Yesterday we met with Dr. Benzick. I wanted to fill him in on our week in Houston and he needed to check Alex's incision. As always, he was incredibly supportive. He is such a blessing in our lives. I am thankful every day that we chose him as our pediatrician before we knew what would be facing us. Through this whole roller coaster ride he has stood shoulder to shoulder with us, always putting Alex's well being before anything else. I love that he is not afraid to admit that he doesn't know everything and is willing to work with our specialists for Alex's benefit. It is so rare to find a Doctor like this. He agreed with everything we learned in Houston. He thought the port was a good idea which put my mind at ease. he is excited to consult with Dr. Koenig on the best treatment for Alex.
We are almost all the way through the "formalities" of the MDCP program. Our application and medicaid application are through. Our overnight should be either this week or next week. After our overnight, services have to start within 24 hours. We had a home health care agency come out yesterday. We are going to have a nurse all day Tuesday and Thursday. I really wanted 3 half days but I spoke to numerous companies and no one was able to staff that. It will be nice for Alex and I have to have a little break a couple times a week.
Alex's port surgery is scheduled for March 12th. We will travel to Houston on the 9th or 10th. We will be admitted on the 11th and discharged on the 13th. While we are there we will see Dr. Koenig, the immunologist, the GI and possibly the endocrinologist. Then we are home for 2 weeks and head out to cincinnati! So March will be BUSY!!!!!
Please pray for all of us. I am trying not to think to far ahead. We have a long wait till we get results but some of the possibilities are scary. I am trying to keep my head in the moment and be thankful for each day. The stress of almost four years of medical and financial strain is taking its toll on me. I am tired and have stress knots in my back and neck. I really feel like the answers we have so desparately searched for are almost here. I am just not sure I like them!
Thank you for the constant support and prayers.
Ali
Alex and Maddy
Wednesday, February 27, 2008
Sunday, February 24, 2008
Just a real quick update-
Alex is doing wonderful! He is up and walking. He has a very slight limp. He is so happy to be home. I don't think he has left his playroom since we got home. Alex and Bruce played really well together yesterday. So I was able to catch up on things around the house. I even got a nap!!! We have an appt with Dr. Benzick on Tuesday. he will look at Alex's leg to make sure it is healing well. We will also discuss everything from our trip. Lastly, we need to draw more blood. Unfortunately, after the IV situation there were no more veins to draw blood out of and they were scared to pull off the IV line. If we had lost that IV we would have had no way to get fluids into him. Hopefully, these will be the last sticks other then the IV for his port surgery.
I may update later with more info about the port for those of you who are interested.
One last bit of good news. I got a message while I was away that our medicaid went through. So I will call Monday and find out. As soon as we spend the night in the nursing home our medicaid and nursing care should start.
I'll keep you updated!
Alex is doing wonderful! He is up and walking. He has a very slight limp. He is so happy to be home. I don't think he has left his playroom since we got home. Alex and Bruce played really well together yesterday. So I was able to catch up on things around the house. I even got a nap!!! We have an appt with Dr. Benzick on Tuesday. he will look at Alex's leg to make sure it is healing well. We will also discuss everything from our trip. Lastly, we need to draw more blood. Unfortunately, after the IV situation there were no more veins to draw blood out of and they were scared to pull off the IV line. If we had lost that IV we would have had no way to get fluids into him. Hopefully, these will be the last sticks other then the IV for his port surgery.
I may update later with more info about the port for those of you who are interested.
One last bit of good news. I got a message while I was away that our medicaid went through. So I will call Monday and find out. As soon as we spend the night in the nursing home our medicaid and nursing care should start.
I'll keep you updated!
Friday, February 22, 2008
WE ARE HOME!!!!
We left this morning, dropped Janette and Monty off at the airport and headed home. We got in about 4:00. We are tired, but glad to be in our own space and ready to be in our own beds.
I took the dressing off Alex's leg today and it looks pretty good. It is about an inch and a half and just a thin line. It still has steri strips on it. He is doing great. Still not putting any weight on it, but trying to move around.
We will head back to Houston in about three weeks. At that time we will see Dr. Koenig again. We will also see the immunologist again, a GI and endocrinologist. The main reason for going is so Alex can have a port placed. It is a small disc under his skin near his collarbone. It has a line that will go into one of his large veins. The top of the disc is soft rubber. We will be able to use a small needle and start an IV or draw blood without having to poke and prod a hundred times. It will also allow us to give IV meds at home should the need arise. It is a very minor surgery. About the same scope as the muscle biopsy. We will spend 2 nights in the hospital. The night before and after the surgery. The main reason for the night before is so we don't have to sit and wait in the waiting room for 8 hours again, carrying around all our stuff! It also allows us to start an IV the night before so we don't have to worry about his blood sugar.
Test results will start coming in next week and will come in intil the biopsy comes back in about 8 weeks. Please pray for my sanity during this time of waiting!
Ali
We left this morning, dropped Janette and Monty off at the airport and headed home. We got in about 4:00. We are tired, but glad to be in our own space and ready to be in our own beds.
I took the dressing off Alex's leg today and it looks pretty good. It is about an inch and a half and just a thin line. It still has steri strips on it. He is doing great. Still not putting any weight on it, but trying to move around.
We will head back to Houston in about three weeks. At that time we will see Dr. Koenig again. We will also see the immunologist again, a GI and endocrinologist. The main reason for going is so Alex can have a port placed. It is a small disc under his skin near his collarbone. It has a line that will go into one of his large veins. The top of the disc is soft rubber. We will be able to use a small needle and start an IV or draw blood without having to poke and prod a hundred times. It will also allow us to give IV meds at home should the need arise. It is a very minor surgery. About the same scope as the muscle biopsy. We will spend 2 nights in the hospital. The night before and after the surgery. The main reason for the night before is so we don't have to sit and wait in the waiting room for 8 hours again, carrying around all our stuff! It also allows us to start an IV the night before so we don't have to worry about his blood sugar.
Test results will start coming in next week and will come in intil the biopsy comes back in about 8 weeks. Please pray for my sanity during this time of waiting!
Ali
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