Post-Op Tracheostomy

Just a quick note to let you all know that Eric is back from the OR and doing well. Of course, he's sedated for pain management, but he was alert and communicating with us. When we asked him if he was glad to get that tube out of his mouth, his eyes got big and he very enthusiastically mouthed, Yes!

Tiny Bubbles

Eric's left chest tube continues to give us fits. But we're so adept at recognizing the signs now, we work to get the tube functioning again before there's much of a problem. Even Eric can tell us when it stops bubbling, before his O2 saturation starts to fall. He just knows what it feels like. As I write this, I'm sitting beside the chest tube with a flashlight, periodically checking for those tiny bubbles that indicate the chest tube is working, and keeping my eyes on the monitor to watch Eric's sats while he sleeps. What we really need is a doctor to come unsuture it and truly manipulate it into a different position that isn't so . . . positional.

I didn't sleep well. I'm not at all worried about the tracheostomy. Not that I ever dreamed I'd be happy that my child is getting one, but I know it's what Eric needs right now to move forward in his recovery. I'm very concerned about all the other aspects of the procedure. I worry that anesthesia will over-ventilate him with pressures too high for his fragile lungs, causing more blebs to burst, more pneumothoraxes. I worry they'll over-sedate him and drop his blood pressure, like they did the other day when they reintubated him. Or that they'll under-sedate him and he'll feel pain. I worry that they won't keep a close eye on these chest tubes.

The nurse weighed Eric tonight. After several days of nutrition, both TPN and NG, my boy actually lost a pound. He tells us several times a day that he's hungry. He'll continue to get TPN throughout the procedure and recovery, and hopefully they'll restart the NG feeds soon after. I think they need to increase the amount. For those of you who know Eric, you wouldn't even recognize him, he's so gaunt. He looks skeletal to me, his eyes sunken back into his face. I want to feed him!

Eric was visibly more depressed yesterday. Sullen and indifferent. Usually he tells us exactly what he wants, but yesterday, he answered every question with a shoulder shrug. He said it wasn't because of the trach, but rather everything in general. And who can blame him? He's been in ICU for seven weeks today, all but a week of that on a ventilator. But still, I worry. We've come so far. He can't give up now.

Anyway, we still need loads of prayers. Prayers that Eric's tracheostomy goes well today and that it heals well. That Eric will adjust to it well. That he'll be out of ICU within a week. That he'll get his motivation back. That his lungs will continue to heal and the holes will close. And that Bob and I can stop worrying.

Fickle Chest Tube

Eric had another "episode" around noon today. Out of the blue, he became very short of breath, his SpO2 decreased, and his respiratory rate, heart rate, and blood pressure rose. It all started with physical therapy, all that moving around, sitting on the edge of the bed. Well, we've seen this before and knew exactly what was happening. We looked at that left chest tube water seal drain apparatus and sure enough, it wasn't bubbling, meaning it wasn't draining the air from the space just outside his lung, and that air was building up (called a pneumothorax), pressing in on his lung, and making it difficult for Eric to breath. The nurse called the doctor, who ordered a "stat" chest x-ray. X-ray came about 45 minutes later, and then we had to wait for a doctor to look at the x-ray. Meanwhile, Eric was miserable. We know that the left chest tube is positional so, taking matters into my own hands, I said to the nurse, "Watch for bubbles," and I gently pushed his chest tube sideways slightly toward his navel. "I see bubbles," the nurse said. So I just held it there. Immediately, we watched his SpO2 creep back up, and his HR, RR, and BP slip back down. If I released the pressure and it rotated back, the bubbling stopped again. "I'll hold it all day if I have to," I said. And I did for quite awhile, a look of immense gratitude on Eric's face. But finally, we just taped it real good in that same position. Eventually, a resident looked at the x-ray, confirmed that he had a growing left lower lobe pneumo, but seemed to be satisfied that we'd resolved the problem. Eric took a nice long nap after that. Until PT came back and woke him up to exercise again.

Tomorrow's the big day . . . Eric gets his tracheostomy. No more endotracheal tube hanging out of his mouth.

Sunday Status Report

General Atmosphere - quiet Sunday
Minutes Dangling with PT - seven
Music on the CD during PT - Godspell
Mood - motivated
Current Book - just finished the 7th book in the Pendragon series
Afternoon Movie - October Sky
Vent Status - weaned FiO2 to .40. Sailed through a weaning trial, CPAP 5 PSV 10 for one hour.
Visitors - Mark, Sara, and Rachel Judson
Length of Time Here at TCH - 2 weeks today
Prognosis - excellent

Saturday

As I mentioned in a previous post, Pediatric ICU is a sad place. Even here at Texas Children's Hospital, this mecca for quality health care, kids don't always make it. Yesterday afternoon, another baby died. Another mother's child. Despite being surrounded by a vast extended family, the mom was inconsolable. Watching her tears I saw a grief I can't begin to imagine, a pain I hope I never know. My heart broke for her. And all I could do was pray. What made it even more difficult is that this one-year-old died of complications from leukemia, and I remembered my dear friend Michele.

I did our laundry in the Ronald McDonald House this morning. I didn't think I'd enjoy doing laundry, but was surprised to find that it actually felt good to do something so normal. You know what else I miss? Cooking. I want to make dinner for my family, all four of us, and sit down together in the breakfast nook. Normal. We'll get there.

Eric had another great day today, similar to yesterday. Except he dangled bedside 6 minutes today. Wasn't easy, but he pushed himself. Then we had several visitors this afternoon. Eric's aunt, uncle, and cousin from here in Houston. And Eric's beloved math teacher, Ms. DeFelice came and brought Andrew and my mom-in-law Pat. Great to see everyone. I think Eric especially enjoyed the visits. Wore him out though. He should sleep well tonight.

While my sister-in-law Cathy and Ms. DeFelice sat with Eric, the rest of us went out to dinner at a great Chinese place. It was good to get out of the hospital for awhile. Yet at the same time, I was somewhat apprehensive and anxious to get back. Of course, Eric was fine.

Best Day Yet

Eric has had an awesome day. All his vital signs have been superbly stable. His SpO2 has been 100% all day. (Vent settings; SIMV 13, pressure-limited at 16, PSV 10, PEEP 5, FiO2 .45) That left lower lobe pneumothorax that developed last evening has completely resolved. He had PT twice today, and sat on the edge of the bed for 5+ minutes! He's been awake, alert, all day, nearing the end of the sedation weaning protocol and no signs of withdrawl. He sent his friend Noelle in Hawaii an email, typed it all by himself. He's been writing us notes on his dry erase board all day, and he can't wait til Tuesday to get his tracheostomy. Somewhat worrisome is that they weighed Eric today. He weighs a mere 94 pounds. He was 130-135 prior to getting sick. But he's getting nutrition through both TPN and NG tube feedings now.

Eric's evening episodes the past two nights seem to be related to the fact that his left chest tube seems to be positional. As long as it stays in good position, Eric feels great. Otherwise . . . not so good.

Bob and I are attempting to take better care of ourselves. I took a walk today. Bob took a nap at the Ronald McDonald House. We have a room there tonight, so we should be able to take turns getting some good sleep.

Thursday

We had a few visitors come in today. A gal with ICU child life services came and talked to Eric, gave him a little pep talk, counseling him and encouraging him that all will be much easier and better and more interesting when he graduates out of ICU. An ENT (ear nose throat) fellow came in and talked to us about the tracheostomy procedure. Still scheduled for "sometime next week." Physical therapy came in once today. Eric sat up for the first time here and dangled bedside for almost 2 minutes. That was pretty exciting. And he's doing his other exercises also. They say they'll start twice a day tomorrow.

Eric's ICU attending and fellow took Bob and I into a conference room and tactfully told us we need to start taking better care of ourselves. As in get more sleep, get out of the hospital now and then, etc.. Yikes! Is it that obvious? It's true, we are tired. But we don't want to leave Eric. If only he had a voice and could more easily get someone's attention if he needs something. We just want to be here for him. We told him we would.

Slumber and Sedation

Eric has been sleeping most all day. In attempt to comfortably and without withdrawal wean him from the sedatives Fentanyl and Versed, he's on a protocol with Ativan and Methadone. Maybe because he's not as used to these, I don't know, but he's more sedated with the weaning meds than he ever was on the original sedatives. It's very peaceful and quiet (as quiet as a busy ICU can be) in Eric's room today and he's breathing comfortably. (Vent settings now SIMV 13, pressure controlled at 14, PSV 7, PEEP 5, FiO2 .40, and he's maintaining a SpO2 95-97%) We spoke with the ICU attending doctor regarding pavulon paralysis post-tracheostomy, and he said no, we would not be doing that with Eric. So we needn't have worried. The gals who spoke with us yesterday were obviously mistaken.

Lately, I find myself wondering what Eric is thinking. Even though Bob and I are with him 24/7, the lack of ability to communicate must be maddening. A mind full of thoughts, ideas, frustrations, fears, hopes, and unable to verbalize. One can only write so much on a small dry erase board. I can't even imagine the isolation behind the endotracheal tube.

Where does his mind wander? Is he mourning the loss of the entire second half of eighth grade. He was looking forward to so many events . . . the spring band trip to Orlando, the poetry competition at the state Beta convention, Quiz Bowl, Forensics tournament, soccer games, 8th grade graduation and awards ceremony. Eric was one of those kids who's involved in so many activities we can hardly keep his calendar straight, yet he manages to get his homework done and excel academically.

Has it occurred to Eric that it's unlikely he'll attend the Governor's Program for Gifted Children this summer? He had the time of his life there last year at McNeese State University and couldn't wait to go back. Does he know that, due to his extreme lung damage, he won't be able to play his trumpet again for a long time, if ever? Does he know that he won't be able to sing with that beautiful tenor bass voice for many months, or more? He's lost so much. Does he realize? It breaks my heart to think about it.

Does Eric also know that there will be other opportunities, other events, hobbies, and activities to take the place of previous ones, to fill in the spaces left empty by this illness? Right now, I can't imagine what these might be. But I know God has a plan.

Six Weeks of Hospitalization Today

It's been a hodgepodge day, a little of this, a little of that. A group from the stepdown unit, where Eric will go once out of ICU (in a couple weeks?), came by, told us a bit of what life would be like there. There will be lots of learning, especially for Bob and I, on how to care for Eric and his tracheostomy, ventilator, etc. Of course, that will only be a review for me. Eric will learn how to talk and eat with his trach. There'll be lots of rehab. We're told the rooms are nice there, big, with a pullout bed large enough for both Bob and I to sleep on. They gave us a notebook with info on tracheostomies. They showed Eric an actual trach tube, so he knows what they look like. They also informed us that, once the trach is put in, Eric will be on "fresh trach" precautions, which includes 5-7 days of not just sedation but paralyzation so the trach has time to heal. This sounds extreme to me. A question for my medical community readers . . . is this common practice? Or a pediatric thing? Or something specific to the ENT group here at TCH? Because Bob and I totally don't want to see him parayzed for even two days. The plan is to build Eric's strength. And we've seen how even a couple days on paralytics can sap a person's muscles and energy. If it is just a pediatric practice, we're hoping ENT will see Eric as adult in both size and maturity, and not insist on those 5-7 days just because "that's how they do things here."

The rehab doctors came by and evaluated and examined Eric. Not sure if they made a specific plan for their physical therapists. They asked if there were any rehab facilities for Eric in the Lake Charles area. I'm not sure, but that all seems so far in the future to me right now.

Eric received a "PIC" line today, which is some kind of fancy IV. Later today, they pulled out the arterial line and CVP line. They stopped the TPN and increased the tube feedings. We're in the process of cutting back on sedation, and this is difficult for Eric, even though he wants to be less sedated. He wants to start doing things like sending emails, playing cards, gameboy, reading, and the sedation is making this a challenge. But they've got a weaning protocol here that hopefully will make the process more comfortable for Eric.

We found out my two sisters, Sue and Lisa, are coming to visit Apr. 2-4 from Pa. We're pretty excited about that. Bob's sister and brother-in-law came by this afternoon.

And now Eric is sleeping.

Consensus

Bob and I just got out of our meeting with a few of Eric's doctors, namely the ICU attending, a couple fellows, and a resident. And we're breathing a huge sigh of relief. They say there was a group of about twenty medical doctors in their meeting this AM, and the consensus was (incredibly) unanimous. And they say that rarely happens. But they've decided that surgery, at least at this time, is not in Eric's best interest. They want to treat Eric conservatively as opposed to aggressively. This was super good news to Bob and I. Of course, this means a commitment to a LONG recovery and rehab. If all goes well, if there are minimal or no setbacks, we'll be here 2-3 months. Then maybe some time in a rehab facility. No one knows for sure exactly, only based on their previous experience with cases like this. And the attending says Eric's lungs are one of the worst cases he's seen. Any worse cases have had to have lung transplants. And we don't intend to go there. The short term plan is to get Eric nourished and stronger. And to recover from the present infection. Then sometime next week, he'll get a tracheostomy. He'll likely need to be on a ventilator, at least part of the time, ie at night. But that's probably down the road. This sounds extreme, but really it's a good thing. He'll be more comfortable not having that tube in his mouth. Eventually, he'll be able to talk and eat. Rehab will be much easier. And it's expected that the trach won't be permanent. The big issue remains the leaks in his lungs. Will they heal on their own without surgery? He may need to have the chest tubes in for up to six months or so. And surgery isn't completely out of the question at some point in time if the leaks refuse to heal. I did ask if Eric might start high school in the fall. The doctors were doubtful. But they don't know Eric. I say we'll see.

On a more immediate note, Eric had a great day today. He was awake most of the day. And he's motivated. Physical therapy resumed today. He got his hair washed. We weaned a bit more on the ventilator. SIMV 15, pressure-limited at 14, FiO2 .45, PEEP 5. Eric's off the dopamine and norepinephrine. He's on TPN and they've also started tube-feedings, and he's looking perkier already, lifting his arms better to scratch his head, writing us notes again, etc. He enjoys listening to music and having his dad read to him. Lisa, I'll be breaking that box open real soon to see what's in there for him to do.

Note to Dr. Thompson . . . sorry I keep missing your calls. We do appreciate your continued interest. They don't allow us to have our cell phones on in this ICU. Call 832-824-7076.

A friend once told me, or maybe it was my mom, that God had a reason for guiding me to become a respiratory therapist. He was preparing me for such a time as this.

Lots of prayers were answered today. Wisdom for the doctors, and increased strength and healing for Eric. Thanks, everybody!

Cause and Effect

It's just one thing after another. Eric is on SO MANY medications; at least three different antibiotics, steroids, (weaning off solumedrol, plus hydrocortisone), sedations ("low dose" IV pump fentynol and versed, plus PRN boluses). Some drugs can harm the kidneys and others the liver, so they have to monitor this. When he's on a ventilator, it's more comfortable for him to be slightly sedated, but when he's extubated, he has to suffer some withdrawl. When he has to wean off the sedation drugs, they give him methadone to ease the symptoms. They give him meds to counteract the effects of other meds. Saturday night when he had to be reintubated, they first gave him three different drugs to sedate him. This cocktail bottomed out his blood pressure to 40/20. I thought he was going to code right in front of me. So they pumped IV fluids, dopamine, and norepinephrine to get his BP up. Two days later, we're still trying to get him off these two drugs. And now he's started having PVCs (premature ventricular contractions, a mild but worrisome heart arrhythmia) They tell us now his lymphocyte count is low, that as a result, he's susceptable to many opportunistic infections. They're primarily worried about pneumocystis carinii (PCP). They did a broncho-alveolar lavage to obtain a sputum sample to rule this out, but there weren't enough cells, so they still don't know. They may have to do a bronchoscopy to get this sample. In the meantime, they want to treat prophylactically. Only two drugs treat PCP . . . Bactrim! Obviously, we're not going there, as we suspect that's what caused this whole disaster in the first place. And pentamidine, a hard core drug if you ask me. I find myself wanting to scream, "God, get us out of here!" We've been told, and indeed have witnessed first hand, ICUs are dangerous places, fraught with subjective human decisions, errors, drug reactions and interactions, GERMS. Don't get me wrong, the doctors, nurses, respiratory therapists, even the cleaning staff, are wonderful here. But still . . . it's a scary place. Sometimes I think my mouth is hurting, and then I realize, I've been gritting my teeth.

Anyway, as I mentioned in previous post, today there will be major meetings to determine the best course of action(s) for Eric. And I've been praying like crazy that our Divine Healer will be the physician in charge there, that he'll be present and give these doctors wisdom to know the right things to do.

A Day at a Time

We went to CAT scan today, but otherwise, a quiet day. Eric remains stable. They weaned a bit on the ventilator, moreso for the purposes of safer parameters (currently, pressure (16) SIMV 18, FiO2 .45, PEEP 5) , rather than a goal of extubation at this point. He'll need to remain intubated for some time both for secretion clearance and until he gains strength back. They're feeding him TPN and also later tonight will begin nasal-duodenum (nutrition put directly into the intestine) later this evening.

We'll know more about the plan for Eric tomorrow. The doctors will have a big powwow then to discuss the best course of action for Eric. We're guessing that plan will include surgery. When is the question. One day at a time.

Back on the Vent

Once Eric was intubated last night, we discovered he needed the vent for more than a low pH and high PCO2. They started suctioning Eric and got tons of secretions out of his lungs. "Neverending" the nurse said. He was drowning in copious amounts of thick purulent sputum. We won't get the cultures back for a couple days, but they're calling it pneumonia and have already started across the board antibiotics. Eric responded to conventional ventilation well. Prior to knowing that, the doctors said they would "try" a regular ventilator, and at the same time were talking about the "oscillator" (we called it a "jet" ventilator in Pgh) and if that didn't work, ECMO (don't ask if you're not in the medical field). But he surprised them all and his pH quickly went from 7.13 to 7.39. And we've been able to ventilate Eric with low pressures, which is key in his case to not do furthur damage to his lungs. And once they got the vast majority of sputum out of his lungs, and they continue to do so, his oxygen level has also greatly improved.

Speaking of Eric's damaged lungs, the surgeon stopped by tonight. He's a "straight-shooter" and told us if he doesn't do surgery soon and fixes those leaks, Eric is "going to die." We dread the thought of Eric going to surgery again; he hasn't recovered from the last surgery almost two weeks ago. But it doesn't sound like we have a choice. Eric's going to CAT scan again today. Not real sure when this surgery might happen, possibly Monday or Tuesday, unless this pneumonia holds things up. They tell us his lungs are so devastated, and indeed they are, but it occured to me . . . the fact that, at one point yesterday, when on a simple face mask, Eric had a PaO2 of 225 (which was too much and caused his PCO2 to rise, called CO2 narcosis), and then his PCO2 responded so well to mechanical ventilation, tells me that surely there's some very viable lung tissue in there. If the lungs weren't working, we could ventilate him all we want and nothing would happen. So if the primary problems are mechanical, if the surgeons can close the leaks and get the lungs re-expanded . . . maybe it will work. I'm ever hopeful.

As of this AM, Eric is stable. He and Bob even watched Steve Martin's movie The Jerk earlier. Current vent settings; Pressure-limited 18, SIMV 18, FiO2 .60, PEEP 5.

Starting Over

Eric had to be reintubated and put back on the ventilator tonight. So we're back to square one. But there was no other choice. His pH was something like 7.13, his PCO2 had skyrocketed. He was simply too weak to sustain ventilation on his own. He didn't have an effective cough and he had loads of secretions. So, we'll feed him with TPN (IV nutrition) and NG tube feedings and hopefully build up his strength, and hope he's stronger the next time.

Biding Time on BiPAP

There's a lovely garden outside the Ronald McDonald House. I love to go there just to sit in the sun and quiet, to escape for a brief respite.

Eric remains on BiPAP this evening. He's still working hard to breath, but he's more comfortable today, not as anxious and restless. He still doesn't like the BiPAP mask, but he's accepting. The nice thing about this mask vs. intubation is that he can take short breaks from it now and then. They're starting some IV nutrition (TPN) this evening, so that's a step in the right direction. Hopefully, if he continues to be stable off the ventilator, they may resume tube feedings tomorrow. And they may let him start to eat soon too. All depends on if he can stay off the ventilator. Everyone agrees, nutrition is key to Eric gaining strength back.

Hard to believe we've been here a full week.

Post-Extubation

Eric didn't do so well off the ventilator. Currently, he's on BiPAP, a type of ventilation where he receives pressure to help him breath via a snug-fitting mask on his face. We have no idea how long he can tolerate this, it's somewhat uncomfortable to have that big mask tight on his face, or how long he can continue to breath on his own. He's very weak, still very short of breath. He may at some point have to be re-intubated and put back on the vent.

Our pastor Fred Seay and his wife Ruth came to visit yesterday and they brought Andrew and my mother-in-law with them. It was great to see them all yesterday. Andrew did a funny thing sometime in the past six weeks we've been apart. He grew several inches. He's been not quite as tall as me for the longest time. And yesterday, when he and I hugged, Bob noticed Drew is taller than me. Wow, when did that happen? I really miss him.

A pediatric ICU is a sad place. So many very sick kids. I see and hear so many parents crying. I don't know their stories. I can only pray for them, as you all have been praying for us. Surely, your relentless prayers, thoughts, concerns, and support have been what sustains us.

Extubated

The good news today is that Eric was extubated around noon. But he's not exactly flying like we'd like him to. Since extubation, he's been struggling pretty hard. He's on a simple face mask, and his SaO2 is high 90s. His PCO2 is 80-something, but his pH is 7.31, so he's compensating and the doctors aren't concerned. But he's working really hard. Right now (4:30 pm) he's sleeping, and even asleep, he's short of breath. We had a very frank talk with the cardio-thoracic surgeon this afternoon, a Dr. Salazar. He took a lot of time and explained the situation, somewhat. Truth is, he's not exactly sure where things are going right now with these lung leaks. They're a very serious problem. Best case scenario would be if Eric could remain off the ventilator, and the leaks could close on their own. Both those events are long shots. If he has to be re-intubated, the chance of them closing without surgery are nil. Even extubated, who knows. I'm usually optimistic, but sometimes I'm realistic also. And I don't feel hopeful. I hope I'm wrong. If the leaks don't close, Eric will require surgery, but the surgeon would surely prefer not to. He says he'd have to take out more lung. Eric may be left with only one lobe on each side. Even if the leaks do close on their own, Eric may still require surgery of his lungs don't expand more. This is all such a disaster. I can't imagine how he'll ever play soccer, play trumpet, all these things he loves, ever again, if indeed, he even survives. The surgeon says we're at a crossroads. And he's on board with doing whatever needs to be done.

So, prayer warriors, we need to pray like never before. We need more miracles. Eric needs those leaks to close. He needs his lungs to expand. I don't know what else to say. Except that I thank you all.

Breathing

I'm guessing most of us take breathing for granted. Respiration is instinctual. We don't have to think about it. We just do it. But as I've sat here these past five weeks, watching my son work for every breathe, I've become increasingly aware, and thankful, for the miracle of breathe. I'm conscious of air passing through my nose, down my windpipe, into the furthest reaches of my lower lobes, and back out again in regular, rhythmic sine waves. Instinct. Yet easier for some than others.

They're continuing to wean Eric through the night. He's at PSV (pressure support ventilation) 10, FiO2 .45. (When we arrived here last Sunday, these were at 35 and .80.) In 25 minutes, at 3:00 AM, they'll take one more step, PSV to 5, then they'll turn off his NG tube feeding (so he doesn't vomit) in preparation to take the endotube out in the morning. Perfect timing, as his brother Andrew, Bob's mom Pat, and our pastor are coming to visit tomorrow. So as I sit here in this darkened ICU room, listening to Eric breath, I pray for his strength and continued healing.

Taking Care

Everyone says to Bob and I, "Take care of yourselves." And we know this is important. At the same time, it's incredibly difficult. Sleep is a huge issue. Eating is random and rarely healthy. And exercise is non-existent. At Lake Charles Memorial, my primary source of exercise was taking the stairs between the third, second, and first floors. Here at TCH, the stairwells are limited to employees with coded badges. We can try to get outside for short walks, but as long as Eric's in ICU, we don't like to be too far away. I'll do the best I can, but what's most important right now is Eric. I can whip myself back into shape later.

As in Lake Charles, the staff here are impressed with what a great patient Eric is. I'm quite impressed myself. How can a fourteen year old boy, who's been on a ventilator four of the past five weeks, be so calm, relaxed, cooperative, pleasant, peaceful? He has occasional periods of increased anxiety, when he asks for some sedation. But he's trusting, seemingly without fear, amazingly accepting. It's almost baffling to me. Surely, he has the presence of the Spirit within.

Eric tolerated weaning well again today. They decreased the amount of suction on the chest tubes by half, hopefully a happy medium that will keep the lungs expanded, keep the pneumothoraxes at bay, and possibly allow the leaks to close. Because of the the length of time these leaking holes have been patent, no one is optimistic at this point that they'll close on their own. Current vent settings: PSV 13, PEEP 5, FiO2 .50. The critical care docs are talking about extubating maybe tomorrow, or the weekend. But the looming question is what do the surgeons have planned? We haven't talked to them yet today.

Lung Leaks

Tuesday afternoon's experiment to turn off the suction to the chest tubes in order to seal the holes in his lungs worked for a time, but over the next 24 hours, Eric's pneumothoraxes, the air in the spaces around the lungs, enlarged and caused Eric to become increasingly short of breath by yesterday afternoon. They turned the suction back on to rid that air and reinflate the lungs, and Eric's very comfortable now. The respiratory therapist discontinued the nitric oxide last evening. And I'm guessing they'll furthur wean the ventilator today. But we still have the issue of what to do with these persistent lung leaks. I'm sensing they're thinking surgery may be the only way. We're getting so close to Eric being extubated again. Will surgery keep him on the vent another week? Will surgery solve this problem? We're praying for physician wisdom.

Quiet Day

We've had a quiet day. The stream of doctors has slowed to a trickle. No tests today. Just breathing, healing, weaning, listening to jazz, reading (Bob and I read out loud to Eric). Bob and I took turns going outside for some fresh air and sunshine today. We wish we could take Eric outside. Imagine not being outdoors for five weeks. I'd like to put him in a wheelchair and sit in a garden for awhile. But he's got significant strength training to do before he'll be able to sit that long. First order of business is to get him extubated. Current vent settings; CPAP 6, PSV 18, FiO2 .63. The nitric acid will be off later this evening.

Ronald McDonald House, CT Scan, Etc.

The Ronald McDonald House here is wonderful. Bob and I are so impressed with how nice it is. Such a haven for stressed out parents. Because there are so many people here who'd like to use it, and only so many rooms, it's a night by night lottery. Not exactly luck of the draw, though. I guess it's a charge nurse who looks at everyone who's signed up, then factors in needs, such as critical nature of the patient, distance from home, etc. I'm hoping we have access two or three times a week.

I'm often asked how Andrew is doing. Good question. I've seen so little of him in the past weeks, five weeks today actually. He's been at home, cared for first by my mom and now by Bob's mom. Thank God for our wonderful parents who have been willing to interrupt their lives and come in from out of town; my mom from Pennsylvania and my mother-in-law from Arizona. As expected, Andrew is having a pretty rough time. He misses us and his twin brother terribly. He's worried. His grades at school have fallen. So please keep Drew in your prayers, too.

I love in the morning when the doctors make their rounds. The whole group of them; attending, fellow, residents, med students -- discussing every aspect of Eric's care, considering input from pulmonologists, infectious disease docs, cardio-thoracic surgeons, etc. and determining the best course of action for Eric. It's a wonderful thing to see, the dialogue, brainstorming, cooperation. Great minds learn from listening to other great minds. Absolutely no one can be absolutely right absolutely all the time. And in medicine, sometimes there's no margin for error. The downside to the myriad of doctors here is that we've told Eric's story a gazillion and one times. There's been a steady stream of physicians at various levels of accomplishment. First the resident or fellow comes in and gets the complete history. A few hours later, his attending MD comes in and hears the same thing. I feel like typing and printing it all out and handing a sheet to everyone who walks in the door.

My northern readers may find this interesting. Here in Houston, and I've noticed it in San Antonio as well, English is a second language. Caucasians are a minority.

eric went to CAT scan today. What a major undertaking, with all his equipment in tow. The scan takes a total of about three minutes. But the prep, transfer, and return took up about two hours. The results weren't surprising. He continues to have extensive lung damage. But he continues to do well. We're weaning off the nitric oxide. We're weaning the ventilator pressures some. The plan is to have him extubated by the end of the week, if not sooner. This afternoon, the doctors, on advice of the cardio-thoracic surgeon, took a huge leap and put both chest tubes on water seal, meaning they turned the suction off them, aware that this likely would collapse the lungs to some degree, that Eric might feel some pain and become short of breath, that his oxygen saturation would fall. As long as it didn't drop below 88%, they were okay with that. They ordered a chest X-ray for one hour later. The rational was that possibly, even likely, it's been the constant suction all along that's been keeping these leaks in the lungs open. We'd prefer the leaks heal on their own rather than close them surgically . Bob and I, and especially Eric, were apprehensive about this. We tried this once in Lake Charles, to see if he could go to CT scan without the suction, and Eric immediately felt pain and his O2 saturation plummeted. That did happen today, initially. He felt some pain, but they gave him a pain med. His SaO2 dropped to 88, but only briefly. Then an amazing thing happened. It started rebounding. His SaO2 rose to 98-99%. His respiratory rate dropped from 40 to 23 or so. The pain subsided. And he looks more comfortable now than I've seen him in weeks. Who knew? And guess what? We've got a room in the Ronald McDonald house again tonight!

Home Away From Home Orientation

Bob and I are learning our way around. Texas Children's is huge. Twenty one floors, 471 beds. the ICU alone has 31 beds. I've found the food court, the gift shop, the chapel, the mail box, and I know where the car is in the garge relative to the ICU. Not being able to settle and sleep in Eric's room, and not having a "hospitality room," I feel a bit like I'm camping . . . trudging to the public restroom to brush my teeth and washing my face with paper towels. After trying to sleep in that waiting room last night, I've considered sleeping in the parking garage in the third seat of the van. Then I'd feel like I was camping on a rainy night with a leaky tent, escaping to the car. But tonight, I'm showering and sleeping in the on-site Ronald McDonald House. Woo-hoo.

Eric has had a good day. We 're weaning a bit on the vent. Current settings; PSV 26, CPAP 10, FiO2 .70. His SaO2 is 98% at the moment (I had to look twice) and an end-tidal CO2 monitor says 40. An earlier ABG PCO2 was 50. (Does anyone remember 120 just yesterday?) He's still sedated but not totally out. He's communicating well. On the downside, his blood pressure is way too high, but the docs want to see if it will come down by itself because he's auto-diuresing (peeing) significantly. He had sonograms of his arms, legs, and heart today. Legs were normal, arms had a few small venous clots, likely due to all the IV insertions/attempts over the past month. The heart report isn't back yet. Tomorrow is a CAT scan.

Texas Children's Hospital, Houston

The Kangaroo Crew arrived earlier than expected, around 12:30. They're a nice group of guys -- one doctor, one nurse, and two respiratory therapists. Packing Eric up looked to me, an anxious observer, a logistical nightmare. All those wires, tubes, and tapes. But the guys were confident and competent, and after two hours of fussing with this and fiddling with that, Eric was in the ambulance and on his way to Lake Charles' Chenault Airport.

We crossed over the Sabine River into Texas; Eric and Bob flew over and I crossed the bridge, driven by my good friend Leslie. Poured down rain nearly the whole way, and we sat through at least two traffic jams. Another good friend, Susan, drove my car, so the two of them drove back together.

Eric tolerated the flight well, and has settled into his new room, coincidentally ICU 17, on the third floor, which kind of makes it 317, which is the the exact same room number he left earlier today. It's quite different here. Eric has a large corner room with giant windows on two sides that overlook downtown Houston. The blinds are pulled up, and I imagine office workers in nearby buildings getting quite a view during patient baths. There's no hospitality room or guest trays three times a day. And security into the ICU is strict. You have to enter ICU through a waiting room. Then through a hand washing room. Then through a locked door that's only unlocked after you display your visitor badge. Only two visitors at a time. The staff are very friendly, and so far don't seem to mind our incessant questions. We can't sleep in his room, but supposedly we can sleep in the waiting room. They've got some pretty comfy-looking recliners. We'll figure it all out.

Transporting to Houston

Eric had a quiet night, but in the still, his PaCO2 crept up to 120, and he had more problems with oxygenation. He continues to have a stubborn fever. Otherwise, he's stable, and it's for that reason that we're going to Texas today. Because who knows what tomorrow might bring. The call hasn't been made to set the jet engines in motion. That has to wait till Eric's doctor comes in. But the transport team coordinator told us last night that if he gets the call in the morning, they can be here by noon. So please, however, wherever you worship this morning, pray for safe travel and wisdom for the doctors and staff at Texas Children's Hospital. Thanks so much.

Waiting on a Saturday

Not a lot to report today. Eric continues to be "stable," with the same ongoing issues. We fuss about a climbing PaCO2, and worry about a decreasing PaO2. The plan remains for Eric to go to Houston on Monday. Bob and I wish it could be quicker, but honestly, if it were quicker, it would mean that Eric was in a more desperate critical condition, and we don't want that. The docs in Houston are currently reviewing Eric's massive chart and need to make a plan before they take him over there. And we understand that. We want this transition to be orderly and without urgency. But that doesn't dissolve the brick in the pit of my stomach.

The pathology report, garnered from the lung tissue samples sent from Eric's operation, came back yesterday. The report ruled out everything possible, except "inflammation," which we already knew. So we still don't have a diagnosis. For lack of a better idea, the doctors have become increasingly open-minded to our theory that this is somehow all related to the bactrim.

As Bob and I tried to eat breakfast this morning, we talked about all the different things that have happened over the past month, and how, had we simply made other decisions at any number of different forks in the road, Eric's situation might be different right now. Starting with, If I hadn't taken him to the dermatologist. If she hadn't changed his antibiotic to bactrim. If I'd taken him to the doctor sooner. We didn't have a choice regarding hospital admission. We were two blocks away at the Children's Clinic. Eric needed to be admitted ASAP. And this is where they send their patients. But other decisions, like whether and when to change doctors, whether and when to go to Houston, etc. Eric's night nurse last night couldn't help but twist the knife and say, "I would have sent him two weeks ago." Thanks. So often in situations like this, in life in general, without being able to see the future, it's impossible to know the best option. And how does one live without regret? People say, "How could you have known?" and "You can't second-guess yourself," and "What's past is past, let's deal with the present." Yet regret seems to be as natural a human emotion as fear or joy, despair, hope. Anyway, I'm anxious to get to Houston. And hopeful, optimistic, that Eric will get better there.

Houston Update

Just an update on the plan to go to Houston. Dr. Jordan spoke with a doc in Houston, who seems to be okay, even impressed, with what's happened so far in Eric's care, and had no suggestions for the time being. He is happy with where Eric is at regarding ventilator settings and vital signs. We are currently sending all Eric's records to Houston for them to review, and the plan is to keep Eric stable over the weekend and transfer on Monday.

Kangaroo Crew Transport

We'd had high hopes that Eric would improve overnight, but he seems to have deteriorated. He's not oxygenating as well. He has a fever. We tried to wean him off the nitric oxide and did make significant headway, but we had to up the FiO2 (fraction of inspired oxygen from the vent) to compensate. He's at .85 FiO2, still PSV 35, CPAP 10. Yesterday, we'd brought up the possibility of merely consulting the Kangaroo Crew transport team out of Texas Children's Hospital. Just to see what they thought. Just to have as much information as we could to be sure we're doing everything we can. Going to Houston isn't our first choice. Naturally, we'd prefer Eric get better right here in Lake Charles. But we'll do whatever is best for Eric. Today, that's looking more and more like going to Houston.

So . . . prayers for wisdom, safety, peace, continued healing. This is definitely the scariest time yet.

Stability

We had a little bit going on this morning. Eric prefers very small changes made when it comes to weaning, especially off the ventilator. And I think he may have felt a little rushed this morning. But we've had a very quiet, calm, comfortable afternoon/evening. We're successfully weaning off the nitric oxide, and Eric hasn't tuckered out on the CPAP (10)/PSV (35) ventilation mode. I'm hoping we'll drop those pressures some tomorrow. He's sitting at .70 FiO2, but that's okay, while we wean the nitrate.

Just FYI, the time on my posted blogs is not accurate, at least not in Louisiana. I'm not sure what time zone the blog thinks it's in, but it's not central time. The time here is 8:56 PM. We'll see what the blog post time is.

I want to thank all of you for the encouraging comments you all (notice I haven't started saying y'all yet) leave on this blog. They are so helpful to us, to know that so many are out there supporting us and covering us in prayer. If it weren't for your comments, emails, cards, phone calls, visits, etc., after 4+ weeks here, we would start to feel quite isolated. So, thank you.

One Day at a Time

Eric was stable overnight. Dr. Thompson would like to take steps to wean Eric off the ventilator. Guaranteed, this will be a slow process, but we'd still like to see it happen sooner rather than later. Eric is now on the mode of ventilation where he initiates all breaths, but then is given a boost from the vent with each breath (PSV/CPAP) Right now, he's breathing pretty fast, and his SaO2 is on the low side, so please pray that he can be comfortable and his SaO2 will go up.

Glimmers of Hope

We're seeing glimmers of hope. Once the doctor got here, he tweaked the settings on the vent a bit, gave Eric two units of blood, and added nitrous oxide through the ventilator. These actions had a myriad of results, most notably, brought his SaO2 to 100%, so we were able to decrease the FiO2 from 100 to 75%. And the PaCO2, which later this morning hit a scary high of 180, has dropped to 70. So, while far from out of the woods, we're encouraged and hopeful. You have no idea how much all your thoughts, concerns, and prayers mean to us. Thanks!

Precarious

Eric has been "stable" through the night. But it doesn't seem very stable to me. It seems very precarious. He's not ventilating well at all. His vent settings are PSV 35, PEEP 8, FiO2 .90, RR 35. His peak pressures are high, around 50. On that, his PaCO2 is 124, PaO2 67, pH 7.1something, SaO2 88-91. To my non-medical friends and readers, it's all bad. Yesterday, prior to surgery, his SaO2 was 100 on a 3 liter nasal cannula. The surgeon reported his SaO2 was 100 and his PaCO2 was 40 throughout surgery. What happened in recovery!! We haven't seen his morning chest X-ray or his doctor yet this AM, who happens to be off today but we're hoping he comes in anyway. But, needless to say, Bob and I are extremely anxious, worried, exhausted. Because they're so busy with him, the nurses ask us not to be in his room except for an occasional "peak." Last night was the first night since admission that either Bob or I wasn't with him all night. We promised him we wouldn't leave him. Of course, he's heavily sedated right now, but he still may know we're not there.

Post-op PSS

As I alluded to in previous post, Eric is not doing well post-op. He's not ventilating well. His lungs don't want to do their job. Your prayers mean everything to us.

Post op PS

Bob and I just peeked in at Eric. The nurses are still too busy with him to allow us in, but I noticed his SaO2, his oxygen saturation, is only 88%. Not encouraging. Please pray for a good recovery for Eric.

Marathon

Eric got some much-needed sleep last night and was quite calm most of the night. He awoke around 3:00 though and couldn't go back to sleep. So we had many hours of waiting for morning, waiting for anesthesia to come get the surgery ball rolling. We were expecting them around 6ish, but they didn't come till around 7:00. Eric was pretty anxious by then. I, oddly, was very calm throughout the morning. Concerned, naturally, but peaceful. I knew this needed to be done for Eric to get better, so I was cool.

That is, for the first 3-4 hours. We expected the surgery to last 2-3 hours. Around two hours in, the surgeon came to the waiting room and informed us that Eric's case was more complicated than he expected, the lung damage more extensive than anticipated. And it would require "hours." He'd have to remove the entire right upper lobe and about half the right middle lobe. In addition, the case was complicated by the discovery of a rare fourth lobe in his right lung. Doc said it occurs in about 1% of the population, and in all his 20+ years of cardio-thoracic surgery, he'd only seen it once before. But this anomalous lobe also had to come out, and made the surgery both more difficult and time-consuming. In addition, Eric had no natural fissure between the middle and lower lobes, so the doctor had to create one. All very strange. The second half of the surgery, my calm demeanor morphed into a tight knot in my stomach.

Eight hours in the OR. A long anxious time. We caught a glimpse of Eric as they wheeled him back into ICU, but the nurses won't let us in until they get him settled. The surgeon, Steven Howe, assures us Eric did great, he's okay, and he should be able to breath so much easier now.

We've been here in the hospital four weeks today.

Surgery Tuesday Morning

We just spoke with the thoracic surgeon. He's "impressed" with Eric's CT scan, as in he's never seen anything quite as unbelievable in someone so young. Nearly, if not all, of Eric's right upper lobe is obliterated with blebs (large air sacs, instead of the normal microscopic alveoli), and will have to be removed. But he's optimistic that Eric has enough viable lung tissue that he should be significantly improved after the surgery. The left upper lobe has significant blebs also, but not nearly as "impressive" as the right side. They'll likely have to operate on the left side as well, but we're taking care of the right side first. First thing tomorrow morning. Please pray for Eric to sleep tonight. That's been a problem. And for wisdom and skill for the surgeon tomorrow morning.

I didn't sleep well last night, which is nothing new here in the hospital. Often times, I can't sleep because I can't stop praying long enough to rest my mind. Sometimes I'm praising and thanking God for answered prayers, for signs of improvement. Other times I'm anxious, scared, and praying for healing, for Eric's safe-keeping. Last night was the later. After watching him struggle with shortness of breath all weekend, I anticipated a whole new set of issues this morning when Dr. Thompson came in.

Not surprisingly, Eric's morning chest X-ray showed what appeared to be a worsening pneumothorax (air outside the lung) in the right upper lobe. And the left didn't look much better. Dr. Thompson desperately wanted to take Eric to CT scan. Because of the chest tubes needing to be constantly attached to suction, we couldn't just go, but had to borrow portable suction set-ups from a local ambulance service. The trip to CT went without a hitch. And Eric was thrilled just to get out of this ICU room, if only for a short time.

Getting this CT scan has proved to be pivotal in Eric's care. Instead of the pneumothoraxes the Dr. expected to see, it seems that the air in the right upper lobe is actually huge blebs, which are large air sacs caused by destroyed lung tissue. Nothing is definite yet, but the preliminary plan is to do surgery to take out this destroyed lung tissue so the rest of the lung can expand.

Again, we're reminded, we are on a long road. Eric continues to be frustrated and depressed. He just wants to get better. Please pray for patience and wisdom for the doctors.

ICU Blues

Our biggest concern today, in addition to Eric's weight (he hasn't gained any), his appetite (he's still not eating a lot), his strength (he's still so weak) and his on-going though tolerable shortness of breath, is Eric's state of mind. It's not surprising that he's depressed, who wouldn't be? He's been in the same room, looking at the same walls, away from his home, his own room and bed, his brother, his friends, school, soccer, quiz bowl, band, church, everything he loves, for over a month now. I'm not saying he hasn't made progress. Certainly, he has. It's just hard for us, being here every day, and especially hard for Eric, to see the small changes because it's happening so slowly. We all need patience. Eric's still too weak to entertain many visitors, but he does enjoy a few regulars. His math teacher and soccer coach come and give him encouraging pep talks. And he did request a good friend to come visit later today. Please pray for Eric to have the physical as well as mental fortitude he needs to get through this, to recover and heal, and to return to some sense of normalcy.

Plan for the Day

Eric is less short of breath today, since getting a new chest tube last night. But he fatigues so easily. He's been increasing the length of time sitting in a chair each morning and afternoon, this morning over an hour. And he's completely exhausted afterwards. After a rest, he played a game of cards with Bob. Then he's exhausted again. His appetite still isn't where we'd like it to be, still can't eat very much. Dr. Thompson asked Eric this morning, "So what's your plan for the day?" Eric said, "PT and eating." Right answer.

Chest Tubes

Eric has had quite a time with chest tubes and their placement since admission. Chest tubes are essentially hoses that drain displaced air and fluid from the space around the lung. Without these tubes, if there is air and fluid around the lungs, the lungs can't fully expand. Eric has had two chest tubes on the right and one on the left for quite some time. But despite the two on the right, Eric's chest x-ray showed too much air outside the right lung. This caused Eric to become increasingly short of breath and increased his heart rate throughout the afternoon and into the evening. Since they obviously weren't doing their job, Dr. Thompson decided to take out the two chest tubes on the right, and replace them with a new one. But a post-procedure chest x-ray to confirm placement and function showed no change. It wasn't in the right spot. So, that one came out and in went another one. This makes six total chest tubes since Eric's admission. But already, his heart rate has come down and he's less short of breath.

Boot Camp

Here's a smiling Eric yesterday, one day post-extubation. He slept fairly well last night, and continues to work hard with the physical therapists, aka drill sergeants. I told him he's in boot camp, and it's all about gaining back his strength now. For those of you who know Eric, you can see he's lost a lot of weight -- about 25 pounds this past month. Since he had no fat on him to begin with, that's all muscle loss. Eric is very weak. The doctor says "Calories, calories, calories!" Eric is trying, but he doesn't have much appetite yet. Doc ordered some medicine to increase his appetite, as well as some metabolic steroids to coax back some muscles. A nutritionist just came in to tweak his menu and order healthy foods he likes. Bon appetit!

God Answers Prayers

Our pastor, Fred Seay, came to visit Eric this afternoon, as he has most every day and most days twice. He was as excited as the rest of us that Eric was off the ventilator. He had promised Eric he'd dance a happy dance once the tube was out, and he was true to his word. Pastor Fred told Eric he couldn't wait to tell everyone the good news. Eric, whose reluctant vocal cords have yet to realize they can work now, wrote on his dry erase board, "Why don't you write a sermon?" Fred said, "Great idea, I think I will." I asked Eric what he thought the theme of the sermon should be. Eric shakily held the pen and wrote, "God answers prayers."

Amen

A Banner Day in Lake Charles

Just a quick post to let you all know Eric is off the ventilator and breathing on his own! He looks great. Very comfortable. Three weeks today since admission. Three weeks on the ventilator. Three weeks not hearing his voice, watching him suffer, wondering if he'd get better. And now here he is, smiling, eating ice chips, and breathing with only a nasal cannula for O2. Our prayers have been answered. Now we begin the long road of re-gaining strength and full recovery. Thank you all for everything. We couldn't have gotten through this without your support.

We're Almost There

I'm a little late with today's post because I wasn't sure what I'd be writing. Eric had a great night last night. His blood work (ABG) was excellent this morning. PCO2 58 (down from 81 yesterday), PaO2 106. Eric did great with his physical therapy this morning. The doctor came in and was equally impressed. We started a two hour trial of CPAP 5, PSV 5 (minimal support from the vent) with high hopes of extubation. But Eric did get short of breath, and his PCO2 rose to 71. The doctor himmed and hawed, he was really hoping for extubation today also. But he opted for another day of rest and strengthening. We'll try again tomorrow.

Back to Church

Bob and I both went to church this morning, I to the early service, Bob to the late service. It helps that our church is just a short ways down the road from the hospital. Today was the first I was able to attend church since Eric became sick, nearly a month ago if you count the days he was sick prior to hospitalization. I became emotional just driving to the church and I thought, "What am I doing? I'm going to cry through the whole service." And I did. But it was okay. It was good to be there. And good for our church family to see us there. They've all been praying for him, and seeing us there gave them assurance that Eric is getting better.

More of the same today. Same ventilator pressures, alternating back and forth each hour. More strengthening, more resting, more healing. We're hoping, probably too optimistically, that he can be extubated (off the ventilator) tomorrow. But when I asked one of the the respiratory therapists his opinion, he cautiously said, "Maybe sometime by the end of this week." Frustratingly, Eric's PaCO2 continues to rise a bit each morning, 84 this morning, and his PaO2 was 90. We're guessing he's simply getting comfortable with the higher PaCO2, thus breathing more comfortably, slower, and less deeply, because his body is metabolically compensating his pH with bicarb.

We did have some good news yesterday. Eric's been without fever for several days, his white blood cell count is down, all his cultures came back negative, so he's no longer on any antibiotics. And he's been on an awful lot, since he's been here. The doctors have yet to determine what caused all this, likely either a viral infection or a reaction to the bactrim. But they put him on all the big gun broad spectrum antibiotics from the beginning just to cover all bases. They're saying now that we may never know for certain how this all started. But whatever the assailant was, it ate my son's lungs for lunch, chewed them up, swallowed them, and spit them out. Even when he gets off the vent, will his lungs ever be the same? Will they ever completely heal? As a respiratory therapist, I used to do pulmonary function testing, and I can't imagine what his PFTs must look like right now. Will he, as first chair trumpet in both his middle school and the district honor band, ever play his horn again? Will he ever run down the soccer field again, calling out signals to his team? At the moment, when we see how his leg muscles have wasted away, we wonder how he will ever walk again!

But he continues to get stronger, little by little, day by day. Physical therapy does see improvement. What a long, slow road. Thank you all for your continued prayers. We see little miracles every day.