Ella had a rough day today, and an even tougher evening. Ella has seemed more agitated the last few days, and when she does get upset, it takes her longer to calm down. To us, this is a sure indicator that our girl is really not feeling like herself.

After thinking about it more, we really felt like the morphine was the main cause of her issues. It’s the only thing that has changed in the last few days since her picc line came out. The problem may even be two fold: the fact that the morphine is being delivered via her NG-tube, possibly making her sick, and when she gets sick, and spits up, she’s not getting her dose of morphine, creating more withdrawal symptoms.

We could really tell that Ella was not feeling well when I was holding her tonight. She was ok for a little while (that’s when we snapped the pic above), but she really didn’t seem comfortable and just kept fussing. We indicated to the nurse that it wasn’t normal for her to be acting this way, and we talked about the possible issues with the morphine. She thought it might be a good idea to share this with the nurse practitioner, so she stepped away to go talk to her.

Some time had passed and we were doing everything we could to comfort Ella. We could just tell that her reflux was also bothering her, and with that she spit up. The spit up was very chunky and congealed. In the middle of this, the nurse returned to help me clean her up and Ella spit up again.

I could not calm her down. She was still fussing. The nurse practitioner showed up. We started talking to her, expressing our concerns. We put Ella in her bed, but something was wrong.

Ella was having a hard time breathing. She was extremely clammy and her head was very sweaty. Her O2 was dropping, and she couldn’t catch her breath. At this moment the practitioner was studying Ella’s chart, when I told her that something was not right. She went to examine Ella.

It was obvious that Ella was having difficulties breathing based on the fear in her eyes and how hard she was crying. She was starting to turn purple.

At this point, Tina and I were getting pretty upset. We couldn’t understand why the nurse was not giving her more oxygen by putting the mask over her face. We were getting more upset. The practitioner remained calm though, and we started to get control of ourselves and get out of her way.

They tried suctioning out her nose with a tube, but they were not successful. Ella’s nares were so blocked that they couldn’t pass the tube through. They tried a few times with different size tubes, but with no success.

Roger then came over to help out. Thank God for Roger. Not that the practitioner wasn’t doing well, she did a fantastic job, it was just nice to see a familiar face that had been with Ella in the past.

Roger then secured an oxygen mask over Ella’s face while they prepared a treatment to help her swollen nasal cavity. A few moments went by, then Ella spit up again. This time the practitioner was able to clear her mouth out with suctioning.

The other RT (Stef, another familiar face), showed up with an oxygen hood. This is used to humidify the air and, I may be wrong, but I thought they were also delivering some med that would help her nasal cavity as well.

Ella was still quite upset, so I tried to calm her down by singing to her.

She started to calm down….
She began to catch her breath…
Her stats starting coming back up…
She calmed down enough to fall to sleep…
Whew.

The nurse partitioner requested that a blood gas be taken to check Ella’s cO2 levels. They waited for her to calm down some more before they drew her blood. It requires a needle stick because she has no other lines in her right now.

Stef and Roger looked for a good vein to draw blood from. They thought they found a decent spot on her left hand, but passed the torch on to Joy from the transport team (Note: Joy made Ella’s bow when she was on ECMO, the pink one on the top of this page). Normally I run away during needle moments like this, but you couldn’t pry me away from my girl at this point.

The needle went in…Ella didn’t flinch. Joy was having some trouble finding the vein. Ella started to fuss after a bit, but then…finally…the blood flowed, and Stef drew it up into the syringe.

We then calmed Ella back down. She sucked hard on her binky, and started to fall asleep.

Her blood gas looked good. cO2 and pO2 were fine, and her pH looked totally fine which was really good to hear. If these were not in line, there was a chance of her being intubated. We’re glad she didn’t require it, even though it’s going to happen sometime this next week for her surgery.

Tina and I spent the rest of the evening calming her down, talking and singing to her. We finally got her to a solid sleep state around 11:45pm EST.

We hope to speak to Dr. Kays tomorrow about Ella’s nissen surgery. We’re even more anxious now that we see how great her potential is for aspirating when she throws up.

Pars parents (Liz and Rusty) were getting ready to head out too, so we walked out with them. So glad to have them there with us.

Thank you Lord for being right there tonight. Thank you for the nurses, RT’s, and other staff that were there to help Ella. Lord we pray for our baby girl to be stable tonight, and that she will not spit up at all. We praise you even through our moments of anxiety, and know that you never leave us or forsake us. We continue to pray for our baby girl as well as baby Par and Jonathan. We ask that you heal their bodies Lord. In Jesus name. Amen.