The Emma Report

As Eric reported earlier, Emma was reintubated this afternoon and is back on a ventilator. While we knew this was a possibility, it is still hard not to be somewhat disappointed… She was just working too hard to breathe entirely on her own and was getting too tired. The team decided this morning that it would be better to give her a break, put her back on the vent., and let her recoup some of her strength. Emma lost several ounces in the last few days as all of her energy has been going into breathing, so hopefully being back on the respirator will allow her regain some of the weight. She also had another blood transfusion this afternoon, and Eric (who is visiting her as I type this) just called to say she is now a more healthy-looking pink colour.

Let’s hope that over the next few days Emma will rally (once again) to get past this hurdle so we can move on and get her off the ventilator for good.

Laurie called from the hospital. Emma became so exhausted that they had to reintubate her. More later.

Not much has changed since Eric’s post this morning…. Emma hasn’t had to go back on the ventilator, though she is still struggling. Her oxygen requirements have varied over the course of the day from 25-50% and she’s still receiving 20 breaths per minute from the Bi-Pap. She’s going to be given an extra daily dose of medication to minimize fluid accumulation in her lungs and the team has also started her on another med. as there is some concern she may be developing a small ulcer in her stomach.

When I visited her this afternoon, Emma still looked pale and tired from the effort of breathing on her own, but at least she was a bit more alert and had her eyes open from time to time. We haven’t been able to hold her since Thursday, so we hope she’ll be more stable and stronger very soon…

I just spoke to the NICU and while Emma’s still holding her own, she’s having a bit of a tough time. Overnight they had to increase her oxygen concentration and bump up the Bi-PAP to provide 20 extra breaths per minute. She’s tolerating feeds well, her lungs look better on the xray, and everything else is fine, so the only concern right now is respiration. At this point she appears to be at a fork in the road: If she gets any worse, she’ll need to be intubated again for a while, if she she improves she won’t.

It’s important to remember that she’s only at 29 weeks, still 11 weeks until her “due” date. She’s only been breathing on her own for a day now, and it’s hard work. It’s just going to take her some time to build up stamina. If she does need to be re-intubated, it will likely only be for a short time.

Emma’s now holding her own on bi-pap with 21% oxygen (normal room air). When I dropped in to visit around 21:30 she was sleeping peacefully. Her oxygen saturation did drop a few times, but she recovered by herself quickly each time. They’ll xray her lungs again tomorrow to see if they are still wet, but for now she’s doing well.

It’s nice to see her off the ventilator and IV fluids. Definately moving in the right direction!

Emma has been having a rough go of it today…. She’s having to work hard to breathe on her own and is all tuckered out. She was switched from a CPAP to a Bi-PAP (Bilevel Positive Airway Pressure) late last night. Bilevel means that the pressure varies during her breath cycles. When she inhales, the pressure is similar to CPAP. When she exhales, the pressure drops, making it easier for her to breathe. Unlike a CPAP device, a Bi-PAP can also provide her with an additional breath of air (currently set at 10 per minute), kind of like a “boost” to assist her in maintaining adequate oxygen.

Emma was struggling so much this morning the team thought one of her lungs may have collapsed. Thankfully, an x-ray showed that her lungs were (only) very wet, so she was given another dose of diuretic to help get rid of the extra fluid. She was still very listless when I was in to visit this afternoon, but her nurse said she was responding well to the medication. Based on the results of another blood gas to be taken late this afternoon, Emma may need to be re-intubated and put back on the ventilator. That is definitely not something we want to happen, so the team is doing everything they can to avoid it. For now, we just have to wait and see…

Emma had a big day today. She’s five weeks old, and around 2pm she was extubated and put on CPAP. I was in for a late night visit, and as of 10pm she’s holding her own. Her oxygen saturation does drop from time to time, but she usually recovers on her own without any intervention by the medical staff. All things said, this represents a major step forward and will be much better for her lungs.

After having 2 scarey apnea spells overnight, Emma was started on caffeine again early this morning (as a stimulant, caffeine will help to reduce apnea) and it appears to be working — she didn’t have any other “spells” afterwards. I was actually able to hold her for 2 hours today, which we both enjoyed!

Emma’s oxygen requirements were down to 24-28% during the day and her ventilator settings were down to 20 bpm. The team will reduce her vent. settings further to 15 overnight…. if she remains stable, the plan is to switch Emma from the ventilator to a CPAP sometime Friday. While we’ve been warned that she may not be able to tolerate the CPAP for very long (she may become too tired/weak to breathe entirely on her own) and may need to be re-intubated, even a few hours off the ventilator will be better for her lungs.

Finally, as Emma no longer needs IV feeding (she’s now on full feeds of breast milk) and is off antibiotics, her central line was removed today… it was nice to see her finally able to freely move both of her arms without wires and tape

After waiting patiently for several weeks, Eric was finally able to hold Emma this evening.

After having a difficult week, Emma is clearly feeling better today. Her oxygen and ventilator requirements are much lower than they’ve been. In fact, if she continues to be stable, the team feels she may be ready to be extubated by the weekend!!

If all goes well, she’ll be taken off the ventilator and put on a nasal CPAP device. Unlike a respirator, the CPAP doesn’t actually mechanically breathe for Emma, but provides continuous air pressure that makes it easier for her to inflate her lungs when she inhales. It is both less aggressive and less invasive than the ventilator. This will be a major milestone/big step forward for Emma as continued dependence on the respirator is hard on her already fragile lungs.

Further good news: Emma had another head ultrasound yesterday and the results were normal with no evidence of a intraventricular hemorrhage (aka “brain bleed”).

So, it was good news all around today…. hopefully the trend will continue!