I tried to paste that link in the blog, but it wouldn't allow me. That is the program that Matthew is going to be going to the week of June 8th. The clinic called me and offered us to come in next Tuesday (June 2nd). Normally I would be able to drop everything and go, however, my parents are flying into Arizona to visit with Matthew and me. They are only staying until Friday AM, so Matthew and I will be going in the following week...June 8th.
They admit 5 patients Monday morning. Some patients stay for 24 hours, other stay up to 5 days. As soon as a bed becomes available, they will contact us...most likely that Tuesday AM, after they discharge patients.
I will have to stay with Matthew 24 hours a day. It's not a big deal, I would do it anyway.
He has been on the new medication (Depakote) for about 15 days now. I feel it is helping, but we're still seeing seizures daily. They do not seem to be as intense.
Matthew is mastering rolling. In fact, I can't leave the room for more than a few minutes or he'll roll into the table or couch and bump his head.
Thursday, May 28, 2009
Luke Air Force Base Case Manager
I talked to Matthew's C.M on Tuesday. What a difference from the C.M in Pensacola who never followed up with us when we asked for help! Dianne got the scoop from the EEG & Neuro appointment. She seemed a bit frustrated with the result. She was happy that Matt was referred to the Epilepsy Clinic and said she's call them when we got off the phone so she could get the status of referral (by they way, the Epilepsy clinic called me within hours of me talking to Dianne).
Dianne felt that we are at the highest level of care at Phoenix Children's Hospital. She felt that if we do not get a good plan of action/results from the Epilepsy Clinic, she will help us to get to the next level of care. That level of care would probably be some sort of Neuro Institute....maybe in California. She said that our insurance will pay for the flight, hotel, food, etc because we have exhausted our options in Phoenix. There is another hospital out here that has a Ped. Neuro department, but it is equal to PHC, so instead of going there, we'll go to the next level up.
I am so relieved. I finally feel like we are going forward. Dianne told me that in Pensacola, we could have our insurance help us get to the next level of care (most likely Miami). I had no idea, so this did frustrate me a bit, but I'm glad we came to Arizona because I truly feel that we are on the right road now.
Dianne felt that we are at the highest level of care at Phoenix Children's Hospital. She felt that if we do not get a good plan of action/results from the Epilepsy Clinic, she will help us to get to the next level of care. That level of care would probably be some sort of Neuro Institute....maybe in California. She said that our insurance will pay for the flight, hotel, food, etc because we have exhausted our options in Phoenix. There is another hospital out here that has a Ped. Neuro department, but it is equal to PHC, so instead of going there, we'll go to the next level up.
I am so relieved. I finally feel like we are going forward. Dianne told me that in Pensacola, we could have our insurance help us get to the next level of care (most likely Miami). I had no idea, so this did frustrate me a bit, but I'm glad we came to Arizona because I truly feel that we are on the right road now.
Phoenix Children's Appointment
We were so excited to go in and see the DR. We got there a bit early, however, she was running 45 minutes behind. Matt was still sick with a cold, so it was a long afternoon.
The Dr came in. She seemed friendly. She got a brief history~I offered her a copy of Matt's medical records from FL and she was not interested. She basically said there are enough papers floating around the office, they don't need more. That kind of bothered me, but I guess she's just being honest, right? She received two phone calls during the appointment. I understand they were crisis calls, but it still bothered me. She discussed the medication Depakote and I agreed to try the medication.
She turned to me and said, "OK, follow up in 4 months". Whoa...wait a minute. 4 months?! I want to be back home in FL by then. I explained we aren't in PHX long term. She knocked the appointment to 2 months. In my head I had already decided to call my case manager to discuss this, so it didn't matter. I'd either ask to switch to another doctor or just reschedule the apointment myself for a month. She said she was thinking about referring him to Epilepsy clinic and for an EEG. She wasn't sure, but I interrupted and said we'd be interested in that option.
Depakote in a good medication, but it isn't usually prescribed to kiddos under 2 years old. Although Matthew is the size of a 4 year old, I was still concerned and bothered that she didn't want to follow up until 4 months. It can cause liver damage and weigh gain. So far it hasn't changed his appitite, he still is a light eater...Thank goodness because he's over 30 pounds...just tall and thin.
We got our EEG a week later and two days after that, the Dr personally called me to discuss the results. Maybe we got off on the wrong foot? She wanted me to call her a few days later to update her on his progress with the Depakote.
The Dr came in. She seemed friendly. She got a brief history~I offered her a copy of Matt's medical records from FL and she was not interested. She basically said there are enough papers floating around the office, they don't need more. That kind of bothered me, but I guess she's just being honest, right? She received two phone calls during the appointment. I understand they were crisis calls, but it still bothered me. She discussed the medication Depakote and I agreed to try the medication.
She turned to me and said, "OK, follow up in 4 months". Whoa...wait a minute. 4 months?! I want to be back home in FL by then. I explained we aren't in PHX long term. She knocked the appointment to 2 months. In my head I had already decided to call my case manager to discuss this, so it didn't matter. I'd either ask to switch to another doctor or just reschedule the apointment myself for a month. She said she was thinking about referring him to Epilepsy clinic and for an EEG. She wasn't sure, but I interrupted and said we'd be interested in that option.
Depakote in a good medication, but it isn't usually prescribed to kiddos under 2 years old. Although Matthew is the size of a 4 year old, I was still concerned and bothered that she didn't want to follow up until 4 months. It can cause liver damage and weigh gain. So far it hasn't changed his appitite, he still is a light eater...Thank goodness because he's over 30 pounds...just tall and thin.
We got our EEG a week later and two days after that, the Dr personally called me to discuss the results. Maybe we got off on the wrong foot? She wanted me to call her a few days later to update her on his progress with the Depakote.
Monday, May 11, 2009
Phoenix
The day after Chris was supposed to deploy, we got word that he was not deploying. We had already scheduled our utilities to shut off, my trip was planned and we were ready to go. We made the decision for Matthew and I to still go to Phoenix for treatment out there. Steve (Chris's best friend and the guy renting our house) drove across country from FL to AZ. It was a long trip with a sick baby. He had a bad cold and was throwing up. We made it though....3 days. We stopped twice for the night. We had to make frequent stops to feed Matt, change Matt and give him meds.
We have arrived in AZ and things are going well so far, except for our colds again. Matt was running a fever of 103.5 consistently for a few days. He was throwing up his seizure meds and Tylenol. I took him to Phoenix Children's Hospital (PCH) at midnight last Wednesday, well, actually Thursday. They were very nice there, but just said it was a virus and sent us on our way. I figured it was, but with his seizures medication, I'm always careful.
Thursday during the day, we got word that our insurance had been transferred. I contacted the pediatrician's office to start the referral process. The RN was very nice. She gathered a lot of history and referred us to a case manager. Later that day the CM called us and was more than helpful to plug us into resources out here. The RN also suggested that we got the PCH ER (again) this time complaining of increase in seizures. Matthew has had more seizures since we stopped the ACTH. She said this would help us get into PCH's neuro clinic faster.
So Friday we went back to the ER. It's about a 40 minute drive without rush hour traffic. They did some blood work and when they discharged us, they told us to contact neuro...they were referring us. I tried calling Friday, but was unable to get through.
I called back today (Monday). I was told the next appointment was mid June. I explained that we were just in ER and Matthew had already had 5 seizures this AM. (which was true). She said she could get us in the end of May. Although that's 2 weeks away, I wasn't happy. I called Matt's CM and she got us in this Wednesday.
We have arrived in AZ and things are going well so far, except for our colds again. Matt was running a fever of 103.5 consistently for a few days. He was throwing up his seizure meds and Tylenol. I took him to Phoenix Children's Hospital (PCH) at midnight last Wednesday, well, actually Thursday. They were very nice there, but just said it was a virus and sent us on our way. I figured it was, but with his seizures medication, I'm always careful.
Thursday during the day, we got word that our insurance had been transferred. I contacted the pediatrician's office to start the referral process. The RN was very nice. She gathered a lot of history and referred us to a case manager. Later that day the CM called us and was more than helpful to plug us into resources out here. The RN also suggested that we got the PCH ER (again) this time complaining of increase in seizures. Matthew has had more seizures since we stopped the ACTH. She said this would help us get into PCH's neuro clinic faster.
So Friday we went back to the ER. It's about a 40 minute drive without rush hour traffic. They did some blood work and when they discharged us, they told us to contact neuro...they were referring us. I tried calling Friday, but was unable to get through.
I called back today (Monday). I was told the next appointment was mid June. I explained that we were just in ER and Matthew had already had 5 seizures this AM. (which was true). She said she could get us in the end of May. Although that's 2 weeks away, I wasn't happy. I called Matt's CM and she got us in this Wednesday.
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