More results more things ruled out‏

Phil wrote this as an email to the fam...I thought it summed things up well, so I just copied it. 

Pierce has been doing very well the last few days.  He is a lot more active and alert.  He is breathing over the low settings on the ventilator.  The medication he is on to help with his breathing has helped his respiratory rate and is helping him take deeper breaths.  

His nurse Lynette is amazing.  She is so interactive with Pierce and is very good at keeping him happy.  Like Nana has said she is helping with little exercises with his arms and legs.  They mentioned they'll get a therapist to work on this once he progresses a little more and is off the ventilator.  We are so grateful for her and hope she is with Pierce for everyone of her shifts.  

Pierce's entire life is one big mystery.  Instead of learning what he has, we are learning what he doesn't have.  Each time they are doing a test or are considering something he may have, the test comes back normal.  What a roller coaster!  On Sunday his new physician at rounds asked me to summarize what I understand about my son and why he is here.  He said there is no wrong answer I just want to get a feel for you knowledge base.  I gave him a brief overview of what has gone on and I saw him write a couple of things down.  It was sad but almost funny that all I could say is a certain thing happened and they thought it was this and then this was ruled out.  During our conversation I was able to ask what he thought about all this and assess his thoughts on Pierce's apnea and basically we don't know what is going on yet. 

We have ruled out sepsis, meningitis, UTI, necrotizing enterocolitis, bowel obstruction, deficiencies in electrolytes, brain bleeds, structural brain abnormalities, seizures, and metabolic disorders that show up in blood, urine, and brain CSF.  Today we are very grateful to report that the mircoarray SNP genetic test came back normal.  This rules out a lot of genetic issues that have been thrown at us during the last 4 weeks.  Some of these genetic disorders that got ruled out today were very scary and would have been challenging.  We are happy it is normal, but at the same time want improvement or a diagnosis.  If he keeps getting better we are okay not knowing why all of this happened.  They have been telling us they may never get a diagnosis and he may have deficits similar to other disorders or he may just snap out it.  Fingers crossed!

We are so grateful for such a great family.  Thank you so much for your support during this whole thing.  We can't believe that it has been 4 weeks and we are almost in the same position except for the things we know it's not.  

The plan is to let the theophylline get to therapeutic levels tonight and start steroids.  If he continues to do well tonight, they are going to try to extubate tomorrow afternoon.  They will most likely go to CPAP which gives more support than the high flow nasal cannula.  We are hoping he doesn't have any episodes of apnea and low heart rate.  If he does it is back to the drawing boards. 

Now for a small side note from me:

On Wednesdays they have a parent lunch. You go and they talk about something applicable to us ie: shaken baby, talking to your doctors, music therapy, medical librarian. After we eat and have the presentation we go around the circle and give a little information about our baby and us, unless you dont want to. 

We have been to each one since we have been there. Today was the first time that it was pretty emotional during the sharing portion. Some people have been there for months, others have months to go and some only a few days. It is really humbling to hear everyone's stories. One lady was even crying because she is there with her baby who has jaundice and she felt like that was such an insignificant thing. She said "I shouldn't even be at this table with all of you people, my baby only has jaundice and we will be going home soon." I remember thinking the same thing our first week. "whoa these people's babies all have to have surgery, all my baby needs is for his lungs to get a little stronger"....little did we know we would still be there 4 weeks later. I love going to the parent lunches. It is nice to get to know some of the other people you see on a daily basis. We met one lady who actually lives in a neighboring neighborhood. I see some of these people more than my family, and it is nice to learn more about them..