Monday, January 27, 2014

Surgery on those legs

Time to work on those legs and with a side of Botox.

Brayden's right leg continues to be problematic...tight and making him uncomfortable.  Both legs scheduled for Botox and the right leg to have a hamstring release.  Brayden was all smiles in pre-op (apparently a little too comfortable in this oh so familiar place).
I thought the surgery was going to be quick, about 30 minutes but almost 2 hours went by before the nurse came to get me (waiting can do strange things to ones nerves).  Brayden usually has a hard time coming out from anesthesia, upset and a some seizures, so I expected him to not be pleased after this procedure...waking up with people still picking at him and the blood pressure cuff that ticks him off every time it starts squeezing.
As time went on I started to see that Brayden was not only mad he was in pain.  He has this cry that sounds like he is trapped and desperately screaming for help while trying to crawl out of his skin.  The PACU nurses tried to help with some meds but we realized he needed more.  But the surgeon went back into to surgery and could not be reached.  So they found the anesthesiologist who ordered some good stuff.  But I didn't want to be sent home on a Friday night without his pain under control and a long drive home in rush hour.  So the pediatrician's office was called and a wonderful nurse drove over a prescription to our pharmacy (heavy meds cannot be called in to a pharmacy).
Brayden had a rough night and following day at home.  The day after surgery was rough.  Lots of seizures and vomiting.  I think the vomiting was from the breathing tube aggravating his throat.  Finally after some more pain meds and a diastat (emergency seizure med) he found some rest.

After the weekend, we went back to the ortho surgeon to unwrap everything and check the incisions.  Oh he was not happy with that appointment.

Wednesday, January 22, 2014

The biggest fan of snow days

Are these two.
Hours of relaxing by the fire, family around and nothing to do. Their favorite thing.

Well, we did watch some movies and make snow ice cream (and Brayden was a little tortured with time in his leg braces and activity chair).  Brayden was not a fan of the touching the actual snow but totally fine with a taste of the snow ice cream.
And now school has been canceled for the rest of the week...we are going to get more creative about things to do around the house...

Tuesday, January 21, 2014

School time, that leg and back

I love seeing Brayden at school.  School pushes him in ways I would never be able to do at home.  At home, I like to keep him happy, comfortable and snuggle him every opportunity I can (I have a hard time keeping me hands off of him when he sleeps, he is so cute and precious).

At school he is a big boy and at home he is my baby boy.
Since we have had on going problems with his right leg, we have been trying to find the best ways to help him at home and school.  As well as his hips and try to position him without putting pressure on his back.

Brayden has a PT at school so we met to go over way to best help Brayden.
And getting him in the stander which can help his bone strength. 

Sunday, January 19, 2014

A camping we will go...

Well, that is what we call Jill's House for Brayden...his camp because it is his little retreat and his version of camp like his brothers' overnight camp in the summer.  And really our best way to explain Jill's House to other people.  A place filled with fun activities, lots of kids, music, crafts, swimming, etc.

I loaded up Brayden on Friday night for his 3rd weekend.  Like last time, I got Brayden ready for bed since the nurses were busy checking in all of the kids and Brayden's bedtime routine is time consuming.  And I don't mind doing it because I get to see Brayden settle in at Jill's House and see how he reacts to being back.

Pulling up to Jill's House and getting Brayden out of the car is interesting to watch.  He gets a very disgruntled face as if he was thinking "What am I doing out, I don't do nights?!" or "I am not liking this".  Then wheeling him in to Jill's House, he starts taking it all in.  His grouchy old man face relaxes and his eyes get bigger...he knows where he is and he likes it.  Then he looks very content and even blessing us with a few grins and happy noises.

We met a couple of new nurses (new to Brayden), they were very detailed about Brayden's care and medical needs, which I very much appreciate.  I finished his nighttime meds and they wheeled him off for his stay.

How was Brayden's stay?!
Another successful weekend.

He even had some time with the therapy dog that visits Jill's House.  Upon pick up they gave us a picture of Brayden with the sweet dog.
Each time they wheel him out for pick up, he looks so much older, mature and bigger.  This pick up time, I had a few helpers (Carter, Luke and a friend). 
These weekends have proved to be such a treat for him (while we were at basketball games and wrestling matches for the boys).  And he "talks" about his stay all the way home...he really has a lot of say about all of his fun.

Friday, January 17, 2014

A little help goes a long way

Do you have trouble finding a sitter for your kids?  Yes (like most parents)?  Now imagine trying to find help for Brayden.

We have had nursing hours for Brayden for a few years now.  We have a nurse for 40 hours a week.  Brayden qualifies for more but it is hard to find a nurse for those off hours (evenings and weekends).  Brayden's current nurse has been flexible and trying to shift her hours to help when we needed the most help.

Jeremy is traveling so much these days.  In the month of January, he is gone more days than he is home.  The business has had amazing growth but that means Jeremy is on the road to those offices.  I am running Carter and Luke (with Brayden tagging along, much to his dismay) to their many activities.  Those late night basketball and wrestling practices do not go over well with Brayden.  Especially since he has been at school all day and is going the next day as well.

There has been some meltdowns during those evening practices (and I have been on the verge with Brayden), sometimes bad enough that I had pulled the boys from their practice early because Brayden couldn't take it anymore...he couldn't take the noise, being tired, too much stimulation for that time of day when all he wants is be in his bed...and I couldn't listen to any more of the random, well meaning, strangers coming up to him (getting too close) saying "Oh, somebody upset and tired!" or "Someone wants to go to bed!" and others that have no problem touching him, which he is not a fan of strangers touching him, but really who is?!

After one too many rough nights, we found some extra help.  Brayden now has an attendant.  The attendant can help with Brayden but not any of his medical stuff, so we adjust so that the nurse or I can do that stuff.  We have the attendant for a couple of evenings during the week as well as Saturday.  And the bonus of having this attendant...she is from Brayden's school.  She knows Brayden; knows his fakes cries, his little quirks and preferences.  She was an assistant in his class last year and the previous year.  She also has worked with other families as an attendant.

We are two weeks in and we are already seeing the benefits.  Brayden is not stressed.  Mommy is not nearly as stressed.  Carter and Luke are not stressed to hear Brayden screaming during their practices/games, worrying that mom would pull them early just to get Brayden home.  Jeremy is not stressed listening to me rant and vent about how I stressed I was getting Brayden in and out of practices, then trying to keep him comfortable and content till we can get him home.

Brayden is home, on those busy nights, resting peacefully is his bed (or having a little dance party).  And his first Saturday at home in a long time (rather than at his brothers' game), he was happy and had fun.  So much fun that he was deep asleep after the attendant left.
Having fun and relaxing can be exhausting.

*Clarification due to a comment.  First off, how nice to have someone be so judging, especially when they do not know, nor do they understand.  We do have a nurse, she can work 40 hours but she really works 30-35 hrs recently and the vast majority of her time is spent with Brayden AT school.  So we have her about 4 days a weeks and they are not full days.  Brayden does go to school M-F and I would like to say that he goes every day...but he does not for a variety of reasons.  The new attendant is here so Brayden can stay home and sleep on the weeknights (only 2 nights).  A lot of the boys practices start around 7:00 p.m. and Brayden's bedtime is 7:00.  And the attendant is with him so far 1 Saturday, and will do more Saturdays, so that we can go to Carter and Luke's games.  I have missed ALOT of games because Brayden does not handle the crowd noises, ref whistles, buzzers, etc.  Brayden and I have stayed home and missed many events because it was best for Brayden to stay home.  Now having an attendant, I have the option of actually going and Brayden can stay home, which is best for him.
Just because we have a nurse or attendant with us does not mean that I am not with him.  Trust me, I am with him.  And with him for a lot of quality time.  More time than I even have with Carter and Luke because of their school time and sports.
Please don't judge, you have no idea.  I love all of my boys dearly and part of being a parent is finding the balance.  I would love to have Brayden with me at every moment (and I have pushed him to far, too many times when trying to include him in everything) but sometimes it is best for him to be at home, with some help.

Tuesday, January 7, 2014

A Medical Update and More

Brayden has started his wean off the ketogenic diet.  His is in the 2nd step down of 8 steps.  He should be off the ketogenic diet in February.  A couple of Brayden's seizure medications have been increased (his Phenobarb and Lamictal; he is also on Keppra) to hopefully curb the effects of coming of the diet.  His neurologist also gave us a list of what to do/med to introduce if we started to see more problems with seizures.

He does have seizures daily, so we are monitoring and so far we have not seen any significant problems.  Amen...cause I hate seizures, I hate what they do to him.

The ketogenic diet has been our guiding path for Brayden's medical care since he started 3 1/2 years ago.  Every few months we check in with the neurologist and nutritionist (his pediatrician and GI doctor have been involved with them as well).  His labs were checked all of the time, so we knew what was happening with his body.  Before the diet, NOTHING was pro-active, it seemed like we were always waiting to put out another fire.  In a way, the ketogenic diet provided comfort, not just for seizure control, but with his health because he has been so closely monitored.  Coming off the diet, I am trying to adjust Brayden's care and get back into a regular routine with Brayden's other doctors.

For his bone health: He is coming off the ketogenic diet to help, as well as a super duper Vitamin increase.  He will go back to the Children's bone health clinic in March.  We are still having problems with his right leg being extremely tight and could be his femur still not healing or just his muscles being too tight yet again and time for Botox so I hope to see his othro dr soon (his regular ortho dr not directly part of the bone health clinic).

Then his GI and pancreas troubles, it will be interesting is see how his body will adjust to not being a such a high fat diet.  His pancreas and GI system was not a huge fan of food to start, then the ketogenic diet needed more adjustment for him to absorb and digest.  For what we have seen so far...well, some interesting diapers.  Brayden will be seeing his GI doctor this week.

We also check in with his nephrologist.

We will be making the rounds.

Wednesday, January 1, 2014

His Christmas break

Brayden is a huge fan of Christmas break...for the most part.
Christmas Eve at Grandma Ellie and Papa Warren's house.  Brayden is parked by the roaring fire and lights, good for the rest of the night.  He even endures the singing, explosion of the gift exchange and cousins all around (a quiet Christmas Even does not happen but it is so cozy).
Carter took on the responsibility of helping Brayden open his presents, trying to get Brayden participating.
Then Christmas morning.  Carter and Luke were up early (we started hearing the giggles at 5:45 a.m.).  That was not when Brayden was going to get up, nor do we want him up that would not end well.

And the boys went off to get my surprise gifts.  A couple of necklaces...with turtles (Brayden's mascot).  Jeremy, Carter and Luke designed a necklace for and a turtle.  It was so precious to see how excited they were to have these surprise gifts.

Then to Maryland with MeMe and Papa Johnson.  More chaos and noise.  Brayden handled it for a awhile, then needed a break (a little rest in the bedroom).
A busy Christmas break, with brother sports, practices, family time...even Johnson professional family photo when we, for the first time, left Brayden in his wheelchair instead of holding him (will share those when we get them).
All Brayden wanted was to be home with his brothers, sitting by the could not be any better.

And Brayden spent his New Years in bed and asleep by 7:00 p.m.