Posted (jooosh) in All Posts on April-22-2010

Well, Tina was right in her prediction on the previous post. Ella decided to wake up around 4am this morning with spells of agitation and fussiness. Benadryl and morphine were given, but she didn’t settle back in until 5:30am.

Around 6am they came by for an x-ray. A chest x-ray was ordered and we thought the surgery team wanted an abdominal xray too. They did, but the order wasn’t in the system when the tech came around. Bummer because it would have been nice to knock them both out at once.

Ella continued to be fussy throughout the morning. When Ella is in this state in can be incredibly exhausting to deal with. On top of seeing your kid not feel well, it can be extra challenging because Ella can’t tell us exactly what she wants. Most of the time, we guess correctly based on her body language, but there are times when you try everything and nothing seems to console her.

Tina has been by Ella’s side almost the entire time we’ve been here. As her mother, I know she wants to make sure Ella’s taken care of, and she’s very protective of our sweet child. It’s hard to convince Tina to break away, and she’s really only been away from the hospital couple times. I try my best to push her out of this place, but Ella’s current instability keeps her here. Today Tina took a real break though. She had lunch with a dear friend that we’ve known for many years. I’m so glad she was able to escape. She was gone for a good 4 hours. I’m hoping I can talk her into getting away more often on a regular basis.

While Tina was gone, Ella maintained her agitated fussy mood, that is, until the docs did rounds. All of a sudden it was like a switch: Ella was happy and a LOT more like herself. Sitting up, smiling, engaging us, reacting to us…just totally typical Ella behaviors. She is still on a heavy dose of meds, which makes it look like she’s had a few beers, but other than that, she’s just being more like herself. She had a honeymoon period like this briefly a few days ago, but not really since. But this time, she maintained her mood for a couple hours, right up until Tina came back from lunch. For whatever reason, Ella became agitated again, and had a major episode (desaturating and passing out). This fussiness continued all the way up until dinner, and then…she was happy again and continues to be so even as I write this. We’re really not sure why she is having these kind of swings, but at least we’re seeing some of our true kiddo break through. I hope and pray this trend continues because we’ve really missed our sweet child.

When the docs did rounds this morning a couple changes were made. They wanted to discontinue all of her PO meds, even her sildenafil because they were convinced they were not being absorbed enough to make a difference. I convinced the attending to at least keep the slidenafil even if it’s only being absorbed a little. It’s such a key component to helping Ella’s pulmonary hypertension that even if she’s only getting some on top of the NO (nitric oxide), I think it’s better than not giving it. He agreed but also confirmed he was doing it so we couldn’t point to him DCing it as a potential sticking point later. I smiled and said, “I definitely understand that”. =)

The other reason for them wanting to discontinue the PO meds was due to what they saw on the abdominal x-ray. It looked as though Ella had another significant distended loop in her intestine. Oye…this was a bummer to see. The attending confirmed that it might not be anything too concerning, but they want to keep giving her bowels a rest and see if it resolves. We did have a doc from the surgical team come around later, and he confirmed that it shouldn’t be anything to worry about. In fact, he thought it was just her colon and not small intestine. (Whew) We’ll confirm for sure with Ella’s primary surgeon, but if all looks good with this and the rest of her gut, we’ll probably try food again tomorrow.

The docs also saw that her chest x-ray today was more “wet” than the one yesterday. So even though she is getting a strong dose of Lasix every 6 hours, that’s still not enough to diurese her. They hit her with another dose of Bumex this morning and she peed out a 418cc diaper (normally Lasix produces 100-178 per diaper)! This has to be surprising to them considering they were hesitant to give Lasix every 6 hours instead of every 8 hours. We tried to tell them, but I think our pulmonologist in Denver affirmed this too. Either way, Ella just confirmed what we’ve said from the beginning. When Ella means dry, she REALLY means dry. Maybe we should get her a tee-shirt to wear with this on it:

The other suggestions that were made on rounds were to get a Nurse Practitioner from pain management involved as well as an individual that specializes in Chinese Medicine. For pain management, we want other thoughts on which meds to be giving to help with withdrawal. It seems like we are having to give so many drugs to keep her comfortable. Plus, she is still itchy. So, we’re hoping to get some insight from her. Also, the thought was to look into using acupuncture to help Ella. We’re excited to explore this area of medicine as we’ve never been presented the option before. Very cool that CHOC has it available here.

We’re so pleasantly surprised to Ella even slightly return to herself this evening. It was shocking because it came from out of now where and moments earlier she seemed so agitated. But we know that He can perform miracles and that all of you are diligently praying for her. We’re hoping that this was not a fluke – it would be great to think that Ella is actually turning a corner. The test will be in the hours to come.

Thank you all for your continued thoughts and prayer support. It means so much during this time.

1 Thessalonians 5:16-18 (NLT)
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

Barbara & Jeremy Herold on April 22nd, 2010 at 11:47 pm #

Sending love and prayers your way! Acupuncture worked wonders on my nerve pain, I highly recommend it. I’m surprised that none of the nurses there have involved a patient advocate to help you with the doctors. I call them first thing anytime I go to the hospital now because I get tired of arguing patiently with doctors over my care. I’m pretty sure they have patient advocates on staff in every hospital so please remember that they are at your disposal should you have any further problems getting the doctors to listen to you about Ella’s needs.

julie kirk on April 23rd, 2010 at 2:18 am #

prayers and bear hugs to all three of you…

Steve and Joan Odell on April 23rd, 2010 at 6:05 am #

That gorgeous smile and beautiful hair makes our hearts happy. Thankfully the docs are learning…sometimes to slowly….that Ella’s parents know more than they do related to her care. Prayers continue…hugs..Steve and Joan

Alicia Martin on April 23rd, 2010 at 6:28 am #

Sweet Ella! Keep up that wonderful fighting spirit!

The Williams on April 23rd, 2010 at 6:34 am #

Ella coming back…. that is such a blessing. Keep it up Precious Baby Girl… we love you!

Elizabeth Norman on April 23rd, 2010 at 6:36 am #

It’s such a joy to see her smiling face! I loved the Bible verse you chose for this post.

Tara Hayes on April 23rd, 2010 at 7:12 am #

Praying for Ella’s recovery, wisdom and clarity for team of doctors treating her and for Josh and Tina to have strength and get some much needed rest! Many thanks to the friend who took Tina away and out to lunch. You did what so many of us across the country wanted to do for her:)

Eve Johnson on April 23rd, 2010 at 7:56 am #

Wow-that happy stint with Tina gone sounds just like a “typical” 3-year-old! When Katherine isn’t happy about her situation she’s an angel for everyone else but takes her grumpyness out on me!
Continuing to pray for you all.

Jennifer Harris on April 23rd, 2010 at 7:56 am #

Oh there’s that beautiful smile…she is a real soldier. Our thoughts and prayers are for complete healing!

Joel Snyder on April 23rd, 2010 at 1:25 pm #

Ella, Good to see you making some progress and getting to show us that great smile. Tina so glad to hear that you took a break and hope that things go well enough for more. I am praying that all of you have a great weekend. Love,Grandpa!!!!!!!!!!!

Fran on April 23rd, 2010 at 6:28 pm #

It’s so wonderful to see Ella’s wonderful smile in the photos. So glad to hear that Tina had some lunch with a friend. Much love to you all.

Kara Snyder on April 25th, 2010 at 1:00 am #

Poor thing is not going to know what it’s like to be normal anymore. Hope the acupuncture works so she can be drug-less.

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