Alex and Maddy

Alex and Maddy

Wednesday, April 4, 2012

So Painfully Slow!

That is how I feel about this process! The good news is that Alex is feeling better overall. We are back into school. Alex is enjoying playing in his playroom. His labs are improving. Our pharmacist has been able to get IV arginine which was one of our biggest concerns. Unfortunately, we are making virtually no progress on getting Alex back to baseline. We have tried giving just 1 cc of med into his Jtube. He just cannot tolerate it. We are unsure if it is from pancreatitis, his motility being even slower then usual or most likely some combination of the two. After speaking to the GI we have given up on meds for the time being. We know that meds can be hard on his system even when he is feeling good. The plan yesterday was to try giving 2 cc/hr of water into his tube. We let it run all yesterday afternoon and last night, but the pressure in his intestines is too much. He backed bile up inot his tubing instead of the water going in. I spoke to the GI's office again this morning and we are going to try 5 cc/hr of water and see how that goes. I am praying that he can tolerate that tiny amount. In the meantime, we are still using quite a bit of nausea medication.
Alex is struggling emotionally. He is not mobile at all. He cannot carry his bag so he cannot even get into the bathroom by himself. We had a good friend send a rolling bucket to help him get around (Thanks Mariah!) so we are hopeful that will help. He is also upset that he can't lick any foods right now. We are dealing with blood sugars that are dropping into the 20's twice a day when we have to stop his TPN for his IV seizure med. We are also battling some symptoms caused by the fact that we cannot give most of Alex's meds. So many meds do not have an IV version so on top of pancreatitis,he is stuck with anxiety, neuropathy, back and leg pain and headaches. Needless to say I think we would all be a little crabby!

Sorry this is such a negative update, I did not mean for it to be. I am just trying to give a realistic update of where we are at this point. Please continue to pray for that little GI system to start to work again.


  1. Ali, I'm so sorry Alex is still struggling! Praying things start improving.


  2. Hi Ali,

    I am praying for Alex also. I hope he gets well soon. I miss all my hugs and kisses. Tell him I love him.


  3. Sorry that Alex is not up to par yet. Hopefully he will be soon.

    I have a son that has Mito. Doctors in St. Louis could not figure out why his blood sugars would always dropped and barely could keep them above 60. We finally came with a diagnose of Mitochondrial Trifunctional Protein Deficiency.

    Don't know this will help or not. But I don't like seeing this poor babies having to suffer like this.