Liver Life Walk 2015

Family and friends came together once again for the Liver Life Walk Long Island on April 26th.

It was another amazing day and I can't really seem to find the words to convey how appreciative and thankful I am for everyone who showed support by walking with us, cooking food, coordinating drinks, setting things up, taking them down and monetary donations. And a special Thanks to the FDNY Corona Tigers and  Massapequa Fire Departments, your efforts and support go way beyond what anyone could expect. If I didn't get to thank you personally that day, Thank You! Know that each and every one of you are deeply appreciated.

Philip's health remains stable at the moment and we find ourselves just playing a waiting game majority of the time.

Waiting for his next fever.

Waiting in doctors offices and emergency rooms.

Waiting for lab results.

Waiting for the next endoscopy.

Waiting for him to get sicker and need a transplant…

Just stuck, waiting in one spot, not able to move forward.

Participating in this walk has made me feel like I am doing something really meaningful. Something that can really help. Moving forward in a sense, while we are just stuck where we are. Waiting.

Together, you helped raise $7,743 and the donations keep coming in. 

You have made this as successful as it has been. 

Thank you again from the bottom of our hearts. We really can't say it enough for the support that has been show to our whole family.

Scary Words. Scary Thoughts.

Thrombocytopenia. Hepatosplenomegaly.

Thrombocytopenia. (throm-boh-sahy-tuh-pee-nee-uh) 

Thrombocytopenia is any disorder in which there is an abnormally low amount of platelets. Platelets are parts of the blood that help blood to clot. This condition is sometimes associated with abnormal bleeding.

http://www.nlm.nih.gov/medlineplus/ency/article/000586.htm

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Hepatosplenomegaly. (hep-a-toh-spleen-o-meg-a-lee)

Abnormal enlargement of the liver and spleen. Hepatosplenomegaly is typically associated with chronic liver diseases.
http://www.medicinenet.com/script/main/art.asp?articlekey=3716

Thursday, I took Philip to his pre-surgical testing appointment at the hospital for his endoscopy next week. We were sent away last week because he presented with a rash and low grade fever. Which turned out to be a reaction to a medication he was on. This week, All went well and while we were there I had his blood drawn because they always check his coagulation profile among other stuff before they do the endoscopy.
Portal Hypertension (which Philip has) causes the liver and spleen to enlarge (hepatosplenomegaly). 
Because of the abnormal blood flow away from the liver with portal hypertension, more blood is shunted to the spleen.  The spleen, unfortunately, traps the platelets and the measured platelet count in the blood is reduced. A low platelet count may be associated with an increase chance of bleeding. (http://www.texasliver.com/en/cms/?207)

They also check his prothombin time which measures how long it take s for your blood to clot.

Normal Platelet levels are usually between 150,000 and 400,000.
Philip's usually hang out between 100,000 - 130,000.

I received a call from his doctor yesterday that his level had dropped to 28,000, Yet his clotting time remained within a normal range. This means he is at a higher risk for bleeding. So we will have to go in a few hours before the endoscopy to check the levels again. And go from there. Also we need to be extra vigilant with him playing. No rough housing, wrestling, running, or hard falls. How can you keep an almost two year old from doing these things? I mean not like he will be wrestling but he does like to play with his brother and cousins. He trips and belly flops like 10x a day, climbs on furniture and what not. 
The morning the doctor called to tell me, he took a header off the couch and banged his head on the floor. Now I couldn't get out of my head that he was internally bleeding or something.
The doctor reassured me that if he is acting fine after it he is probably ok. That is regardless of whether he has low platelets or not.
Platelets tend to go up and down so Im hoping it was a fluke and they go back up. 
I just feel like he was doing so good and the wind was taken out of our sails. I tend to not think about all the bad stuff that can happen on a daily basis. I try to live our lives as normal as we can, but when they call and tell you something not so good it's hard to not have the scary thoughts that come with it.

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