The past two weeks had been without incident, until Braden starting missing the "white coats" again. He was more congested and 'juicy' than normal, so Brad and I decided to take him to the clinic this past Saturday to have him checked out. We wanted to be sure he did not have another pnuemonia, as we had a couple fever spikes and accelerated and deep breathing episodes starting early Friday morning at about 3:30 am, and again at 5:30 pm.
At the clinic, we saw the doctor on call, and nurses who have not dealt with us yet, or seen us in person yet (although they have all been briefed by our doctor many times about our "anomoly" situation). The doctor seemed concerned about possible pnuemonia as well, and the nurse was VERY nervous about his breathing habits (however, I must tell you that he was NOT in any kind of bad shape like before when we took him in, resulting in a hospital stay). The doc decided it was best to send us over to the hospital, and tried to get us directly admitted into the PICU, however the admitting doctor (one of our specialists, the pulminologist), was busy with a critical patient and had us get checked out in the ER first. The nurses said they couldn't believe how calm we were, and that we would be comfortable enough with the situation to drive the 8 blocks to get to the hospital, as opposed to calling an ambulance. Yes, WE had to calm down the doctors and nurses at the clinic.
So while our intentions were to avoid going to the hospital ER, that was not in the cards for us. Luckily teh doc we saw there, admitted us last time, so he was familiar with our case (which always helps - A LOT in our case!). He did chest X-rays and did blood gases and chemistries. While we waited, Daddy fed the baby, and of course - he calmed down and showed numbers better than he had in an entire three day period!! It was then that they decided to get us admitted to the floor, instead of the PICU. Brad and I have discussed that at this point, we are just no longer "floor" people. Not meant in any kind of 'elitist' way, just that it's harder to get what we need when we need it on the floor without 1 on 1 or 1 on 2 nursing, like the PICU provides and we have at home. We have everything we need at home, and it's more of an inconvenience to be on the floor where we can't access everything like we can at home or in the PICU in a timely fashion.
So we called the ER doc in and conferred with him about our results. While our chest X-ray showed no pnuemonia, we wanted to know the other results, as the last time our chest X-ray just showed bronchiolitis, it was actually pnuemonia. So we inquired about our white blood cell count, and it confirmed that he was not under any extra stress or fighting infection, as it came back at 11,000 - within our normal range. After discussing our wish to be sent home, the ER doc, our specialist, and the nurses felt comfortable sending us home since we were most comfortable with that decision, and they are aware of our experience with the baby so far, and know that if anything were to change we would come back. So for the first time in some of our nurse's careers (as they shared with us), an ER admit to the PICU was actually sent HOME! We got to go home, and Braden has been fine since!
Tuesday we have a salivagram done to see where Braden's secretions are going. We needed to know if they are going into the lungs or into the esophagus, and eventually into the stomach. We are having this test done to see if we are a good candidate for BOTOX, where they would paralyze two of his salivary glands to help him improve upon his oral motor skills, learn to handle his own secretions again post-seizure activity, and hopefully help keep him from future pnuemonias. The salivagram confirmed that part of Braden's secretions are going into the lungs, but that part of it is also making it to the stomach. So all this tell us NOW, is that we ARE a candidate for botox, and we will have to get that scheduled. The questions we still don't have answered, are: Is this happening due to some physical malformation? Is this happening because his muscles in that area are not developed enough? Is this something he can grow out of, or work on to get better? Is there a surgery to fix a physical deformity if there is one? And lastly, or is this just a nuerological issue? Those are questions we will need answered, before we ever start considering a tracheostomy for Braden. God has yet to put it on my heart that the trach is the path for Braden, like he has done for everything else that has come our way. So I will continue to pray for guidance in regards to this issue, and hope that God will lead us to the right path for our son.
We did get some good news in physical therapy this week. Braden is holding his head up off his chest enough when we try to sit him up, that we are starting to work with him there... kind of speeding up our therapy a little bit, as he would normally be scheduled to keep working on rolling. He was able to show our therapist that he is starting to roll on his own, and she was happy to see that progress - so are we! THANK YOU GOD FOR YOUR SMALL BLESSINGS WHEN WE NEED A SIGN THAT YOU ARE LISTENING TO OUR PRAYERS. We and the sitter continue to work with Braden towards improvement in this area - it's working!!
We (and by that I mean, ME) carved pumpkins this last weekend while Braden napped and Daddy cut the yard. We tried doing some fun photos with the little guy, but as you can see, he just wasn't "into it" much at all, and still interested in napping. Oh well. We finished the weekend with a cook-out, and mommy introducing Braden to his future Power Wheels toys - he seemed to enjoy them.
Have a great week everyone, and thanks for checking in on us! We will update you next week, as our hand braces should be here, and we should know if we will be checking into TCH (Texas Children's Hospital) for an extended stay to get Braden on the ketogenic diet or not, based on conversations with our local nuero. Pray that God will lead us down the right path for our little man - thank you!
The Wilson's
