Caleb was born with two rare syndromes, CHARGE and DiGeorge. Caleb is the 6th person in the world born with both syndromes. CHARGE is a multisystem-effecting syndrome which can cause several severe anomolies. DiGeorge prevented Caleb from developing an immune system. He spent over a year straight in the hospital, had multiple surgeries with a possibility of having more in the future. This blog details his heroic journey and story. God Bless Caleb!!
Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"
Thursday, April 12, 2007
Happy 9 Month Birthday Caleb
Yes, he is a month older and looking great. Happy B-day bubber.
Well needless to say the meeting occurred on Monday, however, surgeries are on hold again as Caleb has been dealing with some nasal congestion. So all surgeons do not feel comfortable putting Caleb under general anesthesia as this may effect his lung, possible pneumonia if he would aspirate during surgery. So until we can resolve this mucus issue things as far as surgeries are on hold.
Biopsy results from Duke: Well it seems to the pathologist from Duke that Caleb does have a form of a milk protein allergy and may be showing signs of Graft vs. Host disease. Graft-vs-host disease (GvHD) is a complication that is observed after allogeneic stem cell transplant. GvHD occurs when infection-fighting cells from the donor recognize the patient’s body as being different or foreign. These infection-fighting cells then attack tissues in the patient’s body just as if they were attacking an infection. GvHD is categorized as acute when it occurs within the first 100 days after transplantation and chronic if it occurs more than 100 days after transplantation. Tissues typically involved include the liver, gastrointestinal tract and skin. GvHD usually occurs post transplant and not before they are wondering if Caleb's immune system is so suppressed that he was not able to get rid of my Tcells and they are fighting one another. This would be the first case Dr. Markert has seen of this case if it turns out to be GvHD. They will know after they get some blood work they took from me and compare it to the Tcells they have seen in Caleb. We should get those results sometime at the end of next week.
Also, Caleb has developed an umbilical cyst...another thing to add to the list. This would have to be taken care of in surgery also. They also have been keeping a close eye on his shunt as they are wondering if the new setting was working. They have decided to change the setting one more time to see if there is any change. If there is no change, they will tap the shunt.
Also, I am experiencing technical difficulties with my computer and cannot do my videos or view others' videos. As soon as I figure out what is wrong I will post more video.
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2 comments:
His skin looks so good today! And it looks like his hair is coming in again!?!?! What a handsome guy! :) :) :)
I'm sure you're feeling frustrated...hang in there!!
Love you all...
Jess
Cute as always and my thoughts and prayers are with you all!!
Crystal and Eva
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