my knees and wept for my baby. We wrapped him in his favorite blanket and held him tight. He took his last breath moments after we told him that it was ok for him to go if He was calling for him. I love that little boy more than words can express. Watching him pass was the most difficult thing I have ever done or witnessed. I knew that at any moment I could yell for the doctors and they would insert the breathing tube...but what kind of life is that...hooked up to a ventilator. What a test...I knew Gods will. But knowing isn't nearly as difficult as following it.

Big Day

I just left my baby with a group of doctors and watched them wheel him into the operating room. Rob and I decided for Drew to get a G-Tube. It is a small tube directly inserted into his stomach. This will help us to ensure he gets all his medication and enough nutrition! This surgery will hopefully get us one step closer to going home!

We also got some more good news today...his homocystine levels are continuing to drop. They took blood this morning and his level is now 18!!!

Tomorrow will hopefully be the day the breathing tube comes out. This time tomorrow I hope to be holding and snuggling him for the first time in almost two weeks! I will post tomorrow to let you know how everything turns out!!! He is such a fighter!

Number Of The Day

My daughter, Alexis, loves to watch Sesame Street on Saturday mornings. In fact it became a routine we rarely broke. One segment they do is the number of the day. She loves to count along with the Muppet's as they count silly objects. Here is the number for today:

 

Although this number isn't from the Muppet's it is from someone much sweeter...Drew! Today they redrew the blood work that initially diagnosed him with a cobolamin defect. The maximum amount of homocysteine a normal person can have is a level of 15. When Drew was first admitted to the hospital his level was 125!!! His level today was 30!! That means the medications they are giving him have been VERY effective and it has been less an a week. This was incredible news. I immediately called my husband to tell him. He has been dreading the number 30 all year (he turned 30 years old last month) but I am pretty sure this is one of his new favorite numbers!!

This week will prove to be very important and looks to be very busy. I will keep you updated on his progress toward coming home!

A Pinch Of Patience!!

I suppose I should start writing my "recipe." Patience has to be the first ingredient for a number of reasons. When we first started this journey we had a lot of questions to ask but didn't receive any answers for a long time. For over a week we sat in the hospital watching our little boy, constantly wondering what was plaguing his body. We wanted so badly to know what was wrong. Isn't it every parents desire to help fix their children's problems?? During each step of the diagnostic process they kept drawing blood and taking cerebral spinal fluid for more tests....but where were the results? We even got the response "Well...we won't get any results until Monday because the lab is closed!" SERIOUSLY! How can a lab be closed! Don't they understand that this is my little boy, not just a serial number on the side of a tube. Now we find ourselves waiting again to remove the breathing tube they put in last Sunday morning.  This has to be one of the most difficult "lemons" because while he is intubated we can't move him. What a struggle it is not to be able to pick up my little boy.

Thankfully we have gotten some answers, yet with each step there seems to be more questions. We have had to be very patience throughout this entire process. Although waiting has been excruciating we have had some small moments that have really touched our hearts and reminded us that we are an eternal family. 

Before Drew's first seizure, one of my favorite moments was when he would creep his way right next to me to cuddle. He would snuggle his little face right next to mine and go to sleep. I loved it. When he was hooked up to a continuous feed EEG it was incredibly difficult to take him out of his bed. For two days we would sit right next to him and talk to him. One morning I was so exhausted that I laid my head on the edge of his bed and to my amazement, when I woke up, he crept his way right next to my face....just like at home. I was truly touched by this moment because it reminded me of what a sweet and beautiful personality he has. We had to snap a picture to capture the moment. 

 

We had a difficult time keeping the gauze (which was holding the EEG electrodes) on his head!!! Even though these days have been long and tough...I have added a pinch of patience!

Drew's Diagnosis...So Far!

This picture shows the enzyme process involved when we eat certain proteins. This metabolic process is governed by our genes. Several genes need to function correctly for this entire process to occur. Drew has a metabolic disorder within this cycle. Somewhere in this cycle, there is a gene that is mutated and stopping the cycle from being complete. What that means is that Drew has a high level of Homocysteine and very low levels of Methionine (both essential enzymes). There is a mutated gene somewhere on the left side of this cycle that is not functioning correctly. This causes a toxic acidosis in his body and causes the symptoms that has put him in the hospital; seizures, apnea and cerebral atrophy. Even though we have an immense amount of information regarding this metabolic disorder, there is so much more to determine. The doctors are trying to locate which mutated gene is causing his cobalamin defect. There are currently ten known mutations, however Drew doesn't exactly fit into any of them so far. 

The worst and most difficult part of this disorder is that if it is detected before or shortly after birth, the outcome is usually incredible, with slight modifications in diet and medication, children can lead very normal lives. However, without knowing that both parents are recessive carriers of the same mutated gene, you don't know until damage is already done. New York State tests for 50 common metabolic disorders...not including this one. This brings about a lot of anger because this disorder is TREATABLE!!! Grrrrr....

My Recipe For Lemonade

I suppose I should begin this blog by explaining why I decided to name it"My Recipe For Lemonade." For the past six years I have been working in early childhood education working with children with special needs. I recently gave birth to my second child, a precious little boy we named Drew Kai. 

My husband and I had decided before he was born that I would stay home with our children. I was ecstatic about this decision because I felt a deep desire to care for my children. For the first two months of my son's life, life was absolutely perfect. I loved staying home and taking care of my children. We spent our days enjoying our favorite outside spots and enjoying the sunshine. We visited with friends and family and tried hard to relax. 

About a month ago that all changed. Drew experienced his first seizure while on the way home from a day trip to Rochester. Although we didn't know it at the time. We were about to experience some of the most difficult trials in our life. We have had to ask the most difficult questions to doctors and nurses about our son. We have come to learn that Drew has an incredibly rare form of a metabolic disorder. It has really been a roller coaster ride so far in his treatment and diagnosis...and it's not over yet.

When you experience trials in life or "lemons" you have to somehow figure out how to use them to your benefit. Without the correct "recipe" you will find yourself in self destruct mode. This is why I title my blog "My Recipe For Lemonade." I have a whole ton of lemons right now and I'm trying to figure out how to use them to make lemonade!!!