Bright Star

Physics was never my strong point,
String theories and relativity confused my brain
Looking into the sky at night my heart understood
ideas beyond my mind's ability to grasp
Somehow, gazing at the Milky Way in the darkness
Helps the universe make sense in my soul
Perhaps the light started a million years ago
just now, reaching my eyes.
But what I KNOW, is here, today, in this moment
The light has reached my heart.
Bright Star has taken her place in the heavens,
Shine me home, when my time has come.

I Didn't Know

I didn't know that children with neurological problems are more likely to develop complications from swine flu. If I had known, if someone had told me, I would have gotten him Tamiflu when he first developed a fever. But in my ignorance, thought, he will be fine, kids get the flu all the time, it isn't a big deal. After almost a week in the hospital with the boy, I am not saying that anymore.

USA Today, Swine Flu

Please check out the link, and if you have a family member who has any kind of neurological or muscular problems, please, please, don't wait.

WE ARE HOME! Little Man spent the whole night last night off of O2. He is back to his regular self and I am so happy to see him smiling and laughing again. There isn't any thing sweeter than being home when you have trapped someplace you hate. I have a feeling if I had been at a Sandals Resort for the same amount of time, home wouldn't seem quite as wonderful. But I was't at Sandals, I was at Club Med and I am over the moon to be home. Already got a nap.

Don't Cross Me

When I am as tired as I was yesterday, it is a BAD idea to cross me. Little Man was asking for someone to come play video games with him, so I asked if someone could. I was informed that due to H1N1 they had to change the rules and no one on "purple precautions" (don't ask me, I don't know!) could have the volunteers come in. Then I said, well let's get a tech to come in and play with him. I was informed they were all too busy to do that.
I got pissed! My little guy has been locked in a room for almost a week and the ONE thing he has asked for, they said no. As far as I am concerned, if a child has a request, the answer is never NO, it is, "well that won't work, but let's find something that will." I just got a straight up no. It was their bad luck that Little Man's doc happened to show up just about then. He asked me how I was, and I told him angry and he asked why. What made me really angry is that Child Life hadn't been by, not ONCE in five days. Not even for an initial assessment. The doc got mad and I am sure he gave Child Life an earful. There are policies for just about everything there and I know that ignoring a child for five days isn't one of them, so they were caught with their pants down and feeling dumb.
Pretty soon child life shows up and very nicely played video games with my boy for 45 minutes.
Bad luck on their part, to tell my boy no for the one thing he has really asked for and to do it on a day when I had gotten about 2 hrs of sleep. If they had done their job, this wouldn't have been a big deal, but they hadn't and I ended up crying angry, angry tears.
I came home last night while my Knight in Shining Armor (he says the only thing shiny about him is his head!) took up the post. Little Man was already back on oxygen, so... I have NO idea when we are coming home. Little Man is doing so much better all around though, I can tell he is recovering. I got him to smile and actually laugh yesterday by being very silly and he loved it. It did my heart so much good to see his sweet smile. He is drinking enough on his own now and doesn't need an IV anymore. He is playing more, talking more, being more reasonable. Even though I am so sad to still be stuck there, I am taking all the positive signs of recovery and chalking each one as being one step closer to being home.
I am wildly impressed with my own cleverness today. Last night, I was calling our Sat respite person to cancel when a thought occurred. Would said respite person be interested in coming and playing video games with the boy while Bald Man and I got a couple of hours away? The answer, YES! And my response? Whoo hooo! So that is plan. I got to sleep in my own bed. I slept like a log last night and woke up feeling ever so much better. And now, after posting, a shower, breakfast and back to Sick Kids R Us by the big stinky lake. Then, some time with my honey. Nice to have some positive things tucked in around the not so great stuff.
Much to everyone's amazement, Bright Star continues to cling to life with humor and strength. The plan is to have her come home on Monday so she can be home to die as she wishes.
Thank you for your kind thoughts, prayers and words. They are coveted and treasured for the gems they are in my life right now. Mwah to all of you!

Spoke Too Soon

Little Man did great yesterday, he needed some oxygen when he took a nap, but otherwise was doing great. Bald Man came up after work so I could get a mental health break. I visited with my friend around the corner and her little girl and then I went and got sushi. YUM! It was soooo nice.
I got back to find Little Man back on some serious oxygen and needing an IV again. I knew that he wasn't drinking as much as he usually does, and I wasn't worried, but hoping he was doing fine. He wasn't and because of the Lithium he is on, he can not get dehydrated, so he got a new IV.
And then? He freak'n stayed up til four in the morning! I am so tired. I am praying he takes a nap soon, cause I am tired in body and tired of his endless demands. He is on some really serious sleep meds. I have been told that an adult would probably sleep for 3 days on them. Well now the nurses KNOW why he is on so many. We usually get anywhere from 2-5 nights a month of him not sleeping like this. Used to be worse, so we take what we can get.
The good news? It is Friday and Bald Man is coming up tonight. Not only do I get to sleep in my own bed tonight, I don't have to get back here early on Saturday either. Whoo hooo!

Club Med

We continue our stay at an outrageously expensive resort. The service sucks, the food is adequate although fairly boring. No mint on the pillow, no cute folded towels or napkins. No masseuse or any other spa type treatments.
And this is one club that first, you don't want to go to, and second, are beyond happy to leave.
Our exit is looking possible at least for tomorrow. Little Man is no longer running a fever, is holding his own off oxygen. They need to see how he does when he sleeps before he is given an all clear. He is more interactive, a shade less vile and in general I can tell he is feeling better. He has me hopping around the room like a bunny, demanding this and that until I am ready to SCREAM! But I haven't. I just want to.
Because he has swine flu, he is in isolation so we can't go to the playroom or any walks. When Little Man heard that yesterday, he lost it, big time. This is not the hospital routine he is used to, and he made his unhappiness known. For at least the entire floor. I got paged from lunch. Ahem, yeah.
I got to spend the night in my own bed last night, while the boy's sweet daddy took a turn at the bedside. So grateful for a good man.
Bright Star continues to amaze everyone with her strength and humor. When asked on the phone by a friend what she was doing, Bright Star chirped, "dying, how about you?" Now you might not be amused by her black humor, but I got a big kick out of it. Do it in style my beloved Bright Star, do it your way.
Thank you once again for the kind comments and continued prayers. They are precious and cherished.

Carried

There is no doubt in my mind that the Lord blessed me with strength beyond my own the last day. I got NO sleep the previous night, and I should have been falling over with exhaustion. You know me, you know how much I NEED my sleep. All I can say is God must have blessed me through the day. I managed a very difficult day and a difficult, sick child with more patience than I thought was possible, given how tired I was. I did it without one single drop of caffeine and my body felt fine. Personally I am convinced your prayers carried me. Thank you.
Little Man is slowly recovering from swine flu and pneumonia. Because of his seizure disorder, he is considered in a high risk category. I wish I had known that BEFORE he got sick. He is no longer throwing up, praises be! He is still running a fever and needing oxygen support, but he is getting better numbers on oxygen than he was before. 100% is the oxygen saturation most people are at. Anything in the high 90's is generally acceptable.
Off O2, Little Man was "satting" in the high 80's, low 90's. Off O2, he was in the 70's and low 80's. Off O2 meaning he has thrown the mask again. Ha.
Speaking of which, a funny. Yesterday was quite the battle to keep the oxygen mask on. When he was asleep, I would perch the mask on his face rather precariously, but it was good enough to keep his sats in the 90's, so we were good. However, everytime he coughed, he would wake up enough to realize something was on his face, and he would throw it off. I would wait til he fell asleep again and the reperch the mask. Rinse, repeat a dozen or so times.
Once, he woke up enough to grunt in a royally pissed fashion, fling the mask, roll over and put the blanket over his head. After he fell asleep again, I snuck the mask under the blanket. The kid made his own oxygen tent! He satted at 99 and 100 for as long as that lasted. I feel evilly wicked! Ha ha ha! Look at me, I foiled a kid with an IQ of 50. Go me!
I am sad for my friend whose little girl is inpatient around the corner from Little Man's room. Sad for her daughter and her for being stuck here without her family. For me though? It has been so nice. I have found laughter and sweet tears of praise in her presence.
My guess is that any hope I had of going home today would be premature, given that he was having fevers all night. But I think today should be a better day health wise for my sweet boy.
I am thinking of sleeping in my own bed tonight though. What a nice thought!
Thank always, for your kindness, your prayers, your good thoughts on behalf of my beloved boy and Bright Star.

Our Bright Star continues to hold off on leaving this journey until she is done making sure she has given every last bit of herself to her loved ones.

Mountain Monday Interruptus

We are currently unwilling inmates at the Children's Hospital by the big stinky lake. Little Man has been feeling poorly all weekend, dry cough on Friday, fever of 104.9 on Saturday and Sunday. With Advil and Tylenol I was able to keep his temp in a non emergency range. He seemed to be doing better today. He woke up fever free and was talking and just feeling better in general. This afternoon, he got really listless again and it was all downhill from there. He started throwing up this afternoon and hasn't stopped since. The biggest problem was that he threw up all his seizure meds. We made the trek down to the hospital by the big stinky lake and they are holding us captive! The NERVE!
I am no dummy though, and I was loaded for bear before we left. Having been around this particular block more than once, I made sure my bag was packed, mini DVD player, laptop and chocolate. Plus some other sundries, like clean undies and a toothbrush. I even remembered my pillow!
Hopefully after some rehydration (by IV, poor kid)and some rest, we will be heading home tomorrow. Fingers crossed and prayers.

This has really been a lousy weekend, Bright Star (my niece) has reached the end of her battle and Breast Cancer will have claimed another life in the next couple of days. I wish she wasn't so young, I wish I had had more time to spend with her, I wish I could have gone and been with her as she said her goodbyes, I wish she could have spent years and years healing lives as a doctor. We have been honored to love her, know her, admire her. Her light will continue to shine brightly, but it will be viewed through tears. Pray her home for me, okay?

****6 am update***
My boy has pneumonia. In spite of my concerns about the antibiotic they chose, they ran it and he had an immediate allergic reaction to it. My poor little boy, about lost his mind as he broke out in full body hives, he was screaming and flailing around and trying to pull out his IV. So, an IV of Benedryl and some Ativan and he is feeling better. On O2 and his oxygen levels are doing better. He is finally sleeping. I am beyond sleep, as I grieve for Bright Star and await the news. I am tired in body and spirit.
So very grateful I don't have to do this by myself. My good husband, my loving children, friends, lift me up at this time.

Mountain, uh... Wednesday?

I must express my gratitude here for a couple of things. One, for your kind support, loving words, thoughts and prayers during a difficult time last week. It was a rough week and I am ever so glad it is over. Two, that last week is over!
My mom is home again and recovering very well I am so glad to be able to say. That was just scary, and she can not do that again. The plan is for me to go out mid-ish October with Buttercup and her parents to go see her. The Bald Man will be staying home with Little Man so I can do some serious visiting, and laughing, and heck raisin'. Already the girl cousins are planning some get together time where we can visit and laugh til our sides hurt.
Have you ever craved laughter? I do. I crave the kind where you end up with tears running down your face, your stomach hurts and you can't catch your breath. I NEED some. I am sure my cuz'ns and sisters will be happy to supply me with a bunch. God bless them.

On to the pictures. Autumn has arrived. Having lived in California for a good portion of my life, I am always grateful for the four seasons Utah has, versus the two California has. Hot and Foggy. Also known as summer and winter, with a week or two of fall and spring here and there. Lucky me, not only do I get to personally enjoy all four seasons, I get to take pictures and make the rest of you jealous share them with you!



























I think Mother Nature was showing off a bit, but because she did, I was privileged not just to witness, but also record, where Winter and Autumn met.














Little Man is continuing to enjoy playing soccer. I am pretty sure I like watching him even more than he likes playing.




I continue to be the luckiest grandma on the planet. When my own children joined our family, I was very sure that there were no other children on the planet who were as beautiful and as smart as mine. I was wrong. My grandchildren have managed to surpass the beauty and intelligence of my own children. Who knew it was possible?

















I know I say it all the time, but it is always true. As I look at the pictures from the previous days and weeks, trying to decide which ones are the best,the bad times melt like the fall snow, and the good moments shine like gems, waiting to be picked up and admired. The pictures not only document the growing of the children, and the passing of the seasons, but also find a way to distill my joy and delight in my family and nature. Thanks for sharing the walk with me. You make all the difference!