Ella had a touchy afternoon with Nurse Angie. Even though they gave her a large dose of fentanyl at 3:30pm when they turned her on her back, she still fussed quite a bit for the remainder of the afternoon.

She started to calm down around 6pm and fell asleep. When we arrived around 9:30pm, she was still on her back and wide awake. She seemed comfortable and calm, just looking around.

Although her airway required suctioning a few times during our visit, she seemed to tolerate it fine and recovered quickly. Her vent is at 50% oxygen and 70 breaths per minute. Her saturations were 97-98% tonight. She had a blood gas at 10pm which was good, pH level=7.44, cO2=47, pO2=83.

Her chest fluid output was only 41 total for the day during our visit, so it has definitely slowed down. Although most of the fluid is still coming from the right chest tube (which is on the same side as her good lung), so I am sure that is helping Ella.

Her belly looked more distended tonight. Nurse Michelle measured her and she is up 1 centimeter today around her abdomen area. It is easy to tell because her repair scar is bright red and looks more stretched.

Also, her adema has gotten worse in her head and her trunk area too over the past couple of days. In the prior weeks, this was related to her SVC being collapsed. Although they took the contrast x-ray on Monday, we have not received any results.

Dr. Kays opted to remove the brain oximeter today. They were having some mechanical problems with it not reading properly. So, Nurse Michelle removed it again tonight. I am glad because Ella’s skin is so sensitive from the first time around where it was on for weeks, that Ella’s skin has already degenerated again (red and sore).

Finally, you may have noticed that her left eye has some blood capillaries that have burst. The theory is that the adema has caused the skin around her left eye to become red/purple. We are being told that it is not too much of a concern, but that they will watch it closely.

We have this gut feeling that Ella might be retaining fluid again in other pockets of her chest cavity. We will be interested to see how she does throughout the night on her belly, what her chest x-ray shows tomorrow and what next steps that Dr. Kays wants to take with her.

If she begins to not have as good of stats and begins to get fussy for Nurse Michelle, then she likely has more fluid accumulating somewhere. We know that scarring her chest is still a possibility that Dr. Kays is considering. Again, we would like to avoid that procedure but trust that God is in control and orchestrating every detail.

Matthew 11:28-30
28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Ella had a stable night and morning so far. At midnight, they flipped her on her back for 8 hours. This morning, she went back to her belly at 8am. They are on a schedule of flipping her back and forth every 8 hours. Although they are giving her an extra initial dose of fetanyl (which is pain medicine that lasts 1-2 hours), she is tolerating both sides for 8 hours at a time.

Nurse Angie is watching over her today and noted that Ella did have one fussy spell this morning around 9:45am. But, she suctioned her airway and gave her calming touch and this seemed to do the trick. Ella peacefully went back to sleep after 5 minutes or so.

Keep in mind that just this past weekend, there were times that nothing seemed to calm her down, not even an extra dose of fetanyl. So the fact that her saturations are returning to good levels on her own without extra meds is a sign that Ella is feeling better.

Her blood oxygen saturations have been between 98-100%. Her blood gas this morning was good, pH level=7.41, cO2=47, pO2=99.

Her urine output yesterday was real good at 265. Last week when we were going into the weekend and she was not doing well, it was low at 143.

The chest tube fluid output for yesterday was 51 between all 3 tubes. Today so far, it has been 16.

Dr. Kays was in briefly and made changes to her vent settings. He lowered her assisted breaths per minute to 70 instead of 80. Also, he lowered the nitric oxide from 4 to 3. She seems to be maintaining well. We will be able to tell when her next blood gas is taken later.

We know that Ella had a chest x-ray this morning. We have not heard those results and whether or not there is a CT scan scheduled.

All we know is that we are trusting the Lord Jesus. He has given us such amazing peace at this time.

Psalm 29:11
11 The LORD gives strength to his people;
the LORD blesses his people with peace.

Job 22:21-22
21 Submit to God and be at peace with him;
in this way prosperity will come to you.

22 Accept instruction from his mouth
and lay up his words in your heart.

UPDATE (4:45pm EST): The nurse practitioner just called a few minutes ago to let us know that Ella had an “episode”. She was on her belly sleeping and suddenly woke up very agitated.

Similar to this morning, Nurse Angie tried to soothe her by suctioning her, giving her a temporary boost in oxygen from the ventilator, comforting her, and even placing her on her back (she had been on her belly for 7 hours).

Her stats were not coming up as they should on her own. They paged Dr. Kays and he asked for a blood gas to be taken. Surprisingly, it was still in the acceptable range with a pH level of 7.33, cO2=58 and pO2=89. This was a good sign.

Since she was not calming down, Dr. Kays ordered for a large dose of fentanyl (equivalent to a surgical dose). That knocked her out and she is sound asleep again.

We know that Dr. Kays does not like to sedate her unless necessary. He wants to be able to ultimately solve the problem of why she is having discomfort. Although we have not talked with him, we think he might just be buying some more time until he figures out the next best steps for Ella.

Please continue to pray that Dr. Kays will be filled with knowledge, wisdom and discernment from our Heavenly Father. Also, that Ella would be comforted and given strength to continue climbing to the mountain top.

James 5:11
As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.