Tuesday, April 26, 2016

Driving - April

Bryce is super cool as he drives around and checks out the cars at the museum. Its been a wonderful change to see his energy levels up and getting out of the house.

This moment is so precious!!

Since the last hospital stay, we have been on and off oxygen - with multiple respiratory illnesses. We are now facing gastric complications too -

All in all, chin up, we are breathing on our own at 98-100 and HR 110- 140 during the day and activity. If in respiratory distress or gas pains his  HR goes up to 190 with RR at 45- but he can calm down with albuteral treatments, rest, and other distractions like books, grandma, toys.

We are experiencing new symptoms these days. We are working with the best of teh best.

Tuesday, April 12, 2016

My Angel - Easter Egg Hunt

I am so grateful for all the play time and fun Bryce and I continue to have. He is a fighter of SMA-1; he came home from the hospital 3 days before Easter. We have overcome another cold. What a joy at the age of 4 - and now we tell stories in the morning, make our plans each day together, think of fun jokes to tell, sometimes he asks me to snuggle up and just talk before waking up.

So here's to Mom's across the world who never give up and continue to be a fighter mom for their child. To all the mom's and kids who continue speech, physical and occupational therapies. To all those mom's who keep their kids engaged, moving, involved in daily play, who hold, snuggle, and provide unconditional love!!

Happy Easter and Happy 4 Years and 3 Months My Darling Bryce!!

Tuesday, April 5, 2016

Spring Break 2016

Days before Easter, Bryce was able to come home from the hospital -

We had experienced bipap malfunction for days prior, till it was finally replaced, the regulator was broken in our home for oxygen the day I called the paramedics.  I complete disaster for medical equipment failing.

Fortunately, the paramedics did help me get oxygen to Bryce, but his heart rate was at 190, his respiratory rate was increasing to 48-50.

While his numbers became stable in the ER, his RR was at 60. The doctors prepared our room in the PICU. His blood tests confirmed that same virus "Rhinovirus" which puts us here every year for weeks.

At home, with mom
Within 16 hours, Bryce responded will to treatment, but completely exhausted. We transferred to the 9th floor, out of the PICU, for another couple of days.

 I stayed up with him for 48 hours, went home Sunday night to rest, then remained at the hospital from Monday morning till Tuesday night with him, suctioning, playing cars, reading books, getting in the wheel chair, tumble chair, etc.

The first thing Bryce said on Tuesday before the swallow study, after sleeping so well, "can I go home?"  I gave him a hug and asked him to ask the doctors when the come. He did. He was in his chair, whirling around - I think he charmed them; I think they made it a goal to let him go home.

We got to go home Tuesday night. Remain on post hospital respiratory treatments, 24 hour suctioning , feeding pump, and care.

Bryce's feeding plan has changed, but it was not new news, its just good news that the nurses all now know not to feed him hard foods / solids etc. Purees, potatoes and gravy still just fine. Feta cheese, for example is still ok. We played a game this week, where he has bites of the food pouches, apple sweet carrots, banana blueberry, strawberry apple, etc and he rated them - 5 being the best.

Easter was fun because our friends stopped by and gave him his little bag. I hid the eggs in the house so he could find them.

We couldn't go out that morning because of treatment for the egg hunt, but thanks to little Hailey, she remembered us and brought over his bag.