Generosity

To say my family and I have learned a lot through Eric's ordeal would be an understatement. And so much of what we've learned has come from you all, our family and friends, our community, our church, teachers and students at the boys' school, indeed everyone who has taken an interest in Eric and our family. One of the biggest revelations has been the realization of the amazing generosity of people in general. My family and I have been overwhelmed with the generosity and outpouring of support for us through this difficult time. Prayers, visits, help with caring for Andrew, meals, cards, gifts, blog comments, phone calls, listening ears, lodging, financial assistance . . . the list goes on and on. People just want to help. At times, it's all seemed too much. It's truly humbling, to be on the receiving end of such generosity. And the thought crosses my mind, how will we ever repay? Then we realize, that is not what's expected. A giver expects only genuine gratitude in return. Truly, we do thank you all from the bottom of our hearts. And it's not only humility and gratitude that we've garnered, but you all have set the bar high for us. You've shown us a level of generosity that we hope to emulate, to pass on as we encounter others in need. If my family and I can copy the compassion you all have shown to us, that would be the ultimate blessing.

Eric still has the sneezes and sniffles today, but generally seems to be okay.

Under the Weather

We had hoped to keep him healthy, but alas, Eric awoke this morning feeling under the weather and soon began showing signs of the sniffles. So far, his lungs remain clear, his sputum still white, and no fever. Hopefully, the bug will stay in his nose and not migrate to his lungs. No one else in the family is sick. Who knows where he picked it up. But let's hope that with lots of rest, some extra vitamin C, and plenty of prayer, he'll put it back down real soon.

Sleep Study and Star Trek

Eric's sleep study went well last night, for the most part. As the technician hooked him up to a gazillion wires, he and I both wondered how he'd sleep at all. But he slept about the same as he does here at home; fairly well the first half of the night, then fitful and barely dozing the second half. The tech told me in the morning that he did have periods of REM (deep dream) sleep, which is good, no periods of apnea (stops breathing), and his blood oxygen level was consistently 98-99% on .28 FiO2. He had a (painful) arterial blood gas in the AM to check his PaCO2. Don't know those results yet.

Bob was off today, so he took Eric to PT. After PT and Sonic, Drew and I met them at the mall cimema and saw Star Trek. Not bad but an awful lot of really loud action; not good on a day like today when I have a headache. The boys all seemed to like it.

Post-PT Sonic snack . . . Bacon Breakfast Toaster and a watermelon grape Dr. Pepper.

Drums and Dentists

Eric was introduced to the snare drum today. Percussion is harder than it looks!

Despite everything Eric has been through in the past months, going to the dentist remains a dreaded tortuous experience. No cavities though!

Post-dentist Sonic snack . . . popcorn chicken, tots, and a strawberry watermelon Sprite.

PT, Percussion, and Polysomnography

Eric has been off the ventilator for eleven days now and doing fantastic. Nevertheless, when I informed Dr. Sockrider, she requested a sleep study to verify that he's okay sleeping without it. She wanted us to come to Houston to do this, but I said we've got sleep labs right here in Lake Charles. The sleep center at Memorial Hospital is scheduling into September, but, with a call from our friend Dr. Thompson, they squeezed us in with a cancellation tomorrow night. I'm not worried that he needs the vent to sleep. But I do hope the study will shed some light as to why he claims to be so sleepless every night. According to Eric, he awakens each night between midnight and 2:00, and just lays there the rest of the night. He doesn't know why.

We ran into Dr. Thompson at Memorial today while we were there pre-registering Eric for tomorrow night's study. He could tell Eric had gained weight (13 pounds since we've been home). And he said he thinks Eric is more than ready to lose the trach. Let's hope the Houston doctors concur.

PT/OT went well today. Eric continues to get stronger every day. Percussion/marimba lessons are challenging for Eric. He's not used to playing chords or trying to look down at the keys and the music at the same time. But he's giving it a shot.

Post PT Sonic snack . . . Super Sonic Jalapeno Cheeseburger and an apple limeade.

Intricacies

I love dragonflies. I love their shimmery colors and the way they dart and zip through the air. Bob found this "mosquito hawk" carcass in our driveway. Even dead, its wings glisten with iridescence. Notice the intricate pattern of the wings, symetrical as panes of a stained glass window. The creativity of our Maker continually astounds me.

Eric joined the high school band's drum line this afternoon. He'll be meeting with them the next two days for orientation. They started him on the marimba, which is like a xylophone on steroids. Then he went to Sonic and had a breakfast burrito and an orange watermelon Sprite.

8th Grade Day

Moss Bluff Middle had "8th Grade Day" today, just a fun day for the 8th graders. Bob took Eric and Andrew there for awhile this afternoon. It was great for Eric to see his friends before school lets out for the summer. And the kids were so excited to see Eric. It was especially special because a couple months ago, we never thought he'd be out of the hospital before the last day of school.

Eric got to see another good friend, Quentin, when our friends the Cavells from Baton Rouge stopped by to visit this evening. Quentin was Eric's roommate last summer at the Governor's Program for Gifted Children. Eric naturally is disappointed he won't be able to attend this year, but he's counting on going back next year.

Surprises

Eric continues to surprise us. It seems every day, he does something new on his road to recovery. This past Thursday evening, he walked almost half way around Gabriel Sq. in our neighborhood. His furthest distance at that time, and I thought it quite impressive. But Friday evening, he walked the whole square! It's .84 miles -- I measured it on my bike. Two weeks ago when we went to church, Eric was in a wheelchair. Today, with O2 tank slung over his shoulder, he not only walked from the parking lot into church, but, instead of taking the elevator up to fellowship hall, as I expected, he strode right up the stairs, all 21 of them! I can't wait to see what he does next.

Busy Day

Sorry the post is so late today. I was away from home virtually all day. Went to the gym for step class in the AM (Kim, where were you?) Then I finally got to cash in my birthday present. Bob gave me a gift certificate to Scarborough Day Spa here in town for my birthday, February 5th, the very day Eric got sick. So I wasn't able to use it till now. Anyway, guys, this is one of the best gifts you can give a girl. A day of pampering. Very relaxing. I also did a lot of shopping. And this evening we had a lovely time at our friends, the Kreiders', house. Great company, food, and a fun game called Apples to Apples. Eric does enjoy getting out and seeing friends. He continues to do well.

Encouragement

Thanks to everyone who encouraged Eric to try the electrical muscle stimulation at PT. After considering all your comments, emails, and phone calls, he agreed to try it today. Of course, it was no big deal. And Kim was thrilled.

I put Eric on the scale this AM, and my eyes popped. He weighed 111.2, up three pounds from yesterday. I didn't think that was possible, but there it was, digitally displayed. Ms. DeFelice, what in the world did you put in those pancakes yesterday!?

Post-PT Sonic snack: Frito Chile Cheese Wrap and an orange slush.

Self Portrait

I was out on the front porch (It's such a nice night!) messing around on my computer when I thought it might be nice to take a picture of myself out here. After playing around with it a little bit, I got it to look like this, maybe a little more mysterious than the original, and definitely cooler. Mom said I should post it on the blog. She's been bugging me for weeks to send one out to the world. So, while I'm at it, I'd like to thank all of you for keeping up with my life to date and especially for your continuing prayers.  It's been great to have a great community to support me!

Eric

Back in Class

Eric's math teacher, Ms. DeFelice, told Eric that today was "chocolate chip pancake day" in math class. She does that periodically. Eric thought that would be a good opportunity to head back to class and see all his math buddies. So he woke up bright and early (actually, he claims he doesn't sleep past 2:00 AM anyway) and we made it to class by 8:00 AM. Math is Eric's favorite class, Ms. DeFelice one of his favorite teachers. In addition to eating pancakes, they played "Set" ( a favorite card game amongst math whizzes) and then attempted to stack cards. Not easy on slick tilted desks. The second photo is Eric and the "calendar girls." Anyone who came into Eric's hospital room during March and April knows what I mean. These kind-hearted industrious friends created giant colorful calendars with quirky, humorous, or poignant quotes on each day. The calendars brightened Eric's room, kept him oriented to the date, and contributed to a lack of productivity for hospital staff at both Lake Charles Memorial and Texas Children's, as they'd stare, read, and laugh.

Does anyone know this dog or who he belongs to?? He spontaneously joined me on a morning walk today and followed me all the way home. He's still sitting on my front porch, hours later. We don't want a dog. Though I do have a soft spot for stray animals. He's really a sweetheart. But if he sticks around and I can't find a home for him, I will take him to the animal shelter.

Happy Hour

It was Happy Hour indeed today at Sonic. Not only did Eric eat a SuperSonic Cheeseburger and a grape-watermelon Dr. Pepper, but several of his friends met him there for a Happy Hour reunion.

Can anyone convince Eric that electrical muscle stimulation at physical therapy does not hurt?! Eric's physical therapist Kim wants to do this on Eric's legs, and he is flat out refusing. He thinks it's going to "shock" him.

Andrew

After one recent post, one of Eric and Andrew's grandmothers commented that she loved seeing Eric's smile, but what about Andrew? So here are a couple shots of Andrew, taken on his band trip to Orlando last month. As first chair, Andrew enjoys keeping the clarinet section in line. Bob and I felt bad that we couldn't go with him. Thanks so much to Andrew's chaperone, Nicole, for taking some photos of him for us.

Most Likely to Succeed

Another awesome day for Eric. The number of the day is two. Two nights now off the vent. Two pounds up on the scale this morning since yesterday. Two activity-packed hours with PT/OT. Two root beer floats (one for Mom) at Sonic, along with popcorn chicken. Quote of the day (from Kim, Eric's physical therapist, in response to Eric's progress): "I'm so excited! Did I say that already?"

Andrew brought home their 8th grade yearbook today from school. In elections held prior to Eric getting sick, he was one of four students voted "Most likely to succeed." Eric has proven this to be true already, by showing us all his determination, perseverance, and faith in his recovery.

A Night Off the Vent

Eric decided he wanted to try sleeping off the ventilator last night. He's been doing so well, Bob and I agreed to let him sleep with only oxygen. He still didn't sleep terrific, but his breathing seemed to be fine. His vital signs were all okay. The reason he's not sleeping well, we suspect, is because of the overnight continuous NG feedings. I mean really, who eats all night long and sleeps through it? But nighttime is when he gets the bulk of his calories in. So we can't stop them. Especially since it seems, despite frequent trips to Sonic and a crawfish boil last night, his weight has leveled off over the past five days or so. I went to Sam's Club yesterday and bought some sugar max smoothie mix and some other high cal foods. We'll see how he does this coming week.

Crawfish

It's crawfish season in Louisiana. This evening, we went to a crawfish boil/auction at our friends, the Dutton's, church to raise funds for their upcoming mission trip to Nicaragua. I was the the highest bidder on six hours of housecleaning. Woo hoo! A bargain at $200.00. As well as the beautiful original sunflower watercolor painting (above) by well-known local artist Jerry Wright.The crawfish were delicious! Messy to eat, for sure, but delicious.

PT Progress

Weeks ago in Texas Children's Hospital, once Eric passed a certain threshold and started getting better, he had the doctors' eyes popping with his progress. He starting recovering much quicker than anyone imagined. And now Eric continues to impress, this time his wide-eyed physical therapist, Kim. She's positively giddy when she tells me how well Eric is doing. He's only been to four PT/OT sessions, a little over a week, and he's already surpassed Kim's three-week goals. So I'm proud of Eric, and praising God and praying for continued healing and recovery. Eric finally slept better last night also. I hope it's the beginning of a trend. Post-PT Sonic snack . . . a cheeseburger with mustard, pickles and onions, and a watermelon slush.

Ready for Summer

Here's Eric sporting his new summer haircut. Cooler, and way easier to wash.

Eric started back with schooling today. His homebound social studies teacher came by. They only have this week and next, but what the heck. I understand his 9th grade English teacher has a summer reading list that should keep him occupied.

Therapy

Eric made great strides in PT/OT today. He had fun playing games with Mika, his occupational therapist. In PT, Kim was amazed at his new-found endurance. He walked on the treadmill today for 17 minutes (in two stints) and pedaled 10 minutes on the recumbant bike. All the while keeping his heart rate lower and his blood oxygen level higher. Eric's getting stronger every day.

Post-PT Sonic snack . . . chicken club toaster AND fries with a strawberry grape Dr. Pepper.

Home

My poet friend Shirley sent this poem in response to my post yesterday.

Home

Home is the place your heart resides
Home is the place that you decide
Home is the womb that holds the soul
Home is the place where one is whole

by Lisa Emry

Yep, that's what I was trying to say.

Eric and I had a meeting at his school today to initiate homebound education. He's missed school, not just as in absence, but he's missed being there, the learning environment, the comradery of friends. So even though there's only a couple weeks of school left, Eric is eager to get back to the books. We start Thursday.

After that meeting, I took Eric to our gym for a little exercise. His physical therapist asked him to try to walk for 5 minutes on the days he's not at the therapy center. So we walked around the indoor track. Eight minutes. And did some work with hand weights. He's working hard to get better. And in this past week since we've been home, he's gained five pounds.

Little Things

Here's a happy shot of Eric taken at church yesterday by the pastor's wife with her cell phone.

I find it interesting how the past three months have taught me to value little things in life that prior to that I probably took for granted. Not surprisingly, most of these things revolve around home. Things like tucking my children into their own beds. Riding my bike. Grocery shopping and running into friends in the store. Relatively quiet nights. Watering plants. Sitting down together as a family for meals. Petting my cats. Showering in my own bathroom, doing laundry in my own utility room, sitting on my own couch, walking to my mailbox at the end of my driveway. You get the picture. I've learned that the security and sanctuary of home isn't necessarily a given, that circumstance and necessity (illnesses, natural disasters, life obligations, etc.) can take home away, either temporarily or permanently. After the past three months, I don't see things the same way. I'm more appreciative and thankful for the seemingly mundane. And so glad to be home.

Eric's post-PT Sonic snack . . . A chili cheese coney with jalapenos and a grape limeade.

Happy Mother's Day!

Today is surely one of my most joyous Mother's Days ever. To have my son Eric home from the hospital and the four us together again is by far the best gift. We went to church together this morning for the first time in three months, and that was SO special. Our church family welcomed Eric back with love, hugs, handshakes, smiles, and applause.

Ever since the boys were infants, I've had a simple Mother's Day tradition of getting my photo taken with Eric and Andrew. When they were ten, I put together a collage of all ten Mother's Days. Fun to see how they've grown. The photo below was taken this morning at church. We're all squinting in the bright sunlight, but we're happy.

Working Out

I went to my gym, Dynamic Dimensions, here in Moss Bluff, this morning for the first time in over three months. Prior to Eric's illness, I was there most every day. So to say I missed it is an understatement. I pushed through Step class, a challenging but fun aerobic workout. My gym buddy/instructor Karen was there with GREAT BIG HUGS! Yay! Felt so good to exercise again, heart pounding in my chest, sweating profusely, legs screaming. Haven't felt that exhilaration, that high, in way too long.

You would think now that we're all home and Eric is recovering that we'd all be sleeping better, right? Wrong. Sleep, or the lack of it, remains a big issue for all of us. Except Andrew. Eric's ventilator alarm goes off every time he coughs or the tubing becomes disconnected. His NG feeding pump beeps when we need to add more food. Once he wakes up, he coughs more. When he coughs, he needs to be suctioned. And then it's difficult to go back to sleep. I think maybe we just need to work out a few kinks, tweak our set-up a bit, hire the sandman, then hopefully we'll all sleep better.

Have a good night.

TGIF

Good day today. Eric's making great progress with PT/OT. He's eating somewhat better and gained another pound. Eric's Sonic snack today . . . bacon CroisSonic and a grape cream slush. After PT, we went to the DMV to get a handicapped parking tag. Never thought I'd be hanging one of those from my rear view mirror. Fortunately, it's a "temporary" tag.

French Toast

Quiet day at home for Eric and I. He's sitting out on the back porch reading a book right now. Good news . . . he's eating better since we came home, and he gained 3 pounds since yesterday! After PT yesterday, he asked if we could go to Sonic. I said sure, as I had planned on taking him there anyway. He asked if I'd split a burger with him. I said sure, as I didn't think he could eat a whole one. But after he finished his half, and I had already downed mine, he said he thought he could have eaten the whole thing. Yeah! Next time.

Here's what Andrew and I had for breakfast last Sunday at the Sellar's house. Darlene is practicing for later when she and Lacy own a B & B. This recipe is delicious. I'll have to make some for Eric and he'll add on another pound or two.

Darlene's Baked French Toast

Melt 1 stick butter
Add 1 c. brown sugar
2 T corn syrup.

Mix and boil 2 minutes, stirring.
Pour into greased 9 X 11 pan.
Top mixture with slices of French bread.

Mix 5 eggs with 1 1/2 c. milk.
Pour over bread.
Sprinkle with cinnamon.
Cover and refrigerate overnight.

Bake 45 minutes at 350 degrees.

Settling Back In

Yes, it's great to be home. And now I begin the arduous task of reclaiming my home. Things aren't where they used to be. And there are piles of stuff everywhere, stacks of papers and mail waiting to be sorted, filed, organized, put away, or tossed. I keep asking Bob things like, Where did this come from? Where does this go? What do we do with this? Do we need that? Where is . . . ? And his answer is always the same. "I don't know." Fortunately, I realize I don't have to get it all together immediately. I'll tackle one little corner at a time.

Eric's home care nurse came today. She'll be here every morning on weekdays. Eric had a somewhat tough morning, lots of coughing, secretions, fatigue. But we got through and headed out to PT at 12:30. Eric rallied and had a great session. He said he felt better after the workout. Maybe he finally woke up. During PT, Dr. Ben Thompson took time to drive over and see Eric and say Hi. Watching Eric walk, he said, smiling, "I'm impressed."

We all are.

Cinco De Mayo

Happy Cinco De Mayo! May 5th. Hispanics all over Houston and beyond are celebrating Mexico's Independence Day with parties and parades. Eric and I are celebrating an "independence day" of our own. We are home. Praise God! Three months to the day since Eric got sick. Twelve weeks to the day that he was hospitalized. It's been a long trying journey, but now we're home and entering a new phase of recovery, a brighter, more optimistic phase. Eric will likely have the trach and be on the vent at night for a number more months (I'm hoping not more than a couple.) Yesterday he was off the vent on his trach mask for twelve straight hours, so I doubt he'll need the vent much if at all during the day. Rehab, starting tomorrow, will be intense throughout the summer. And we fully expect Eric to start high school mid-August. He will get well, though his lungs may be years in the healing process.

I can't tell you the joy of returning home after 3 months. I've missed being here and being together, the four of us, so very much. After this, I'll never take "home," or the importance of a family being together, for granted again.

On a housekeeping note, thank so much to all who brought food to our house while we were hospitalized in Lake Charles. We still have all your dishes, pans, and plastic containers. Being that Bob and I weren't home during that time, we have no idea who these things belong to. So if you brought something to our house in a dish you would like back, please stop by for a visit and pick up your containers.

Thanks again to all of you for your prayers and support. We appreciate your continued prayers as Eric moves on in his recovery.

Discharge Imminent

A better day today. Eric woke up feeling well, but before too long, he had some stomach discomfort. This lasted only a couple hours, no vomiting. And he's been fine the rest of the day. He ate a little lunch. A little dinner. And we'll see how he tolerates his tube feedings this evening and overnight. If there's no more nausea, we're going home tomorrow! It's now almost 6:30 PM, and Eric has been on his trach mask (off the vent) since 9:00 this morning. His venous blood gas this AM was "textbook," the pulmonologist said; pH 7.45, PCO2 45. His SpO2 remains in the high 90s on 27% O2.

There was no prospect of going home until mom demonstrated she's capable of the dreaded trach change. Every 30 days, the old trach comes out and a new one goes in. Manufacturer's recommendations. But it's extremely uncomfortable. It hurts. Eric's stoma bled and he coughed a lot for several hours after the procedure. Very sad. But despite the trauma, he managed to get a little PT in this afternoon. Then Ms. DeFelice came for a visit, on her way back to Lake Charles after a trip to Pa. Also on the pre-discharge agenda . . . I have to take a CPR class 8:00 AM tomorrow morning. This could have happened anytime during the past month. Seems to have been overlooked. Anyway, we're hoping to pile in the ambulance around 10:00.

Pray for a comfortable no-nausea night!

Que Sera, Sera

Eric's having another pukey day. I guess he started throwing up around 8:00 AM. Andrew and I had stayed at the Sellars again and went to church. I forgot to take my cell phone into church with me. During church, Eric asked for me. Bob tried to call me many times and texted once, "Come here now," but I didn't get the message till after church. I feel so terrible, not being there when he needed me. He's been vomiting here and there throughout the day, and in between he's non-stop nauseated. Meanwhile, he's lost two days of PT and countless calories. They're doing a cortisol stress test to determine if there's a problem with his steroids. They're checking his pancreas. Changing his NG formula. They consulted the GI docs, who had several more recommendations, starting with a x-ray. No one has said for sure, but I have an ominous feeling all this is going to delay our Tuesday discharge.

I had a memory this morning, as I started humming a familiar tune. When I was in 6th grade, an elementary friend Michelle and I sang Que Sera Sera in the school talent show. I don't know why we chose that song, or even why we wanted to sing in the talent show, but there we were, singing "Que sera, sera, whatever will be, will be. The future's not ours to see, que sera, sera." They were likely the first spanish words she and I ever learned.

It's so true, isn't it? We have so little control over our future. Life comes at us, and we have no choice but to deal with it. Anything can happen, unexpectedly, and diverts the course of our lives in other directions. Due to the air pockets in his lungs, Eric, our first chair trumpeter not only in his middle school band but the district-wide honor band as well, has been told he shouldn't play this instrument. He's been told he shouldn't fly, which limits his ability to travel. In less life-altering ways, he's also been told not to scuba dive or climb Mt. Everest.

So many people say things to me like, "I don't know how you do it," "You're so strong," "You've been such an inspiration," etc. I'm touched and honored to hear these things, but honestly, I haven't done anything that each of you wouldn't also do. Or that many of you have already done in your lifetimes. Everyone's life has trials. We do what we have to do. And isn't it easier when we're buoyed by the support and prayers of others, and the tangible help of God Himself?

Unrelated to all this, I love a quote by Rev. Mark Cooper, co-pastor at Christ Church Presbyterian (http://www.ccpres.org/). He said this morning that, as Christians, we shouldn't say "Look what the world has come to." But rather, "Look what has come into the world."

Houston Zoo

Bob and Andrew came for the weekend late last evening. Drew and I stayed at the Sellars last night. This afternoon, he and I went to Hermann Park, to the Houston Zoo. Saw lots of birds, monkeys, a couple lions. It's a pretty zoo, lots of vegetation and flowers, shade.

Eric had a rough day again today, starting at 6:00 AM when he vomited. Spent most of the rest of the day quite nauseated, couldn't even tolerate any NG formula, let alone food. Couldn't do PT. But he seems to be feeling somewhat better this evening. He took several bites of a grilled cheese sandwich and corn. We'll see how he does tonight. We're not sure if he's not tolerating the formula or if he might have a stress ulcer, which wouldn't be surprising after all these months in the hospital. But I hope they figure it out before TUESDAY.

Germ Free Zone

At this point, with our long-awaited discharge only four days away, I'm totally paranoid about germs. I've declared Eric's room a germ free zone. I don't hesitate to insist that everyone wash their hands before entering. I'd put Eric in reverse isolation, if I could. The last thing we need is for Eric to get an infection of any kind. We want to go home! The hospital here is on high alert, with the recent death and all the hype about swine flu. I've heard the ER is a madhouse. Parents with children with any little cough or fever are pouring in to rule out this latest news sensation. They're talking of setting up triage in a parking lot outside the ER, if need be. A number of kids have been admitted to this floor with isolation signs on the doors, hence my paranoia. Staff members are flocking to employee health to get their personal high filter masks fitted. I want to envelope Eric in a giant bubble. Remember that famous unfortunate immuno-compromised boy who lived in a bubble back in the 70s? That was right here at TCH. Anyway, we need protection for four more days. Then we're HOME free.