Posted (Tina) in All Posts on April-20-2010

So, Ella remained stable overnight. The last dose of anti-itch medicine was later yesterday evening, but we have not had to use it since. As I type this at 10:45am, she is still asleep. We may need to use Atarax or Benadryl to control the itch once she is awake. She is still taking Methadone and Ativan for withdrawal symptoms, and receiving one of those meds every 3 hours. There may be discussion of reducing the dosage, but we’ll see.

She is still on the nitric oxide to control her pulmonary hypertension and sits at 2 liters. While she is asleep, her numbers look great most of the time. We’ll see when she is awake throughout the day. It was disheartening to see her wanting to be more alert and playful yesterday and her body not able to keep up with it, thus the nitric oxide.

Once again, I’m a bit frustrated about the fluid overload situation. As of late last night around 10pm, she was still 2 liters positive for the past 4 days and her weight was 15 kilos (she was 15.1 kilos the night before). Not really any change, so I went and asked the attending if we could increase the IV Lasix dose to once every 6 hours. As of this morning, she was not positive by a lot but still positive for a 24 hour period between 100-150. It’s not a huge amount and based on her weight, they consider that inconsequential. They told me that they are only concerned if she is 300+ positive for a 24 hour period. But once again, she is still 2 liters positive for the past 4 days and Ella is fluid sensitive and does not respond like a healthy 2 year old. Being positive at all when she is already fluid overloaded is not inconsequential!!! They took a look at her chest xray from this morning and it looks unchanged from yesterday. Ya think?

When I talked with the docs, it seems that they are not getting the picture about being aggressive and really drying her out. So, I called down to CHOC Medical Records to see if I could get a print out of all the written records since admission, so I can forward it to Denver. I want her pulmonologist to see how they are treating her pulmonary hypertension and this fluid situation. I want a second opinion. Plus, he knows how different Ella responds and just how dry she needs to be for her pulmonary system to function optimally. CHOC charges 25 cents per page to fax it over to Denver (ridiculous), but I’m going to take on the expense because I need a pulmonology expert to weigh in. Overall, CHOC has been great but they do not know Ella and continue to treat her with the same protocol as other patients AND they do not have any pulmonology experts (Denver has 18 – it is a speciality for them). All we did yesterday was give her enough Lasix to maintain her in the same place. They are not being aggressive enough and treating her pulmonary status in a way that I am comfortable with – so – it’s time to get Denver more involved.

On a positive note, Ella seemed to tolerate her food at 10ml per hour just fine without any discomfort. So, surgery would like to increase her rate to 20ml today and try it. However, they are waiting to see if Ella will stool. Her last bowel movement was Sunday afternoon. She has been taking her home regiment of Miralax for the past few days. So if she doesn’t stool on her own soon, they will look to give a suppository later today and want to see another stool before letting her increase on her rate of food.

In the meantime, I’m advocating and ruffling feathers in the PICU. I guess it’s my role in life. Sigh…

Psalm 68:19
Praise be to the Lord, to God our Savior,
who daily bears our burdens.

Kara Snyder on April 20th, 2010 at 10:56 am #

No one advocates better than you. Keep up the good work momma. You ROCK!!!!

Fran on April 20th, 2010 at 11:13 am #

I’m happy for Ella that she has such a wonderful mommy and daddy. Bless you mommy for all you know and stay strong. Much love to you all.

Heidi Ham on April 20th, 2010 at 11:14 am #

Tina you are awesome! Ella is so lucky to have you and her Daddy =)

Anne on April 20th, 2010 at 11:14 am #

ALL patients need advocates these days, none more than Ella! You keep on doing what you do best… don’t mind ruffled feathers… they’ll settle down when they see you are RIGHT!

Ellie Brown on April 20th, 2010 at 11:21 am #

During times of difficulty it’s hard to accept that you still have to fight to be heard. Those are the times you need a break and just want things to come easier. You are a very strong woman to keep on fighting! I can see where Ella gets her strength from. Know that you have an army behind you holding you up!

The Williams on April 20th, 2010 at 11:44 am #

You go girl… love you!

Jim and Char Snyder-Jordan on April 20th, 2010 at 12:25 pm #

Everyone else has expressed their opinion and we think it is obvious. No one needs to be happy about your intuition or mega-knowledge. Don’t expect them to violate their protocol which insures them saftey. You do know. You are right. Give them all you have girl. We are behind you.

Krista Chiefa on April 20th, 2010 at 12:29 pm #

Hang in there, Tina. Keep fighting to make Ella well…..you know her best!

Nancy Costas on April 20th, 2010 at 12:49 pm #

Keep up the great work Tina & Josh, you are amazing parents and you know what is best for Ella. Keep up the good fight. Sending our love and prayers! Lyle, Nancy & Amaya in Denver

Alicia Martin on April 20th, 2010 at 3:04 pm #

You go momma lion…keep that baby safe. To them she is one of many, to you she is one in a million. You just keep doing everything you are!!

Tricia McDaris on April 20th, 2010 at 3:48 pm #

Yikes. So much for “family centered care,” huh? Do I need to bring you a sign that says, “Mommy and Daddy know me best” in huge letters to hang on the side of her crib? Eh, they probably wouldn’t even get the hint with that!

I’m so sorry you all are having to go through this! Ella has been through enough!

She’s cute as a button, though!!! 🙂

sherry martinez on April 20th, 2010 at 4:10 pm #

I have been watching your posts and want to share with you although choc is good the surgery team excellent. we recived similar care there and i had to fight hard for cayden as well when we were in there for our last surgery. I must warn you that dr nickerson who is the head pulmonologist there called cps on me when i would not go with his protocall. Just something i thought you should know. also the nurses there at least at night do try and sneak things in behind your back. No hospital is perfect and there surgons there are very good but it can be hard to get other things done. hugs to you all baby cayden and sherry

Karissa Benoit on April 20th, 2010 at 7:23 pm #

Stay strong, guys! Keep that baby girl safe at CHOC!

Laura Marold on April 20th, 2010 at 7:46 pm #

Sending you prayers! Wow, so much has happened since I last checked on you all. Love, Laura M.

Dana and Lauren on April 20th, 2010 at 8:06 pm #

Well said Alicia… I tried to say that yesterday but it did not come across as eloquently! I do hate that you have to battle so hard… Praying for some BM and some fluid release!

Lisa Philman on April 21st, 2010 at 4:42 am #

I am sooo inspired by your admiration to this situation and your little girl!! This is what are health care system is missing. I have been in a similiar situation and you have to be an advocate to your child or they will continue to do what they think they know…Keep up the GREAT work. You inspire so many mothers out there. God Bless.

Lesli Richards on April 21st, 2010 at 8:14 am #

praying for you this morning. I’m so thankful you are close to family, although I hope that your medical team starts to recognize the virtual medical degree you’ve obtained in the past two years. Keep fighting, little mama!

Williamsburg on April 21st, 2010 at 8:25 am #

Echoing everything everyone else has said – God knew exactly what he was doing when he gave you to Ella as her mom – she’s a fighter and so are you, Tina. It is not an easy job, though and you are constantly in our prayers (all of you) for rest, strength, courage and perspective. Not to mention the awareness of how deeply you’re loved in the midst of it all. All our love. XOXOXO

Joel snyder on April 21st, 2010 at 11:41 am #

Ella, I am praying that you are slowly making some progress. Tina and Josh keep up the good fight and I am sure that like all the other episodes in the past things will get better. I hope that both of you can get some rest don’t let the grind wear you down for the battle will continue until Ella turns the corner. I Love and miss you. Grandpa!!!!!!

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