Poor Ella Bun. Ever since she was extubated, she is dealing with withdrawal from the narcotics. She was only on them for 4 days, but the dependence had already started. The last time she had these type of narcotics for any length of time was the NICU and they took many weeks to taper them off. Here, she was stopped immediately for extubation. In typical Ella fashion, she is not following the rules. The PICU staff is surprised by her symptoms and that she is having the withdrawal.

Last night, the Methadone was working a little bit to alleviate the symptoms of withdrawal, but she was still clearly uncomfortable. So, they started Ativan which works by slowing down the movement of chemicals in the brain. This results in a reduction in nervous tension (anxiety) and causes little sedation. They ordered a one time dose to see if it would calm her down. Ativan along with a dose of Tylenol put Ella on the right track to sleep. She actually slept last night from 11pm to 6am which was fantastic for both of us. But as soon as the action started at 6am, she has been extremely jittery and uncomfortable in her own skin. She continues to scratch herself too.

So today they are using Methadone and Ativan to control the withdrawal and keep her comfortable and Atarax to alleviate the itch. We’ve also put a hydrocortisone topical cream on her skin to help with the itch. They changed the dosage and orders so that she is getting the Methadone or Ativan once every 3 hours. We’re hoping this keeps her in a better place today. Again, they are surprised at her symptoms but are beginning to really understand that Ella goes slow and does not follow the rules.

They are going to switch her back to her home medicines today. It will be a good test to see how well her meds are being absorbed in her belly. This means discontinue the heparin drip for anti-coagulant and put her back on aspirin and Plavix via g-tube like she takes at home. She has already been on Sildenafil the past 24 hours, so they are weaning the nitric oxide throughout today and plan to discontinue overnight. She is scheduled for a repeat echo in the morning to make sure that her pulmonary hypertension is under control and that the flow in her SVC has held strong.

Respiratory wise, she had another chest xray and it looks good (not too much changed from yesterday). So they are discontinuing the IV Lasix and planning to give her hydracholorothiazide via g-tube for her diuretic, which she normally takes at home too. She has been at a flow rate of 2 liters of oxygen, so they are going to wean her to 1 liter today to see how she does (her baseline at sea level is 1/2 liter).

One thing we have noticed, once the nurse gives a med via g-tube, you can only wait about 30 minutes and then you have to vent the g-tube again otherwise Ella complains. The pressure builds up and as soon as you vent it, light green bile and lots of air comes out. This means that her guts are still not operating very much. Surgery is not surprised given the the stage of obstruction prior to surgery and that she was on so many narcotics the past few days (those slow it down a lot too). The PICU docs were pushing to try and use food today. The surgery team put their foot down and told them to wait longer. Upon examination, they can tell that her bowels are still distended quite a bit and that she needs more time.

While Ella has been at the hospital this past week, we wondered what to do with Lola. So, we found a doggie daycare nearby for her to play and get exercise during the day. They open at 6:30am and close at 7pm, so it has been nice to drop her off and not worry about her while we’re focusing on Ella’s needs. We can even watch her play during the day online via webcam.

I’m not sure if Lola just has sympathy pains for Ella and misses her, but Lola has been having symptoms for a couple of days which resulting in a vet visit this morning. She will be on antibiotics for the next 10 days. Even though she was current on all vaccinations and had her Bortadella shot for kennel cough, she must have caught a bug from one of her canine buddies. We’re hoping that Macy (the cat) does not show any symptoms and catch it from Lola. Sigh…

I’m sure it is apparent from the pictures when the meds are working to help alleviate her discomfort and when they are not. Fortunately, we have been getting little glimpses of the Bun a few times per day for about 30 minutes. Please pray for Ella’s continued comfort, for subsiding withdrawal symptoms and healing throughout today and throw a request in there for Lola too!

1 Corinthians 15:58 (NLT)
So, my dear brothers and sisters, be strong and immovable. Always work enthusiastically for the Lord, for you know that nothing you do for the Lord is ever useless.