Since we posted yesterday, lots has happened. And just so everyone knows: if you are signed up for email notifications, you will receive an email once per day when the post is first published, but then we will continue to make updates to the same post throughout the day and you will not receive more emails. You simply have to visit the website and refresh your browser to see if anything else has transpired during the remainder of the day. So for those of you who did not read the updates yesterday, you may want to!

Thanks to so many people that contacted us and networked to help out with parking the RV. As we wrote about in yesterday’s updates, we ended up having a couple of choices by the end of the day. And here is the most amazing thing: not only did the Orange County First Assembly of God provide a place to park for as long as we need, but there is 30amp electrical. Even better yet, they offered to let us refill our water this morning. When Josh explained that we would probably need to dump our tanks before we refill the water, the maintenance manager stated that we can dump our tanks at the church too! Now, how many churches do you know that have all these amenities for an RV? The Lord truly takes care of every detail.

Now, all the updates on Ella. As of yesterday when I wrote the post, Ella continued to be stable. Her fever had started to subside. The only new challenge that emerged: Ella started trying to dance a little too much! She was thrashing around so much that it was taking 3 adults to hold her down. The day nurse had given her boluses of fentanyl and versed and even increased the amount on the continuous drip. But as we headed into the evening hours, it became clear that Ella was becoming more lucid and wanted to get up and dance! It actually still seemed like she was itchy, even after we discontinued the antibiotic, so we are not sure if that was the true cause or not. The nurses can give Benadryl every 6 hours, which Ella really responds to, but then it is short lived. Finally after everything was not working, they discontinued the versed and put her on a drip of Propofol (Diprivan) @ 50 mics per kilo. Propofol is considered a general anethestic that is usually used to put kids to sleep for surgery.

The Propofol seemed to work great. She fell asleep hard and was not moving at all. Her heart rate has trended down the last couple of days from as high as 150 and is now resting in the 80s. All was great until 3am when Ella gave everyone a scare. In retrospect, they are calling it a “pulmonary hypertension spell”. Out of nowhere, she started thrashing and crashing. Her sats went down to 27 with the heart rate in the 50s. They took her off the vent and bagged her. When bagging her, they felt resistance (pressure). She did recover fairly quickly with her saturations but it took several minutes for her heart rate to climb back up to the 80s. Other than just her pulmonary hypertension, they cannot point to any other stimulus that caused the episode.

It came to light during this 3am episode with 10 people in the room as they were diagnosing, that her echo yesterday did show signs of pulmonary hypertension and mild tricuspid regurgitation. I was not aware of this fact until this time, but it started to make the picture more clear. For those of you that do not know, Ella does not show pulmonary hypertension via echos. We spent all those months in the NICU and they even told us toward the end of our visit that they were shocked, but that Ella does not have pulmonary hypertension. Then one day in the NICU toward the 5 1/2 month mark, one echo showed it. So, they gave her sildenafil and we had a new child. It was one of the biggest pieces of the puzzle to come together, making it possible for her to leave the NICU after 6 months.

When we transferred care to Denver, they ran into the same thing. She was taking sildenafil regularly, however they could never see the pulmonary hypertension on an echo. When they decided to take her off sildenafil to see what would happen, we ended up in the PICU with tricuspid regurgitation. This means that some blood leaks backward into the right atrium, increasing the volume of blood there and resulting in less blood being pumped through the heart and to the body. So, it was a bit unnerving that they are seeing both of these via the echo yesterday although it might explain this middle of the night spell. Once this happened, they decided to double the nitric oxide to help with the pulmonary hypertension. Also, they increased the Propofol to 75 mics per kilo, hoping that she would not stir again.

Ella liked her lasix and was negative for the last 24 hours with urine output by 155. So not as much as yesterday, but going in the right direction from a fluid loss perspective. Her chest xray was at 6am this morning. On rounds, they discussed that her chest xray looks improved but she still has some fluid on board. So when they came up with the plan for the day, it all revolved around extubating and take her off the vent tomorrow. We’re very excited because we’ve missed the Bun tremendously.

The docs decided that before they extubate her tomorrow, they would like to try to start giving her sildenafil again via g-tube. The surgery team gave the “ok”, but noted that unless sildenafil is absorbed via the stomach, it may not be effective given that her intestines are still shut down. The nurse gave the sildenafil and clamped off the g-tube and NG tube for about an hour to see if it would absorb.

When surgery made rounds, they took off the dressing for the incision. I was expecting a lot worse considering that the dressing was so large. Instead, it is midline but smaller than her other incision. And it appears that it is healing nicely.

Ella is still on a heparin drip for anti-coagulation. If she makes progress taking sildenafil via g-tube, they may try switching her back to aspirin and Plavix (her normal meds). For now, we’ll have to wait and see. Ella is scheduled for another echo tomorrow. It will be interesting to see if the increased nitric oxide and/or sildenafil via g-tube has decreased the pressures and reduced the amount of pulmonary hypertension.

In order to help with the acute pulmonary edema, the docs ordered Diamox (another diuretic). Ella was taking Diamox during her NICU days along with Lasix and was discharged from the NICU on Diamox and Bumex. Back then, Diamox did seem to help with getting her more dry.

They decided to give Ella a steroid today – Methylprednisolone (Medrol). It prevents the release of substances in the body that cause inflammation. They are hoping that this will help her abdominal healing.

We’re thinking tomorrow might be a big day for Ella. Please pray that her lungs are strong enough to be off the ventilator and that we can keep enough pain meds in her to keep her comfortable while awake.

Psalm 9:10 (NIV)
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

UPDATE 7:15 PM – By Tina
Ella is continuing to have some strange episodes. She’s had two this afternoon and early evening since I last posted. All of a sudden, she will start “tummy breathing” which is not something you expect while she’s on the ventilator (the machine is doing most of the work). Her breaths per minute will peak at 80 breaths per minute, saturations go low, and her nostrils flare when she is breathing quickly. She’s still sedated, so it’s tough for docs to diagnose what is really happening. One time, the nurse gave Benadryl since Ella responds to that well. This last time, she could not give Benadryl because of the timeframe, so she gave her a dose of fentanyl (pain med) to help get her through the spell. Please pray that nothing major is going on that we can’t see and that she will be successful on extubation tomorrow.

One cute thing: her nurse today was pampering her and didn’t like the sterile hospital blankets. So she went back to the donation area where volunteers from Project Linus donate blankets they’ve made by hand and found one to drape across Ella. She looks so fashionista now!