Friday, November 29, 2013

Happy Thanksgiving

Family and friends make the holidays so wonderful. Bryce and I are really enjoying our craft times, play dates etc.  Nurse Julie brought us some finger paints and he painted for an hour and a half.
Bryce at the park making friends 

Bryce loves to draw circles and lines and squiggles with shaving cream too in the bath. The water crayons are really exciting for him too.  He gets worn out through day but his 2-3 hour naps give him extra energy before bed.

He loves his routine and so do I, its  nice that we have so much consistency. Nurse Julie has learned how we do out daily activities and what he likes. She is really great at working with us. I have felt more confident now as I went back to teach for the first

Bryce and our Friend Calypso
She is 6 months older and was able to come visit us at our home
Bryce making a thank you gift to Emily for
going to the zoo with us.


Sunday, November 24, 2013

Santa and Bryce Talking!!

What a great day!

And, what a blessing today as we went for our walk to run into the Heritage House, here in our little town, and we met Santa.

  I didn't think we'd see Santa this year because of crowds etc.  There he was, without any lines, or folks waiting. I was very happy to relax, Santa was so kind and was very open to learning how to hold Bryce.

What a nice place!! What a gift!

 Bryce is babbling too so much. Check out this 12 second video below

One of my concerns was his sudden loss of speech in July and months without Steve's nursing team doing the same kinds of exercises and speech therapy. Its concerning that they ignored the medical orders - Physical Therapy is as important as OT and Speech. We don't do traditional PT because its contraindicated for children with SMA, but we keep Bryce active by letting him hold a cell phone, that is considered PT or reaching up high to touch the bunny on his mobile above his bed. Daily play is his therapy. Talking and singing and babbling is the key to extending my son's life.

Speech: Well the Barium Swallow was done when  he had an ear infection and so as most providers know, when a child is sick, its  not really the best assessment of his swallowing capabilities. However the facts remain - speaking and swallowing are the two areas we focus on at this time.  Bryce does have a hard time swallowing pureed food, does better with his sippy cup. Most of his food is via g-tube. Dr. Finanger (Bryce's neurologist) explained to me that when he loses the ability to speak, he loses the ability to swallow well, and that means more suctioning and eventually 24 hours of suctioning to prevent aspiration. (that is with or without a vent)   
For now, Bryce is an amazing strong little man fighting SMA.  He is doing great!! He is talking more and more and the doctors are in awe of his own little milestones.  I am so proud of him.

Thursday, November 21, 2013

November Fun

Its great that in October and November I've been able to have nursing a couple times a week and now if I get sub hours, there is now staffing available for me.  I still have to work the details out with our Medically Fragile Nurse Coordinator, but very pleased with the transition of mommy being full time caregiver to mommy being able to have a nurse and be mommy a bit more often.
I have had a wonderful addition to our family - a student studying to be a speech therapist has been coming since about September. I am grateful for working part-time so I can afford to have her work with Bryce. She is excellent and its been a terrific collaboration. I modeled the flash cards, drawing, using colors, matching cars to pictures and colors - Bryce has regained some speech that he lost in July - Between my working with him 4 days a week and my student helper along with physical therapy added into his daily play, he is really much happier, motivated, and making strides to catch up on some lost skills at his age level. I know that my educational career was going to be beneficial, I had no idea, how powerful and rewarding being able to educate my son and adapt activities for him so he can learn what other kids learn.
Its unfortunate that I had to leave teaching at ELS in May to care for Bryce full time, however, I am fortunate that I was rehired as a substitute when needed. This is so great. In the meantime, when I am not subbing or caring for Bryce,  I enjoy landscaping a couple times a week. 
Additionally, I have managed to coordinate all the Speech, PT, OT providers to communicate with our nursing company and so they can implement at least basic safety and routine therapies in both homes. 
I updated Bryce's Care Plan. Check it out!!

Tuesday, November 5, 2013

Rhinovirus Take 2

Well - good news and bad news -  

Sunday when I picked up Bryce from daddy's he had a bit of a cough and runny nose, but he seemed cheery and energized.  A cute little trooper.

Once home we relaxed, went for a walk where he fell right asleep. I knew then, he must be coming down with a cold. Per doctors, a runny nose and cough must be treated with utmost care and diligence. Last April, same virus and in 12 hours he was in respiratory distress.

I was grateful Sunday night to have all the  bipap, oxygen cannula, nebulizer, albuteral, cough assist and suction machines at his side.  We played, took a bath and blew some bubbles - did exercises in bath and showed off to Martha some cool new moves.  Then read books, did cough, suction and albuteral.  I played guitar, just a couple songs and he fell right to sleep.

In an hour his stats while on bipap dropped to 88 -   86 -85 - He did not pop back up like he usually does. So I repositioned him several times he bounced up to 92 then would drop again. I woke him up for treatments and put him back on bipap. His stats went up to 94 after treatments and then up to 98 once bipap resumed. However, I think by 1 or 2 am Martha came in to say goodnight, we were both finally asleep. I am so grateful to have her help especially with rough nights like this one.

Monday I woke up at 6 am to do repeat all the treatments again, begin chest percussions. He responded very well and sounded great. I used the bulb to suction his nose and the BBG can only be used so much or it irritates his nose and hurts.   He seemed very under teh weather so we snuggled, watched some videos and excitedly waited for nurse Julie to arrive. I was so thankful, so I could go get a little bit more sleep.

It was no surprise that by 4pm our pediatrician recommended back to the hospital. Sure enough, he has the Rhinovirus. What is nice is having the reassurance and the help to care for Bryce while I can relax. This was similar to previous visits - but this time not as scary as he was not in distress - My son's doctor appears to be more proactive at this time. I am concerned though that he is not a dietician and there has been a lack of follow-up with his communication with the dieticians, OT, PT, and Speech.  

Its late, I am tired.. Bryce fell right asleep in my arms tonight with bipap at the

hospital. His stats are all back up, his secretions are gone, they gave him an antibiotic for his ear infection.

What I learned from this one is that no matter if he is on bipap or not, if he is sick, he will still drop.  There is much more to learn about my son's respiratory care.

Heading home tomorrow I hope.  Looking forward to it.
Love all - Jenni and Bryce