Sorry for the late post – it is literally the first break I’ve had all day. So much has happened since yesterday’s post…where do I start?

Yesterday morning at rounds, I expressed that I was going to involve Denver in our discussion. Ella’s lungs are too wet and we need to dry her out. We did not make much progress in the 24 hours prior and I wanted them to get more aggressive. After I talked with Ella’s pulmonologist (who is amazing), I had the PICU attending call and speak to him as well. After their discussion, the nitric oxide machine was calibrated upward to 10 parts per million and Ella received a dose of Bumex, in addition to the IV doses of Lasix. It made me feel better to know that our pulmonologist was giving his opinion and letting the PICU doctors know that Ella needs to be more dry than an average kid.

Surgery came by to visit. Since Ella had tolerated 10ml per hour, they wanted her to stool first, but then increase the rate to 20ml per hour. While the surgeon was standing there, Ella had a melt down moment and passed out within several seconds. The surgeon was so surprised – it completely took her off guard. She affirmed to us that is not something she has ever seen happen before that quickly. Again with fluid on Ella’s lungs, this can happen often. While Ella was clamping down during this episode, she also pooped – right in front of the surgeon! So once that happened, the surgeon wrote an order to increase her feeds to 20ml per hour.

Around 2:15pm, the PICU docs also considered giving Ella another diuretic to help make the Lasix more effective. It is called Metalazone and it is a thiazide diuretic that works the other side of the kidney. It is only given in an oral form via her g-tube, so we were not sure how much would be absorbed, but figured we would give it a try. Within 10 minutes of giving the medicine, she was writhing in pain. We saw this the other day when we tried to give her Methadone in the oral format. So we stopped the food pump, vented her to let any gas out, and tried to let it back in but she fussed. The return from the g-tube was yellow in color (not too concerning, just gastric juices). So, we left it in a cup off to the side and thought we would give her a break and try later. Since we thought the medicine was likely irritating her belly, we never put it back in. After a 30 minute break, we turned the food pump back on. Two hours later, Ella complained again. This time, we had not given any medicine through her g-tube. We vented and Ella returned a bunch of food and gas. Both times, she returned about 40ccs from her belly. If her food pump was at a rate of 20ccs per hour, then this means that her tummy is not emptying real well.

They consulted surgery at 4:30pm and they advised to turn off the feeds and let her rest. Two hours later, we vented and got about 30ccs of green bile returned. Green is not the color that we want to see. This was a bit concerning. When we weighed her last night, she was 14.3 kilos, tonight she was 14.4 kilos. She was 15 kilos the night before. We are happy with the weight loss and could tell that she was saturating better today.

Last night, she did fine but woke up at 3am, crying. She had a spell where she dipped down into the 30s and passed out within seconds. The nurse gave her some meds and she settled back down. At 6am, they came to take a chest xray (turned out that her lungs looked much better than yesterday). The technician was not real gentle and she woke up Ella. This made her mad and she had another pass out moment. When she recovered from that, she started crying hard again like she was in pain. She was holding her breath and desaturating – she passed out again. All of a sudden, you could hear gas and runny poop. This happened again later this afternoon, so we gave her a suppository to help with stooling (on top of her Miralax). But again this evening we had another pass out moment right as she was pooping, so we have resolved that she must be having some pain associated with passing gas and stooling.

Surgery decided to hold off on food again today and let her rest. With the pass out spells and so many other factors, they wanted to let her rest and will reassess tomorrow. They plan on taking another abdominal xray tomorrow to make sure that her bowels are not distended again and that there is nothing wrong with her physiology since the surgery. If everything looks okay (similar to her last xray), then it is likely just motility issues.

They did give her another echo yesterday because she was having these spells, but they have not told us the final results. I’m hoping to hear tomorrow. In the meantime, they decided to increase the nitric oxide to 20 parts per million this morning via nasal cannula. Her color has not looked great all day, sometimes better than others. It’s hard to tell from the photo, but even her eyes are purple and look bruised (they kind of match her binky).

Her potassium has been running low, so between doses of Lasix, they’ve had to give her a slow drip of potassium. In order to try and help that process, they decided to switch her diuretic to aldactazide. The docs in Denver have given Ella aldactazide before since it is a potassium sparing diuretic.

She does seem very touchy and gets agitated very easily. We’re having to keep her on the doses of withdrawal meds every 3 hours plus Atarax and Benadryl for itching. Yesterday, we had to give her a dose of morphine to keep her calm on top of these meds. Today, we had to give her morphine twice. Sigh…between all her regular medicines, plus the withdrawal meds, she is one drugged child: sildenafil, reglan, zantac, miralax, aldactazide. She gets 2 shots of Lovenox every day instead of aspirin and plavix to help with anti-coagulation. Then, Ativan and Methadone for withdrawal. Also, Atarax and Benadryl for itching. Then, morphine to keep her calm. And of course, some of these meds can’t be good for motility either.

There was discussion this afternoon about giving Ella a blood transfusion. The cardiologist wondered if it had anything to do with Ella’s pass out moments. Your hemotocrit is the proportion of blood volume that makes up red blood cells. Red blood cells are the carriers of oxygen in the blood. Since Ella’s system has been under strain and her hematocrit is lower, he thought this might help her. Upon admission, her hemotocrit was 13.7. For the past several days, it has stayed around 8.5. Typically, they only strongly recommend a blood transfusion if it is below 8. Considering all the strain that her body is under along with her history, a blood transfusion might help her and certainly wouldn’t harm her aside from the inherent risks of a blood transfusion. Ella had blood transfusions in the NICU several times, but her levels were at a critical point where she needed them. Since we have had plenty of pass out spells with Ella and we have never given a blood transfusion, we didn’t feel led to take that step at this time.

We’ll see what the team thinks tomorrow about her overall fluid status, pulmonary hypertension, pass out spells, and the general motility of her guts since surgery. I did chuckle when the attending came over to us after rounds and asked how long we were planning to stay. He knows that we are not from the area and you could tell that there was concern. He wanted to make sure that we were prepared that this still might take a while. He told us that his best guess (if she stays on the same track) is 2 weeks. Yikes…

Tonight @ 10:30pm, Ella seems unsettled even though she has had Morphine, Benadryl and Ativan in the last two hours. I have a feeling that tonight might not be so restful. Actually it now 11:00pm and I just had to take a break from writing this to console her – but she was not consolable – so they just gave her another dose of Morphine. My heart is heavy – I hate using all these drugs. I miss seeing my daughter. This withdrawal from the narcotics has been the worst. We’ve been at it for a week with no end in sight. Please pray for the Lord to miraculously resolve Ella’s withdrawal symptoms.

2 Timothy 2:13 (NLT)
If we are unfaithful,
he remains faithful,
for he cannot deny who he is.