done

The angio went well. They did determine that Moyamoya was the cause of his past stroke's (yes hes had more than one and they were to little to even notice any changed in his behavior.) We have yet to figure out a plan for surgery, but expect that in the coming weeks we will have a more definitive plan.

Today the plan is to send us....HOME!! Malachi is well on his way to recovery!! We are so looking forward to getting home, sleeping in our own bed, being together with our entire family (it's been 19 day's since the boys have seen each other), eating a meal made in our own kitchen and snuggling with my little loves.

I must go and snuggle with my big boy...I cant wait to be home!!

Angiogram

Malachi is in the angio. room right now. They have him intubated and the a-line in right now. They are getting ready to inject the dye right now. We should have results later today.

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 surgeryhttp://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm).

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!

It's official

Malachi was officially diagnosed with Moyamoya on Tuesday. We were transfered to another hospital to have an angiogram. Unfortunately he has the metonumo virus which is keeping him on oxygen. He also has a nasty cough so neurosurgery and interventionist neurosurgery didn't feel comfortable putting him to sleep. So the new plan is to let him recover from the virus and then go home. We will come back in a few weeks for the angiogram and then wait to see the results from that to make a plan for surgery. This journey is going to be long but we are in it for the long haul.

Party

Josh and I have had a very difficult day. We have cried and cried and cried again. I'll admit, we threw ourselves a pity party, a massive pity party complete with black streamers, black balloons and black party favors. The party lasted most of the day, yes it was a long party.  But now the party is over and we are feeling better and more optimistic. Malachi will be fine. No more tears to be cried and no more parties to be thrown. We are moving forward with hope, faith, love and peace. We are taking the first step on this new journey with all our family and friends cheering us on (yes my loved ones, that means your pity party must be over too). We are going to suck it up and get going. Our path is still unknown and our destination still far, far away but we are equipped with the right "tools" to help us along the way. Each of you are playing an important role, we may ask you to quench our thirst, feed our bellies, rub our feet (mine smell like sweet nectar), repair our walking sticks or cheer us on from the sidelines. At times the path may be rocky at other times smooth. We need you to walk the path with us, providing us a resting place when we get weary and encouragement when we are feeling defeated. You my sweet, sweet friends, are a part of this and whether you like it or not your on this journey with us.

God is good, so so good! Thank you for choosing us!

MoyaMoya...

Malachi had his MRI/MRA last night. It is looking like he is being diagnoised with MoyaMoya disease. For those of you that don't know what it is go Here. When this first started happening a few days ago MoyaMoya was the first thing I though of. So the diagnosis doesnt come as a cpmplete shock to me. We are going to be talking to nuro-surgery today and hope to get some answers. We do know that this is a progressive disease and unless corrected with sergical intervention, Malachi will continue to have strokes. They believe this stroke has been progressvie and they can see where new pathways have been formed around the parts of his brain that had blood loss. The entire report from the MRI is still not in so we should have a better idea of what is going on. But brain surgery is definatly the only option we have. Ugh.

The goos news is that Malachi has started to use his right leg more and more. PT and OT were in evaluating his mobility yesterday. They were pleased. They had Malachi stand for a while and helped him move his arm around. The nurologist came in to take a peek at him and he told us he was optomistic. So are we. We will continue to challange Malachi and push him to do his best. We have never babyed him and we are sure as heck not going to start now.

I don't want to be going through all this and see my baby in so much pain, but I will continue to praise God for all that he has given us. Malachi is alive and I am so thankful for that!!!!

We are also haveing issues with his sodium levels, they are low. And this morning they told me he is not peeing like he should be, so they are worried about that. Our medical team now consists of Cardiology, Hematology, Nurology, Urology and now Nuro-Surgery...oh my!

Malachi did finally get to drink last night, they dont believe his ability to eat has been effected, so that is good. We are hoping to get him up and playing today.

They tried to get a picc line in last night with no luck, he didn't like the sedation. So they are taking him down today to put him alseep so they can get it in.

So here we sit, with a new diagnosis, in a brand new day. Its going to be a good one...I just know it!

I dont want to write this

I really don't want to write this but I must. I am sitting here in the PICU, next to Malachi. He was hospitalized late last night for RSV and a stroke. Yes my big boy has recently suffered a major stroke that is affecting his right arm and leg. Thanks about all we know right now. At some point I will go into how we found out and what led us to this but right now is not the time.

As far as they stroke. They are still not sure what caused it. We anticipate a lot of testing today. He will be going in for a sedated MRI later this morning, followed by a ton of bloodwork and ultrasounds of his legs. They are thinking he may have a clotting disorder or possibly Moyamoya disease.

Josh and I are doing okay. We are obviously terrified and worried about out peewee. Its so hard know that just behind that skull something so serious is going on and there is nothing we can do about it. We have been running through questions, will he walk? Talk? communicate? Its overwhelming to say the least. The one thing we don't want is people's pitty. We need you guys to be strong for us, to encourage us and to support us. Pitty is going to get any of us anywhere, we know that you are sorrry this happened, so are we. Right now we need to focus on  geting through this and being strong for Malachi. He is a tough cookie and we are trying to rest in that. Malachi has proved the docs worng time and time again and has left people scratching their heads. We are confident he will do the same in this situation.

We dont understand why we were chosen for this new journey or why our baby was chosen. But we are trusting that there is a reason, a reason that non of us can comprehend, a mission from God to reflect all the glory back to Him. Time will tell. Until then we wait for any news and cling to hope and our faith in Christ.