Fingers Crossed!

  Even though the Drs originally thought weaning earliest Tuesday, they have decided to try doing it today. I'm happy to know they think she is mostly ready, but very nervous that if she doesn't respond the way she needs to, that she will have to stay on the machine longer. There is concern for her kidneys if she stays on and the catheter will be in longer, as well as her breathing tube... Getting her off this machine would snowball her recovery process in the right direction, so we are praying Lyla's heart will pump the way it needs to pump!

Recovery Day 6- IPV and tract infection

    Fluid draining into chest tube is back to being clear, so that's not on the radar anymore. But the fluid/mucus build up on the right side of her chest is still a concern for the Drs. They've started another treatment to loosen up the old mucus build up called IPV. In non technical terms, they hook up the machine to her breathing tube and it pump these quick puffs of air into her lungs for a couple of minutes. It looks really weird, and I didn't like seeing her chest move like that. But it's helping...
  Yesterday the nurse noticed maybe some blood in her urine. The Dr confirmed today that Lyla has a urinary tract infection. Bleh... Since she's on the ECMO and her blood is real thin, removing the catheter and inserting a new one (what they would normally do with an infection) may cause internal bleeding. Removing the catheter and letting her pee on her own wont work because of the drugs she's on, her bladder will just expand and fill up and not release. So she is getting some antibiotics.
  Weening from the ECMO probably will be Wednesday at the earliest.
  Started getting breastmilk on Saturday. 3ml. Not much at all, but they've been slowly increasing her intake and she's up to 10ml/hr. so glad she's getting something, she's much happier with food in her belly.
  Dr. mentioned something about lylas thyroid levels from one of the labs. Thyroid issues are a concern for Down Syndrome so this could be a life long concern for Lyla that she will be getting medicine for.
  With the constant blood draws, Lyla had to get another blood transfusion today.

Recovery Day 5 - lots of pee

Not too much to report. Lyla is maintaining and peeing a ton! She was at -375cc just from in the morning. Still extra fluid in the right side, but the therapies are helping. Today the fluid that collects in the chest tube bulb looked a little cloudy. The nurse thought it was probably a result from the formula/breastmilk combo she was giving Lyla, but she wants to keep an eye on it for something else. However, tonight the night nurse said it looked clear, so hopefully that has passed.
  She's squirming around more, not huge movements, but figity. Every once in awhile she opens her eyes for a split second. Sometimes after hearing my voice, which is a nice feeling but sometimes makes me sad.
  Night nurses switched the ventilator tube from the right side of her mouth, to the left.
  Echo was done and heart function looks better. We did not talk to the cardiologist regarding this yet.
  Looking less puffy. And her fingers aren't as hard either from being full of fluid.

Recovery Day 4- switching ecmo

For the most part things have been pretty stable since being switched to the ECMO. Yesterday the cardiologist reported that the kidney function looked better, but the heart function was about the same, no worse. Right now we are mostly just waiting for her heart to get a good rest and then talk about weening from the machine. The nurses (she has 2 at all times) are working constantly monitoring Lyla and her meds, making adjustments as necessary. We've heard them talking about her temperature a lot and trying to get that where they want it. Maintaining pain control, blood pressure, constant blood draws for labs, etc.
  Today we got a call giving us a heads up about switching out the ECMO. Several blood clots had formed in the lines (normal) and the risks to keep that machine with the clots outweighed the risks to switch out. Dr. Vlautin said it went well and now it's back to readjusting since switching out was kind of a shock to the body. Dr said she saw the heart pumping ok during the switch and that a was good. Her color is not pretty, but should be back to pink again soon.
  We were told before bypass was in the picture that there was extra fluid in her right lung and that they would possibly insert another chest tube to help drain. But with her being on the ECMO, her blood is too thin to try that. Today Dr. V said her right lung has collapsed because of mucous build up. They've made some adjustments and started a therapy (tapping on her chest) to help loosen the mucous and drain it that way. Since she's not moving (paralyzing drug) and coughing etc, it makes the process slower, but the paralytic drugs have been stopped as of 11am today and we've been able to see some movement (very slight twitching).
  Still really puffy, should take a few more days for that to go down.
  Echo tomorrow to check on heart and reasses where she is and a plan for weening.

Recovery Day 2

Today was a difficult day for Lyla & family. She was doing great in the morning with her heart rate gradually lowering, but the progress did not last. She quickly turned worse in the afternoon with an increasing heart rate, and halted body functions including essential urination (which she needed to reduce body fluid). As a result, the Dr.s decided it would be best to connect her to a bypass machine to give her heart a rest and take her off heart medications. This machine will essentially move her blood for her, so her heart will not have to. This would also enable her to recover on our terms, rather than before she went into cardiac arrest

After she was hooked up to the machine she started immediately urinating, so the doctors feel very good about their decision. For now she is expected to stay on the machine for 3-10 days in a sedated state. 

I didn't post a photo because it's not an easy one to look at, but were happy to share if you'd like to see her. Click the link below for photo:

Photo Here

Recovery Day 1

Recovery is not going as smoothly as planned. Lyla is having a difficult time urinating to get rid of all her excess fluids, and her high heart rate has not settled down (+/- 190-200 bpm). Because of this, she's been connected to an external pacemaker to control her rate and help get her heart back in rhythm, and is on a lasix drip to help her urinate.

Having "JET" is not uncommon after heart surgery, so hopefully she will pace out of it over the next couple of days. She is getting constant attention from nurses, her cardiologist, and even her surgeon,and the feeling is very optimistic that things will work out ok, she's just making her own pathway to recovery.

Heart Surgery

The day has finally arrived for Lyla's surgery to repair her AVSD. Our hope is that this correction will help her with a few other issues we've been keeping an eye on, including low energy, gastrointestinal issues, eye shifting, etc.

Its a day for mixed feelings because we're anxious to get her repaired, but at the same time, its a very invasive surgery and not a small thing. After arriving at the hospital at 6:00am, she finally went back to the operating room around 8:30.

It took a good 6 hours before we got to see her again, and she was heavily sedated to get her swelling down. The surgery itself went well. The surgeon let us know about a few unexpected abnormalities, including an atypical avsd formation that made it difficult to insert the artificial ventricular septum, and has resulted in a small amount of leakage. As described to us though, it should not even be noticeable to her in the future. It was also thought that her atrial septum had not formed, but it had, just in the wrong location that was partially blocking some of her blood flow. This membrane was completely removed during the surgery, and a gore-tex atrial septum was inserted in the proper location.

Our surgeon, Dr. Gary Raff, had also noticed that her lungs were not quite formed properly. Instead of being a kind of pinkish color on the surface, the had lots of little bubbles on the exterior. It does not seem to affect her breathing, and is not likely that any procedure will ever be needed.

Although we didn't do much, it was an exhausting day, and we were happy to see our little girl again, and so happy for all the prayers and fasts that helped make her surgery a success.