BabyBug is back on the vent along with heavy sedation. I want to say the extubation was good while it lasted, but it so wasn’t. Leah’s vent settings were super low, but when they took her off, she was really struggling to breathe, and the vast majority of interventions that would have provided her with some breathing support were ruled out because of the potential for damage to the surgical site. So they were basically just watching her struggle to breathe and not being able to do a whole lot. She had some medications and some extra oxygen but it wasn’t enough. So they woke me up at about 2:30AM to let me know they needed to take her downstairs to be reintubated because her chest x-ray looked pretty lousy. So that’s where we are. They need to make sure the surgical site is all good before they can extubate and know they can safely intervene if she needs help.
Monthly Archives: November 2013
Rasputeeny
Leah is SO RASPY tonight. It’s horrible. The respiratory therapists are having a hard time with her because most of the interventions they would usually recommend are not allowed in Leah’s case because of the healing surgical site. Everything from extending her neck or patting her on the back to administering certain treatments and medications – these things would all disturb an esophagus that is newly sutured to a stomach. So she sounds and looks horrible. They keep telling us that she is better than she looks since her numbers are all pretty good, but while we can digest that rationally, it is still hard to see her this way. It doesn’t help that the low-grade fever she had last night and part of today has increased to over 100 degrees this evening. She tends to run low like her Mama (not quite as low, but still) so I hear 100 degrees and alarms go off. They are going to give her some IV Tylenol. And morphine. And Ativan. I would very much like for this part to zip by so we can get to the part where we get to scoop her up and see her smile.
Wednesday Update – Newer and Better
So, I have good news and I have bad news.
The bad news is that Leah’s breathing is atrocious right now and her sound effects have progressed from a kitten purring (super-raspy) to a puppy begging to let in (squeaky inhalation) to a flock of seagulls (the birds, not the band).
The good news is that Leah’s breathing is atrocious because she is off the vent. They took her off of the heavy sedation earlier today and it took all of like, ten minutes for her to wake up (the doctor came back and was surprised to find her awake – he thought it would take her a couple of hours to wake up!). So we had an awake but drugged baby for a little while, but after she was extubated they waited a bit and gave her more meds to calm her down. She is still on a low dose of the heavy sedative.
Leah is getting 100% oxygen through the nasal cannula, but her trachea is understandably swollen, and she has tracheomalacia, so it’s also not hardened like it should be. So she’s really struggling to breathe through the uncomfortable trachea. But she is breathing, and her numbers look good. The hope is that she will sound better as the swelling goes down. She went through something similar (though not as horrible) when she was intubated during the Great Mic-Key/Mini Change-Up, and while it was a hellish night, she did get better. I’m assuming this will take a little longer since she was intubated almost a week, but I am telling myself it WILL get better soon.
It’s a lot more stressful being in the PICU when your kid breathes like a flock of seagulls. We’ve been spoiled the past few months. I’m glad we reminded ourselves of that going into this procedure.
A rare wide-awake-ish moment right after extubation and before more sedation.
Yeah, that’s more like it.
Don’t be fooled by these open eyes – the kid is pretty out of it.
Mostly she just looks stoned. Largely because she’s pretty stoned.
But she’s still awfully cute, isn’t she?
Wednesday update
It looks like BabyBug gets another day under; they started steroids today and they usually want 12-24 hours of steroids before they extubate.
Leah also has a pea-sized blister on the side of her foot, which is pretty big when your whole foot fits in the palm of your Mama’s hand. Apparently her IV slid out while they were moving her this morning and at the time the IV was in the process of administering meds.
I would like to hear an “AYE!” right about now.
Early Eyeballs
Okay, when I said I wanted to see eyeballs, I didn’t mean WHILE Leah was still supposed to be sleeping! A couple of hours ago the little stinker tried to wake up. Not like, eyes cracked open a tiny bit, but full on open (albeit bleary and drugged) eyes, trying to look around and being all, “Maaaaamaaaa, what’s going on?” I called the nurse and then sang to Leah with my hand on her head until the nurse could administer another dose of Ativan on top of the sedative she’s already getting. Oy vey, bitty Bug! I want nothing more than to look into my BabyPie’s eyes right now, but not if it means she’s going to jeopardize her sutures. OMG. Nervous Mama!
In other news, extubation “most likely tomorrow” has morphed into “tomorrow or Thursday.” So I guess we’ll see how it goes! BabyPie had a very slight fever (like in the 99s) this evening but it’s down to high 98s. Sometimes that happens if she is bundled up too much, so hopefully that’s all it was.
Tuesday Update
Well, our Ninja Rockette almost kicked the tube to her vent last night. Little stinker! She does kicks and splits whenever she regains a little bit of consciousness. Her stats are good enough that they could have extubated her this morning, but they want her to have one more day to rest under heavy sedation – I’m guessing because she is the Energizer Bunny when she is awake. Can’t wait to see her little eyeballs! I miss my BabyBug!
Oh hey – surgery just came by and took out the repogle. Yeah, that’s right – no more repogle! So long, sucker (haha, literally)! BabyBug win!
Monday update
The surgeons took Leah off of the paralytic this morning, but she is still under heavy sedation. They just gave her some Ativan because even while sedated she was kicking and squirming and making grimace-faces. Poor kid. She cannot be feeling very well. Sedation is a good thing. She is retaining a lot of fluid and they just added a third daily dose of Lasix. The poor kid is so puffy in the face.
Leah also seems to have developed a pressure sore at the back of her neck. We just found that a little while ago so there isn’t much to update there.
Sunday update
Not much has changed. Leah is still under heavy sedation and hourly paralytics. It doesn’t sound like the dosage has changed again, but she definitely starts stirring toward the end of the hour. Even as I type this, I can see her hand twitching as 5PM (the next dose of paralytic) approaches. (I just had to go get the nurse to administer the paralytics almost 10 minutes early because she was really starting to move. Oy vey. This child.)
Earlier today Leah started desatting a bit (reduced oxygen saturation in her blood) and it appears she had some fluid in her lungs. They did some interventions and a chest x-ray, and she seems to be back on track now. Her O2 from the vent had been increased from 24% to 30% but it’s down to 25%.
The plan is still to start weaning her off of the paralytics tomorrow, but she may still be under sedation until they take her off the vent. We will have to see how things go and how much she moves when she’s just under sedation without paralytics. It may be that they keep her down a little longer. The nurses move her arms and legs so that she gets some circulation and movement, and the surgeons just cleared them to move her a tiny bit from side to side.
Will keep you posted when there is something to update.
The Post-Op Blog
SO! Here is our longer update of yesterday’s events.
All things considered, Leah had a pretty good morning yesterday. She did spend a good half hour scolding us for not serving breakfast, but I’d be pretty mad if I had to skip a meal too. Wait. Ha. Let’s make that Mandy. Mandy would be pretty mad if she had to skip a meal too. (I seriously wrote that without thinking.) Considering that sometimes she starts getting angry when her food is not EARLY, I’d say things could have been a lot worse. She was generally pretty smiley for most of the morning. It’s like she knew it was going to be a good day. She fell asleep before they came in to prep her for transport to the OR, so she slept through most of the trip and was overall very calm. The last time we went down to the OR with Leah she started crying once we got downstairs. This time she was pretty chill. She is such a good baby. We were definitely more agitated than the baby was!
After they rolled Leah away at around 1PM, we met my dad, Mandy’s mom and cousin Beth in the waiting room. The surgical team’s nurse practitioner had told us that they should know within about an hour and a half how they would be proceeding, so it was really that first major period of uncertainty that we knew would be the hardest. We couldn’t stay in the waiting room. That room is just too tense and anxiety-filled. So instead the five of us had a nice lunch at a nearby cafe and then killed a good 30-40 minutes browsing in a little shop across the street. It was the perfect distraction, although I’m not sure my dad enjoyed it quite as much as the four ladies did. 🙂 Then Beth and I headed back to RMH for a little bit and the rest of the group went back to the hospital to wait for news.
It turned out to be more like two hours before we heard any news, but the news we got at that point was worth it: They told Mandy that they were pretty sure they were going to be able to do the primary repair. OH EM GEE. That is not the news we expected, but it was damned good news! We’ll take it! When Beth and I got back to the hospital, we all waited for them to bring Leah back. Shortly after we arrived, the nurse told us they would be bringing Leah up in about 40 minutes. That made us pretty nervous – or at least it made ME nervous. They had told us the Foker procedure would be pretty quick, a few hours, but that if they did the primary repair it could be as many as five hours. At this point it had barely even been three hours. I was sure they’d had to resort to the Foker procedure. At around 4PM the surgeons came in with big smiles on their faces and gave us a thumbs up. They were able to connect the pouches! Holy moly! Good news! They showed us a picture (yes, in full color) of the two pouches before they stretched them out, and then explained how the procedure had gone. They were very pleased with the outcome. Everybody was very pleased with the outcome. “Very pleased” is like, the understatement of the century. Yeah. Leah returned to the room about half an hour later. Yay!
So the pouches are connected. There is a good amount of tension on them because they really had to stretch them to get them together, but they said they have ways to distribute the tension so that it’s less likely to tear. Leah has to be sedated and paralyzed for at least three days – probably until Monday – because if she moves she could tear the sutures. In about a week they will run a contrast study to confirm that everything is still intact and that there have not been any tears, leaks or strictures. At that point, if all goes well, they will be able to begin the next step of Leah’s recovery: teaching Leah how to feed orally. As far as I know, her release from the hospital is still anticipated to be at least a month, as she has to recover and be monitored now and also once she begins to feed. But yesterday was a huge step in the right direction.
As I mentioned, the biggest concerns in the coming days are tears and leaks. Another major concern is pneumonia. The last major concern right now is that Leah needs to stay paralyzed and unconscious for the next few days. Children with Down Syndrome can have a high tolerance for pain medications and sedatives. Last night Leah tried to open her eyes a couple of times when she knew we were next to the bed. They have already had to increase her dose of Fentanyl and also add another sedative on top of that. The paralytic is administered every hour, and I’m told that as she gets closer to the end of the hour she starts stirring a little bit. Today’s nurse said the sedatives and paralytic are barely doing their job. She will need a lot of monitoring over the next few days to make sure that she doesn’t wake up. There is a chance that they could have to raise the dose again (and again) and eventually her body could become addicted to the sedatives, which would mean she could go through withdrawal when it is time for them to stop. We’re hoping that because she will be under for such a short period of time we won’t need to get to that point. Let’s hope not!
That’s about all the news we have at this point. I just want to take this opportunity to thank you SO MUCH for your comments and messages and texts and voicemails and other words of encouragement yesterday, for changing your profile pics to support Leah, and for all of the positive thoughts and prayers and energy being sent in Leah’s direction not just yesterday but throughout her hospitalization. (Also for the delicious sandwiches for dinner. You know who you are – thank you!!!!)
All of you really made yesterday SO MUCH EASIER to get through. It was such a comfort to wake up and see our kid trending in my newsfeed. There was a lot of, “OH, look what X posted! Awwww, look at this text from Y! Awww, did you see Z’s comment?” going back and forth between Mandy and me. Also… I may or may not have had my nose buried in my phone through most of lunch, most of the walk to and from the restaurant and RMH, most of the rest of the wait for BabyPie to get out of surgery, most of the time they spent setting her up once she was back, when we couldn’t be underfoot… I’m just saying. Your constant support yesterday kept us from going totally crazy obsessing over every minute we didn’t hear from the docs. And I KNOW that Leah felt all that love being sent out to her. I bet she even felt it in the morning. Maybe that’s why she was smiling so much. 🙂
Okay… pictures! There are not too many, but here you go! BTW, Aunti Staci has been spearheading the t-shirt project and we should have the shirts by the end of the weekend!! So excited for that. We will keep you posted and you’ll hear from us soon if you requested a shirt.
This is the smallest surgical gown they had. It almost fits her.
Leah slept through all of the prep!
This is what LeahBug looked like yesterday afternoon when they brought her back. I don’t think she had this many wires and tubes even when she was first born!
A little gift from our friend Jennie. It brought a big smile to our faces after a really difficult day. Thank you, Jennie!
BabyBug this morning. She’s so beautiful even with all these tubes attached.
Update again!!!
The surgeons just came in. They were able to connect the two pouches without having to get to the Foker procedure. This is GOOD NEWS. Leah will still be paralyzed and under heavy sedation until about Monday because there is still a lot of tension on the two ends (they did have to stretch them out a lot to get them together). At this point the biggest things we watch for are leaks at the surgical site and pneumonia.
In about a week they will run a dye study to make sure everything is still intact, and at that point they can begin to attempt oral feeds and therapy.
WHEW.
Thank you guys SO MUCH for all of your support and encouragement today!!! Please keep sending positive thoughts and energy in Leah’s direction these next few days as this is a critical time in her recovery! OMG. Let’s get started on this next part of Leah’s journey home!!
