Very Bad Night

After our day of both up’s and down’s yesterday, we had a night of nothing but down’s last night.

I never went to bed at all last night because Lilyan barely slept and needed to hold my hand constantly. Scott only slept a little bit. The fluid is such an issue and causing Lilyan to feel like she is drowning or suffocating much of the time.

They added a second diuretic during the night and that worked beautifully alongside the Lasix, but she is still completely unable to rid her body of fluid without that help, and it never seems to be enough to resolve her issues anyway. We just met with the ICU team, and they are going to continue both of these meds for now with the hope that we will see great improvement with her fluid output today.

She is also running a pretty high fever now, even with Tylenol. They have ice packs around her body to help bring that down, and have added another antibiotic to her very long list of medication. They took samples of blood, urine, and lung secretions to start cultures on all of those to see if they can find the source of infection. There is still a chance that there is no infection, but that this is another way that her body is reacting to all of this fluid she is holding onto. If that’s the case, then hopefully, ridding her body of the fluid will also take care of the fever.

They have also played with her ventilator settings again, and have actually taken steps backward in that area for now. But at the moment, keeping her comfortable while we address the fever and keep trying to rid her body of these fluids is the most important thing. So some steps back seem like the right direction to us for the moment.

For that same reason, they have also increased her sedation again to try to keep her calm during these more intense periods. Sometimes, when she is in her most acute phases of these “suffocating periods,” they can suction fluid from her lungs. Other times, they can’t get anything out, but you can hear the fluid in there and feel it with each breath if you lay your hand on her chest. She is also wheezing now, so they’ve added Albuterol to her meds list.

She is tired. She is fighting so hard and is so sweetly doing all she possibly can to respond when we stroke her hands and face and urge her to relax and calm down during her moments of panic. I honestly know that I couldn’t do that as well as she is if I felt like I was drowning. But she is clearly getting tired. Taking these steps back will allow her to give her body the rest it needs and let the rest of us fight these battles for her for awhile.

Lilyan - Friday - New Baby Hippo

Please keep praying for our brave and strong little girl. Please pray that we can keep our thought processes, ability to communicate, and emotional responses where they need to be in the midst of pretty intense fatigue ourselves. Just walking through each day requires a lot of mental energy.

12 thoughts on “Very Bad Night

  1. Praying for Lilyan to feel God’s comfort while she undergoes all of these things – I pray that God would give you & Scott peace in knowing that God knows about all you are enduring. For rest and strength and clarity and wisdom. Praying that today Lilyan will experience more ups than downs. May the Lord hold her in His healing hands.


  2. Continued prayersπŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»β€οΈβ€οΈβ€οΈβ€οΈβ€οΈπŸ’”πŸ’”πŸ’”β€οΈβ€οΈπŸ˜’πŸ˜’πŸ’”πŸ’”


  3. Father God, in my own thoughts this seems so overwhelming and impossible, but I am so grateful that You are a God who heals, and a God who knows our every single need, both small and great, and that You will meet each one in each one of us. Thank you, Lord!! Please Lord, touch Lilyan and heal every detail of her struggles in her little body. Lord, get rid of fluid, help her breath on her own, and keep her blood pressure healthy. Father, please touch Scott and Kathy, Give them supernatural strength and a peace that only comes from You. We are comforted knowing You are not desperately trying to figure out how to fix things, that instead You have Lilyan, Scott, and Kathy in Your calm and capable hands and You delight in meeting their needs, each and every one of them! We give You all the glory and honor Lord, in Your precious Name we pray. Amen.


  4. Crying and praying on my knees with Terry this morning. When we are unable to breath well, part of our body’s natural response is to panic, which should get us to pay attention and do something about it. But it sure makes it difficult to relax. Praying for God’s comfort & encouragement for you all, for peaceful and effective rest, and some steps forward today. My heart is with you.


  5. We are sending our love and prayers……loved hearing Jason Gray yesterday and seeing all your precious kids and grands!!
    May God bless your precious daughter, Lilyan……xo


  6. Pingback: As Different as Night and Day | Where Love Learns Its Lessons

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