Thursday, January 13, 2011

Tiny whispers

I had a first today for me - I had to fire a doctor. It felt horrible, but it needed to be done. I love Tomas' hematologist, but not one of the other doctors in the clinic. We have seen this other doctor several times, and although he is kind he has a very laissez faire approach to patient care.
I called Tomas' CCBD clinic two weeks ago and asked for an appointment because I was concerened about his labwork trend. This doctor saw us (our regular was not in clinic that week), and he dismissed it. For today's appt. I really needed someone to listen to my concerns, and it was supposed to be with his regular doctor.
However, Dr. X walked in the room. My heart sank, I asked if we weren't supposed to see Dr. Y. He said she was around, and asked what was going on with Tomas. I told him everything and that I was worried. He said it sounded like it was a follow up for GI. I said I was having trouble getting a timely response from GI and getting Tomas' care moved over to the GI clinic at the hospital also would take a while. He said that would be ok.
I took a deep breath and said, "I'm sorry, but does this mean we are not seeing Dr. Y?"
He asked if I wanted to see her, I told him I did and that for continuity of care for Tomas I thought it would be better if I stuck with her.
He told me he had seen Tomas a few times already. I told him I'd really like to stick with one doctor throughout this diagnosis. A few more words (none unkind) and he was gone. That was so hard!!! At that point we were called back to lab.
Later, Dr. Y walked in and I don't think she even knew Dr. X was in because the first things out of her mouth were, what is going on with your baby, we need to check this, and this, and that.
She looked over the spreadsheet I put together and was very concerned about the low calcium and low protein. She said his body has very little muscle mass and is using his nutrition to rebuild lost tissue it is burning for energy. He is unable to build any significant new tissue and his nails are showing signs of chronic calcium loss. The she said very firmly, "This is not diet related!"
She also said that as this point she thinks he has two separate syndromes going on (not including Down syndrome - we are so far from that now it is not even funny). One syndrome to explain the neutropenia, liver and hypoglycemia; and another for the inability of his body to metabolize food properly. His labs showed a huge increase in iron, which she said was because I had just given him a dose a few hours earlier. However, the iron binding proteins were the highest she's seen in anyone in a while, which tells her his body is absorbing the iron but unable to use it properly.
She asked if I had though about moving GI care back to the hospital clinic, and  I told her that the scheduler said I needed to have records sent over, the doctor would need to review, and then Tomas would need to get a new patient appt. She told me to wait a minute, left the office, came back a few minutes later and told me she and the GI were going to meet this evening about Tomas!
There was so much more but honestly my head is swimming. What it boiled down to was she thought it was time to be very aggressive in getting some metabolic testing done.
She already knows GI wanted to do the scope and liver biopsy, and she wants a repeat bone marrow biopsy. So, the plan right now is after tonight's meeting, and hammering out of details, and possible bringing in of endocrinolgy, Tomas will get admitted. I don't know when, but am assuming sooner rather than later since the GI bleed still needs to be addressed.
I am on pins and needles. My biggest fear right now is that something will fall apart and the admit won't happen, or that someone will tell me that there is nothing wrong with Tomas, and to stop worrying.
I hope that I finally have their attention and can keep it this time long enough to get a diagnosis, and a treatment plan. His PT was out this afternoon, and since Tomas had not had any floor time this morning, and had taken a nice afternoon nap I was hopeful for a good session. He played a bit on the floor, and then tried to pull up to stand (to get my computer - turkey!) and then about 25 minutes into the session he scooted over to me and grabbed at me until I picked him up. Then he laid his head on my shoulder, panting from the hard work, and rested.
She wrote in her note that he was having difficulty acheiving tasks he was performing well just a few weeks ago, and that she was bringing a feeder chair next visit for supportive sitting when he is worn out. Watching the progressive weakening has been the hardest part. It is by no means severe, but I have noticed it for a while, and now the therpists are starting to see it. I pray once we get the iron under control that will resolve most of the stamina issues.
Thank you to all who keep him in your prayers. They are powerful indeed. They came in like a thousand tiny whispers and pushed me forward this morning to advocate for my son.


  1. praying, praying, praying that everyone communicates and that there is a community of spirit in getting the answers you and Tomas need!


  2. Way to be firm! Continued prayers.

  3. Good job Mama!! Praying he gets admitted without delay and finally an answer, a real answer!!!

  4. I just picture that precious little head,resting on your shoulders and it makes ME want answers for you ... I can only imagine how you must feel.

    We are our children's biggest and best voice and you do an amazing job of it with Tomas.i have no doubt you will get to the bottom of this and accept nothing less of total and complete answers.I will be praying for that.

    Is it not amazing that the issue of Down syndrome has become such a NON issue?Least of our worries in many moments.thinking of you and praying for that admit.