The CT scan showed swollen lymph nodes throughout Malachi's entire body. On a good note, the did not appear to resemble anything like leukemia or those types of things, so that's encouraging. The doctor is pretty certain that Malachi appears to have an atypical DiGeorge presentation. He was tested for the DiGeorge Syndrome back when he was only weeks old. The lab, however, was unable to get Malachi's cells to divide appropriately in the diagnostic tests and after three tries, they stopped sending it. The main DiGeorge characteristics are those of hypocalcemia (low calcium levels) and absent/partial thymus (meaning a low immune system)--both of which greatly affect Malachi.
They decided not to do a lymph node biopsy because of how they appeared on the CT. They did still do a skin biopsy to try and get a better idea of what is causing the rash going on all over his body. The results won't definitely tell us what is going on, but they might help point to a conclusion.
So for now they are keeping him through the weekend for observation and then on Monday they will draw the labs that they need to send out for the SCID diagnostic studies. Then we wait. If he is stable, hopefully he will come home. We just don't know much at this point. If the SCID testing reveals that he has very minimal to no thymic function (the thymus produces T-cells which are the main source behind our body's immune system), there is a chance that he will be transferred to Duke University Medical Center for a thymus transplant. Obviously that would be our last chance type of effort and it definitely comes with its own set of risks. With a little research online, as of 2007 DUMC was the only center in the world that did this type of procedure.
It would obviously be ideal if we don't have to go this route with Malachi, but right now we just don't know.
OH man, I know you both must be so frustrated! Poor little guy. We are still praying for him. What a figher, he is. Hugs
ReplyDeleteI hate your still there- but glad he's stable. Glad to hear your close to getting answers. The transplant at DUKE sounds great. To know there are answers must be some relief.
ReplyDeletei agree about duke i have told you befor i know of another charger who had this and hes now three and is doing great he acutlay has a partial imune system now and all of us that follow caleb in charge world are estatic for that if you want to go see the story im talking about look at evas page and click on the link that says caleb and read the archive and also where it says view profile on his click that coz sarah has an old blog with soem stuff in it
ReplyDeleteHi Marissa,
ReplyDeleteYour Malachi is a fighter, maybe if the thymus is replaced, he can fight on his own. Thanks for the update. Our prayers are with you and the family everyday. God will deliver the answers!!!! All love and blessings, hang in there.