Thanks for all the great support. What a wonderful blessing to come here and within minutes I had a team of you praying for Philip . What a peaceful feeling.
Things do not always go as we have planned. I swear I know God laughs when us mortals make plans. That is clear after the day we had today.
Yesterday we meet with the DR and spent a long time meeting with him. he was kind and gentle and very attentive to what we had to say. It is such a nice feeling to leave a DR office KNOWING a DR has not only heard you but listened to your concerns. That is very important.
The Dr was very concern about making sure we find the cause of whatever is going on with the arm hand..because we we all know..it is the only hand and arm Philip has use of...and we need to find the cause so we can make sure we can protect it.
Philip will have a stat MRI to check for a stroke, a neurological cause such as the mass/cyst pressing harder on anything in the brain stem. He will have a Nerve test, a muscle test, a stat Cat scan of his neck and spine and we are looking at a surgical procedure to look at a sample of the muscle. We also need to make sure this is not a spinal issues..because he has had spine operations in the past.
So we had a plan..or so I thought. Today I had a meeting with a Doctor that I had to keep at noon. The only time the tech could do the first test was a half hour before the meeting that was 45 minutes away. So I knew there was no way that would work. As I panicked and started talking to the nurse..she knew how important both appts were for Philip's care. She called 3 other patients until she found one that could switch and that way we would be able to do both appts. I was thrilled and just felt so relived that things were falling into place. Then tomorrow we would follow up with the second part of the test . Everything was all planed.
This morning we got up and I helped Philip get ready...which is not easy considering the pain he is in and also the issue with his "good" hand. We get to the van and my cell rings. The machine is broke and we can not do the test. And now we can not do tomorrow's ...ahhhh...crud...I am so frustrated by this...I just can not stand it.
So now we are waiting for them to hurry up and get things moved around around...not easy when a special Dr has to do this test. But I know it will get done. It just has to....soon. His pain is so bad right now and he is not going to be able to keep this up long.
So we also made some other decisions. Philip has to come off one of the seizure meds..his body is not handling it well. And due to the severe pain of the stroke issue..he will not be on the list to see the pain management DR. Scary stuff...makes me sad we are so deep into all of this. I sometimes am shocked we got here....but then I am also so thankful we are here...ya know?
And one last bit of hard news...Philip will need to start a high dose of steroids to help take down swelling on the brain..for those of you who know about this from the past...this is a very hard time for our family...with his immune issues and his emotions. So patience will be a thing to add to your prayers.
Thank You for praying for Philip and our family. I know I am new to many of you in the blog world and I hated to "dump" on you..but I feel like I know many of you. And yesterday I needed to reach out to you. Thank You for caring. There is likely to be more days like these...but we will get through them.