I've delayed writing this post because it's hard for even me to follow. Here goes: Ira needed two IVs coming out of surgery. One IV was used to feed him his TPN. The other IV was kept as a back-up because Ira is a notoriously hard stick -- meaning, they have a hard time finding veins good enough for IV use. Since coming out of surgery, Ira has gone through several different IVs. The best nurses, technicians and doctors have worked on getting a IVs for Ira.
When we left Ira on Monday night everything was as it should be: Flolan through the Broviac, TPN through the IV in the head, an extra IV in his foot, CPAP, the G-tube in place but not in use yet...
We called on Tuesday morning to see how Ira was doing and the report we got was disturbing. The Broviac line clotted and both IVs were lost at some point in the night. So for some time Ira was neither getting his Flolan to control his pulmonary hypertension nor was he getting fed. Doctors rushed to the scene because of Flolan's short half-life and made some very big decisions.
They got the Broviac unclotted. They then began discussing what they should do next: get the Flolan going or get Ira fed. To get Ira fed - the surgical team was still not comfortable using the G-tube just yet - they would need to stick Ira again for an IV to give him his TPN. They decided to feed Ira through the Broviac line and to forgo the Flolan. Instead they gave him Nitric Oxide through the CPAP to hopefully control the pulmonary hypertension.
And that's how we found him on Tuesday morning. Our attending was incredibly apologetic that we were not called when all this went down. We weren't too happy either.
There are quite a few questions about what to do next for Ira. Does Ira really need the Flolan? Could it be that Ira could take something orally for his pulmonary hypertension like Viagra? We tried it once, could we try it again?
They did all kinds of tests yesterday to make sure everything is okay. They did an ECCO to make sure the heart was still functioning properly and they did a culture on the Broviac to see if the line was infected in any way. If the line is infected this could be very serious and the ECCO test showed that the artery the Broviac is in is constricted somewhat. We are anxiously awaiting the culture test as the implications are huge.
But in the midst of all this (and you should picture me whispering at this point with a very cautious look on my face) Ira looks good. His oxygen is still at around 23-25% and Ira generally looks more comfortable and happy then before his surgery. The doctors are kinda baffled as they didn't expect much change for Ira coming out of surgery but it's evident that life for Ira is much better...at the moment.
When we left Ira on Monday night everything was as it should be: Flolan through the Broviac, TPN through the IV in the head, an extra IV in his foot, CPAP, the G-tube in place but not in use yet...
We called on Tuesday morning to see how Ira was doing and the report we got was disturbing. The Broviac line clotted and both IVs were lost at some point in the night. So for some time Ira was neither getting his Flolan to control his pulmonary hypertension nor was he getting fed. Doctors rushed to the scene because of Flolan's short half-life and made some very big decisions.
They got the Broviac unclotted. They then began discussing what they should do next: get the Flolan going or get Ira fed. To get Ira fed - the surgical team was still not comfortable using the G-tube just yet - they would need to stick Ira again for an IV to give him his TPN. They decided to feed Ira through the Broviac line and to forgo the Flolan. Instead they gave him Nitric Oxide through the CPAP to hopefully control the pulmonary hypertension.
And that's how we found him on Tuesday morning. Our attending was incredibly apologetic that we were not called when all this went down. We weren't too happy either.
There are quite a few questions about what to do next for Ira. Does Ira really need the Flolan? Could it be that Ira could take something orally for his pulmonary hypertension like Viagra? We tried it once, could we try it again?
They did all kinds of tests yesterday to make sure everything is okay. They did an ECCO to make sure the heart was still functioning properly and they did a culture on the Broviac to see if the line was infected in any way. If the line is infected this could be very serious and the ECCO test showed that the artery the Broviac is in is constricted somewhat. We are anxiously awaiting the culture test as the implications are huge.
But in the midst of all this (and you should picture me whispering at this point with a very cautious look on my face) Ira looks good. His oxygen is still at around 23-25% and Ira generally looks more comfortable and happy then before his surgery. The doctors are kinda baffled as they didn't expect much change for Ira coming out of surgery but it's evident that life for Ira is much better...at the moment.
posted by jch at
8:03 AM
11 Comments:
My sweet, sweet son and my precious Laura....also darling Sophia and incredibly wonderful Ira, My love to you all today and forever as you continue to work together to help Ira have everything he really needs...oxygen, blood, food...Oh God, hear our cry, please hear our cry! Please heal Ira and let us love him here on earth for a while. He is so precious and has fought so hard. And, Lord, you have blessed him SO MUCH....two wonderful parents...a wonderful sister....wonderful grandparents (KK, we continue to be thankful for your sacrificial love for your children and your grandchildren. We're praying for you!)...wonderful aunts, uncles, cousins, and many extended family members...both biological and through Christ and through friendships. How blessed we are.
I heard something recently that was interesting to think about: For those who don't know Jesus, life on earth is the only heaven they will ever experience. For those who do know Jesus, life on earth is the only hell they will ever experience. I know some days when you guys are soooo heartbroken that your wonderful son is getting stuck or uncomfortable or hungry, you think this life on earth is hell. But God continues to walk right along beside you and loves you for your faithfulness. Peace and love,
Mom/Glo/Gram
Another terrifyingly-scary-yet-amazingly-hopeful day in the life of Ira. Thanks for sharing these details with us, Joe. We continue to pray for the doctors' good judgment and a good report from the tests... and for you, any moments of peace that are possible. We love you guys.
I ask God to pour into Ira's little mind, in "infant language" (that only God can communicate), how incredibly he is loved by God and by all the folks who are tending to him. Maybe Ira's peace and comfort are the result of God's very voice in Ira's heart loving him. Thank you for your steadfastness. God is faithful!
Thank you for the update, as I am sure it is hard to talk about. We will continue to be in prayer. I am speechless... well, almost.
I did appreciate the above post from anonymous and it reminded me of something I read once (I think it was "Cosmic Christmas" by Lucado?), anyway, it talked about an angel whose only job was to fly along Michael and whisper truth. I have loved that thought and have prayed for that specific thing for people often. I will pray that Ira is surrounded by God's army and that one angel will whisper comfort and peace to your precious baby. And for each of you as well.
With humbleness and prayer,
lisa c
I'm reminded of the story of the little girl who was premature and the doctors said there was no hope. God had other ideas and she lived and flourished. At a little league game for her brother there was a storm coming and she sat in her mother's lap and asked 'Do you smell that?' The mother said yes, it was rain, and the little girl said 'No, it smells like Jesus when he holds you in his arms'. Right now Ira is smelling the rain.
Stay strong, and rest when you can.
Sherry Tilley
Tahoka
Joe and Laura,
Please know we are praying for you. God Bless
I was led to your blog by Mike Cope. Please know that I and many other people are praying for Ira and all of you.
In His Love,
David U
Joe and Laura,
My prayers are with you both, with Sophia and especially with Ira.
Joe, until I read through your blog today, I did not know that you were Joe and Glo's son. It certainly brought it all closer to home. You went to White River with my kids, Michael and Lorena.
(Didn't you used to go by Joe Clyde or was that someone else?)
May God grant Ira healing; may he sustain you and give you peace.
Serena Voss, Post TX
Joe and Laura,
I was unable to check the blog for a few weeks due to a move. I have thought of you all a lot the last few weeks and wondered how things were going since I couldn't read the blog. Still praying...
Tracy
Joe and Laura,
God gives you nothing more than you can handle, so it looks to me as though he thinks you can handle alot.
Nikki Box
Well, if that's not the most precious little guy! The pictures are fantastic, and I will have to spend some time looking at all of the rest of them! One of them really showed his claim to his Gram, he favored her so much!! (Sorry to the rest of you parents/grandparents!) It hit me as soon as I saw it. You probably don't know which picture I'm talking about, but look at them again. I think it is so easy to see. He has really grown and filled out since the first pictures. He's so precious!
I had a party of 15 here Friday night, and Conrad Cabe offered up a very sweet prayer for Ira. Prayers will go up again Sunday evening when we have our care group here. Ira is in the hearts and minds of so many people. He's our little warrior, always fighting and hanging in there. We all love him so very much.
To Serena in Post, yes Joe was (& still is to some of us) Joe Clyde during his "youth". That was to distinguish him from Granddad Joe (the bald-headed guy).
Tell those nurses to stay on their toes, and to keep our Ira comfortable.
Love to you all,
Weedon
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