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.