Wednesday, December 3, 2008

Need to ramble

So...I'm going to just be rambling here so bear with me.

Some of the things I'm trying to work through to figure out if this will be right for him, are he had double the dose he would normally get. I don't know if I feel he was loose enough for it being a double dose & he seemed very sleepy, was it because he had been sedated or because he was up 3 times that night before & up by 5:30am that morning or was it because he had to lay flat for 4 hours & was bored or was it the medication. I guess I was a little disappointed that I wasn't able to play with him more, I mean I understand now, why but I didn't ever know before that morning that he would have to lay flat for 3-4 hours. It did seem to be so amazing for the most part though, he was so loose & just so comfortable. He was a wonderful boy, he just laid there on his bed watching the portable DVD player our neighbor let us borrow. I laid him on each of his sides & he didn't even need anything to hold him up onto his sides. He was still giggly but not like normal.

The PT was suppose to stop by every hour, at first he was there a lot then he never came back. Dr. Murphy said it was a positive dose. I have an appointment with the surgeon & then with Dr. Murphy the Tue after that so I still have time to keep figuring out if it's right. It's just to HUGE of a risk to take if you aren't TOTALLY sure. And like Amy said it loosens every where so with his trunk being too loose in the first place it was harder for him to hold himself up but then again maybe he just needs to get used to it. I know that if we decide to go with the pump he will be a totally different child but I don't want him drugged, he just seemed so blahhhh. Also with him being a different child with the pump, I'm working on getting intensive therapy for a few weeks & then all therapies 2x a week & then also school next year. As I have said a million times our state medical assistances isn't the greatest. I have decided that I'm done trying to work with St. Luke's for his therapies, I have called Corbie's doctor & requested a referral to some where else. After thinking & talking to my councilor I have also decided to get a referral to see the doctor that would do Baclofen pumps here. See what it is, is that Dr. Murphy is affiliated with St. Luke's & all the rest of Corbie's doctors are through SMDC so it's hard to know what to do because now I'm leaving the therapy there & I wasn't pleased with St. Luke's for the trial much either but Dr. Murphy has been a great doctor so I'm torn there too. UGH!!!

The test dose lasts about 8 hours but he was still looser then normal 12 hours later.

Caradie and Corbin

13 comments:

Anonymous said...

Caradie,
Your not rambling, after submitting my last post,I realized you had this update. It sounds that you feel this isn't for Corbie. Follow your gut instinct,your usually right. I guess I wouldn't want my child to be like all drugged up all the time either so I totally understand you there. Is there other options out there to help with his muscle tones without this pump?~Darlene

Amy said...

I totally agree with Darelene, Caradie. I think it sounds like this might not be the right time to put Corbie through the risk. He is doing so well with everything that not being completely sure would make me want to wait a while and revisit it in the future. I think for me , like Darlene said, the being drugged part would stink--especially since Corbin has such a wonderful, alert personality. I would hate to lose some of that since the results were not completely what you were looking for right now. Just my two cents.

Teresa said...

Caradie,

You know you can email me anytime and I'll answer any questions you have about the pump. In my experience, I never felt the pump was sedating for Samuel and we were up to twice the dose they would ever put Corbie at. So, I wouldn't worry about it being sedating. That is the benefit of the pump. You can get a lot more concentrated medication without the sedation.

As far as the pump affecting the entire body, it will. But it will affect the lower half of his body more than the upper half. And it all depends on the dose. Samuel had zero head control above 700 micrograms per day. Below that, his head control has been about the same from 700 to 100 micrograms. Weird. It's easy to go up on the dose. It's been really hard for us to get back down because of withdrawals.

It does help with tone, though. And that can mean that Corbie will be more comfortable each and every day. But at the same time, it will mean that if he's using his tone to do some things, he may have to relearn them or he may not be able to do them anymore.

It's a hard decision. We decided to get one and now hope to take it out. If I could go back, I would probably do the same thing again. And, honestly, sometimes I'm afraid to get rid of it because I won't know what to do if his tone gets bad.

Not sure if that helped or made it worse. Hope if helped. Email me if you have more questions.

Anonymous said...

Hey Caradie,
I know how hard this decision must be! I do hear some doubt in your post! I have talked to several parents that have done the pump with their kiddos. I got mixed reviews. I want to do the trial but I am worried that it would work and then I would really be in a hard place! Right where you are right now! I am so sorry! I don't have much advise other then to sit, think, pray, and if it is the right thing to do you will receive total peace about it! Corbin is such a wonderful little boy and you are an even more wonderful mommy! Good luck and God Bless! (oh and I now have toys hanging from my ceiling!)

Caradie and Corbin said...

Darlene,

I'm going to post more about my feelings pro & cons later today

And there are other options but they are even more sedating.

Caradie and Corbin said...

Amy,

I'm going to post about this too but I am waiting a little for a 2nd opinion from another Doctor.

Caradie and Corbin said...

Teresa,

You always make me feel better :-)

I know that a lot of the reason Samuel is so loose is because of HBOT but I just can't afford that route

Caradie and Corbin said...

Anonymous,

I'm not sure what friend you are but AWESOME about the toys.

I do have some doubt because since it was a double dose, he just wasn't loose enough.

I will get this all together and tell you (everyone) is a the trial is worth it.

Amy said...

I am so glad that Teresa post since she actually has experience with the pump. I think her thoughts are helpful. She knows a lot that may really help you. a

Amy said...

Oh, I was also going to say that I didn't know that it worked more on your lower body than upper body. I think thay is what Teresa said. That is opposite of what we need for sure, since Emma is very tight in her arms.

I am glad to hear that it doesn't sedate. I had heard that it had from several other parents. And oh boy, sedation is not what Emma needs at all. She already was to work to be engergized.

Caradie and Corbin said...

I'm glad Teresa posted too. She has always been so helpful to Corb & I.

As for where it works, it does affect the legs the most but... like for Corb, Dr. Murphy wants to place the catater higher in the spine to help with his arms & exctensor tone.

Anonymous said...

Hey Cardie, the post above was from me, Pam, Makenzie's mom. Sorry I got to forget to post my name!

Caradie and Corbin said...

Pam,

I was pretty sure it was you :-)

I would love to see a video if her toys, when you have a sec, I know how hard those are to come by so when ever :-P