Posted (Tina) in All Posts on April-19-2010

Remember on yesterday’s post how I mentioned that we were seeing Ella go in the wrong direction. I warned the resident during the day shift and they just wanted to “watch and see”. Later last night, it just kept getting worse. Ella had two episodes where she got upset and her saturations dropped into the 30s and she passed out on me – – twice! When this happened, we increased her to 2.5 liters and it still took a good amount of time for her to come back up. This pushed Josh and I to put on our armor and start war with the night resident. Although this particular resident had not been following her all the time, we pled our case: based on everything we know about Ella, she has to be fluid overloaded.

Then, we started asking for the facts since we’re not even convinced that she was dried out enough after surgery. How fluid positive is she for the past few days since you halted IV Lasix? We found out that she had been fluid positive 2 liters! That is the same amount as the day after surgery. Then, I asked about her weight which is another indicator. Remember when I mentioned that Ella lost weight? Well, she was 13.6 kilos three nights ago (29.92 pounds). Tonight, she was 15.1 kilos (33 pounds). She is on IV drips for nourishment, so there is no way that a 2 year old would gain 3 pounds in 3 days!

This is so frustrating. We feel like we are back at square one and that they are not listening to us about her fluid sensitivity. We had the same frustration initially in Denver until we were there for nearly 10 weeks! We are only at a week and a half, but this is painful.

After we discussed with the night resident, we negotiated one dose of Lasix at 8:30pm to see what would happen. Ella responded within the hour and peed out 178ccs. Next, we asked about another dose in 6 hours at 2:30am. At first, the resident only wanted to give a half of a dose of Lasix. That was not going to fly. Josh had already left for the night, so I put on my armor and had another discussion with the resident shy of midnight. I was able to negotiate another full dose scheduled at 2:30am. Before the nurse administered it, we changed a diaper with 95ccs. The dose of Lasix at 2:30am produced 378ccs of pee! She also had a chest xray this morning at 5:30am.

We will continue the battle with the day shift. Please pray that they will begin to listen to us about Ella’s physiology and her needs. She is not text book and they need to consider her specific needs, not the standard care of protocol. Our baby girl has so many things to recover from and deal with over the next several days – major surgery, bowels not in full operation yet, and narcotic withdrawal symptoms. The last thing we need is a fluid overloaded child battling with pulmonary edema when we know the standard protocol for preventing this effect in Ella. Please pray for IV Lasix – lots of it, so she is dry, dry, dry! We’ll update later with how the day continues to progress.

And as always through all of this, I am reminded:

Proverbs 3:7-8 (NLT)
Don’t be impressed with your own wisdom.
Instead, fear the Lord and turn away from evil.
Then you will have healing for your body
and strength for your bones.

UPDATE 9:30am by Tina
We feel better. It is the beginning of the week and all the docs that normally follow Ella are back in full swing this morning. They took a look at her chest xray and agree that she is fluid overloaded and plan to give her more Lasix today (and the xray was taken after two doses of Lasix). I’m hoping they will watch all of her factors more closely this time around. Plus, since they were not sharing her fluid ins/outs and her daily weight, we will be asking for that info each day. It’s not fun to babysit, but apparently we need to dig for all the details so we do not find ourselves here again.

Since Ella is fluid overloaded, she does not have tolerance for assessments and lots of touching from docs. When that happened this morning a few times, she clamps down, turns dusky and is having a tough time breathing. We’re just anxious to get some of the fluid off. But right now, they have her on a potassium drip for 2 hours to help balance out her electrolytes. As soon as that drip is finished, we will be hitting her with the Lasix for her first dose this morning.

The good news: surgery came by and said that her assessment looks good. They ordered an abdominal xray to check and make sure that none of her bowels were distended. Besides some gas trapped in there, Ella’s intestines look good. Today, we will be trying a slow drip of Nutren Jr with Fiber (10ml per hour), to see if she can tolerate it. That is a huge step for Ella, so pray that she will remain comfortable throughout the day and that her bowels will welcome the intro of food. We want lots of peeing, pooping and passing gas while remaining comfortable with the first intro of food…yeah, I know that is a lot to ask but we’re confident that it can happen!

Again, we appreciate all the prayers and support.

UPDATE 11:40am by Tina
We decided that amongst the madness, it was time to give Ella a bit of zen. Her experienced nurse had a great idea for washing her hair with all three of us doing our part, by leaning her over the edge of the bed with a basin on a table to catch the water. Mind you, she has had sponge baths but her hair had not been washed in nearly two weeks! Normally, Ella does not like baths at all. This time because she is battling the itchy symptoms, she actually was enjoying the head massage. Ahhh, a bit of Ella Spa Time.

We’re starting food finally. Let’s hope she can tolerate it.

UPDATE 1:15pm by Tina
It seemed like washing Ella’s hair made her feel good. As a matter of fact, she wanted to sit up and was getting excited. She was smiling at us, which is so good to see after several days. The only problem: her lips were blue, her heart was racing and she was desaturating even on 2 liters (it’s hard to tell in the picture below, but you can kind of see that there is blue around her mouth area). They had us increase the O2 to 3 liters.

Normally, we only see these types of symptoms when she is mad, clamps down to hold her breath and then passes out like last night which indicated a fluid issue. But this was clearly different in that she was not agitated, just excited and yet her heart and lungs could not handle the increased pressure which is a classic sign of pulmonary hypertension. The doc came in to assess her and agreed that this was a pulmonary hypertension spell. His first thought was to give her morphine to calm her and open up the pulmonary vessels. However, normally this is given if someone is agitated. You could clearly tell that she was not agitated. She was still itchy and showing signs of withdrawal, but she was playful and happy. Josh and I both do not want to sedate her more. She already acts like she’s had one too many beers, but at least she is happy and not completely drugged!

After advocating for another solution, Ella is back on nitric oxide via her nose cannulas. Until we are convinced that her sildenafil is being properly absorbed via her tummy, we feel that this is the best way to manage the pulmonary hypertension.

Loren on April 19th, 2010 at 8:00 am #

Go Tina Go Josh!!!

Pat Hadden on April 19th, 2010 at 8:06 am #

Why should you two have to do this? Don’t the hospitals/doctors share patient history? I feel so frustrated for you. Can the Denver hospital fax or email her records? Hang in there. Much love.

Jennifer Harris on April 19th, 2010 at 8:18 am #

We are praying for Ella’s complete recovery,your courage and strength to fight through this journey and divine guidance for the health care staff.

Dana and Lauren on April 19th, 2010 at 8:36 am #

Why don’t these doctors talk! It seems like the system is faulty that you have to teach everyone on every shift about how to medicate Ella!!! Amazing. Tina.. Keep fighting for what you know. You are doing to right thing. She is your daughter and not theirs so they just follow protocal. We will pray for IV Lasix! And listening Ears

Anne on April 19th, 2010 at 8:37 am #

Doctors aren’t used to having parents as knowledgeable as you two are… keep on showing them YOU KNOW THIS KID… they’ll get it eventually!!!

Heidi Ham on April 19th, 2010 at 10:31 am #

I totally agree with Anne…hopefully they will begin to see how much you and Josh have learned over the years and start to believe that you know what you are talking about. Love, prayers and many comforting thoughts going out to all of you <3

Alicia Martin on April 19th, 2010 at 11:52 am #

Ella is so blessed to have such warriors in her corner!! You two are amazing parents! Praying for continued stamina!

Steve and Joan on April 19th, 2010 at 1:02 pm #

Ahhhhhhh, nothing like a head massage and clean hair……Blessings and hugs to all of you and prayers for the docs/care givers to be more in tune with your experience….. Steve and Joan

Joel snyder on April 19th, 2010 at 3:01 pm #

Ella, I know that that shampoo had to make you feel better. Tina and Josh keep up the good work and keep after the caregivers you know Ella better and remember sqeeky wheel gets the oil. I am praying hard for all three of you. Love,Grandpa!!!!!!

Tara Hayes on April 19th, 2010 at 7:57 pm #

Whew! Just reading your posts outlining the events of the day was exhausting. I am praying that all the details have been resolved and Ella is now on her way to a speedy recovery! hoping you all get some much needed rest tonight! much love,

monika clark on April 19th, 2010 at 8:24 pm #

GOD BLESS YOU WITH MIRACLES AND EVEN MORE PERSEVERENCE–you are all 3 miraculous and our prayers surround you always. love and kisses, monika and family

Rainey Family on April 19th, 2010 at 8:39 pm #

She is such a cutie pie. Thank you so much for the opportunity to see you guys and meet Ella in person today. What a blessing. All 3 of you will continue to be in our prayers!!

Dana and Lauren on April 19th, 2010 at 8:51 pm #

Phew… I am so glad your doctors are back that know what is going on! The weekends are so rough at hospitals. Yeah for the Monday Crew!

Jan Costas on April 19th, 2010 at 9:16 pm #

I’m so glad you are there to ride shotgun, yet sorry that you have to. Hoping Ella has lots of pee and poop and way less itching. And that things start moving forward again.

Kara Snyder on April 20th, 2010 at 10:40 am #

Praying for you all. Wish I could be there to hug on you.

Merrilee Batchelor on April 20th, 2010 at 5:43 pm #

Bless her little heart.
She is playful and looks like
half the battle is won.
Hope and prayers your way.
Each and every one of you, Grammie too

Merrilee in Temecula

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