Our meeting went well today. We've developed a good plan of action. We were able to get some answers to our questions, even if they weren't the answers that we wanted to hear. The ultimate goal is obviously to get her home. Because she has had trouble getting off the vent, the plan for now is as follows:
1. Start Olivia on a drug called Bosentan. She was on this a couple of years ago, but it started to affect her liver, so she was taken off of it. It helps with pulmonary hypertension.
2. She is going for a lung scan tomorrow morning. They will inject dye and she will also inhale some sort of radioactive ingredient and they will get a picture of her lungs. It is a slim possibility that the platelets she has been getting could have gone into her lungs and formed little clots which could cause her the respiratory issues.
3. The cath lab results showed that the pressures in her heart all are equal. This is not normal. It is a possibility that she has constrictive pericarditis of the heart. Basically, the scar tissue may be constricting her heart and causing it not to pump correctly. We are actually hoping that Dr. Fortuna (cardiac surgeon) will agree to take her in and remove the scar tissue. It would be a thoracic surgery - not requiring the chest to be open or go on the heart/lung machine. It would still have it's risks, but would not be as invasive as open heart. There is no "test" that will confirm if she has this, but it would be necessary to rule this out.
4. If all this fails, she will need a trach. We weren't really expecting to hear that, but after hearing it and putting all things in perspective, we are definitely on board if it comes to that. If that's what it takes to get Olivia home and let her be a little girl, then that's what we'll have to do!
Regardless of all this, Dr. Torres (intensivist) is willing to try to get her off the vent one more time. This most likely won't take place in the near future. If she is going to go to surgery in the next couple of weeks, it would be silly to try to get her off the vent.
Also, we were able to speak with Dr. Al (St. Jude) and he said that Olivia is definitely no where near ready to start chemo. He said people live with MDS (pre-leukemia) for years without undergoing treatment. That is definitely on the back burner, and he will just treat her with frequent transfusions on an as needed basis.
We definitely feel a huge sense of relief knowing that there is a plan in place. We are praying big that Olivia can get over this little bump in the road within the next couple of weeks so we can get a step closer to home.
"For I know the plans that I have for you, declares the LORD. They are plans for peace and not disaster, plans to give you a future filled with hope." Jeremiah 29:11
5 years ago
13 comments:
I shall pray for each part of the plan this week. Sounds like many things to think about. I will also pray for the families peace with the plan as it takes shape.
Ling
Wow. That's a lot to take in and I'm sure your hearts are just heavy with all of this. You have a great support system and you will need it now more than ever. I pray that there is peace in every decision made and that Olivia continues to show you the joy she holds in that special little heart of hers :)
Hold on to God's promises!! They are true, steady and never change.
S Lock
Olivia,
Thinking about you, praying for you, missing you! Hang in there, Sweetie!
Love, Laura S.
Praying for all of you!
I am glad to hear about the plan I know it is alot to take in but you are in very good hands. I never worked on the peds ICU of St. Francis but I did work on the adult heart floor 5000/5100. The doctors are amazing. We will continue to pray that Olivia handles all of the new meds and treatments well. Hang in there Julie and Zach hopefully Olivia will be home soon!
The Bierman's
Stacy, Matt,
Nicholas, James, and John
My goodness that's a lot of news, but it's got to feel good to have some answers and a bit of a plan! You know we'll be praying for you guys each step of the way. Olivia is precious to us and to Jesus and we know that He is holding her in the palm of his hand!
Yikes - that's a lot for one afternoon! I hope it's helpful to know the dr's have something in mind, even if it wasn't what you were expecting.
Oh my.... I will be praying!
Cxx
Oh my...I will say a prayer for sweet little Olivia today!
Praying for you that all goes smoothly during the course of this plan and that you are able to get your sweet daughter home. You too! Lynn Lotz
Always thinking of you and keeping you in my prayers!!!!
Prayers, prayers, PRAYERS...can work miracles. You have many, many prayers sent up for you all each day. Now you just have to sit back and wait a little longer.
Mike and Linda
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