Saturday, April 10, 2010

leave it to the bees

"Aerodynamically, the bumblebee should not be able to fly. But, the bumblebee does not know that so it goes on flying anyway." ~Mary Kay Ash

I don't remember where I first heard this quote but I have used it time and time again. 

Let me fill you all in on the events that lead up to Malachi's stroke and recent diagnosis of moyamoya.

Thursday of last week Malachi spent the entire day at the zoo with his aunt and cousins. Elijah had just come home from the hospital the day before, so it was nice to have some time to get settled back in before Malachi came home. Thursday night Josh went to pick Malachi up. When he got home we changed his diaper, he felt a little warm so we gave him some Motrin and put him to bed (his temp was 101.2). The next morning he woke up super fussy and he still had a fever. So I decided to call his pediatrician and she wanted to see him. When we got to the office he began to throw up and she thought he was dehydrated so she sent us to the hospital to be admitted. We got to the hospital and he started drinking but he was still unbelievably crabby.  They tried to get an IV going with no success. But he was drinking and not getting sick, so they were not to terribly worried that he didnt have an IV. Later that night we were discharged. He was still grumpy and was still having some fevers. We went home and put him to sleep.

The next day when we woke up (this is now sat.) we realized he was not using his right arm. We though perhaps he had broken it or dislocated it while with his cousins. So back to the ER we went. When we got there they did x-rays and didn't see anything so they diagnosed him with Phlebitis. They thought he had some inflammation of a vein because of the IV they tried to get the day before. So we went home. Malachi was still super fussy and needed to be held all the time. He was sleeping a lot too but we thought it was because he had the flu and he was tired and weak. 

Easter Sunday Josh realized that he was not moving his right leg. This is when we knew something was terribly wrong. We took him to the ER again and they noticed definite asymmetry. They rushed him in for a ST scan. When the results came back as a stroke we were all shocked. The Docs decided to send us to another hospital. Off we went 2 hours away. On top of the stroke he also had RSV. 

At Hope they ran a bunch of blood work as they thought the cause of his stroke was due to a clotting disorder. When those test started to come back negative they began to wonder.  They scheduled him for a sedated MRI/MRA.  That one test changed our lives forever. Malachi was diagnosed with Moyamoya. 

I thought I would give you all a little basic information on Moyamoya and what this new diagnosis means to Malachi and our family.

Moyamoya is rare, very rare. Moyamoya is a cerebrovascular disorder caused by blocked arteries at the base of the brain. In japan Moyamoya means puff of smoke which describes the tiny blood vessels the form to compensate for the blockage of the larger ones. There is very little information about the causes of Moyamoya, but they do believe it is a genetic inheritance. Moyamoya is not usually found until the person have a series of strokes. Thus the case in Malachi's situation.

There are several types of revascularization surgery that can restore blood flow to the brain by opening narrowed blood vessels or by bypassing blocked arteries. Children usually respond better to revascularization surgery than adults, but the majority of individuals have no further strokes or related problems after surgery

Surgery is our only option.

The plan from here on out is as follows...Malachi will be having an angiogram on monday. This will show the neurosurgeon exactly what is going on with the blood supply to his brain. While he is having the angiogram they are going to be looking to see if they can temporarily place stints to help blood supply until he is ready for surgery. They call that procedure an angioplasty.

After the review the results of the tests today, they will let us know what they feel is the best plan of action. There are a few different types of neurosurgeries they can choose from. The option that they feel will fit Malachi the best is EDAS encephaloduroarteriosynangiosis). This is where they cut muscle out of another area (most likely from the jaw area because it is loaded with tiny vessels) and place it on his brain. The theory is that those little vessels will grow and provide blood to the areas that are not receiving it. This is a major surgery since they are going to be operating on his brain.

The hard thing is we need to let his brain heal from this stroke but there is a chance that he will have another stroke while we wait for his brain to heal. If he has another stroke,we have to wait for his brain to heal before surgery again. Ugh. Time is going to be our biggest hurdle. Once the surgery happens we will not see immediate results. It will take time for the new vessels to supply the brain with blood. It's a very fine line we are walking.

All we can do if pray that God protects his brain while we wait for the right time.

Malachi will beat Moyamoya...

Leave it to the bees to show us that what is impossible with man is possible with God. Malachi continues to prove the doctors wrong. Just about a week after his major stroke and he is already pulling to stand...he just leaves the docs scratching their heads in wonder. God is using Malachi for great things I am sure he will continue to amaze us all!


Lacey said...

I love that bee quote. How true is that? Malachi will beat this, keep it up little man!

Emily said...

Beautiful quote. What a special little trooper he is. We have the faith that all will be well...

Hewett Happenings said...

Malachi IS a special little guy. You know the great thing about these kiddos? They can't read yet, so they don't know they AREN'T supposed to overcome these little obstacles. ; )

Praying the tests Monday reveal clear answers, and that Malachi has no more strokes and continues to prove the doctors do not have all the answers, HE does.

Kristin said...

Praying all goes well tomorrow and with the upcoming surgery. One more little bump in the road on your journey full of happiness :)

Alan Anderson said...

Our prayers are still with you - especially today as you wait for test results! He is strong and he is lucky to have you as parents - you are doing the best thing for him!