More on Saturday

Eric is resting right now, which allows me a moment to post a note. When he's awake, he keeps us busy wanting his dry/erase board, his feet rubbed, his fan off, his fan on, the TV on, the TV off, a cool cloth on his forehead, his nurse for suctioning or sedation, and endless sponges of water to moisten his mouth and occasional sips of a flavored drink drizzled into his mouth from a straw. Flavor of the day -- Sprite. Yesterday was lemonade. Tomorrow, he's already decided, will be Orange Crush. He's restless when awake. Anxious. In attempt to wean from the morphine, the doctor changed his med to Vicadin. And he still gets Ativan occasionally too.

The visit from his teacher seemed to help his mood somewhat. He was more agreeable to attempting deep breaths, and seemed to truly enjoy her visit.

We're Getting There

Eric continues to slowly improve. His strength is slowly returning. He's been very stable. Our biggest concern, besides anxiously waiting for him to come off the ventilator, is his depression and lack of drive. Even though he desperately wants to get that tube out, he doesn't seem to have the wherewithall to work for it.

Today Eric's teacher, Ms. Defelice, came in and gave Eric an amazing pep talk. Like everyone, she loves Eric and says she'll come as often as she can to cheer him on.

So not much else to report. We continue to thank you for your prayers and concern. We couldn't get through this without all of you behind us, supporting us.

Not Just Yet

Eric had a very peaceful, restful night. We had hoped he might be strong enough to come off the ventilator today, but he's not quite there yet. Dr. Thompson is as anxious for Eric to come off the vent as we and Eric are. But he's not quite strong enough . . . not yet. And we need to work on decreasing the doseage and frequency of the sedation, morphine and ativan. Over the past two weeks, out of necessity and through no fault of his own, my son, who in 5th grade won the DARE program essay contest and swore he'd never abuse drugs, has become quite dependent on these medications. He no sooner wakes up from a drug-induced nap and he's asking for more meds. But we're cutting back. We have to. He needs to be awake to gain strength. And he needs to get off these meds. Consequently, Eric is very uncomfortable and agitated, restless. So we ask for your prayers for continued strength and mental fortitude, a supernatural sustaining.

Patience, Restlessness, Waiting

Eric has been very restless the past day or so. They're trying to cut back on his sedation, but when he's not sedated, he's uncomfortable in the bed. He's tired of being in bed. He wants the tube out of his mouth. He wants to talk and eat. And he's having such a hard time getting good sleep. Yesterday he asked for grape juice. The nurse, she's such a softie, got permission from the doctor, and we moisten a small sponge on a stick with juice and let him hold it in his mouth. Today, it's Sprite. His morning blood gas was not quite as impressive today as yesterday, but not horrible. I know the doctor would love to get him off the ventilator, but doesn't feel he's strong enough just yet. He lowered the pressure on the vent slightly. So we're still moving in the right direction. Eric's white blood cell count was up this morning, so the doctor ordered cultures on everything, sputum, blood, urine, stool, to rule out infection. I don't see any of this as setbacks, but part of the difficult waiting healing process. So for those of you who pray specifically, Eric needs strength, both physically and mentally, patience, and a strong ability to hang in there and not give up. I can't even imagine how hard this all must be for him. And he's such a trooper, still so cooperative and pleasant to his caregivers. But his frustration is mounting. We continue to thank you all for everything.

Good News

Eric had another quiet night of healing. His breathing continues to improve. The doctor came in this morning, furthur decreased some settings on the ventilator, and said he'll be taking the breathing tube out "in a day or two." Incredible! Three, four days, a week ago, I never dreamed Eric would start to recover so quickly. God is good. Physical therapy has already been here and will come back again this afternoon, so Eric is gaining his strength back. And he's been complaining he's hungry, despite his tube feedings. I know he can't wait to get off the ventilator just so he can eat. And talk. Communication has been frustrating to him. Please pray there'll be no setbacks. Coming off the ventilator will be the hugest step in Eric's recovery. Thank you so much for your continued prayers.

Happy Mardi Gras

Above is a photo of my family. Eric is the tall handsome guy to my left, towering over me. To my right is Eric's twin brother Andrew. And my husband Bob.

Big day here in Lake Charles, as well as all of coastal Louisiana. It's Mardi Gras! Bigger than Christmas, though I've yet to figure out why. It's a state holiday, and the town celebrates with parades, carnivals, balls, and general merriment. Today actually marks the end of "Mardi Gras season," which always starts 12 days after Christmas and ends the night before Lent starts. We're sorta oblivious to the festivities here in the hospital, though lots of staff are wearing Mardi Gras beads, and Eric has some beads hanging from one of his IV poles, shiny bright strands of purple, gold, and green.

Another good day for Eric. The doctor came in and saw Eric's (relatively) awesome morning blood gas. He decreased the CPAP from 8 to 6 and the PSV from 30 to 25. In other words, we decreased the pressures on his ventilator, meaning more steps on the way to getting him off the breathing machine. So far, he's doing great on these new settings. Also, physical therapy came in to see him today. They actually sat him up on the edge of the bed for about a minute. Eric didn't like that at all. Naturally, he was very dizzy. And he's so weak. PT also did some light strength training and range of motion with him. It's another step on the road to recovery and getting his strength back. But he was exhausted. Eric took a world class nap after that.

God is definitely answering all your prayers. And we thank you. I'm very encouraged. As they say here on Mardi Gras, Laissez les bon temps rouler!

Holding My Breath

Just a quick note to let you all know Eric had another good night. And that pesky PaCO2 that was 87 yesterday morning (40 is normal) . . . was 61 this morning. Halleluiah, we're heading in the right direction. Prayers have been answered. I'm cautious to be too optimistic. The night nurse assured me that, while he obviously is much better than he was, she doesn't think he's out of the woods yet and setbacks are common in ICU. Nonetheless, I'm feeling good this morning. Thank you for your prayers for Eric's continued healing and strength, both physically and mentally/spiritually. Now that he is no longer heavily sedated, he's rather anxious, agitated, restless, bored, and frustrated because communication is difficult, etc. Who wouldn't be?

A Good Day

Breakfast runs into lunch. Lunch runs into dinner. Dinner runs into bedtime. Each day is a steady stream of phone calls, visitors, and watching Eric's monitor. Minutes run into hours. Hours run into days. Days run into two weeks now we've been here. You'd think it would be the opposite, but time goes by very quickly in the hospital. I rarely know the day of the month and have to think extemely hard to know the day of the week. I can't believe we've been here two weeks already. I keep waiting to wake up from the dream. No, the nightmare.

Speaking of dreams, I had a strange dream last night. I got on a ferris wheel. A unfamiliar woman got on with me. We started going around, up, over, down, and back up again. Early on in the ride, I noticed a bolt holding our chair was loose, but I couldn't get the operator's attention to stop the ride. We started going faster and faster, and I couldn't decide if I was having fun or if I was scared to death. And that was the end.

Eric had a wonderful day today. The doctor came in the morning, and we turned off all his sedation so we could check his neuro status. Once Eric woke up, I expected him to be extremely short of breath, but he wasn't. He breathed rather comfortably. I asked the doctor how much longer he thought we'd have to do the sedation/paralyzing thing, and he suggested we just leave him off it today and see how he does. So we did, and Eric did great. He's been breathing comfortably all day at his own respiratory rate with assistance from the ventilator (CPAP 8 with PSV 30, for my medical friends). His PaCO2 was still a problem (87) this morning, and his PaO2 is low (60s, but his SaO2 has been in the high 90s all day) considering he's on 50% O2. So his lungs still have a long way to go, but I'm encouraged and hopeful. We'll see how tomorrow goes. Thanks to ALL of you for your continued prayers.

Sleepless

Have you ever tried to sleep in an ICU? It's quite a noisy place! IVs beeping, alarms bleeping, vital signs monitor dinging, ventilator rhythmically swooshing, drug aerosol nebulizer misting, chest tube suctions gurgling, ICU doors banging open and shut, nurses and therapists flipping on lights to tend to their patient. Even when Eric has a good night, it's tough to get a good night's sleep. Cool about this hospital is that they give the parents of pediatric ICU patients a "hospitality room" which has a private shower, toilet, sink and bed. A comfortable bed, unlike the lumpy pullout bed in Eric's room. Bob and I trade off, alternating sleeping in the two rooms, so that on any given day, hopefully at least one of us has had a good night's sleep. One of us might go home once in a while, I think we've each been home twice in the past two weeks, but it's too stressful to be away from the hospital. We want to be near Eric, watching over, guarding, praying.

Eric had a good night last night and a good day today. Good meaning relatively uneventful. He spiked a temp today, so he likely has an infection somewhere. They sent blood cultures. And he has pseudomonas growing in his sputum, which is a common bug in ICUs. Hopefully neither of these things will be a major problem. We were able to make a little change on the ventilator in the right direction today. Baby steps. But hopefully we'll get there.

My Prayer for Eric

Dear God, thank you for watching over Eric while he's been here in the hospital. I pray that you will continue to guard him, protect him, heal him. Eric had a good night last night, stable, his O2 sats were 97-100, he looks better. And I was feeling pretty good about all this. Until his doctor came in this morning. Lord, he is so pessimistic. He offers us so little, if any, hope. But our hope is in you, Lord. Prove this man wrong. Surprise this doctor. Amaze him by what your healing touch and the power of prayer can do.

Thank you, Father, for the care he is receiving here, for the wonderful nurses and respiratory therapists who are doing their best to restore Eric to health and make him comfortable. Thank you for his doctor. Fill him with your wisdom to know how best to treat Eric. Thank you for the countless prayer warriors out there who are lifting Eric up day in and day out. We feel their love. We see little miracles every day. Thank you for our parents who are taking care of us and Andrew. Thank you for all our friends who are supporting us with phone calls, visits, meals, and most importantly, prayers.

Father, protect Eric from the dangers of life in ICU. It's a precarious place, fraught with potential obstacles and setbacks. Guard him from germs that could infect him. Protect him from negative drug reactions, medical errors, accidents. Protect him from the panic of the paralyzing agent Pavulon, which he needs right now in order to heal his lungs. Ascertain that he is sedated adequately enough that he doesn't feel buried alive in his own body, unable to move a muscle. Unable to communicate, to scratch an itch, to grimace when he feels pain. Fill him with your supernatural sedation, your divine peace and comfort, and enough fortitude to endure this difficult time.

Thank you, Lord, for your grace and mercy. Please continue to heal Eric and restore him to the healthy young man he is. Preserve all that makes Eric unique and special -- his steadfast faith, his servant heart, his love of humanity, his curious and knowledge-seeking mind, and the beyond-his-years maturity. Hold him in your hands, Lord. Carry him through to full recovery. Heal him, and every day of his life will be a witness and testimony to your awesome power.

In Jesus' name, Amen

Rollercoasters

Stop the ride, we want to get off!

First of all, I want to thank all of you for your kind words of encouragement, your thoughts and concerns, and most of all, your prayers. All the medicine and medical interventions can not match the healing touch of our Father. So it is divine healing for which we're all praying.

Eric had a relatively stable night last night. I felt somewhat encouraged and hopeful first thing in the morning. Then just after 7:00 AM, after shift change, the nurse and respiratory therapist come in the clean Eric up, which involves a lot of turning in the bed. Immediately after they did this, Eric's oxygen saturations (the amount of O2 in his blood) began dropping. Why? We couldn't imagine what had happened. The doctor was called. The doctor came in. He shook his head. "There's not much more I can do," he said, apologetically. Bob and I were beside ourselves. This couldn't be happening. Imagine the scene . . . Bob and I, my mom and our pastor surrounding Eric's bed and praying furiously for a miracle but preparing ourselves to say goodbye at the same time. For 2 1/2 hours we watched his condition decline, life fading from his face. I imagined him talking to Jesus already. I called several of my most ardent prayer warriors and asked they spread the word. We need a miracle . . . now! Then in comes the X-ray machine. His doctor had ordered a chest X-ray. When the film returned, we saw his right lung had completely collapsed. The doctor knew he had to get a new chest tube in, and fast. When he pulled up Eric's gown to prep a site, we couldn't believe what we saw. "Well, this could be the problem," he said. Eric's existing chest tube (which holds the lungs open) was folded upon itself, kinked, and he was laying on it. In other words, it wasn't working. The doctor attempted to get it to work to no avail, so he immediately put in a new chest tube. And it was as if my son was resurrected. His O2 sat returned to something survivable. And he has been stable ever since. For now, anyway. But we received our miracle, that being the doctor ordering the x-ray and discovering the kinked tube. I've come to realize that I never know what's around the corner. I live moment to moment. I have a knot in my stomach 24/7, unsure of what will come next. And I can barely tear my eyes off Eric's monitor, constantly watching his O2 sat. Anything above 90% is acceptable, and right now it's 93%. Yay! Here's hoping for an eventful night.

Prayers, Faith, Hope

The events of yesterday and today are such a long story, I barely know where to begin. I'll try to make a long story short.

For various reasons, Eric now has a new doctor, a very well respected pulmonologist. Ten days on a ventilator, and we simply weren't seeing improvement. In fact, Eric's condition was worsening. But as of this morning, when the new doc got aggressive with treatment, we're re-finding a glimmer of hope. Nothing like bilateral chest tubes to reinflate the lungs.

Thank you all for your thoughts, concerns, and especially your prayers. We truly need a miracle. Please check out my friend Jess' blog. http://jessyferguson.blogspot.com/2009/02/answer-is-always-jesus.html She very eloquently writes exactly how I'm feeling right now.

Eric remains in critical condition, but each day he shows small but significant signs of improvement. His chest X-ray is clearing. All his bloodwork numbers are excellent. We're usually able to wean the settings on the ventilator slightly through the night and into the day, but by evening, his blood oxygen level starts to drop again and we're back up on the settings. No day is complete without a little drama. Guess that's life in ICU.

Eric is a model patient. The nurses practically fight over him. One nurse says he's the best patient she's ever had. Another awarded him the most patient patient ever. He's so cooperative, pleasant, and displays a sense of humor. Despite being heavily sedated, he has a dry erase board that he loves to use for communication, that is, when we can decipher his hand-writing. Yesterday, he wrote to his nurse, "You're very good at your job. Thank you." He's also very inquisitive. He wants to know what's going on, what the nurses are doing. He likes procedures to be explained to him in detail. But most of all, he wants to know when this will all be over. He wants to be off the breathing machine. He wants to eat, to talk, to "feel normal." He's very frustrated, in addition to being miserable. And he's bored. He feels like he's wasting time there. He wants to do school work. He's worried about getting behind. So like Eric. Unfortunately, we have no answer to his "when" question. We can only say, "When your lungs are better. Hopefully soon."

I've become addicted to watching Eric's monitor. I'm home this evening, spent the last three nights in the hospital. Bob is with him. I'm so nervous when I'm home. I worry something will happen and I won't be there. And I can't see the monitor. Most notably, I watch his SaO2 (the amount of oxygen in his blood.) All his other vital signs are normal, stable. But we just can't seem to keep his O2 adequate for any length of time. We come down on the ventilator settings, and he does okay for awhile, but eventually, he desats and has to go back up a bit again. He's slowly making progress. One step, one breath, at a time. Thanks so much for your continued prayers.

Symptoms, Sickness, and Side Effects

As many of my readers know, my son Eric has been sick for a week and a half. Longest ten days I’ve ever known. On February 5th, a Thursday and my birthday, Eric called me from school mid-day and said, “I’m not feeling well, Mom. Can you come pick me up?” I brought him home and put him to bed. His temp was 102.5. Within two hours, it was over 104. And I gave him Motrin. We had no reason to be overly concerned. Viral infections were “going around.” The fever persisted but we were able to manage it. Friday-Sunday, an unusual rash developed, first on his face, then on his torso, and eventually on his entire body. Saturday, we started thinking it had been a fairly long time to have such a high fever, but he was drinking plenty, eating some, and didn’t seem to be critical, so we opted not to take him to the emergency room. Monday morning, I called to make him a doctor appointment. His rash had mostly subsided, but he began coughing a little bit and complained of a sore throat. And he was very weak. I practically had to carry him into the doctor’s office. And, at age fourteen, he’s bigger than me. The doctor ruled out strep and thought too that it was a viral infection. He did blood work, which was all normal except for a mysteriously alarmingly low platelet count. But he was drinking okay, so doc said we’d treat him at home. And to come back Wednesday for repeat bloodwork. Tuesday morning, his cough was worse, his fever persisted, and I was beginning to suspect he had pneumonia. And what was that odd purple bruise on his cheek? Knowing he couldn’t wait till Wednesday, I called the doctor and made the earliest appointment, 1:00. Around ten AM, Eric was sitting in bed doing homework. But around noon, the effort it took to get up, go to the bathroom, and get dressed was too much for him. He became very short of breath, and the 25-30 minute drive to the MD office was frightening. He struggled to get into the waiting room and I demanded he be seen right away or I’d have to take him to the ER. They did attend to him quickly and immediately began treatment; O2, breathing treatments. They drew blood, and now his platelets were zero. We rushed him to the hospital and admitted him directly to ICU. A chest x-ray showed pneumonia. He suffered through that first night here, so short of breath. I knew before the doctor even came in Wednesday morning that he’d have to be intubated and put on a ventilator.

Now it’s Monday and we’ve been on a roller coaster of emotions, fatigue, fear, and hope. His lungs have been seriously assaulted and who knows how much time they’ll need to heal. He's still on a ventilator and heavily sedated to allow his lungs to heal.The doctors are basically scratching their heads, wondering what has caused this. The blood and sputum cultures have come back negative. The inflammation is responding well to steroids and is clearing quickly. His platelets are back to normal. The fever has subsided. We just need his lungs to get better. And it might take time. But what happened? Bob and I have a theory. The doctors don’t want to entertain the notion. But we don’t think it’s a coincidence that he started an antibiotic, Bactrim, just four days prior to his fever starting. For acne, of all things. Every symptom Eric had was among the list of side effects on the package insert. Why didn’t I make the connection sooner and stop the Bactrim? We continued to give it to him until Monday night. We may never truly know what brought this all on. But he’ll never take a sulfa-based drug again. And I’ve learned an important lesson. Before starting any new drug, be familiar with the list of side effects and watch for them.

It doesn’t matter at this point how it started. What matters is that he recovers. And I have faith that he will. He certainly is covered in prayer. We’ve been overwhelmed by the outpouring of genuine care, concern, calls, visits, offers of help, and, most importantly, prayers that have been showered on us from this community; our church, neighborhood, Eric’s school friends and families, teachers, friends in Pittsburgh, and friends we don't even know around the world. It’s an amazing thing to see. We are truly blessed to have so many friends. I’ll keep you posted on his progress.

Winning One for the Other Hand

Whew! That was way too close at the end of the 4th quarter. But the Steelers pulled it off for a record 6th Super Bowl win. There's a party in Pittsburgh tonight!