Swine Flu

Eric's having a better day today. This morning, he said his stomach was okay, but he still wouldn't eat breakfast. Said his throat hurt. He walked two laps with PT. Played Chinese Checkers and Connect Four with our visitor Mandy. Then ate a few bites of mashed potatoes, peaches, salad, and half a Reese's PB egg for lunch. He was off the vent for three hours this morning and talking with his Passy-Muir valve, getting used to it. They decreased his FiO2, the amount of oxygen, to .27, and his O2 saturation remains 98-100%.

If you've watched the news or read the newspaper, you know the first US death from swine flu happened right here at Texas Children's Hospital. That child was on the 3rd floor in ICU. We're on the 7th floor, hopefully far enough away. I've been saying all along, hospitals are dangerous places. I can't wait to get Eric home. Anticipated discharge date . . . Tuesday!

Under the Weather

"I just don't feel good," Eric says. Yesterday, he vomited twice, both times after treatments of a newly ordered med to loosen and thin secretions, Mucomyst, was administered. So we discontinued that right quick. But this morning, he still complained of stomach pain and after lunch, he threw up again. So we're not sure what's going on there, but they drew some blood and will look at his stool to run a few tests and try to find out. Meanwhile, he's eating even LESS and vomiting his tube feedings. Despite that, they weighed him this morning and he gained 1.5 pounds in the past two days, so that's good. During the episode today, he vomited out his NG tube and will have to have another one put in. He dreads that. They had to stick him, twice, for bloodwork, because they pulled his PIC line yesterday. More pain. Just not having a good couple days.

Besides that, Eric's doing okay. His lungs are continuing to heal, but he does have a lot of secretions. Respiratory brought in a "home vent," exactly like the one we'll be using at home, so we all can get used to it. That's a sure sign we're going home soon.

PS Post PT

It would seem I posted prematurely this afternoon, but I thought I had nothing left to say. That was prior to physical therapy. This morning, Eric walked the full lap around the unit, and we thought that was pretty impressive. But this afternoon, he walked around twice!

Surprise Visitor

Bob showed up this morning. Surprise! But not really because Mom called before he came and told me he was coming. He simply missed Eric and me SO much, he couldn't stay away. No, seriously, he couldn't sleep last night because he needed to talk to the doctors himself, needed to see the x-rays, etc. Either way, it was a nice visit. Eric enjoyed spending time with his dad and I got to take a long shower and go for a longer walk. Hot in Houston, already! Not even May yet.

Our friend Lee Ann brought over homemade macaroni and cheese for lunch. It was my own recipe, but she made it better! Awesome. And a new friend, Mandy, visited and played chess with Eric.

Prior to today, one of the biggest sticking points to our discharge was finding a home care company in or near Lake Charles who'd give us a ventilator. But now we've got two companies who are willing. One in Beaumont, too far really to be practical. And one in Lake Charles. Thanks, Dr. Thompson! Till all the details of discharge fall into place, we're hoping to be home sometime mid-late next week! Praise God! An end in sight.

Repeat Chest X-Ray

Just to review, last week, Eric had a couple chest x-rays and a CT scan which showed what the docs thought was a hydro-pneumonthorax (fluid and air in a pocket in the space alongside the lung.) They weren't sure what they wanted to do with this, if anything, since he wasn't having any problems clinically. They decided they'd order a follow-up x-ray for today, and see if it increased in size, decreased, or stayed the same. Then they'd decide what to do, if anything. Anyway, the x-ray today indicates that there has been no change. Which is excellent. They're not going to do anything about it, except maybe watch it. They are also saying that it's possible that it's not a pneumothorax but possibly another bleb (a pocket of useless air within the lung). Maybe over time it will be absorbed and just go away. Or maybe he can live with it. In any case, we continue with rigorous physical therapy and hope to go home in a week or so.

Christ Church Presbyterian

Don't you love the way God puts people in your life at just the right time when you need them? Never has this been so evident as it has during our time here in Houston. A friend, Susan, from our church in Pittsburgh has a cousin, Debbie, who lives not far from TCH. When we transferred here from Lake Charles, Susan alerted Debbie, who informed her pastor, and both came to the hospital almost immediately to visit us. Not only did the pastor and his wife, (Lacy and Darlene Sellars) come visit, they gave us the keys to their house along with detailed directions, phone numbers, email addresses, and told us to come any time. (FYI, for my northern readers, here in the south, Lacy is a man's name.) Lacy told Lee Ann, a woman who attends his church and has a long history and connections here at TCH, about us, and she came right over as well. Lee Ann has been a wonderful sounding board. She knows and understands everything we're going through. As more and more people in Lacy's congregation heard Eric's story, they, too, began following the blog and praying for him. After Bob went back to Lake Charles last weekend, Lee Ann and Lacy asked for volunteers and Lee Ann put together a schedule and has someone lined up to come visit Eric and I most every day. It's simply amazing, how these folks seemed to come out of nowhere and have loved and embraced us, taken us into their family. Mom and I attended this church on Easter Sunday and again today. It's wonderful to have a place to worship while we're away from home, where we don't feel like total strangers.

Bob and Mom have been here since Friday evening for the weekend. Andrew was in Orlando on the band trip this weekend. The past two weekends, some combination of Mom, Bob, Andrew and myself have stayed at the Sellars, done laundry, had much needed restful nights' sleep, and been served fabulous breakfasts. When Lacy and Darlene retire from ministry, they should open a B & B. My whole family is most grateful for their incredible hospitality.

So I just want to thank Susan for contacting her cousin. And a huge thank you to the Sellars and Christ Church Presbyterian (www.ccpres.org) for their ongoing prayers and loving support for my family during this difficult time. You all have made this trial a bit easier.

Eric continues to improve, doing well. It's been a quiet day, watching several movies. We're getting bored. That's a sure sign it's time to go home.

Eric on a Saturday

Mood: Quiet, relaxed
On The TV: Chowder (a really weird cartoon)
Reading: Twilight
Listening to: Led Zepplin
Playing: Nanosauer, on his computer
Drinking: Cherry Picker from Smoothie King
Eating: not much yet, mostly fruit, sometimes mashed potatoes, here and there other stuff
PT/OT walk: all the way around the "track," 1/10 of a mile, near double from yesterday
Vent Settings: PSV 5, CPAP 5, FiO2 .30, with occasional stints off the vent on a trach mask

Radiology Lesson

For a long time, Eric has wanted to see his x-rays. He finally got his wish this morning when Dr. Vece, the pulmonary resident, took a lot of time and showed and explained to Eric both his x-rays and CT scans from when Eric first got here and this past week. So Eric saw not only the issues of his lung injury, but also the degree of improvement his lungs have made. We've been telling him how much he's getting better, but a picture is worth a thousand words.

This week has gone by so fast, both Eric and I agree. We can't believe it's Friday already and Bob and Mom are coming back tonight for the weekend. When we think about how quickly this week has gone by, we know the next two will also go fast and we hope to be home before we know it.

Sleep, Interrupted

I can't say Eric and I didn't sleep last night, but we sure would have slept better if that daggone heart rate monitor would stop alarming. Eric's heart rate was fine, the monitor kept losing the signal. Nevertheless, we've had a good day. Eric has been comfortable, really no shortness of breath, except during PT maybe, and much less coughing today.

The CT scan yesterday shows a sizeable hydro-pneumothorax, but no one really knows what they want to do with it yet. Clinically, Eric is doing great, very stable. The docs aren't in a hurry to try to fix it, if indeed it needs to be fixed at all. They say they'll just watch it for awhile. If it doesn't worsen, they might leave it alone. Pneumo aside, Eric's lungs look remarkably improved compared to the last CT a month ago. More aeration, less consolidation, less cystic/blebby airspaces.

One of our new friends, Pam, came to visit today. A local church, Christ Church Presbyterian, has ties to our church in Pittsburgh, Hiland Presbyterian, and so Christ Church has adopted us, so to speak, which is so nice, cause we know so few people here in Houston. They have a group of volunteers and have put together a schedule so that someone comes to visit most every day. Which is great, cause, since Bob is back in Lake Charles, it gives me a chance to take a shower or get out of the room, go outside or something if I feel like it. Eric and Pam played Scrabble and got to know each other a bit.

As usual, Eric outdid himself on his morning walk with PT/OT, and then walked even farther in the afternoon. The plan is for us to go home in a couple weeks. Can't wait.

In-House Hair Salon

Eric got a haircut today. He was overdue for a cut back in February when he got sick, so 10 weeks later, it was really too long. The above photos show his shampoo, cut, and the final product. Sorry the shots are a little dark and blurry. Maybe I needed to use the flash. Hmm . . . I'll have to have Bob or Eric show me how that works. Pittsburgh readers, note the Pirate shirt.

We also took a trip to CT scan this afternoon. That's his fourth CT in 10 weeks. The docs want to evaluate a bit of a hydro-pneumothorax in the right upper lobe. At most, he might get a "pigtail" (a smallish chest tube, not connected to suction, just a drain) or they may decide to see if it resolves itself, depending on what the CT shows.

Overall, a good day. Eric has had very little shortness of breath today. Neither of us slept well last night. Don't know about him, but for me, it was one of those nights where I couldn't find the switch to turn off the thoughts.

Sunshine

PT/OT took Eric on a field trip today . . . OUTSIDE! We sat outside for a good 45 minutes, feeling the sun on our cheeks and the breeze in our hair, for Eric, the first time in ten weeks. What could be more therapeutic? Look at that smile!

Eric and I are fairing well, just the two of us. Last night, we stayed up late playing Scrabble. We almost finished, and it was pretty much a tie, when around 11:00, Eric declared it was bedtime. He's slept well for the past two nights! Praise God for that. And he was awesome with PT/OT today. He walked a great distance (that's relative, of course, maybe 125 feet) in both AM and PM sessions.

Life, Interrupted

I look out the window and see people scurrying on the street, off to wherever they're going, and marvel at the simplicity of living day to day. Activities of daily living . . . something else we usually take for granted. Eric and I had a conversation the other evening, as he perused the Sam Houston High School Course Guide for 2009-2010. It went something like this.

"Eric, I can't believe you and Andrew will be in high school next year!"
He nodded his head.
"Of course, if we were still in Pa., you'd only be in your last year of junior high."
Nod.
"You'd be the big fish instead of the little fish.
Nod.
"This year was your year to be the big fish, in middle school." Sigh. "I'm so sorry you've missed so much this year."
Nod. Head shake. Shoulder shrug. Then Eric mouthed, "What can you do?"

His ability to accept his circumstances, to deal with the present, to not be angry, never ceases to amaze me.

We spoke with the pulmonologist at length today. We're tossing around the idea of possibly going to a rehab facility. But we also talked about the possibility of going home and doing rehab as an outpatient in Lake Charles. There's so much to look into, to find out if we'd have adequate resources in Lake Charles. Two weeks . . . just having a possible end point gives us hope.

Deja Vu

I had a deja vu moment this afternoon. I recalled when the boys were just newborns. Bob had taken a week off work after they came home from the hospital. And on the morning he had to go back to work, he kissed me goodbye, then he tiptoed into the nursery and said goodbye to his sleeping sons. I laid in bed and bawled (post-partum women are so emotional anyway), thinking how hard it must have been for Bob to leave them. I had those same emotions today, when Bob said goodbye to Eric, still his baby, before heading to Lake Charles to start back to work tomorrow. Yes, I cried. Please pray for Bob. This time, being away from Eric, is going to be incredibly difficult for him. The photo above was taken last December on Bob's birthday.

And please continue to pray for Eric. He's having a better day today, compared to yesterday anyway. But PT was really tough for him this morning. (He only gets PT once on weekend days) I guess we all have days when we feel stronger and others when we're just not quite as energetic. Specifically, he needs prayers for better sleep, less shortness of breath, and weight gain.

Thanks for checking in!

Missing Home

Eric slept in late today. Sort of. Till around 10:00. And it was a perfect day to sleep in. A dreary dark rainy Saturday. He'd say he wasn't sleeping, but he sure looked like he was sleeping. He said he didn't sleep much if at all between 3-7 AM. He wakes up every morning saying he's tired. Sleep is a big problem for Eric. And he's not quite as comfortable today, with more coughing and secretions, shortness of breath. Good days and not so good days.

Have you ever been away from home for an extended period? I have some friends who travel for work, sometimes up to six weeks at a time, and I know they understand the insanity being far from home base for weeks on end can bring. Eric's been hospitalized for ten weeks now, five weeks in Lake Charles, five weeks here at TCH. And we're homesick. Eric and I want to go home. I get teary-eyed just thinking about it. The doctors have started talking about transferring Eric to a rehab facility, but we don't yet know where or when. Probably it will be here in Houston since there are none suitable in LC. I remember a phone conversation with a friend not long after Eric was admitted in Lake Charles. I knew Eric was critical and we were facing a lengthy stay. My friend asked how long I thought Eric would be in the hospital. I said, "I don't know, but probably a month?" And I thought that would be an awful long time. Little did I know . . .

Rainy Friday

It's been a quiet day for Eric, not too many doctors strolling in. He played dominos and a Star Wars Playstation video game with Andrew. His Grandpa Dilmore bought him his own MacBook computer, which he just got last night, and Eric spends a lot of time on that. It seems to relax him. He's comfortable today, very stable, heart rate and respiratory rate has been lower, oxygen saturation higher, less cough and shortness of breath. In morning PT/OT, he stood at the sink to brush his teeth (instead of sitting in bed) and played beach ball standing instead of sitting. For the afternoon session, he walked again, farther than yesterday. 100 feet (50 X 2). Not bad for his second day of ambulation. Each day, Becky and Julie push him a bit more, and Eric is always up to the challenge.

It's storming like crazy here right now, the sky dark as dusk in winter, lit up by occasional flashes of lightening, thunder echoing through the canyon-like city streets, sheets of rain battering the buildings. Bob's sister Sue was flying here from Dallas today, and she'd been stuck on the tarmac for hours due to weather. We just got a text that her flight was cancelled.

He Walks!

The big news today is that Eric got out of his room and walked in the hall with PT! Both in the morning and afternoon. He was off the ventilator on a trach mask for about an hour and a half each time. The whole hospital seems to be abuzz about Eric's progress. He's always been an overachiever, and it's paying off now.

Trivia question . . . how many fish tanks are in Texas Children's Hospital? Surely someone must know. I'm going to guess about one hundred.

He Talks

Speech therapy came by again with Eric's Passy-Muir valve. He talked quite out loud today. Such a simple pleasure, hearing my son's voice. The issue with the valve is that the cuff on the trach tube has to be deflated when using the valve, and Eric struggles more with the large volume of mucus from his lungs when the cuff is deflated. So he can't use the valve for very long periods. PT/OT went well this afternoon. The morning session was difficult because the pharmacy department here at TCH is incompetent. Eric is supposed to get a little lidocaine down his trach tube to suppress his cough some during PT, but they didn't have it on the floor for Eric this AM. And you'd think we were asking them to move a mountain to get some. Such a simple thing. Pharmacy is infuriating at this place. We've had issues with them from the beginning. In their defense, Jeff, the pharmacist in ICU, has been very helpful in making sure the bactrim reaction has been reported to all the proper places.

Andrew and I went swimming with my new friend Lee Ann and her two kids this afternoon. A little chilly, but the hot tub was great.

Eric had a busy day today! He had a good time with PT/OT this AM, as you can see from the photo below. In addition to playing ball, Eric stood a couple times for several seconds, and he even took a few steps. We had a few visitors. And the speech therapist came today for a speaking valve trial. He barely was able to whisper, but the therapist said he did great! That his vocal cords are working well. And it will get better each day. Eric is improving daily, but lack of sleep, shortness of breath, and coughing, and lack of appetite are still big issues. Thanks so much for your continued prayers and concerns.

I got so many positive comments on the nature photos yesterday, I included a few more today.

Sorry the post is a little late today. Andrew and I spent a couple hours at Hermann Park this afternoon. Beautiful day! I desperately want to take Eric OUTSIDE, but until I can, I took a lot of nature photos for him to look at. Below is a sampling.

Eric continues to improve, overall, but has good hours and difficult hours throughout the day. It's not easy. He's working hard with PT, pushes through the pain. He struggles with long periods of shortness of breath and coughing spells. The doctors all tell him he's doing great. All his numbers look good, anyway. But the truth is, Eric just doesn't feel very well most of the time. He continues to not sleep well and his appetite is poor. Hopefully all this will change soon.

Easter Sunday

I vacillated about going to church this morning. At first I thought I'd want to. Then I thought I wouldn't. I worried that it would all be too emotional for me. I've got so many emotions right below the surface, I thought I'd just walk in the doors and start crying. And of course it depended on how Eric was doing this morning. But he had a good night, so I decided Mom, Andrew, and I would go to church. I decided I needed to see the Easter lilies, smell the hyacinths, sing Allelulias, hear the choir and blare of the brass, and listen once again to the resurrection story, new life. We went to Christ Church Presbyterian, a local church that has "adopted" us, so to speak. The pastor and several members have visited and more have offered to come sit with Eric. Anyway, we arrived late . . . I thought the service started at 10:30, but it was 10:15, and we slipped unnoticed into a rear pew. No one knew we were there, yet at prayer time, they prayed for Eric.

It poured rain earlier today, but now the sun is shining. It's a beautiful day. Wishing you all a blessed Easter.

Do Easter photos get any cuter than this? Here's my very photogenic niece and nephew, Alex and Emmitt, from Pittsburgh. I miss them, and all my nieces, so much.

Easter Morning

Dear Lord, as Easter dawns over this Texas city, I have so many blessings to thank you for. Thank you for bringing us to TCH, that Eric is slowly improving, healing. Thank you that we're out of ICU. Thank you that the leaks in his lungs have closed, the holes healed, the chest tubes removed. Thank you that the nutrition he's receiving is nourishing and building up his body, strengthening Eric. Thank you that, if not quite sleeping, Eric is resting comfortably right now. Thank you for the doctors and nurses who are working so hard to help Eric get well. Thank you that Eric is able to somewhat maintain his sense of humor, his smile, his laugh, despite all he's been through. Thank you that Andrew and Mom are able to visit us this week. Thank you for the good days, and for helping us through the rough ones.

I ask you, Lord, for continued healing and strengthening for Eric, for protection from all the dangers within a hospital. Guard Eric from germs, infections, careless mistakes. Safeguard his mind by warding off depression, anxiety, and all things negative. Lord, assign an angel to sit here with us, to watch over Eric every minute until we walk out these doors and drive our son home.

In Jesus name, Amen

So-So Saturday

Not the worst day ever, but not the best. Eric says he didn't sleep well again last night. While overall, he's improving, he still struggles so much. He has so many secretions and needs to be suctioned often. He has a really difficult time with trach care because it makes him cough and gag so much. Today, he has no motivation to do anything but watch cartoons. When PT/OT came, he obliged and sat in the chair for awhile, but it was tough for him. He got really short of breath. He doesn't want to eat or drink anything, and we're trying to progress him to solid food. He'll eat pureed fruit, applesauce, yogurt, juices, but only a few bites or drinks of each. This is all new to his stomach. He's been getting NG tube feedings all along, but he hadn't eaten real food in a month.

Lately, I find myself asking "Why?" Why did this have to happen, why does he have to suffer like this, why is it taking so long for him to get better? When this little 3-letter word creeps into my head, I try to remember that there are over 400 beds in this hospital, all filled with kids who have parents who are likely asking the same question. We're not alone.

To all my friends who smoke, come sit with Eric for a day and it will be obvious. You won't want to continue in a habit that likely will cause you to be chronically short of breath. It's a miserable way to live. Eric never had a choice. You do.

Better Friday

Fun day today. Eric's brother Andrew, Grandma Rusnack (my mom) and his math teacher, Ms. DeFelice came to visit. When they arrived, Eric was in the middle of PT/OT and he sat out of bed in a chair for 50 minutes. During that time, he exercised, ate yogurt, and beat Andrew at a game of checkers. At afternoon OT/PT, again he sat in the chair and they played with a beachball. Then they started to play Connect Four, but Eric tuckered out quicker for the afternoon session. He'll beat the therapist next time.

Good Thursday

I'm impressed with all the bicyclists here in Houston. It seems many people ride their bikes to work or to tool around town. I miss bike riding. Anyone who knows me knows I miss exercising in general. My sister knows this and looked into trying to find me a place to work out in or near the hospital. The best she could do was find someone who gave me a 3-day pass to a nearby LA Fitness center, for which I am very grateful, and hope I can use soon. What types of exercise are you all doing?

Speaking of "grateful," I just read in the paper today that The Dead are embarking on a 17-city tour. Don't suppose there's any chance they might be headed to Lake Charles? But maybe Houston, Baton Rouge, or New Orleans. I'll have to check into it.

Eric had a day today as good as yesterday was bad. The pulmonologist said, "that's how it is, good days and bad days," with no other explanation. I like the good days way better. With occupational therapy, he drank some orange juice, a few sips of milk, several bites of canned peaches, and a crumb of a pancake. Only the peaches were palatable to him. With PT, Eric got out of bed and sat in a chair for about 10 minutes. He's doing great! Today.

Wednesday Add-On

Just a note to let you know, Eric is doing much better this evening than most of the day. No more pain, and his HR and RR have come down somewhat. He decided he wanted OT to come after all, and he had small amounts of ice chips, water, lemonade, and half a grape popsicle. Right now, Eric is sitting up tall, watching Bob set up a Play Station game for the two of them to play. So, here's to a better tomorrow.

Taking a Step Backwards

Sorry everyone. I know you all love those postive good news posts. We do too. Today just hasn't been a good day. Back on the roller coaster. I should have recognized the omen when he woke up sullen, hungry, thirsty, and not wanting to do physical therapy. PT came early AM, and despite his reluctance, Eric STOOD bedside, on his feet, for the first time in a month, for 30 seconds. Such a challenge, his legs are SO weak. And he did his leg exercises too. OT worked his arms, and promised to come back around 1:00 to try some more drinking and eating. But after PT, Eric soon complained of intense (9 out of 10 on the pain scale) pain just under his breastbone. He was also increasingly short of breath. So began the quest to find out the cause. Was it his heart? Pneumothorax? Pulmonary embolism? Anxiety? They did a chest x-ray, EKG, ABG, everything looked fine. They guessed it was some kind of rib/intercostal/inflammation type of pain. They gave him some pain medication, and Eric fell asleep. but while he slept, his heart rate rose from an already high 130s up to 160s. He spiked a temp. He threw up several times. So now they suspect he's got an infection? Or drug withdrawl? They sent blood and sputum cultures, and urine, next time he has to pee. And now he's back on antibiotics and steroids, both of which he just got off of a few days ago. PT, OT, and CPAP trials are on hold till he feels better. By mid-afternoon, the sternum pain was gone, like phantom. Two steps forward, one step back. We'll still get there, just slower.

Life in PCU

Eric, Bob, and I are "living large," as our favorite ICU nurse Randy loves to say. Things are going well in PCU. Eric slept better last night than in a long time, and Bob and I enjoyed not having to split the night into two shifts. Occupational therapy came by this morning bearing gifts of applesauce, chocolate milk, and the long awaited lemonade. Eric did great with the swallowing, trying a little of each. It upset his stomach, but he hasn't had real food in nearly a month. So that will take time.

The pulmonary doctors, who are formally following Eric now, came by, still smiling. They want to slowly wean the ventilator until we can do trach mask trials. His current vent settings are CPAP 5, PSV 8, FiO2 .30 during the day. SIMV 8, pressure limit 16, 10/5 PSV/CPAP at night.

Physical therapy came. Eric exercised his limbs and sat on the edge of the bed for five minutes. Then a psychologist came. But by that time, Eric was napping. Maybe she'll talk to him tomorrow.

A new friend, Lee Ann, kindly took me to Target today. Now that we have more storage in our new room and can truly move in, I bought some healthy food; milk, cereal, yogurt, cheese sticks, strawberries. And I bought Eric some button down shirts and casual shorts so he can get dressed!

Since Bob will be heading back to work before too long, he started his trach care training today, learning how to suction and how to clean the trach. We need to learn all this in the likely event that Eric will come home with the trach and possibly the ventilator. But in my usual optimistic fashion, I'm hoping he continues to recover quickly and returns home with neither.

Welcome to PCU!

Yeah! We busted out of ICU today and moved into the Progressive Care Unit, Room 25. It's a nice room, maybe not all that different for Eric, but for Bob and I, there's a nice couch that pulls out into a bed we can both sleep on. There's a bathroom/shower right here in the room, no more trekking out of the waiting room, down the hall, and into the public restroom. No more Ronald McDonald house, either, that's for ICU parents only. The nursing care here won't be quite as intense, and there will hopefully be more emphasis on physical therapy/rehab/nutrition/ventilator weaning. We're feeling very hopeful and optimistic about this new phase of Eric's recovery.

One major disappointment . . . Eric wanted only one thing today. Lemonade. During morning rounds, Dr. Kennedy said yes, but occupational therapy had to do it with him. I guess there's some learning involved with swallowing with a trach. Anyway, OT never showed up. The lemonade sits on the window sill, waiting. Hopefully tomorrow.

Moving Day?

I had planned to wait until it was definite, till we were there so I could tell you about it, but Eric wants me to post a blog now to let you all know that, after eight full weeks, we're (hopefully) busting out of ICU today! (Contingent upon room availability in the step down unit, called PCU, short for progressive care unit) I'll post later to confirm and elaborate.

ICU Impatience

Quiet day. Long day. Tired day. Eric's still doing well physically, but he's had insomnia for two or three days now, even more, and he's completely frustrated, not to mention fatigued. He just can't sleep. The trach ties around his neck are too tight, but he has to wait till tomorrow when he gets his new trach for them to change the ties. Despite a long foot and hand massage from Mom, winning a game of Yahtzee with Drew and Dad, SpongeBob on TV, jazz CDs, and his favorite nurse Randy on duty, Eric is not happy today. He wants to be out of the bed, out of ICU, out of the hospital. He wants to sit in the sunshine awhile, feel a breeze, eat something besides ice chips, say something. He wants to sleep. As patient as my son is, he's reaching the end of his IV tubing. We're getting close to these things, but Eric is having trouble seeing beyond the frustration of here and now. He's still being incredibly patient and cooperative, but I can see and sense the underlying depression. Lately, we're getting excited about the slightest smile on Eric's face. Like when he rolled his second "Yahtzee" in one game.

One Less Tube

Yesterday afternoon, Sue and Lisa sat with Eric (thanks!) while Bob and I took a break. It's been two months since we've done anything together as a couple besides being Eric's parents. We strolled through Hermann Park, looking at flowers and watching wildlife. Had dinner at Luby's. Felt like a date.

The doctor pulled chest tube number two out this afternoon. Eric's doing great. My prayerful pleas have shifted from "Please God, please" to "Thank you God, thank you."

Visitors today (in order of appearance): Aunt Lisa, Aunt Sue, Andrew, Grandma Rusnack, Aunt Cathy, Uncle Steve, the Easter Bunny (who gave Eric a stuffed rabbit) and two clowns.

It Just Keeps Getting Better

More good news. The doctors are downright giddy, smiling big grins, over Eric's progress the past few days. The pulmonologist practically did cartwheels in Eric's room this morning, he was so thrilled. He said the chest x-ray this AM was "gorgeous." He said at the rate Eric is improving, he's optimistic that Eric may possibly be decannulated (lose the tracheostomy) and be off the ventilator prior to going home. We pulled the right chest tube yesterday, and the left one is now on water seal. If no pneumothorax developes, we'll pull that one tomorrow. To put this in perspective, when we first got here and for the first couple weeks, the holes in Eric's lungs were so big, the leaks so bad, the doctors thought Eric would have the chest tubes for months, even possibly go home with them. We've been here for less than 3 weeks. On the ventilator, he's on CPAP 5, PSV 10, doing all the breathing on his own. The plan now is to get his new trach (standard post-trach procedure) AND go to the step down unit on Monday. Then it's all about rehab, nutrition, strengthening. Bob and I, and my sisters who are here with us, are celebrating, praising, and doing some cartwheels of our own. It's almost scary to feel this optimistic.

I want you all to know how much we appreciate your encouraging comments, prayers, well-wishes, and support. You've been such a big help in us navigating and surviving the past two months. I hope I can write the end of this story soon.

More Good News

Silly me, thinking any day in ICU could be boring. Nope, every day is a new adventure. Late yesterday evening, Eric began complaining of pain in the area of his right chest tube. Several days ago, the nurse noticed increased inflammation and reddness around the skin where the chest tube is inserted. So they've been changing the dressing every other day and treating it with antibiotic ointment. But now with this pain deeper inside that general area, as well as an increased temperature, the doctor suspects he might have an infection inside the pleural space. Hopefully, we caught it early and it can be treated with the antibiotics they started last night. But what to do? If there is infection, the tube must come out. "Germs love plastic," says Dr. Kennedy. But will Eric develop a pneumothorax if we pull the chest tube? As I said in yesterday's post, the leak has been small, but still there. To test it a bit, they turned the suction off last night, putting it on "water seal," then got an x-ray four hours later. No sign of any pneumothorax. Anyway, in short, we pulled that chest tube out today. And we'll see what happens. Hopefully, nothing.

Also of interest, that fickle left chest tube never bubbled all night long, which would have been a concern prior to last night. But Eric remained completely comfortable with stable vital signs. I'm baffled. I guess I shouldn't be. Shouldn't we expect miracles?

So Far So Good

Eric had a great night, very stable, and I think he slept better than in a long time. He's required very little pain medication post-op, so he's been awake, communicating, and comfortable most all morning. Right now, he's napping with this black eye mask on that his favorite night nurse gave him. So cute. And it's so awesome to see his face without all that tape on it and that tube hanging out of his mouth. He looks great in that respect.

His left chest tube is behaving itself for the most part, just a couple times last night it needed some tinkering. Of note, and I haven't mentioned this because it's been such a non-issue, is that his right chest tube is barely bubbling, but on this side, that's great news, because on x-ray, his right lung is fully expanded (this was a problem a few weeks ago) and the lack of bubbles mean the leak there is finally healing, hopefully. A few weeks ago, that leak was so bad, they thought Eric would eventually require more surgery to close the leak. The surgery that Eric had so many weeks ago back in Lake Charles finally seems to be a success. So it would seem that his lungs are healing, the holes are closing, at least on the right. Now if we could just get that left side to heal . . .

Bob and I are doing well. Ever since the attending physician had that talk with us about taking better care of ourselves, we've had a room in the Ronald McDonald House every night. I think it's been five nights in a row or something like that, I'm losing count. I think that doctor must have slipped the charge nurse, who makes the room assignments, a twenty or something. We're just grateful. It's not perfect. I sleep from 8 or 9 till 3:15 AM, then Bob sleeps from 3:45 to as late as he can sleep. Check out time is 11:00. Certainly better than trying to sleep in that waiting room.

I guess it will be pretty boring around here for a few days. As a "fresh trach," Eric is expected to be very still to allow the trach to heal. No sitting up high to write emails, no physical therapy. Just sleep, TV, or listening to either music or his dad reading to him.

On an exciting note, my two sisters, Sue and Lisa, are coming from Pittsburgh to visit us for two days. Can't wait to see them. And my mom, Andrew, and some neighbor friends will be here Saturday and Sunday.

God is good.