Saturday, January 19, 2008

Looong day at CHOA


Let's start from the beginning:

Thursday I called the RN at Scottish Rite. We were concerned about Ian's mouth taking so long to heal from the tooth coming out. The past few nights had not helped. We found him all bloody where he had attempted to put his fingers in his mouth. We figured they may give us some arm braces to keep him from touching it so much. Besides that, we're not sure what else to do. After taking to the nurse, we scheduled an appointment with the dentist for Friday morning.


DJ takes off of work Friday to make the appointment. We head out early and get to Scottish Rite around 10am. We meet with Dr. Thomas, who tells us that he is very surprised Ian is not yet healed. After all, it had been over a month ago that he pulled a pre-natal tooth. He decides it be best for us to go to the cancer and blood disorders center, which is also a part of Scottish Rite. His concern is that Ian may have a mild blood disorder, causing the sore on his mouth to take longer to heal. Our appointment with the hematologist is scheduled for 12:30 that day. This gives us just enough time to grab a bite to eat. However, neither of us has an appetite. After a slew of paperwork, we finally meet with someone. The doctor does the normal checks: ears, weight, length, eyes. He's weighing in at 11 lbs., 14 oz. and is 23 inches long. Our little boy is growing so quickly. We have to wait a while until they are ready for testing. After a while they come and I have to leave. I don't do so well with needles and such, so DJ stays with Ian. They take some blood to test him for hemophilia. We wait a while longer to get some results from the tests, some of which will take several days to get back. The main one we wait for is to know whether or not there is a problem, which takes about 40 minutes. They come back to tell us that his levels are low, but not by much. It is difficult to know if he does have a disorder because very little research has been done for children his age. To know for sure he will be tested again at 12 months of age. Right now they are treating him as if he has von Willdebrand disease. It is usually an inherited disease, but can also come from a mutated chromosome. VWD is the most common blood disorder, although little is known about it. For now, Ian is taking Amicar. This is an agent to replace the ones he lacks. Hopefully this will help his mouth to heal as it was supposed to in the beginning. After all of this with the people on the fourth floor of Scottish Rite, we head back down to the more familiar second floor: the craniofacial center. We see the dentist again, who cleans Ian's mouth of the scab that had formed again. We also see the surgeon and orthodontist, who give us words of encouragement. They tell us Ian will have to be given another similar agent prior to lip repair and palate surgeries to prevent any major blood loss. After a quick feeding, we hit the road around 5:30pm to brave the Atlanta traffic.

The past 24 hours or so have been pretty good. We have been giving Ian the Amicar every 12 hours. It tastes so bad he cries. No mama wants to see her baby cry. We have also been using Ace bandages on his elbows to keep him from bumping his healing mouth. His mouth is beginning to look much better. For now we ask that you keep Ian in your prayers. Although we are unsure if he has the disease or not, it's still a very scary thought. Having a cleft is enough for him to have to handle, but a blood disorder too? I have been having trouble thinking about all that he is going to have to go through. I don't want him to have to suffer any...from the multiple surgeries or from being picked on for looking different or anything at all. He's perfect in my eyes. I hope the world can see him that way.

5 comments:

HeatPete said...

You write about hoping the world will see your baby as perfect, but I see two parents and a God that Already provides more love and care for Ian than this world would ever be able to provide. You are in our constant prayers. I often think about how the world will see our baby as well, and I understand the feeling of wanting everyone to see your baby the way you do. Coming from someone that is part of that world, I don't think Ian could be a more adorable little boy. Every new picture I see of him makes me smile.

John, Shannon, Broderick, Camden, and Adalynn said...

I think I have finally figured out who the Mary is that posted on our blog...let me know if this is you, by posting a comment on our blog.

Assuming that you are...yes, we too, use CHOA and Dr. Burstein did both of Adalynn's surgeries. Her first was at 3 mos of age (in 9-2007) and her palate was repaired at 6 mos (in December). What a journery we've been on.

I look forward to reading more about you and your little one. How wonderfully blessed are we to be taught so much by someone soooo little!

John, Shannon, Broderick, Camden, and Adalynn said...

journey...not journery...:) OOPS!!!!

Trisha G said...

DJ and Mary. I will say a speacial little prayer for Ian each and every day. Mary, I agree with you...I an is perfect in our family's eyes. He is the sweetest and cutest little thing I have ever seen. I so fell in love with him at Christmas. I love the blog that you have..it keeps all of us update on the little guy. I miss you guys and hope to see you soon.

Darcy said...

Praying that the tests will all come back negative and this is just a 'bump' in the road.

We've hit several bumps in our journey over the last three and half years with Rachel. And each time with faith and trust, the bumps turned out to be just that, bumps.

When Rachel had her twelve month check up, her Pediatrician wasn't seeing the right amount of creases in her thighs when he did the thing to look at the hip development. We were sent for Xrays. While I waited for the xrays to be done and then the films to carry back, I prayed and prayed. Like your thoughts, I thought she already has enough at this time to deal with, not anything else. UGH! But the Lord was good, and turns out everything was fine. Her little thighs were just too chubby to see the lines the Pediatrician is supposed to. LOL.

Praying this turns out to be just a bump. {{{HUGS}}