Monday, September 29, 2008
APPOINTMENT
We found a pediatrician today and she's going to see us tomorrow in Eglin! Then we should get a referral to a Children's Neurologist.
Sunday, September 28, 2008
even little guys need a break
Just a quick stretch break in Indiana. We found a hotel near one of the gas stations and stopped to sunbathe and stretch.We Made it!
After 16 long hours, we made it to Illinois! We ended up leaving at 1130 PM on Thursday night! Chris worked very late and by the time he got home, we loaded up the car and got going, it was 1130.
Matthew had two seizures on the drive up. He slept most of the trip. I guess when you leave at 1130 PM, it's a good thing for a baby...especially one that hadn't gone to bed yet.
He's had a few seizures today. We're still trying to get a PCP up here so we can get a referral to a Ped. Neuro up here. But, since it's the weekend, there isn't much we can do.
At least we can watch the Bear's game in Chicagoland tonight!
Thursday, September 25, 2008
Today's the day...
We're planning on driving up to Chicagoland today. Yuck. I wish we could fly, but with the cos of airline tickets, cost to check extra bags (and with a baby, we have his pack/play, car seat, etc!) and the cost of a rental car in IL, we decided to drive. Okay, Chris decided, but he's probably right.
We have a busy day today. I have my calls (work) this AM. Then we have physical therapy. From there I have to drive to the hospital to get a copy of Matty's records, then we have to drive to Crestview. That's about 60 miles each way. That's where his helmet guy's office is; he had his head measured on Tuesday and it's improving. Whooo. But, he needs to make an adjustment. He said we could do it in two weeks, for Matty's next appointment~but we won't be back. So it's important that we get it taken care of today.
We have our leasing people doing a walk through of our house, too. It's our annual, I guess. So we have to clean the house and hide the kitties. We are claiming ONE small dog, so we have to find a place to store our 3 cats before he gets here. He should be here around 4pm, so we'll either stick them in our neighbor's house (if I see her, I'll ask) or we have to take them to Chris's work and store them in the break room!
Oh yah, did I mention I still have to pack? We still don't have a referral. We don't have an appointment. We're pretty much going into this blindly. But, we need to be up there to be put on waiting lists. I'm still hoping to be home by OCTOBER 20!
I also need an oil change. Other than that...hopefully we have a smooth day and a nice 16 hour drive.
We have a busy day today. I have my calls (work) this AM. Then we have physical therapy. From there I have to drive to the hospital to get a copy of Matty's records, then we have to drive to Crestview. That's about 60 miles each way. That's where his helmet guy's office is; he had his head measured on Tuesday and it's improving. Whooo. But, he needs to make an adjustment. He said we could do it in two weeks, for Matty's next appointment~but we won't be back. So it's important that we get it taken care of today.
We have our leasing people doing a walk through of our house, too. It's our annual, I guess. So we have to clean the house and hide the kitties. We are claiming ONE small dog, so we have to find a place to store our 3 cats before he gets here. He should be here around 4pm, so we'll either stick them in our neighbor's house (if I see her, I'll ask) or we have to take them to Chris's work and store them in the break room!
Oh yah, did I mention I still have to pack? We still don't have a referral. We don't have an appointment. We're pretty much going into this blindly. But, we need to be up there to be put on waiting lists. I'm still hoping to be home by OCTOBER 20!
I also need an oil change. Other than that...hopefully we have a smooth day and a nice 16 hour drive.
Monday, September 22, 2008
Is that a seizure helmet?
Matthew has had his helmet for about 1 month now. It is to help his head grow properly, it still has a large flat spot, the helmet helps it grow into the correct shape. As long as his soft spot is open, we are able to help his head grow in the correct shape.
I have had TWO doctor's question the helmet. The 1st doctor was his Pediatric Neurologist. I had told him a few weeks prior to him getting it, that we had been approved. When he saw it for the 1st time, he said, "oh, is that for the seizures?" Um, no.
The 2nd doctor was in the ER last week. He was examining Matthew (not much bedside manner, by the way) and says, "Usually children do not require helmets for their seizures until they are older". I corrected him and explained it was to help the flat spot on his head even out. The doctor continued to exam him and said, "has anyone ever had trouble finding his testicles?" After a minute, he found them. Gee, perhaps this is another reason to get a 2nd opinion about Matthew's condition!
I have had TWO doctor's question the helmet. The 1st doctor was his Pediatric Neurologist. I had told him a few weeks prior to him getting it, that we had been approved. When he saw it for the 1st time, he said, "oh, is that for the seizures?" Um, no.
The 2nd doctor was in the ER last week. He was examining Matthew (not much bedside manner, by the way) and says, "Usually children do not require helmets for their seizures until they are older". I corrected him and explained it was to help the flat spot on his head even out. The doctor continued to exam him and said, "has anyone ever had trouble finding his testicles?" After a minute, he found them. Gee, perhaps this is another reason to get a 2nd opinion about Matthew's condition!
Saturday, September 20, 2008
We're moving to Chicago...kinda
After I wrote my last blog, Matthew threw up. He threw up all of his medication and then some. It reassured me that we are doing the right thing about the 2nd opinion.
Chris called Tricare (our insurance) and they said all we needed was a referral. Too good to be true. When we spoke with Matthew's regular pediatrician's RN, she said that because we are in "Tricare South" we could have to pay a co-pay to go to "Tricare North", which is the region Chicago falls in. She spoke with someone at the Navy Hospital (where our Ped is) and they said that we would have to (1) pay 20% of total cost AND the copay or (2) set up temporary residency in Chicago for 30 days. I can't even imagine how much his tests will run, so it looks like Matthew and I are heading up to Chicago for a month.
The tricky thing is, in EXACTLY 30 days, not only is it my BIG 30 BIRTHDAY, but my mom flies to Pensacola for a visit. In 41 days, Steve flies out for a visit. Hopefully things will be resolved by then.
My ultimate goal would be to talk to insurance Monday, find out what it takes to "move" for 30 days and then talk to Children's Hospital and get an appointment ASAP. I'd really like to be there by next weekend!
My friend Laura, who is a RN near Chicago, works with a DR whose son is a Pediatric Neurologist who works with Children's! It's a small world and maybe this will be helpful to get a foot in the door!
Chris called Tricare (our insurance) and they said all we needed was a referral. Too good to be true. When we spoke with Matthew's regular pediatrician's RN, she said that because we are in "Tricare South" we could have to pay a co-pay to go to "Tricare North", which is the region Chicago falls in. She spoke with someone at the Navy Hospital (where our Ped is) and they said that we would have to (1) pay 20% of total cost AND the copay or (2) set up temporary residency in Chicago for 30 days. I can't even imagine how much his tests will run, so it looks like Matthew and I are heading up to Chicago for a month.
The tricky thing is, in EXACTLY 30 days, not only is it my BIG 30 BIRTHDAY, but my mom flies to Pensacola for a visit. In 41 days, Steve flies out for a visit. Hopefully things will be resolved by then.
My ultimate goal would be to talk to insurance Monday, find out what it takes to "move" for 30 days and then talk to Children's Hospital and get an appointment ASAP. I'd really like to be there by next weekend!
My friend Laura, who is a RN near Chicago, works with a DR whose son is a Pediatric Neurologist who works with Children's! It's a small world and maybe this will be helpful to get a foot in the door!
Wednesday, September 17, 2008
We have our good days and we also have our bad ones
Today was an in between day,c but over all pretty good. Matthew slept a lot of the morning. When we got to Physical Therapy, he started to cry. He didn't want to get out of the car, I guess he was comfortable & relaxing. Once I got him in his stroller, he relaxed. We got back to the PT room and he was just not feeling well. He cried a little. Tuesday he had the best PT day ever, he was holding his head up so well. It wasn't bad today, but not as good. He has had 1 regular seizure, it lasted about 5 min. This is an improvement over 2 months ago, he was having 4 a day...and 4 mo ago he was having 10 a day.
We have decided to get a second opinion at Children's Hospital in Chicago. Chris has been talking to insurance and intake to get this process moving. We feel like he's on the right track, but really feel like we should make sure we're not just treating the seizures, but treating the cause, too.
We have decided to get a second opinion at Children's Hospital in Chicago. Chris has been talking to insurance and intake to get this process moving. We feel like he's on the right track, but really feel like we should make sure we're not just treating the seizures, but treating the cause, too.
Popcorn, cookies and halloween candy pumpkins
I've never really blogged before (Wednesday, September 17, 2008). I don't know if this will even work. But, after some friends have said its theraputic and they can keep up on Matthew's daily events, I figured why not. So after a long day, I'm eating my dinner of pop corn, cookie's from the neighbor girl and candy pumpkin's, here I am.
Today is a good day to start blogging. It was eventful. At 400 AM, we woke up to the sounds of Matthew throwing up, except he wasn't throwing up. He was having a bad seizure. Usually when he has them, they are short, lasting a few minutes and he gets very angry. This time he was as stiff as a board. He was foaming at the mouth. His little tongue was sticking out and he was struggling to breath. Chris and I tried to snap him out of it. It didn't work. I looked at the clock, it said 415. My clock is 10 minutes fast. I noted that if he was still unresponsive/stiff at 420, I would call 911.
It's ironic, I have dreams about calling 911 and I'm unable. Maybe the numbers will fall off the phone or I get put on hold for hours. Thankfully, this was not like my dreams. I think the operator answered after 2 rings. My voice was trembling; I knew I had to hold it together. I started to choke up, but I managed to say that my 8 month old (close Marcy, not quite 9 yet) was having a seizure that he was not able to get out of. I said he had a history of them, she asked more questions and said she dispatched Fire and Medics.
It's true what they say; it was the longest 4 minutes. It seriously felt like 20 minutes. I rounded up the three curious cats and stuck them in the laundry room. I brushed my teeth and put on a bra. I turned on all the lights in the house. I thought it would help them find my house...it was so dark out and they don't have working street lights here (reason 13 why I LOVE Pensacola).
When the firemen arrived, they immediately starting giving Matt 02. He was no longer stiff, but he was not responsive. I surprised myself, I held it together. I've called 911 and had Medics/Fire on site when I worked in Phoenix in the psych clinic. It was like that, except it was a baby, not a psychotic, threatening, hallucinating man. Then I heard the EMT say, "Call the Medivac in". They asked me what hospital and we chose the hospital that his Pediatric Neurologist works.
I've already said this, but I was kinda disappointed that I didn't get to go in the helicopter. The EMT tried, but I was denied. They might have thought I'd be a hysterical mother. Who knows? I'm sure they had their reasons. The reason why he was Medivac'd was because the hospital is a 30 min drive.
Okay, so the hospital. Matthew was hooked up to monitors when we got there. He was a little fussy, but he was doing well. I'm actually kinda of glad that I didn't see them putting the IV in his arm. It's a helpless feeling.
5 hours later we were given the option of admitting Matt or going to his Pediatrician Neuro upstairs in the clinic. We opted to go see his Dr.
The Dr didn't change his meds. He said that he had basically a Grand Mal seizure. He said the seizures that Matthew have are "not typical". Most people, who have seizures, are unconscious, stiff and foam at the mouth (from what I understand). I don't think one is worse than the other, but this one was defiantly scary.
We're home now. I'm sitting next to my burnt popcorn talking to my friends online and texting. We're going to look into taking Matthew to Chicago Children's Hospital for a 2nd opinion. We trust our Dr, but it's the most helpless feeling in the world to watch a child go through something that seems unfair.
Today is a good day to start blogging. It was eventful. At 400 AM, we woke up to the sounds of Matthew throwing up, except he wasn't throwing up. He was having a bad seizure. Usually when he has them, they are short, lasting a few minutes and he gets very angry. This time he was as stiff as a board. He was foaming at the mouth. His little tongue was sticking out and he was struggling to breath. Chris and I tried to snap him out of it. It didn't work. I looked at the clock, it said 415. My clock is 10 minutes fast. I noted that if he was still unresponsive/stiff at 420, I would call 911.
It's ironic, I have dreams about calling 911 and I'm unable. Maybe the numbers will fall off the phone or I get put on hold for hours. Thankfully, this was not like my dreams. I think the operator answered after 2 rings. My voice was trembling; I knew I had to hold it together. I started to choke up, but I managed to say that my 8 month old (close Marcy, not quite 9 yet) was having a seizure that he was not able to get out of. I said he had a history of them, she asked more questions and said she dispatched Fire and Medics.
It's true what they say; it was the longest 4 minutes. It seriously felt like 20 minutes. I rounded up the three curious cats and stuck them in the laundry room. I brushed my teeth and put on a bra. I turned on all the lights in the house. I thought it would help them find my house...it was so dark out and they don't have working street lights here (reason 13 why I LOVE Pensacola).
When the firemen arrived, they immediately starting giving Matt 02. He was no longer stiff, but he was not responsive. I surprised myself, I held it together. I've called 911 and had Medics/Fire on site when I worked in Phoenix in the psych clinic. It was like that, except it was a baby, not a psychotic, threatening, hallucinating man. Then I heard the EMT say, "Call the Medivac in". They asked me what hospital and we chose the hospital that his Pediatric Neurologist works.
I've already said this, but I was kinda disappointed that I didn't get to go in the helicopter. The EMT tried, but I was denied. They might have thought I'd be a hysterical mother. Who knows? I'm sure they had their reasons. The reason why he was Medivac'd was because the hospital is a 30 min drive.
Okay, so the hospital. Matthew was hooked up to monitors when we got there. He was a little fussy, but he was doing well. I'm actually kinda of glad that I didn't see them putting the IV in his arm. It's a helpless feeling.
5 hours later we were given the option of admitting Matt or going to his Pediatrician Neuro upstairs in the clinic. We opted to go see his Dr.
The Dr didn't change his meds. He said that he had basically a Grand Mal seizure. He said the seizures that Matthew have are "not typical". Most people, who have seizures, are unconscious, stiff and foam at the mouth (from what I understand). I don't think one is worse than the other, but this one was defiantly scary.
We're home now. I'm sitting next to my burnt popcorn talking to my friends online and texting. We're going to look into taking Matthew to Chicago Children's Hospital for a 2nd opinion. We trust our Dr, but it's the most helpless feeling in the world to watch a child go through something that seems unfair.
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