Not a lot new to report today! The main problem now is Alex's pancreas. His numbers are rising daily. We cannot go home with his numbers rising. At this point he is also in quite a bit of pain. We actually are pretty sure that some of his oxygen problem is that he is in so much pain he is not breathing deeply. So at this point we also have him on painkillers. Dr. Koenig feels like we need to do the MRCP (specialize​d MRI of pancreas) while we are here. So I am not sure how long, but at least a few more days.

On a positive note...Dr. Koenig came and hung out with us for about an hour today. Alex was loving on her. They played a game and snuggled and just had a really nice time.

Thanks for all the prayers.

Ali

Alex continues to improve daily. We have had little setbacks, but overall he is so much better then a few days ago.

We had to put Alex back on oxygen last night. He is fine when he is awake, but is struggling when asleep. Dr. Koenig is hoping we can go home without oxygen. We are going to watch him a few more days. If on Monday she is comfortable with everything else she but he still needs oxygen at night she will send us home with it.

There is now only trace protein in his urine. This is great. It means that it was strictly because he was sick and his kidneys are working fine.

His platelets also continue to come up. While I did not like hematology (and Dr. K was well aware of this by the time she saw me) she feels they are good at what they do. Apparently even though they didn't tell me anything, they had quite a few suggestions that they discussed with her. As long as she is in the loop and they are communicati​ng that is fine with me.

The pediatric team willingly ran the LDH subclasses this morning. The results are not back to us yet.

The general consensus is that our biggest concern right now continues to be Alex's pancreas. The general belief is that he has had pancreatiti​s longer then any of us knew. He is in another bad flare right now that was sparked by the flu. We need his pancreas enzymes to come down before we can continue with plans for GI surgery.

Our pediatric team thought we might get to go home tomorrow, but Dr. Koenig thinks he still looks pretty puny and just wants to watch him for a few more days.

I am struggling with a nasty cold, but definitely not the flu. The clinical pharmacist who we love brought me some sudafed hoping that will help.

Please pray for Alex to continue to heal. Also, for me to keep my strength up so i can care for him

Ali

I am really frustrated with a doctor today so i figured rather then sit here fuming I would post my vent and let it go!

The lab that was abnormal this morning was LDH. It tests for breakdown of cells or muscles. It was run to see if he was hemolyzing (or breaking down) his red blood cells causing his anemia. The high end of normal is 160. Alex's was 1796. Basically extremely high. When I did some research, I found that this test has subclasses you can run that help determine where the breakdown is happening...​heart, liver, RBC, or somewhere else. One of the things that can cause the LDH to be high is acute pancreatiti​s. Well, I just spoke to the hematologis​t, she refuses to run the subclasses because she does not feel it is coming from the blood cells. I explained the concern over Alex's pancreas and that this test could be helpful if we knew it was elevated b/c of his pancreas. She didn't care. She said her specialty was blood and she didn't feel this was from blood so she wouldn't order it. End of Story. I do not think very highly of a doctor who would let a lab value that is 10 times normal go "because it is not their specialty". Doctors are supposed to treat patients. It would have been no skin off her back to run this test. She just didn't care enough. I will ask Koenig or Gi about doing the subclasses, but it just urks me.

Ali