Philip Update

Warning..This post has some pictures that may disturb some of you. I do not want to make anyone uncomfortable or let them get grossed out ( as Emily would say). This is how they added the meds to Philip to get it to his spine and brain. This is the incision area that is still healing from his recent operation. Needless to say things are just hard right now for Philip.

I guess the best way to start this is to just be blunt and say...I am not sure what to say. So I will just share what I can , the best I can. Things are just rough. In truth rough does not even begin to cover it. Things are sad and scary and hitting rock bottom. Now what do we do with that?

The answer to that is..I am not sure..and I do not know if anyone knows the answer. But if you all know me the way some of you I WILL do my best to find the answers. And I am not going to give up until I do. I think that is what we call Mother's Love.

Earlier this week I got a urgent call telling me Philip was very sick and in a lot of pain. The DR said the PA would meet us in the ER. Philip was in so much pain it was scary. I have never seen him so upset . Hard to see your first born son so desperate and in pain. Knwoing you can do nothing to fix this.

The PA was very caring and very attentive. He listened to the details of the nuero appt we had out of town with the new DR. He aggreed with what the DR suggested. He also spoke to me about some places for follow up care that Philip will be needing soon. As I mentioned before Sloan is at the top of the list .

So while we are waiting for some follow up care and plans..we had to make some changes to help him NOW. Philip can not live like he has been.

The Dr needed to add some new meds . The machine is in his stomach. So he had to have a procedure to add the meds. His morphine has already been raised by 10% and then 15%. This week it was raised by 50%. The new medication he had started two weeks ago was doubled by mouth.

There will be some conferences to decided what to do next. At the levels he is on by mouth it is very damaging to his liver and kidneys. The kidneys are a real concern because he has nuerogenic bladder and a history of emergecy opertauions to deal with this.

So now that I have said all that..I bet you may be asking...so what does this mean...Cause I sure am asking what now...

The plan is...the Dr will conference this week. They will decide what to do next and how the best way to deal with the medicine issue is. They want to change the meds in his pump. But that is a big issue with the insurance company. They only allow med changes every 90 days. Philip is at day 16. I was shocked to know how much the med change and meds cost. We may be able to have the meds changed at day 31 with us paying a large co payment to help with the cost. And we can send in a appeal. At this point whatever it takes.

So for now Philip is on a massive dose of his morphine going directly in his spine and brain. He is on Oxycontin and the double doses ( 8 pills of the muscle and pain meds). The goal is to give this plan 7 days and give DR a chance to conference and come up with a plan. And as of now the goal is day 31 to pay for the new med change.

I am now working on a plan to meet with the director of a research hopsital to see if they can offer any help. Details of that to follow this weekend. It is something BIG.

I hope some of this makes sense. It was hard for me to even understand it and I was there listening to every word they said.

I am asking for prayers for Philip. His pain level is very high and his spirits are very low. I love him so much and I just do not know what to do for him ...I hope he knows that I would do anything if I could...