Bleeding continues

Well we have just made it through our third night of the lovely bloody nose game:-( Good thing there is red sheets on the bed:-) We are so thankful that the bleeding is not related to the surgery. However even with moisture, vaseline etc the nose bleeds are continuing to occur. PCP did blood work on day one of this to make sure he had a good amount of platelets. His platelet count was fine, but seeing how it has never been the number of platelets he has, but is actually how they are functioning I am not sure if this is useful information. He was not anemic the other day, so that is also an answer to prayers. Waiting for a call back from hematologist to see what the next course of action should be.

IVIG friday:-(

I must say that this friday was one of the worst IVIG days EVER!!! It was a fiasco from start to finish. It was a terribly long day. We got there and they called in an anesthesiologist to start his IV. It was literally a bloody mess. I ended up going home (less than 5 minutes away) since my friend was there to change my bloody clothes, and get a clean outfit for Sam. RIDICULOUS, we both had to have wardrobe changes after a doc starts an IV.
Next the crazy medicine was NOT there for hours. We were supposed to start at 8am, and the medication didn't arrive until almost 1pm. Needless to say it certainly was a long day. I think just the tension and stress of the day made my back just throb.
Each time we have the IVIG they check Sam's liver enzyme levels. One of the side effects of the IVIG is that it can elevate the liver enzymes, which it has been doing. It has always been mild, but this time some had been slightly worse, and some slightly better. I am thankful that some of the levels are better, and praying that they will all get better.
In GOOD news Sam weighs 35lb 8oz!!! He has been doing really well in the last two weeks or so with eating! It is so wonderful to have him eating well, and feeling hungry and having a desire to eat without having any negative side effects. He has been on the protonix for a few weeks now and it seems to be doing very well to help him:-)
I have only one pic that I took. My little sister gave SAm a Nintendo DS and he thinks it is the coolest thing ever, I cringe to see him use it. But I guess occasionally is ok.

Potty Training Chronicles Day Five and Heywood IVIG

Sammy and Carol (at his birthday party)

Today was NOT a good potty day! Sam had his IVIG today at Heywood, and therefore Sophia was with a friend. She didn't go on the potty once while there.:-( I am disappointed but oh well.
Sammy did well today with the IVIG. Nurse Carol was there and he just loves her. He went running down the hall and jumped into her arms, it made me so nervous, since her due date with baby number 3 is tomorrow, and I was afraid that she would get knocked over. She got the IV in on the first try, the labs were drawn easily. Sam complained all day that he didn't feel well, and actually stayed in the bed all day. He said he was so sick everywhere. He had a period where both his temp and heart rate increased but then they normalized again. I am not sure what will happen with the IVIG, if we will end up switching brands or something else.
Poor little guy stayed in the bed all afternoon, but when my sister Deanna got there he totally perked up and climbed all over her for a few minutes. Hoping that whatever is brewing will be averted since we got the IVIG today.

Hematology update FINALLY

Well I finally heard back from the hematologist. The results I must admit are really annoying. It is quite frustrating when a very brilliant doctor from Children's Hospital Boston says "Well the mystery of Sammy continues, I am sorry!" Ugghhh!!! So essentially what has happened is they did multiple multiple tests when we went in. And her exact comment was "WEll the results are kind of confusing." So not what you want to hear when they are talking about your kid.
So essentially many of the tests came back perfectly normal. PRAISE GOD!!! Then there were a couple of platelet tests that did not come back normal. But the confusing part, is that where one test was abnormal they would have expected another to be abnormal too and it wasn't. So apparently there is another big wig hematologist who is developing a new test to test platelets in a different way, so when that test is fully developed I guess Sammy is going to be a part of the initial testing with his blood.
So now what she said is "Well there is a problem with his platelets but we don't really know what." She was very apologetic and nice, and I could tell that she really wished that she could have been more helpful. But for now it is what it is. There is one more test that is still pending, but I guess that will take a little while longer. We have another appointment in a month, at that appointment we will develope a plan as far as what needs to be lined up for him if something happens with bleeding:-(
It is all so very frustrating. I hate saying "Yeah there is something wrong but I don't know what, I don't know how to help, I don't know how to treat it or make it better. I don't know what the triggers are, or what helps or prevents it." God knows this and I am so thankful that He is on our side. IF GOD IS FOR US, WHO CAN BE AGAINST US?!?!?

NOT what I expected....

Well Sam's results for the blood work are in. I fully expected to be waiting at least until wednesday. I had just come to accept that he probably had the von Willebrand's disease, and was feeling ok with it. Feeling that it would still be ok, that God was still going to care for him that He knew and would guide the doctors in treating him. Well the tests came back negative! So now essentially what we have is a bleeding problem that they don't know what it is caused by, how to treat it, or what the future holds. So now we know that there is something wrong with his blood, but don't know how to treat it. :-( So now I don't know what the next step is. I am so frustrated, and oddly enough disappointed. I finally was ok with this, and accepted that we would have some new treatment or something, but essentially we have a significant problem without an answer, which is exactly where we were last week. I don't know why I am struggling so with it tonight.
I keep reminding myself that God is with us through this. And that His plan for Sam and for all of us is perfect, that He knows best. I am holding on to Him being the one to see us through this trial. That we will continue to have really amazing doctors (DR V) that will take us down the path that will lead to Sammy being better. God knows, and He knows best! I don't know what that best is but I am trusting that EVERYTHING will be OK!!!

OK so I've had enough!!!

We had a good day for a good chunk of the day today. We had some quality time with our friends, and made and decorated sugar cookies. The kids had a blast, and Mommy got some adult time. Thanks ladies!!!











Hard to think there is yet ANOTHER thing wrong with this cute little guy....

Then the stinky part of the day, the part where I say I AM SO DONE!!! After Sam's significant bleeding episode while we were in Children's Hospital last month everyone has been talking about testing him for bleeding disorders. Well that work up has now begun. They do a specific test called "Bleeding time" to actually determine how long it takes for someone to clot. A "normal" result would be 1.5 to 5 minutes, Sam's was 13!!! Are you kidding? Seriously? Can't we have a fear about something and have it NOT be anything wrong? Sorry I am on a tirade as we start to think about one more thing with Sam.
Essentially most people think of Hemophelia when they think of a bleeding disorder, which in essence is a deficiency in a clotting factor too. But the difference is that the one that they are now thinking Sam has is farther down the clotting tree, and therefore not as severe. The specific thing that they are testing for is von Willebrands Disease. Which is a Factor VIII deficiency. There are things to do that can treat it, and it can get better or worse with age. We are not sure that this is what he has, but this could be the answer to all the GI bleeding, abdominal pain, bruising, and the bloody noses which have just recently become an issue. This is just the basics but you can read more here: http://www.webmd.com/a-to-z-guides/von-willebrands-disease-topic-overview
We will find out the results of the other blood tests towards the end of next week. Please be praying for Sam, for wisdom and guidance for us and his doctors, and that we can get in to see the Hematologist as quickly as our primary would like. Oh guess what? He weighs 32.5 pounds now!!!

Praying for Sammy

ER
LABS
FEVER
Doctor
Worried
So afraid
Nobody knows
Infection? Maybe?
Time to restart IVIG?
Stumbling, falling, drowsy
Jittery, shaky, refusing to eat
Fussy, whiny, complaining of pain
Now questioning subclinical infection..
And then what? Antibiotics? Hospitalization
Today I am so overwhelmed, so scared, so nervous
We wait, we pray, we love him and we hug and cuddle
We watch Curious George, and Scamper the Penguin
We try to get him to eat, even just a little
We try to not let Miss Sophia bother him
WE Pray without ceasing for our boy
We let him watch TV all day long
We let him sleep in our bed
We hold him so tightly
We wait on our Lord
We give him kisses
We wait and we cry
We pray hard
We Watch
and we
wait.

SLEEP

Sam slept through the night last night!!! I can't believe it. He slept from 9pm until 5:45am. I of course didn't sleep that much, because I kept waking up to check on him. He was absolutely starving when he woke up. There is something going on with him, and I am not too sure what it is. I brought him to see the doctor last week, and she isn't quite sure what is going on. She did a chest x-ray and blood work and everything came back okay.