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06-9-2008 - Thomas Beat the Odds

My mood while writing this blog: Ok

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August 29, 2008: Thomas had two re-lapse seizures so we took him to the pediatrician where they called his neurologist and prescribed him a new anti-seizure med called Zonegram. He started his first dose of Zonegram that night.

August 30, 2008: Thomas has taken 2 doses of the new med... becoming increasingly fussy for some reason.

August 31, 2008: Thomas is incredibley fussy today. Not napping, still eating, but just fussy. We notice that Thomas' color is changing a little bit... maybe getting a bit pale

September 1, 2008: Thomas is still fussy today. He feels a bit warm, but we think it might be his teething. He is getting a little bit more pale. Has recieved 3 doses of Zonegram. He is just really not acting like himself.

September 2, 2008: Brought Thomas to daycare today and his teachers commented on his color. They think he looks really pale and like he doesn't feel good. It is hard for me to notice b/c I see him all the time. 4 doses of Zonegram in his system.

September 3, 2008: Thomas DID NOT sleep at all last night. Brought him to daycare this morning and James and I stayed at home from work so we could sleep. Daycare called at 8:00a.m. and said that he had another seizure. We drive over quickly and just decide he doesn't look good at all so we want to go to the ER. We take him directly downtown to Texas Children's ourselves. We get to the ER and they admit him right away. The dr's don't seemed concerned about the seizures- they are more worried about how pale he is, atm he looks comletely white like a ghost. They try to take his blood for testing, but notice as soon as his blood leaves his body and cools down a bit, it clots. They figure out his body is producing some sort of antibodies against his red blood cells and his body is basically attacking his own blood. They say he is severely anemic. Hemoglobin and hematocrit levels are supposed to be around 12 and 30 respectively- his were at 1 and 3- so low, deathly low. Thomas has 2 seizures while in the ER. At 8:00 they bring Thomas to the pediatric intensive care unit. They bring us into a room by ourselves and 3 chaplains walk in--we are thinking that Thomas has passed. They tell us that Thomas has a 50/50 chance of making it. He has hemolitic anemia and needs blood transfusions. The risk is that when he recieves the transfusion his body will attack the new red blood cells and begin clotting...then he would pass away, however, if he did not get the transfusion, he would pass as well. A hard place to be. We prepare for the worst. Thomas gets baptized and we start thinking about arrangements. They begin the first transfusion and everybody is just waiting b/c they think he might reject the blood and pass away. 2 hours later the transfusion is done and he has made it through it. His hemoglobin levels are slowly going up.

September 4, 2008: Thomas recieves 2 more transfusions and is doing better. They are trying to figure out what caused the hemolitic anemia. We let the hematologist/oncologist know that we suspect the new anti-seizure medicine, Zonegram, as a cause for the anemia. She agrees but is hesitant to say that a drug caused this. Thomas gets a 3rd and final transufion, levels are back up a lot. They want to give Thomas a new anti-seizure medicine called Keppra...we tell them no, that we want to put him back on phenobarbital b/c he had had no reactions on that and it worked..they did put him back on it.

September 5, 2008: Thomas gets moved up to the regular floor... his levels are at a normal state right now. He is pink again and acting himself. Eating well. Looks like he beat the odds. He will recover and hopefully not have anything like this happen to him ever again. The hematologist is filing a complaint with the FDA about the drug. They will give him a EEG and MRI. We are trying to decide what actions we are personally going to take as far as this medicine almost killing our son. Will post more updates. We are still in the hospital now.

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17 Comments on Thomas Beat the Odds


katiea - Wednesday, 10 Sep
Schoppe, your family are in my thoughts and prayers everyday! give little thomas a big ole kiss and cuddle for me. keep us posted mate, thinking of u all
xoxoxoxo

conita5 - Monday, 8 Sep
schoppe honey i am so sorry that your little man had to go through all that. but i am so happy to hear that he is doing better. you guys will be in my prayers. keep us posted. talk to you soon.

LOGANSMOMMA - Monday, 8 Sep
SCHOPPE... I CAN NOT IMAGINE WHAT IS GOING THRU UR HEADS I AM SOOOO DEEPLY SORRY I AM. HES A TOUGH LITTLE GUY AND HE WILL BE OK... I HOPE U GUYS GET TO COME HOME SOON AND GET BACK TO NORMAL I KNOW ITS ROUGH BUT U R A STRONG GIRL!!!!!!!!!!!!!!!! TELL GISELLE HI FOR ME..... TALK TO U SOON
ASH

jpcm - Monday, 8 Sep
OMG, i can't imagine, what yall are goign through, we are praying for Thomas....constantly....and I had a talk with Kimee, she said she would let him know...he has to stop being stubborn, and get it together..or she would get onto him. She says, they still have to plot against us. I hope everything from here on out...is wonderful. I'm glad they put him back on first meds!! Keep us posted!!!! Love yall!!!!

momof3boyz - Monday, 8 Sep
Your family is in my thoughts......I am keeping my fingers crossed for you guys..I am so glad Thomas is doing better..I hope it all keeps going up.....Thank GOD he has a guardian angel up there....someone is keeping the lil man safe through this.....Lots of love!!

waiting4aiden - Sunday, 7 Sep
omg. i had no idea that Thomas wasn't doing well. Im so glad he is doing better though. Someone that cute can battle ANYTHING!!

kisses and much much love for ALL of you!

kris10 - Sunday, 7 Sep
i will totally be praying for your family...i hope that thomas just keeps getting better from this point on. i'll be thinking of you. xox

hoosiermommy - Sunday, 7 Sep
God, my heart goes out to you. I teared up reading your update. Will pray for you that things will be ok now.

daisymum2be - Sunday, 7 Sep
Omg poor thomas! I'm so glad he's doing well though, he's a tough little man!

Thinking of you all, hope everything's back to normal soon! x x x x x x x x x

elizhay - Sunday, 7 Sep
Im so sorry to hear you news. I am very happy that he is getting better. You and James are in my thoughts and prayers.
Amanda

cait - Sunday, 7 Sep
oh my god!!! I could not imagine what you were going through. Thomas is such a little fighter..you must be so proud of him. When you have a chance give the little guy a big hug and kiss for me!

pooka - Sunday, 7 Sep
aww i sure hope this is the last of the rough spots for poor little Thomas, no baby should have to endure this :( or mom or dad either! My heart goes out to you guys and poor Thomas. I hope he is home and everything is better soon. Sending you all some white light for a speedy recovery.

dixiemama2be - Sunday, 7 Sep
omfg krista you have me in tears!!!! omg our little thomas is such a fighter... ugh i dont even know him and i just love him...maybe its his and jennas connection lol... omg... please keep me updated...

Binkybobo - Sunday, 7 Sep
Praying for you. If you need ANYTHING! A shoulder, a friend, a babysitter for Giselle know that I am right around the corner.

kelly-roo - Sunday, 7 Sep
we will keep you all in our prayers!

nelly5 - Saturday, 6 Sep
im so glad he is doing better!!!!!

romma - Saturday, 6 Sep
thank God!!!! amen he is okay dont worry keep ur faith and strength/ we still praying for you and for guidance for you and your family. take care and kiss old man thomas for me.