Wrong answers, back to square one!

GRRRRRRRRR. That says it all.

Dr. Knutsen (the immunologist at Cardinal Glennon) called me today. I am so glad he did. I had a ton of questions for him. I told him I didn't understand why we were still doing this Genetic Testing if everything else came back ok. He said "because everything didn't come back ok." He told me that Bryson's T-Cell's had a significant decrease in function and his Memory/Helper B-Cell function was low. He said he has a total absent response to the prevnar vaccine (pneumococal) which is rare to see a complete absent response. I was so frustrated. I told him that his nurse told me everything was ok except his immunoglobulin function was low and that was probably from parvo. He said no, that everything else was off as well. I told him I was still waiting to hear if we got the approval to do the genetic tests and he said he had a note from the nurse saying that she got the approval at the beginning of this week. Why the hell didn't she call and tell me this? I would of had him up there that day to get it all drawn! GRRRRRR.

I asked a ton of questions and didn't seem to get to many answers from him. He said that he would love to give me answers but just can't until he has all the other stuff in front of him. I asked him if this would be a chronic problem or if we would have to do more IVIG, and he said we would probably be looking at doing IVIG down the road, but can't answer anything else until he has the pieces to put together. GRRRRR. I understand this and what he is saying but I feel like this all totally came out of left field and I was just feeling so good about him with everything and now we are back to the damn waiting game. GRRRRRRRRRRR!!!!

That's all I know for now. Bryson got his Prevnar booster yesterday so we will redraw his titers in 3-4 weeks to see what his response is. (I saw it leaking out of the hub of the needle and his leg after the nurse at the office gave it to him, so my guess is that it will still be low because it all leaked out of him!) Anyway, we started him on the Omnicef like he wanted so hopefully that will keep us well!

Bryson's New Trick...

What a fun day we had at the Eisel house yesterday.

Bryson learned a new trick...how to turn completely blue! I have never been so terrified in my life. I wasn't even this freaked out when he was having his seizures or in the PICU. This was awful! I had the phone in my hand and I was getting ready to call 911 when he finally pinked up. I didn't want to take him to the ER, because once it was over he was fine and I knew they would just poke him and stick him to no end so I took him to the pediatrician's office and they said that he has now become a breath holder. GREAT. I need this like a hole in the head. She said it can get pretty bad, some kids put themselves into seizures and passing out and that it will just get worse as he gets older. She said sometimes you have no choice BUT to call 911. This is just great. He did it again today during therapy, but not as bad. It sure scared the therapist, though. She was ready to give him oxygen. I guess kids tend to do it more when they are angry or upset, in both cases for him he was crying. I knew kids could do this but had NO idea it would be this terrifying. Lets just add one more thing to our pile!

Otherwise things are good! Bryson has been really healthy. We are starting him on the antibiotic as a prophylactic and are STILL waiting to get the genetic tests done. Its very frustrating.

Hope everyone has a Happy and safe Halloween!

OK

Ok. So here is the news...

#1 They want us to repeat his prevnar vac. That is the one to protect against pneumococcus and meningitis and blood stream infections. His titers were low for that (Which we already knew). So he will get the vax next week and then redraw the titers in four weeks to make sure they went up.
#2 They want us to start him on Omnicef (antibiotic) once a day as a prophylactic treatment. We don't really like this idea. We have an appointment with our ped next week so I will talk to her about this one. His immunoglobulins were still all really low. So still, no daycare or crowded indoor public places.
#3 The B-Cell labs came back ok, but they still want to do the genetic testing...this I don't understand. I have a lot of questions for them. I don't get why we need to still do this. Unless there is something that I am not aware of, if his B-Cell tests came back good then why do we need to do this? I don't get it. I talked to the nurse yesterday, and I would really like to talk to the doctor. Those of you out there who have been through a lot of doctors like we have, know its not so easy to get an actual doctor on the phone!
#4 I guess that's it for now. We are still waiting on the approval to get the genetic stuff drawn. We have an appointment with our pediatrician next week. Those two things are what we are waiting on.

Really, I don't feel like we really got ANYWHERE with all this stuff. I guess that's good, but its just so frustrating. Not that I wanted to hear that there is something really wrong with my baby, but I just feel like we keep putting him through all this testing and don't really get any answers except it all turns out to be related to our good ole' friend PARVO.

I'll update you all as we get more info. I think that's it for now! Thanks for all the prayers!

NOTHING YET

We still haven't heard anything about Bryson's results. I called last week and did find out that his ANC (neutrophil count) went to 1900, which is not the direction it should be going in! ARGHH. I will probably call on Wednesday or Thursday to see if they have the rest of his stuff back. That's it until then! Thanks for all the kind words and thoughts!

Bryson scooting!

Bryson is scooting! Yeah!! I think he looks hilarious when he does this. You can really notice his left leg not working as well as his right. I think that with time he can get it there!

Cardinal Glennon

Today was our big appointment. Poor Brian was to sick to go with us, so he stayed home in bed. I really liked the doctor and his staff. Basically, he thinks that Bryson has some sort of B-Cell issue. He gave me the name but I can't remember for the life of me. I know it had something to do with lymphocytes. He didn't give me much information after that, he said he wanted to wait until after he did some more labs to see for sure. He said he doesn't like giving out to much information about a disorder unless he has the definitive diagnosis. Which just drives me insane. He did talk about his neutropenia, and said that this diagnosis would fit right in and would be the main reason for his neutropenia issues. Not Autoimmune Neutropenia as we thought it was in the past. He said even though his numbers have been fine lately, he said they can really fluctuate still so he wants to continue to do frequent CBC's. He wants to do genetic testing on him as well, which we weren't able to do today because we have to wait until insurance approves it. They took so much blood, again from Bryson. However, it was like night and day compared to St. John's lab. The first thing they asked me was how much he weighed and determined that they couldn't take all the blood that the doctor had ordered, but we should be able to get the info that we need from what they did take. Plus, he will probably be going back next week for the genetic testing and we can get the rest then if we need to. At St. John's they took way more than they did at Cardinal Glennon as far as blood goes. I knew it was to much. Also, they totally numb the area with numbing spray before they stick, so nice. He still was pretty pissed off, I think it was us holding him down that made him so angry. Anyway, he did great. I am just frustrated, because its more waiting since this stuff will take about two weeks to get back. ARRGGHHHH. I just want the answers. I want to know what it is, and I want to know what to expect for him. I guess its in God's hands now! Lots of prayers would be appreciated!

We have been so lucky. Bryson has been so healthy and hasn't had any issues yet. Let's hope its a good winter...no RSV please!!!

More Pictures

I thought I would post some new pics of the boys. We really don't have any new news around here. We go to the Immunologist down at Cardinal Glennon on Thursday, so nothing really going on until then!

Brian blew dry Bryson's hair after his bath...this is what it looked like afterwards! So funny!

Bryson loves his cookies...maybe a little to much! What a mess!!

The three boys at the Zoo.

Bryson in the tub. I think he looks like a turtle when he makes this face.

My new favorite picture of the two boys.