Thursday, July 29, 2010

wait and see, and mass confusion

When something traumatic happens in your life you slowly realize your world will never be the definition of normal again. Just when we think we may be approaching a level of normalcy, life slaps us in the face. I know many of my friends with children in Jude's situation feel the same way. I think there is some veil on life that makes us feel like we cannot just let go and scream. We keep a facade about us that everything is going to be alright. Occasionally I just want to flip the heck out, and tonight is one of those nights.

Everything has been going well lately. Jude is moving more, he is happy, and he is trying to communicate. Emily is finding her place in life, and Mike's photography is finally taking off. His photography is his wish in life, and my salvation from working so hard. Yet today a possible silent masked monster has us yet again lying in wait. It seems, like any issue presented in regards to Jude, it is a "wait and see" type of problem. Jude went in today to get his new monthly prescription of Boost, and Pedisaure. This means a mandatory iron level test, and Jude's was very low... anemic low. It had dropped pretty substantially since his last test. The nutrionalist seemed very concerned, but assured Mike that she trusted our circle of doctors, and insisted we call them.

When Mike called me I immediately thought of the medication we chose to put Jude on "Felbatol". We knew the risks the medication had, but due to Jude's severe seizure issue we chose to move forward with the medication. We knew that Jude's seizures could eventually be fatal, and we knew the risk of the medication was worth it. I knew one of the main side effects of Felbatol was liver damage, or aplastic anemia, yet we moved forward to try and save him from the seizures.

I decided I wasn't going to panic when Mike called me, and I simply started calling doctors. The Pediatricians office was worried, and suggested a blood test. The neurologist didn't seem concerned at all, and simply said it was an iron deficiency due to food. I immediately felt relief when the neurologist said this, and I relayed I trusted the doctor. Once I hung up the phone I become worried again, because Jude's diet is only Pediasure, and Boost.......both rich with iron. Mike then put a call into Jude's GI Specialist who works hand in hand with the neurologist. His comment was that he was "reasonably concerned" and he ordered the blood test for tomorrow. He doesn't believe it's his diet, and said "I don't think this will be a cause for alarm during the weekend, but bring him in first thing Monday."

We aren't stupid! We know what we are facing. We hope this is simply a test error, or that somehow, and it is a long shot, but it is a dietary problem. The doctor made clear if this is a liver problem that is causing an absorption problem, the results will be devastating. I choose to believe the power of prayer will prevail, and this is just a test problem. This test was done via a finger prick, and I think that will reveal problems. There is no telling the amount of plasma that came out with the blood thus creating issues with the test. I just hate being worked into a frenzy for no reason, but I would prefer being in a frenzy vs a real problem.

Jude looks well, and is acting well. I am hoping this isn't a hidden problem, like the doctor said it could be. Bleh, I hate being on a wait and see schedule.


Katy said...

Oooh--I hate that too. How is his color? Are you seeing any yellow in his complexion? I really hope that this is a fluke thing as Jude has been doing SO well on the medication.

Cjengo said...

No yellow at all Katy, but he is really pale, but he is smiley. I am keeping hope everything is fine