Life’s a beach … and then some.

Exactly 7 days ago, we were on the beach charging guacamole and virgin pina coladas to room 118 at the Westin Resort in Puerto Vallarta, Mexico. Today, it’s day #4 in room 3139 at Seattle Children’s hospital in the Train zone. I’ve been running upstairs to the cafeteria each morning for my breakfast, poppy seed bagel w/ cream cheese and a Starbuck’s drip coffee for $2.53 … no room charging privileges here.

 

We were here …

 

 

and now we’re here.

 

 

 

It all started with a seemingly harmless cold. Probably a virus picked up from preschool, her siblings, or her nurse uncle. She had the sniffles for a couple of days and a little cough as she always gets at the end of a cold to clear out her lungs. So she spit up A LOT. She spit up all over grandma’s rug and sofa on Super Bowl Sunday. With increase spit-up, you can get an increase in stomach acid to help digest the mucous build-up. On Feb 13, 7 days before our scheduled trip to Mexico, I took her in for an ear and lung check. We also got Zantac prescribed in hopes of alleviating the acid reflux issues. Unfortunately, the Zantac may have made things worse by causing her additional nausea.

February 20 was our departure date for our first ever family vacation since Jennah was born. She had been spitting up for a number of days now, which meant most of her anti-seizure meds were coming up as well. So on the second leg en route to Puerto Vallarta, Jennah had a seizure on the plane. I got to use the airplane-issued barf bags for its intended use for the first time.

The first night in Mexico was a disaster. Jennah proceeded to vomit with every feeding. It was a mess and we ran low on her burp clothes and laundry. I was hand-washing clothes in the sink continuously and our room smelled of sour milk. We had taken 20 cans of formula for the 4-day trip since she is supposed to take 3.5 cans a day and I wanted to be prepared with extra in case we were stranded somewhere. We used 5 cans of the formula and not one of them was completely empty when I threw it out. She took in literally less than 20 ounces of formula over the 4 day period. I tried to give her a few ounces of water as often as was reasonable, but most of that came out as well. Although Jennah’s siblings had a well-deserved, wonderful time in Mexico, I couldn’t wait to head back home.

We arrived home late Friday night and I put a call into her pediatrician’s office the next morning. Perhaps I down-played the situation too well because they suggested that we could wait until Monday to visit her regular Dr. during normal office hours. So we agreed and tried our best to get some fluids into her. She had another tonic seizure that night and was looking very weak and frail the next morning after vomiting out her morning meds and feed. So we decided to take her into the Seattle Children’s urgent care clinic in Bellevue, despite the fact that I was supposed to play in a Sammamish Symphony concert that day. At 2 PM, precisely the same time as the concert downbeat, Jennah was put on IV fluids. After a dose of anti-nausea meds (Zofran), and a bolus of IV fluids, we were released. We got her to hold down a solid 2 ounces of formula. 4 hours later, it all came back up.

On Monday, we went for a follow-up with her regular pediatrician. We tried to push more fluids into her g-tube and got more Zofran. She still vomited relentlessly.

On Tuesday, her pediatrician told us to go to the ER at Seattle Children’s. This time, they decided to admit her since it’s been over a week of persistent vomiting and she was thoroughly dehydrated with no wet diapers in over 6 hours.

The unofficial diagnosis is that Jennah is full of sh!t. She’s severely backed up and the dehydration just exacerbated the whole thing. It’s a common problem among children with cerebral palsy and we do have to regulate her with daily doses of Miralax, but this was apparently not enough. So we’re working on a total bowel cleanse and then we’ll try to work up her feeds until she’s back up to normal intake levels. The problem is she keeps vomiting up the NuLytely solution that is supposed to clean her out and now they’re worried about malnourishment, so we’ll probably start IV/TPN feeds today … joy. This is obviously taking days to accomplish … we anticipate staying throughout the weekend.

So there you have it … I can’t recall a year since 2007 that we haven’t had a stay in the hospital.

Good Mourning …

Now I remember why I started this blog over 4 years ago … to rant and rave and get things off my chest. Many of you probably feel better about your lives and pity mine, which I honestly don’t mind and you should not feel guilty about thinking, “glad I don’t have to go through that.”

Last week was my birthday and I cried a lot … “It’s my birthday and I can cry if I want to” taken literally. As one of my friends said to me last week, I am in mourning. It’s nothing new, but periodically, I realize that our lives is not and will never be normal. This Year of the Dragon marks my 3rd round. I look back at the last year of the dragon in 2000 and cannot believe that my life was so utterly different. So normal. Therefore, I’m mourning the loss of a normal life.

I am not regretful, resentful, or ungrateful. To the contrary! Jennah has been the biggest gift to me. I never ever wish that she is any different from how she is. Of course, I want her to reach her fullest potential and I spend every waking (and sleeping!) hour trying to help her achieve that, but I never think, “oh how I wish she can walk, talk, and see”, and yes, I highly resent those people who say just that. She is who she is. If she could see, she wouldn’t be the same Jennah with the wandering eyes and keen sense of hearing. She is blessed with not having to see or understand some of the horrid visions we all have to endure. She shouldn’t walk … do angels walk? She’ll have perpetually clean, baby-soft feet that I can kiss all I want.

Everything was finally settling down and falling into place. I got my husband and home back in order and Jennah was overcoming the withdrawal symptoms from weaning off the phenobarb. She has been so much more aware and starting to sit up … we were getting comfortable. But then the seizures came back. It was really only a few seizures for just a few days, but it was like a slap in the face. A reminder that our lives cannot be normal and we shouldn’t forget it. It made me realize that we can never let our guard down. We’ve only been doing this for 4 years …this is going to be a long, long road.

Our house is littered by crazy equipment and devices that has become part of our décor … there’s a floor sitter, the jungle gym that I built out of PVC pipes, and a wedge that hubby had custom-made in Dubai in the great room; a stander in the dining room, and feeding supplies with dozens of can of Pediasure in the pantry.

So yes, our lives are a bit complicated and it takes some extra effort to get through each day. Yet I feel like I could probably do so much more if I didn’t mope around and act so selfish. Do I really need any “me” time? Do I really need to sleep, eat, or shower? What about my other two children? I shuttle them around and tell them what to do, but I never sit down and play with them. But then again, do I really have a right to complain when there are so many others out there who are cold and homeless, or in pain fighting cancer? No, I shouldn’t complain … I should be thankful.

BTW, I think one of the worse things anybody can really say to me once they learn that Jennah is disabled is, “oh, I’m sorry.” WTF??!! That makes me boil. What is there to be sorry about? I’m certainly not sorry to have a child with special needs and it’s not like anybody did anything wrong … she is not a FAULT for goodness sake! No … you say, “what a blessing”, or “you’re so lucky.” If there’s anything to be sorry about, it’s that I sometimes (or often) have a bad day, or become weak. Then it’s OK to say, “sorry you’re having a sh!tty day …”