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Our nurse said she saw a tinge of red in Josiah's hair. Apparently red heads are harder to sedate. They've been amazed at the amount of sedative they've had to give him in order to keep him from thrashing around. We're glad he's a fighter.
It was just confirmed that Josiah has a blood clot in his right groin at the site of his central line. We're waiting in the atrium while the doctor and nurses try to give him another line in his right chest. Normally they would put a line right into his superior vena cava at his neck but they don't want to do that with Josiah as he has two superior vena cava which are narrower and thus having a line there would have the potential to compromise a future surgery. If they can't get this line in on the first try then they'll wait until tomorrow to put a PICC line (peripherally inserted central catheter) in him. This would go from his right arm all the way to where the superior vena cava enters the atrium. This type of line lasts longer and there is less chance of an infection. An ultrasound confirmed the blood clot but also confirmed that there is no bleeding in the brain.
What led up to this was the nurse noticed that Josiah's legs were cold and purple this morning so they gave him some heat packs. Then his right leg became swollen and gave all the clinical signs of a blood clot. They did a preliminary ultrasound to ensure that the clot wasn't in his chest and that was clear. Clots are quite common with a central line in the groin. The body is recognizing a foreign object (the line) and the blood clots around the object to attack it. There is still a risk of developing another clot wherever his new line is placed but the risk will be lower as he will be on heparin which helps stop new clots. The body will dissolve the original clot over time. This can take a few weeks to a few months during which time he'll get two injections a day.
Some of his numbers were also off this morning. His sugars were low again and they are not sure why but that number has come back up again. Also his mixed venous number was significantly down. This number shows how well the body and heart are working. He now has a large patch on his head that is a fancy saturation probe collecting information continuously. This data should correlate to his blood work that's done every few hours. His lactate is also trending up. This is a sign that the body is stressed. Thus, they are trying to keep Josiah completely sedated so that his body has to work as little as possible. They want to take the stress off his body. He's on morphine, ativan, and chloral and he was just given another sedative for this current procedure. His potassium level was also high so they've stopped giving him potassium (the level was previously low). He is still getting fed.
He's had "No No's" on the last couple of days. These look a little like water wings on his arms and they are meant to keep him from getting to his tubes to pull them out but they still allow him to move his arms. This morning he was able to wiggle himself out of one of his No No's.
The doctor is going to suggest at tomorrow's meeting that Josiah has a surgery that would temporarily alleviate the TAPVD (total anomalous pulmonary venous drainage - veins going from his heart under his diaphragm and through the liver before they go back to the heart). This procedure would put a shunt from the collector vein right into his atrium. This procedure has only been done twice by the SickKids surgeons.
Our amazing, incredible nurse L. was explaining how unique Josiah's heart is. A number of his conditions are quite common but they are not usually seen all together. For example, there are approximately 20 babies a year in Canada that are hypoplast in the heart. Josiah has a hypoplast (small) right ventricle but he also has right atrial isomerism, AVSD, TAPVD, etc.which are all unique in their own right. He is indeed fearfully and wonderfully made (Psalm 139)!
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Update:
The new line to his chest went in successfully on the first try. Thank You Jesus! Grandma and Grandpa Lucas just showed up with Isaac so Graham took Grandma and Grandpa to see Josiah separately. Unfortunately Isaac isn't allowed into the CCCU.
I think it's hit home a little more that these are serious challenges and we're going from day to day. There are a number of decisions coming up, so it was good to read the following this morning:
Psalm 32:8 (NIV)
I will instruct you and teach you in the way you should go; I will counsel you with my loving eye on you.
Thanks again everyone for praying for us and for your encouraging emails. Please don't take it personally if we can't get back to every one of them! Just know that we do read them and are strengthened by your support.
Blessings,
Elizabeth and Graham
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