Tuesday, April 28, 2015


Tight legs and toes.  Time for botox injections.

Brayden was ready and quite comfortable the entire time.
Scheduled for a Tuesday at 3:30 p.m.  The OR schedule was backed up.  Brayden finally went in at 5:00 p.m.  He is under anesthesia for only about 30 minutes, got several injections in each leg and foot.  Then headed to the PACU.  He was so cozy under many warm blankets, he did not want to wake up from the anesthesia.  He needed a little encouragement to wake up.
Interestingly, since Brayden is on Bipap now for sleep apnea, the hospital requires us to bring the Bipap to use the PACU.  The hospital inspects his machine and has it ready for him in case he needs it.  He did not (he is only under anesthesia for such a short time).

Then we head home...in rush hour traffic, on the beltway.  We finally arrived home around 8:30 p.m.

Thursday, April 23, 2015

Those motility issues

Brayden has not had a bowel movement on his own for over 9 months.  It requires a lot of help on our part for him to actually go.
We have tried:  Miralax, Lactulose, Senokot, Enemas, Magnesium Citrate, and many other things.  It really has nothing to do with the stool.  His brain/body just does not tell him that he needs to have a bowel movement.  Since Brayden was about 13 months old, we have seen the slowing down of his GI system.  The stomach, intestines and now his colon has slowed down dramatically.

We meet with Brayden's GI doctor, that we have been with for years, to go over Brayden's GI history.  We are trying to prep for a meeting with a motility clinic at Children's National.  This clinic is relatively new, no one seems to know much about it.   Brayden will be going to this clinic in a couple weeks.  Meanwhile we are still working on the paperwork for the big motility clinic at Nationwide Children's in Ohio.

We talked with Brayden's GI doctor.  Brayden's GI system has gone through a lot in eight years.  Scopes, testing, studies, g-tube, g-j tube, j-tube, suctioning, draining, medications...

I hope to put together a summary of Brayden's GI history to send to the motility clinic in DC before we meet with them.

In order to understand Brayden's GI system in its current state, it looks like Brayden will have to go through more testing and studies, some rather invasive.  It also looks like Brayden is heading toward a colostomy bag, actually there are some alternatives to a colostomy bag but all something similar.  Two of Brayden's doctors have already started prepping us for this idea.

We will see what the clinic at Children's National in DC has to say.  Then we still plan to see the Motility Clinic in Ohio, but that will take months before Brayden gets an appointment.

Pooping is a very important part of one's life...

Monday, April 20, 2015

Infusion Time

Time to park it for a day at Children's National.  Bone infusion day.

Brayden was NOT having it.  He started his screaming fit before anything even started.  He was SCREAMING (he typically does this at night for a couple of hours, several times a week), he gets to the point of no return and nothing can calm him down.  I held him, rocked him, laid in the bed with him...he was not settling.

The morning of the infusion starts at 8:00 a.m. to check-in.  We wait for a bed to be delivered to the clinic (recliner chairs are provided but Brayden cannot sit in those).  Then we wait for the pharmacy to make the pamidronate.  We wait for the IV team to come.  We wait for the 4 hours for the infusion to be administrated via IV.  It is an all day process.
An anesthesiologist came to put in Brayden's IV (thankfully the nurses in the clinic know he is a hard stick so they don't even try).  We have never seen this anesthesiologists...which always makes me nervous.  I tried to convey to him the best places to find Brayden's veins, he didn't listen to me much but he quickly realized I was right.  He looked and looked, tried twice and found no good vein.  Thankfully he stopped and requested the special IV team (that basically goes around the hospital just to do those hard-to-find-a-good-vein patients).  This team we know and have done Brayden several times...and they got it in one try.

Brayden seemed to have settled down at this point, looking like he was going to sleep.  The infusion started.  Brayden started the screaming again and he did not stop.

I forgot to mention that we are in a tiny room, that we share with another patient and their family.  Brayden's screaming was upsetting the little girl there for her infusion.  She was crying, "Please don't give me the shot, I will try to be brave."  I could not get Brayden to settle. 

Many of you may think Brayden is upset about the infusion, the IV, etc.  While that might be a reasonable explanation, we are thinking it is not.  He often has this screaming episodes, like he is in no control of them...like he is out of his mind...the harder we try to calm him the more upset he gets.  And he can go for hours.  Today was one of those days when he went for hours.  It is the MOST exhausting thing for him and me.  I had to leave the room for a moment (to cry a bit in the cafeteria and call Jeremy) while Brayden's homecare nurse stayed with him, who thankfully came with us for the infusion.

Brayden finally settled for a little bit, started screaming again, then settled down again...it was a roller coaster.
Towards the end of the infusion the nurse arrived with a gift for the kids, Brayden got a little Simba stuffed animal.

The infusion ended.  In weeks prior we talked with Brayden's neurologist and the bone clinic team.  Brayden's reaction to the bone infusions, the few days after the infusion, have been really rough.  High fevers (104) and uncontrollable seizures.  The doctors agreed to give Brayden a good dose of Ativan via his IV before we went home.

Saturday, April 18, 2015

The Birthday Boy's Party

Brayden was ready for his party.  Actually he was ready for the beautiful weather and being outside.
At first he was pretty serious.  But then it came time to open presents and he made friends with a singing/dancing monkey.  He loved it.  He danced and smiled.
The world must stop when he smiles.  He does not do it often and we do not know how to make him smile...so when he does, I need to slow down time and soak it all in.  Love that smile.

Friday, April 17, 2015

The Birthday Boy

He had to go to school on his birthday, much to his dismay.
In protest he would not open his eyes or even acknowledge me.

After school he did get some good cuddles from daddy and licks of an ice cream cake.
As soon as Brayden left for school, I had a melt down.  Some how his birthdays always sneak up on me.  Perhaps because he is developmentally stuck in this baby like ability or that I just cannot believe he is still with us at 8 years old.  I have never let myself think about he growing up or getting bigger.  When he birthday arrives I am overwhelmed with emotions coming from every which way.  Mostly I am so thankful we have had 8 years with him.