Posted (Tina) in All Posts on April-15-2010

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.

Auntie Shannon on April 15th, 2010 at 12:28 pm #

Sweet Ella. Your uncle Rick is coming by today for a big kiss. I hope he gets some of those adorable smiles.


Adrienne (Melissa's sister) on April 15th, 2010 at 12:30 pm #

look at that sweet smile…… awwwww. praying for you.

Heidi Ham on April 15th, 2010 at 12:50 pm #

So great to see you smiling Ella…praying for healing for you and Lola =)

Marge (A Friend in Indiana) on April 15th, 2010 at 12:52 pm #

Praying for all of you, Tina, Josh, Ella, Lola and Macy………may you all know His healing and comfort.

Jennifer Harris on April 15th, 2010 at 1:09 pm #

Thank you for sharing Ella’s beautiful smile today…are continued prayers are with you.

loren lizotte on April 15th, 2010 at 1:16 pm #

Its to to see her coming around. I hope the itchies. Go away soon

The Williams on April 15th, 2010 at 1:57 pm #

Praying for all of you… poor little Ella and Lola…

Todd Katler on April 15th, 2010 at 3:11 pm #

I was so glad to see that smiling face at the end of this string! We’re thinking about you guys always!

Vicki Schubert on April 15th, 2010 at 3:50 pm #

You are so precious, Josh and Tina. I watch you go through all of this, taking care of your precious baby Ella and your pets, and I just lift you both up for strength, courage, and comfort. You so epitomize the picture of true believers leaning completely on their Savior for everything. And you, precious, precious Ella, are so sweet, and seeing your smiles makes my heart smile. God bless you (all five!), and may healing continue, guidance be given, and rest be provided. Oh, how Jesus loves you!

Lisa Correia on April 15th, 2010 at 7:17 pm #

Sooo good to see that adorable smile again!!!!!

Amber Riley on April 15th, 2010 at 8:00 pm #

Praying for sweet baby Ella!

Tara Hayes on April 16th, 2010 at 12:53 am #

Still praying for Ella!

Joel Snyder on April 16th, 2010 at 6:21 am #

Ella, I am sorry that getting over the drugs from that surgery seems to be a little tougher than we thought. I am saying my prayers for you and Lola hoping that you both are on the mend. Have a good day today and I will check on you later. Love,Grandpa!!!!!

Tammy on April 16th, 2010 at 7:34 am #

Sweet girl. I will pray that those irriating “bugs” stop their jittery and bug elsewhere!! Lola and Macy are adorable, I’m sure they miss you!


Steve and Joan on April 16th, 2010 at 7:46 am #

Love that smile…..so glad things are going better and docs are taking it slow. Hugs and prayers continue. Steve and Joan

Jan Costas on April 16th, 2010 at 8:33 am #

Praise God that you are on the downside of another crisis. I marvel at your faith and trust as you allow the Lord to lead you through all those firey darts. Continuing to pray.

Dr. and Mrs. Robert D. Wootton on April 16th, 2010 at 3:15 pm #

We pray for the Lord to keep His loving arms around the three of you and that His will be done in each of your lives.
We pray for strength for each of you, comfort and wellness for precious Ella,and cure for Lola and protection for your cat. May God continue to bless each of you and be gracious to you. Love in Christ,
Dan and Nancy Wootton (Related to Par Rich and his family on Rusty’s side)

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