Last night was rough. Ella whined and cried all night. I could tell that she was in pain.

Knowing Ella’s course of narcotics last time and how morphine makes her itch her skin off, we were trying a different approach to pain management. As the hours progressed, we could tell that the amount she was getting was not sufficient. About 3am, we ended up switching to a low drip of narcotics with the ability for me to push a button and give further small doses. Also, they decided to keep the same dose of valium but increase the dosage to every 6 hours. Finally in the middle of today, we ended up increasing the low drip dosage along with the valium and feel like we’ve hit a sweet spot. Finally, she stopped crying and whining. She’s a little sedated, but not experiencing constant pain.

The toughest part with all of that too – she has so little tolerance for anything, noise, nurses, doctors, etc. I basically stood next to her crib and would sing to her and try and soothe her through the pain while we waited to see if each increment of med changes would take effect. Many times, she simply lost her patience and would just start crying really hard from the pain. I would increase her nasal cannulas to 4-5 liters, and console, coaxing her to breathe. During one of these episodes at 3:30am, even with the O2 very high, she dipped way down into the 30’s on her saturations. This caused major alarm in the unit with the overnight staff, so about 8 nurses rushed into the room, pushed me aside, turned on the oxygen mask and were prepared to intervene. That might work with other kids, but it tipped her over the edge. She heard/saw a whole bunch of strangers, the O2 mask and ended up passing out. That is the first spell we’ve had since the surgery.

Once again, it all starts out behavioral in the sense that there is pain or frustration that sets her off, she clamps down and cries really hard, saturations dip way down. That is typical Ella. Any of her NICU nurses could tell you that she used to keep them on their toes in the NICU with the same behavior. So the breath holding spells from that standpoint are pretty typical, even for her toddler age. I’m really used to that behavior from Ella. However then Ella tries to go to take another breath and because her system is compromised (pain), she is not able to inhale and take another breath. That part is not by choice – I think she wants to take another breath and belt out a huge cry to let you know how upset she feels…but her body does not cooperate…and I think it scares her further that she is not able to breathe and is not in control.

Ella was starting to itch her eyes and nose a lot this morning so they gave her Benadryl immediately via IV and then ordered Atarax, which tends to be stronger and more effective. Along with that, the surgical team came to see her and noted that we could take the NG tube out of her nose. That was huge – it was driving Ella crazy. Unfortunately between the itching and frustration, she was still able to get a few good scratch marks around her eyes and nose but fairly minimal compared to what we’ve seen before. For now, the itching seems to be controlled with the meds. And finally in the afternoon around 3:30pm, Ella finally started to get some peaceful zzzs since her surgery.

They needed to give Lasix twice last night, but it helped Ella to maintain her fluid levels. And comparatively, only two doses of Lasix so far is a small amount post-surgery. So, she’s doing well. Having the cath lab procedure done the day before helped to ensure that her fluid levels would maintain too.

They did need labs earlier which is always traumatic. When they give Lasix, it is a given that they will want labs to check her potassium. However, we were so fortunate. We were able to draw from her IV – which is so rare. This was great because then we did not have to stick her! From the labs, they did learn that she needed a supplementary dose of potassium because it was a little low. They gave it to her via her g-tube versus IV, so we know that the levels were not too low or emergent. This evening, they came back in to get another set of labs to re-check the potassium. They were not able to draw as much from the IV as they wanted, so we’re going to have to draw again later tonight. We’re crossing our fingers that they are able to draw enough and we can avoid a stick.

The active stomach and bowel sounds are increasing and the docs keep asking if she has passed gas. She has not quite yet, but I think that air is passing through her intestines and it seems painful. She will clamp down, desaturate and draw her knees to her chest. So I think she is experiencing cramping. The spells don’t last long, just a few minutes. We’re hoping those begin to subside.

Besides trying to manage pass out spells and dealing with the normal advocating, Ella is doing great especially compared to last time. Most of the time she is content and just resting, watching her videos.

Check out the difference in her last surgery, post-op one day versus this time around. Being in Denver with her primary team is making a HUGE difference!

Last surgery (out of state hospital):

This surgery (her primary hospital):

In addition, the outpouring of support from those locally has been amazing. Snacks and meals delivered, gift cards for meals, visits, help with the dogs. All of it is so appreciated as well as all the comments, thoughts and prayers via the blog.

On an ending note, I just want to ask again that everyone pray for Elijah and family. As some of you know, he went in for the same surgery as Ella on Thursday except this was his 4th time having surgery for a diaphragm hernia repair. Below is a photo and words his mom wrote to me when I asked for an update via email.

Elijah’s surgery took 10 hours. Each time they go in, it gets longer and harder. It took over two hours just to place the art. and central lines. Removing all the scar tissue took a couple hours and exploring what happened to his muscle flap and deciding what type of material took a long time as well. They realized that his flap didn’t receive adequate blood supply and the body completely absorbed it. He spent two months with no left diaphragm. They found his kidney, spleen, colon, stomach and intestines were all up in his chest. Because his “stomach” area has been empty for a couple months and his intestines are swollen from the surgery, they couldn’t close his incision. This poses a greater risk of infection, so we are praying he remains stable and infection free. (He has a history of developing infections post-op, so that makes me nervous!)

As you can see, Elijah is such a trooper! They don’t plan to close him up until Sunday or Monday, so we need to pray for no infections!

And pray that Ella remains comfortable throughout the night from a pain management standpoint and that we can get some sleep!

Hebrews 4:16 (NIV)
Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.