I was sure by now,God, that You would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining as the thunder rolls I barely hear You whisper through the rain, "I'm with you"and as Your mercy falls I raise my hands and praise the God who gives and takes away.” This is what I thought about in the middle of the night. Yesterday was a hard day. The trip there ..not knowing where we were going. Going down the wrong street. Ending up on a BAD street behind 6 Dade Police cars and the Swat team in the middle of the street...Emily said wow this is like the show 48 hrs. Somehow my GPS got very confused...If she said one more time turn left turn left..makes a U-Turn...damn thing..
But what was hardest was walking in and having to recount everything to a new DR who knew nothing about Philip's medical history. We started with my pregnancy and went all the way through yesterday mornings history. To say it was emotional draining would be a understatement.
The Dr was very kind and very gentle but very blunt. He was different from other Dr we have seen in the past he talked numbers and rates. He spoke to us about the development issues that have happen due to the stroke at such a young age. We discussed in detail about brain damage and trigger to seizures and meds . The list of discussions went on and on...and to be real honest..it seemed like it would never end.. I was impressed that I did not run out of the room..
He asked questions no one had ever asked before...such as the number of times Philip had been on a vent. He then went on to explain to me that this is also a cause for some of the medical problems. While interesting...it was hard to hear. Then again..there was no choice. A child who has had 19 brain operations...lives on a vent from time to time..
The Dr was very shocked that where Philip's mass was at in the brain. He said that most of these types of masses would be on the outside of that area not embedded in the brain where his is. He went into great detail about where it is and why this was a major issue in the past. This was a very uncomfortable topic. In fact It was all I could do to not run out of the room. He explained about the vascular make up of that area. He also said it was one of the most complex areas of the brain. Which means due to the damage that Philip already has there and the mass being there...it is just a really bad situation to be in. He also made it clear that there are very few DR who would ever be qualified to operate on Philip in that area. After talking about odd and percentages... It just puts everything in a really difficult place. I am not going to share the details right now. Because I just can not . But It was the most uncomfortable conversation I have ever had with a Dr ..and trust me..I have had many very bad conversations.
I know so many of you are wanting to know about the details of the appts. Because you care. And I want to share them. I really do. But there were some really hard topics yesterday and some very difficult decisions to be made. Thank you for letting me take my time to focus on Philip's recovery right now. And of course my medical issues.
I am also dealing with some personal issues. Without going into a lot of details . For right now...The kids and I are living at home alone. This is for the best . I really do not have much more to say about this subject. So if I seem a little different or take longer to get back to you..or do not call you back...It could mean I am having a bad day...or maybe I am just a little busy being a mommy...which lately means alot of extra hugs and kisses...I am blessed.
This is what I thought about in the middle of the night. Yesterday was a hard day. The trip there ..not knowing where we were going. Going down the wrong street. Ending up on a BAD street behind 6 Dade Police cars and the Swat team in the middle of the street...Emily said wow this is like the show 48 hrs. Somehow my GPS got very confused...If she said one more time turn left turn left..makes a U-Turn...damn thing..
But what was hardest was walking in and having to recount everything to a new DR who knew nothing about Philip's medical history. We started with my pregnancy and went all the way through yesterday mornings history. To say it was emotional draining would be a understatement.
The Dr was very kind and very gentle but very blunt. He was different from other Dr we have seen in the past he talked numbers and rates. He spoke to us about the development issues that have happen due to the stroke at such a young age. We discussed in detail about brain damage and trigger to seizures and meds . The list of discussions went on and on...and to be real honest..it seemed like it would never end.. I was impressed that I did not run out of the room..
He asked questions no one had ever asked before...such as the number of times Philip had been on a vent. He then went on to explain to me that this is also a cause for some of the medical problems. While interesting...it was hard to hear. Then again..there was no choice. A child who has had 19 brain operations...lives on a vent from time to time..
The Dr was very shocked that where Philip's mass was at in the brain. He said that most of these types of masses would be on the outside of that area not embedded in the brain where his is. He went into great detail about where it is and why this was a major issue in the past. This was a very uncomfortable topic. In fact It was all I could do to not run out of the room. He explained about the vascular make up of that area. He also said it was one of the most complex areas of the brain. Which means due to the damage that Philip already has there and the mass being there...it is just a really bad situation to be in. He also made it clear that there are very few DR who would ever be qualified to operate on Philip in that area. After talking about odd and percentages... It just puts everything in a really difficult place. I am not going to share the details right now. Because I just can not . But It was the most uncomfortable conversation I have ever had with a Dr ..and trust me..I have had many very bad conversations.
I know so many of you are wanting to know about the details of the appts. Because you care. And I want to share them. I really do. But there were some really hard topics yesterday and some very difficult decisions to be made. Thank you for letting me take my time to focus on Philip's recovery right now. And of course my medical issues.
I am also dealing with some personal issues. Without going into a lot of details . For right now...The kids and I are living at home alone. This is for the best . I really do not have much more to say about this subject. So if I seem a little different or take longer to get back to you..or do not call you back...It could mean I am having a bad day...or maybe I am just a little busy being a mommy...which lately means alot of extra hugs and kisses...I am blessed.