Blake Stuesse

Blake’s Story

Born May 31st, 2001

Here is the story of our son Blake who just turned 4 years old on May 31, 2005. Blake has two older brothers Daniel (10) and Drew (6), lives in Sammamish near Seattle , WA . His birth was at full term without complications. Besides a heart murmur and small ventricle septum defect, he seemed very healthy.

On June 19, 2001, Blake turned bluish-gray and was rushed to Children’s Hospital due to heart failure and respiratory distress. (I kept telling everyone that he just wasn’t breathing right, but everyone said he was fine) Pulmonary hypertension was present and a Vein of Galen Malformation (VGM) was revealed via ultrasound, MRI and MRA. After four days in the ICU, 19 platinum coils were placed to block arterial flow to the VGM. A minor stroke occurred in occipital lobe but his pulmonary pressures improved. While in the hospital a minor seizure occurred so he was given phenobarbital to control the seizures. This was one of the most difficult times in my life. It was so painful and frightening to watch my sweet baby be so ill. I remember overhearing one of the Drs. say, “Blake is critically ill”. Hearing those words really shook me. Blake was discharged from the hospital on 7/01/01. He went home on oxygen and gradually weaned off of it.

Over the next several months, Blake nursed, grew and continued to develop at a pace slightly less than typical. Once Blake was 10 months old, a second embolization was performed where 17 platinum coils were placed to block arterial flow to the VGM. Blake’s pulmonary pressures improved to near normal range. We were so thankful that we felt Blake was going to beat this thing.

In August 2002, a VP shunt with programmable valve was placed to reduce hydrocephalus. At first the pressure was set too low, his ventricles collapsed and subdural fluid formed. Blake suffered A LOT during this time with terrible headaches, but fortunately after many adjustments to the valve pressure setting, Blake’s hydrocephalus got under control.

During the summer of 2002 through early spring of 2003, Blake learned many new things. He could sign “more”, “please” and “milk”. He could say “Uh – oh”, “mama”, “da” for duck, “up” and “night – night”. He could move around in his walker or stroll around holding your hands, he fed himself and he laughed and played with his brothers. I look back on this time with fond memories.

On March 11, 2003, Blake had a long seizure lasting 50 minutes. His doctor increased the dose of the medicine he was on and started him on a second to control his seizures. Blake took Valium and this caused him to be “floppy”. It was from this point on that Blake slowly lost all he had gained. He wasn’t able to walk anymore, he has no head or neck control, he held onto some words for a few months until eventually he didn’t even say, “ma, ma” anymore. By the end of June Blake had to get a NG (nasal-gastric) feeding tube because he just wasn’t eating enough. We kept hoping for improvements. This was a heart breaking time.

July 2003 Blake had three more embolizations, but he didn’t show much improvement from them. Blake was in A LOT of pain that summer. He cried often and didn’t sleep much. He wanted to be held, to nurse and be in a quiet room. It was an extremely difficult time.

In October 2003 we had a meeting with all of Blake’s doctors and they came to the conclusion there wasn’t anything else they could do for Blake medically. They said they couldn’t embolize any more due to the possible extreme brain damage. There are 40+ malformed vessels flowing to critical parts of the brain. Once again, devastating news.

June 1, 2004 Blake had many surprise smiles on the day after his 3 rd birthday. It was the BEST day of my whole year! Unfortunately, he has only smiled three times since that day and he hasn’t smiled in over six months.

For the past 1-½ years Blake has been relatively stable. He does not have much pain as he once did. He sleeps many hours of the day. He now has a G-J feeding tube. He is much like a newborn baby at 4 years of age. Blake has physical and occupational therapy weekly. We focus on having him in a peaceful environment. We use calming music, aromatherapy, and soft blankets to help Blake feel good. Blake goes on all our family outings. We have figured out ways to bike, hike and x-country ski with him. Blake is extremely cute, sweet and very fun to snuggle! I am so very thankful for his life. Someone said to me today when discussing someone’s child who passed away from a VGM, “you’re the lucky one”. I never thought that all of Blake’s pain, suffering and challenges to be lucky, but you know, I think she is right. I am so lucky to have Blake here with me despite all of his challenges.


About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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