Tuesday, September 15, 2015

Home Again

Last Wednesday, Isaac was admitted to Children's Hospital Colorado with rhinovirus and a partially collapsed lung due to aspiration. We don't know when he aspirated, perhaps a few days before when he had a mucous plug at a fundraiser up in Black Hawk (worth it's own blog post, by the way!), or perhaps he aspirated when he threw up on Tuesday morning for no apparent reason.  Whatever the cause, it was enough to make him the angriest most awful feeling Isaac I have ever seen.  He was stable, but sick, and it would have gone downhill fast.  I'm glad we got him to the ED, got a chest x-ray, and determined that he wouldn't need antibiotics or an IV.  That last part is crucial because they tried for over 45 minutes to place a port to draw blood, then another 45 minutes in the middle of the night trying to draw more blood.  It turns out that if you want to draw blood from Isaac, a heel poke better be good enough.  With no real muscle to speak of, his veins kind of float in his body, needles be damned.  Isaac and I stayed 3 nights there, with Jeremiah, Natalie, and my parents visiting in the afternoons. Jeremiah and I usually have a routine for hospital stays- we switch off nights and spend a few hours together at the hospital while a grandparent or two stays with Natalie.  This time around, Jeremiah was in no shape to be staying in a hospital room.  Four weeks ago, we were rear-ended in our minivan.  It didn't seem like it should be too bad, except Jeremiah suffered whiplash and a concussion...a concussion from which he is still recovering.  People, those things are no joke.  At the hospital, I had to repeat Isaac's room number at least 4 times over 2 hours for Jeremiah to remember it.   His doctor ordered no driving, no sleeping in the same room as Isaac and his loud, bright, machines, no stimulation, and immediate vacating of an area with too much stimulation.  So the hospital was just awesome for him.   Anyway...we are home from the hospital now, but Isaac is still sick. He is requiring twice as much oxygen as he used to, twice as many breathing treatments, additional fluids, lots of tylenol, and about 8 hours a day of television.  Tonight, however, he laughed as Jeremiah and Natalie played peek-a-boo with him, and giggled when I kissed his arms and toes. Some of you can imagine the immense feeling of relief when he began responding to us more like his normal, happy self.  I have cried many tears this past week, stress, fear, sadness, anxiety.  After we brought him home, I was afraid he wouldn't live through the weekend. That isn't an exaggeration.  Colds are often the cause of death for a child with SMA.  But Isaac is a fighter. I pray that he heals from this virus entirely, and soon. How about a miracle? How about tomorrow? How about he wakes up with no cold, and no SMA? 

While I was in the hospital last Friday, September 11, I posted the following on Facebook.  My sister suggested I share it here as well:

"Today I am celebrating 19 months with our amazing, sweet Isaac, while being surrounded by Facebook posts from other parents who are home or in another hospital struggling with keeping their sweet ones with SMA well and alive, more posts about the memories of all of the people who lost their lives on 9/11, more posts about the tragedy of lives lost to abortion. Here at the hospital I am surrounded by other haggard and worried looking parents, sharing glances of sympathy on the elevator, half smiles that say "I know how you feel." I saw a young girl explaining her chemo pump to her mom, another girl crying in pain and sadness as she walked with her mom and brother, pushing an IV pole and carrying her catheter bag, babies in special strollers, feeding pumps and oxygen and bi-pap machines and extremely brave families everywhere. Life is such an incredible miracle, a beautiful gift, and every person has his or her place in this world. All of the war and persecution and murder and terrorism and hatred cannot change that life deserves a chance, that people are precious, or that every soul is loved by someone."

That same night, one of the families I was referring to lost their little girl, Auni, because her body was unable to fight off a cold.  She was two months older than Isaac.  She passed away peacefully in her mother's arms.  This is my prayer, my most honest hope: when Isaac has to die, that he be in our arms, peaceful, surrounded by our hugs and kisses and caresses.  The night after we got home, Jeremiah and I talked about how we feel like Isaac's time is coming.  Maybe not this week, maybe not this month, but soon.  We talked about our wishes for funeral plans-something we hardly spoke of even at Isaac's diagnosis.  Isaac needs your prayers to be healed of this cold, and kept safe from any more colds or flu.  Jeremiah especially needs prayers for healing.  This concussion is keeping him from being able to play with Isaac on his eye gaze, to even sit holding his hand while they watch cartoons.  If he tries for even a few minutes, he starts to get a headache- a sign that his brain is overstimulated.  It isn't fair, because time is being taken away from Jeremiah to spend with our children.  

Please pray for us, for our families who go beyond expectations to take care of us, for our friends who do the same, for Natalie who has started pre-school and dance class and has started wanting 'a big person' to snuggle with as she falls asleep. With that plea I will hit 'publish' and pray that we all get some sleep.

Tuesday, September 1, 2015

The Last Shot!

This here is a blatant request that any and everybody come to Roy's Last Shot in Black Hawk for a fundraiser for Isaac!  Roy is an awesome, generous man, and his restaurant is the best place for a meal on the Peak to Peak, if you ask me.  He offered to organize a fundraiser, and it is shaping up to be a good sized event.  You may know that I quit my job last summer, about a month after Isaac was diagnosed, in order to stay home and take care of him.  I still work a few shifts a month as a speech therapist, when the need for help at work and the necessary private duty nurses at home happily coincide.  Jeremiah has been a stay at home dad since Natalie was born.  He works construction and bicycle building jobs on the side to help bring in some income, often in the middle of the night when the rest of us are asleep.  We have incredibly generous friends and family who have consistently helped us with some of our expenses, but without a full-time income we are flat out struggling.  Roy stepped in at the exact moment that the money raised via GoFundMe was dwindling, and we plan to express our gratitude in person at the fundraiser!  So if you're looking for a beautiful drive on the Peak to Peak this labor day weekend, come on over, get some grub, and admire the truly impressive collection of shot glasses.   Hope to see you there!