5481Re: [Myotubular_Myopathy] Re: Introducing Myself
- Jan 4, 2008Hi Virginia,Yes, we have home nursing for both boys. I suggestas Connie has mentioned to get all the nursing hoursyou can get. Especially now. With a two year old anda newborn with special needs you are going to haveyour hands full. Been there done that!!! Kyle's sisteris one year older and it was really hard. We started outwith nursing but that only lasted for 2 months. Theysaid it was too far for them to come to our house. Welived in the country and the nearest city was 40 milesaway. The nearest hospital was 32 miles away. So Iended up taking care of him myself. I wasn't able to goanywhere without taking him. We had becomeinseperatable. I was ok with it but it gets very stressfulat times especially when the older child needs attentionand/or is sick. After two years we decided to movecloser to the city. We are now working on nurse #26.As Connie has mentioned, don't just take the first nurseyou get unless you feel totally comfortable with her. Wehave had nurses that had no idea what to do. Then youcan get the ones that want to do things their way andnot yours. Make sure they understand you are their bossand you want things done your way. I've had them tell mewell that's not how we did it at the nursing home. Well,excuse me your in my house not the nursing home! Sothings are done my way. Or the one that wants to doeverything by the book. I wish someone would burn thatbook because it doesn't deal with our kids. Then you willhave the one that wants him to stay in bed all the time.We have had nurses not come back because Kyle doesn'tstay in bed. He gets on the floor, his chair, outside, eatswith us at the table, his stander, his gait trainer, etc. Theysay it is too much work for them having to move him fromplace to place. Anyway,Kyle gets 9 hours a day and Connorgets 12 hours a day nursing. Kyle's nurse goes to schoolwith him. Since he has the trach and feeding tube andsometimes uses the vent at school they require him to havea nurse or family member with him. Connor gets morebecause they have another child that is younger and requiresthe attention Krystal can't give if she is the only one caringfor the two of them. Plus, Connor has a few more problemsthen Kyle does. The nurse we have now is ok, she is just soooslow at everything she does. I have to keep telling her to moveit, that we need to go or we have to be somewhere at a certaintime. Especially, when we go to his therapies in the morningthen I take them to school. Not that I keep a time frame, but shehas no since of time and that drives Kyle and me crazy. He willactually leave her behind when he is in his power chair. I thinkwe keep her around for laughs, he will get really far ahead of herthen turn around and wait for her to catch up to him, laughing thewhole time (it is funny watching her run to catch him).I'm not telling you this to scare you, but you do need to be awareof the different types there are out there and pick the ones thatfit your family the best. Also as Connie, has said check intoMedicaid and check to see if he is eligible for SSI through SocialSecurity if you haven't done so already. She had some very goodpoints. You will need all the help you can get thru thesedepartments. Regular insurance will not pay for a lot of thingsthe kids need or they will give you a hard time thinking you will giveup trying. You may want to contact the Muscular Dystrophy Officein your state to see what programs are available to you there if youhaven't already done that.Sorry this is so long, but I want you to be prepared for what toexpect before you have to go thru it. Also before he comeshome don't be afraid to ask for equipment they aren't sendinghome with him if you think he needs it. They did that with Connor,then after we asked for it they said, oh, yes, he may need that.As I said before, don't be afraid to ask questions, no matter whatI'm sure one of us if not all have been thru it already.Take care,Darlene----- Original Message -----From: bv_mixednutsSent: Wednesday, January 02, 2008 10:59 PMSubject: [Myotubular_Myopathy] Re: Introducing Myself
I'm glad to hear that both of your grandsons have been healthy lately.
I was wondering if you have home nursing? We talked about it briefly
at our care conference today and they recommend we have 16 hours of
home nursing to start with. I'm not very exited about the idea of
having people in my house that much but I also want Christopher to be
safe and have good care. Do you have home nursing for your grandsons?
If so how has that worked for your family?
Thank you for sharing so much information with me.
I really appreciate it.
--- In Myotubular_Myopathy @yahoogroups. com, "DARLENE MILLER"
> Hi Virginia,
> Glad to hear Benjamin is doing fine. You will
> definitely have your hands full with a 2 year old
> and 3 month old.
> Both boys have x-linked MTM but they are
> different in many ways. Both boys are trached
> and have g-tubes. Connor had 6 cardiac
> arrests when he was between the age of
> 4 months and 6 months. He is mostly vent
> dependant. He does come off the vent about
> 2 hours a day. Connor can't sit up and must
> have someone near him at all times. Kyle on
> the other hand, is very active. He attends
> regular Kindergarten class. He is off the vent
> during the day except when sick. Only uses
> it at night. Kyle has operated a power chair
> since he was 3 1/2 years old. He can also use a
> manual chair as long as it is not on thick carpet.
> He is very vocal with his speaking valve. Kyle
> will try to do anything his older sister does. He
> knows sign language and we are in the process
> of getting him an augmentive communication
> device. Both Connor and Kyle are doing great.
> We have managed to keep them out of the
> hospital now for Connor it has been a little over
> a year and Kyle will be 2 years in March.
> I'm glad you found this group. It has been a
> great help to our family. Without it I don't know
> what we would have done. The support is
> unbelievable. If you have any questions, don't
> hesitate to ask. One of us will be able to help or
> at least put you in the right direction.
> Take care,
> ----- Original Message -----
> From: bv_mixednuts< mailto:bv_ mixednuts@ ...>
Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>
> Sent: Wednesday, January 02, 2008 7:05 PM
> Subject: [Myotubular_ Myopathy] Re: Introducing Myself
> --- In
Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>,
> <dm4462@> wrote:
> > Hi Virginia
> > Welcome to the group. My name is Darlene. I have
> > two grandsons with x-linked MTM. Kyle just turned
> > 6 years old on the 15th and Connor is 2 years old.
> > I'm Kyle's primary caregiver. This is a great place
> > for information and support. Glad to hear
> > Christopher is doing so well. Does Benjamin show
> > any signs of MTM?
> > Take care
> > Darlene
> > ----- Original Message -----
> > From: bv_mixednuts< mailto:bv_ mixednuts@ >
> > To:
Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com><mailto:Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>>
> > Sent: Friday, December 28, 2007 4:02 PM
> > Subject: [Myotubular_ Myopathy] Introducing Myself
> > Hi i just wanted to introduce myself. I am Virginia and I have two
> > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
> > diagnosed with myotubular myopathy a month ago through a muscle
> > biopsy. We have genict tests outstanding to see if it is X
> > the docs are pretty sure he has x-linked mtm. We are doing okay and
> > hoping we will be able to bring him home in 4-6 weeks if we dont hit
> > anymore bumps. So far he has been healthy other then a blood
> > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
> > ladds procedure to fix an intestinal malrotation they discovered.
> > Christopher went through surgery with no problems and is doing
> > well. They put him on cpap just a few hours ago and he was doing
> > when i left the hospital.
> > Anyway we live just south of Seattle WA. Christopher was born at our
> > local hospital and transfered to Swedish NICU for 3 weeks then
> > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
> > once we found out his diagnosis.
> > So that's the basics, hope to get to know some of you.
> > Virginia
> Benjamin our older son does not show signs of MTM but we honestly
> don't know what to look for. Benjamin is as far as we can see a
> healthy 2 year old. He has hit all of his development milestones
> early or on target so we pray he will not be affected by MTM
> Do both of your grandsons have MTM with the same severity? Are they
> ventilated, how are they doing?
> Thank you,
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