This past Monday we finally arrived at Duke....after an examination and historical discussion the first doctor left for 45 minutes. She returned with the head doctor where they fired a bunch of questions! The lead doctor had walked in and said "little buddy, you don't look like you feel well." Hmm...that is how he always looks. While we had waited they had conferred with a team of doctors at Duke (their team, lead researcher, lead hematologist, lead liver doctor) and came back with a bit of a frustration (on our part and admittedly theirs) that we would be going home again without another answer but at least another appointment. They said that they felt this was not an immunological issue since he has never had infections (never been hospitalized, never had one). The TRAPS (strand of periodic fever syndrome) could possibly be it but the chromosome he has that is found in this condition also is found in many normal children as well but they left a message for the expert on TRAPS at NIH to discuss his case. They said they do not know much of this condition so is why they went to the expert. They felt, and upon all their discussions, that Patrick has a liver problem. We received a referral later that night for the liver doctor -- we will return to Duke on June 9th. The immunologists still felt Patrick warranted a full immunological work-up to make sure nothing was overlooked - I think they felt bad we drove all the way to not get an answer. The main doctor said he felt nothing would turn up on these tests. If so, we will return to them.
You all might not believe it but Patrick truly is very good at giving blood...we went and Miss Trudy just kind of gave me a look and asked how he did with taking blood and did we need someone else in the room...at this time Patrick had already sat down put the bar down and pulled his shirt up ready to go. I glanced over and he had 10 vials to fill! Once number 9 went in his arm he had completely lost color and Patrick had squeezed my hand...he looked like he was going to pass out....and the blood seemed to just stop. She undid the band and had to massage his arm and filled number 10! He did walk away with a pretty nifty sword! I always say that Patrick is a little warrior and he certainly earned that nifty sword!!
So...we have an appointment the middle of May (local liver doctor) and beginning of June (liver doctor Duke). We also await the results of the extensive blood work-up. We also follow up with hematology/oncology in July. This will be 3 years in July so hopefully we really are narrowing down on what Patrick is suffering from and maybe actually a plan to help him.
Please keep him in all of your prayers...little Patrick is really a tough guy for how little he is. Pray for the doctors and researchers to figure out what is wrong and for some sort of resolution ... just a plan. Pray for us in knowing how to do this all...and pray for Brody, Regan and Alexander too in continuing to be supportive and attentive to Patrick. He is really spoiled with his brothers, sister and cousins! Everyone realizes how special this little boy is!
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