Sorry for the delay in updating today. It was a packed day for me and the Bun.

Ella slept well last night and seemed to be stable, so the nurse reduced her oxygen to 750ccs. Once she woke up, I expressed to the nurse that it seemed like she needed more O2 while she was awake. So, the nurse put it back to 1 liter.

We went down to radiology at 10:15am. Too bad I did not have a camera of Ella riding in the Red Wagon down to her procedure. It was pretty cute. She sucked her binky and held onto her frog pillow while watching the ceiling tiles.

They used imaging liquid to check her nissen fundoplication. We wanted to make sure that the wrap was still intact. The good news: everything looked alright.

We are still scheduled for a swallow study this Thursday at 2pm. Unfortunately, I think we still might be in the hospital. So the silver lining is that we can conveniently just wheel on down to have our tests done. The swallow study should answer a lot of our questions that we have been having about Ella’s recent retching with secretions and oral food intake. Also, it should help us come up with a strategy for increasing her calories and a better idea of what we can feed her orally over the coming days.

Once we came back, I fed Ella – – she was tired and very hungry (she had not eaten since 6:30am; we needed an empty tummy to check out her nissen). Once I fed her, she took a nap. When she woke up, she seemed like she was laboring more in her breathing. I kept watching her numbers and behavior. She was still on 1 liter of oxygen, but pretty congested and breathing through her mouth more. The pulse oximeter showed her in the low to mid 90’s, but then dipping down into the low to mid 80’s and not recovering quick. The process of dipping down into the 80s was happening more and more.

I mentioned something to the nurse. She watched, but then Ella would creep up into the 90’s, so she didn’t feel any action was necessary. That was my double-check or second opinion for the time being.

Later around 4pm, Ella began to complain to me a lot. She was clearly having a tough time breathing. She was staying in the 80s more and more. She looked dusky and was breathing labored and fast, with a heart rate around 185. She needed more oxygen and she was letting me know clinically by her complaining too: she was grunting. The flow meter in the room only went to 1 liter. I couldn’t locate the nurse. So I walked to the other side of the bed and grabbed the blow-by oxygen. Ella seemed to respond favorably and crept up into the low 90s. This was my confirmation that she did indeed need more oxygen – it was not my imagination.

At that time, a case manager came in to talk with me. I expressed my concern with her and she indicated that she would go find my nurse for me. Without going into a lot of detail, Ella down spiraled in approximately a 15 minute time frame. She ended up on 2.5 liters of oxygen and required blow-by oxygen to stabilize.

During this episode, they decided to draw labs again and ordered another chest xray. I had not even seen the initial xray, so I asked the doc to take a peek. As soon as I saw it, my gut instinct kicked in and confirmed it: Ella is once again retaining fluid. Her BUN is 14 and she has too much fluid on board; she does so much better when she is more dry.

The biggest change since we came home to Denver is that we were told she could have diluted juice and/or water orally, so she has been having a lot more fluid input over the past weeks. Although it was slow, it might have made the difference. She has always been fluid restricted in the past. This is the only change I can think of related to fluid input.

After going back and forth with the various doctors and sharing her history (this is a teaching hospital too, so you have to explain things over and over to several people), they decided to give her more diuretic. I explained how IV lasik works well for Ella and that it might help get the fluid off her more quickly. Since they did not have an IV yet, they opted to start by giving her an extra dose of Bumex (she gets it 2x per day, so they added another dose). Also, the pulmonologist opted to give her a steroid for the next 5 days to help with lung inflammation called Prednisolone. Hopefully, this will just help her regain strength.

The biggest challenge now: we need peripheral access. They tried to get an IV yesterday with three different people, including a charge nurse. None were successful. Today, they sent someone with a “good stick” that was able to draw labs and did not see anywhere to get in a peripheral IV. So they called the charge nurse in the NICU to come and try. She tried three different places and was not successful.

At this point, they want IV access since Ella’s condition has gotten worse. They do not want to be in a place where they need to administer in a critical situation and not have access.

Our nurse thinks that the only people on shift tonight that might be able to get an IV is the flight team. So we are going to check with the flight team to see if they might be available to try. Honestly, I am not sure how/where they are going to try. She has been pricked several times in various locations. Literally, I don’t know how it will work – – maybe a miracle?

The only other option is a central line, but that is more invasive and Ella doesn’t have a great past with those either. When they did that in the past, her IVC partly occluded.

While I was typing this post, the flight team came into the room. They surveyed and the RN found one spot she thought might work. Josh went outside and prayed fervently. The whole process was about 40 minutes, but they got an IV in her left foot. Praise God – – that was a miracle. Now, Ella is sporting a sexy go-go boot and we are waiting to see if the night crew wants to give her a dose of IV lasix.

Thanks for all the outpouring of support and prayers for the three of us. Please say a special prayer for Josh. He is feeling very stressed, exhausted, and emotionally raw. He is just having a really hard time watching Ella endure this latest challenge.

Yes, this is another valley in the journey, but we know He is ever-present and with us each moment in the hospital, as He is every day. Our prayer request is for a smooth evening for Ella, that the diuretics will begin to do their magic and that her oxygen requirement can be weaned in the next 24 hours.

Psalm 121

8 the LORD will watch over your coming and going
both now and forevermore.