Day 4 - a sun-filled room with William's vent set for 14 breaths per minute. He was making some breathing attempts, even up to an extra 4-5 breaths per minute... and other times completely dependent on the vent....progress none the less.
To top if off, he was making a few more movements, showing signs of trying to wake, open his eyes and even rubbed his eyes and face.
At this point, William still required very frequent deep suctioning of his lungs through the breathing tube. He'd require 85% oxygen after suctioning and time to rebound....it took a lot out of him and was still very difficult to watch, time and time again...
For the first time since surgery, William's labs looked much more stable and he did not require blood or albumin...but, he did need a couple potassium runs (the effects of receiving Lasix to reduce his fluid overload).
A dietitian came to discuss William’s feeding habits prior to surgery. I expressed concern that he had not eaten since before midnight on February 18. She said she was going to investigate orders to start TPN.
TPN was indeed started that night. A year later and still having William fully-dependent on TPN is certainly not what I would have foreseen last year on this first night.
~
~ a peak into these days ~
The PICU team knew William was not ready to be extubated...he was still requiring at least 12-14 breaths a minute by the vent and his oxygen saturations would start to drop over time when he was at lower vent settings. As the day went on, he became more and more grabby and eventually needed to be placed in restraints.
Here's one last picture of those out-stretched arms.
Our vascular ultrasound of William's left leg finally happened.....now that is was Monday (ugh!). His foot still had a poor pulse and was cool to the touch. In the end, the final report found decreased blood flow in William's SFA – superficial femoral artery, which supplies blood to the knee and foot. The report suggested this could have been from the a-line or from some type of stenosis/narrowing of the artery, perhaps congenital. In the afternoon, we finally heard from Dr. LaQuaglia’s fellow. He confirmed that the clot was definitely from the a-line. They wanted to keep an eye on it. William’s co-ags had been high and he was still too close following major surgery to consider a blood thinner.
Even changing William's diapers was a huge production. One person had to support the tubes and wires, while another person did the dirty end of things. William's scrotum was incredibly swollen....the skin looked like it could pop....it was literally painful to look at.
Sorry William.... I know someday you will be so mad at me for sharing all these details!
~ Poppie with our little 9-month old (sleeping) warrior ~
To top if off, he was making a few more movements, showing signs of trying to wake, open his eyes and even rubbed his eyes and face.
At this point, William still required very frequent deep suctioning of his lungs through the breathing tube. He'd require 85% oxygen after suctioning and time to rebound....it took a lot out of him and was still very difficult to watch, time and time again...
For the first time since surgery, William's labs looked much more stable and he did not require blood or albumin...but, he did need a couple potassium runs (the effects of receiving Lasix to reduce his fluid overload).
A dietitian came to discuss William’s feeding habits prior to surgery. I expressed concern that he had not eaten since before midnight on February 18. She said she was going to investigate orders to start TPN.
TPN was indeed started that night. A year later and still having William fully-dependent on TPN is certainly not what I would have foreseen last year on this first night.
~
~ a peak into these days ~
The PICU team knew William was not ready to be extubated...he was still requiring at least 12-14 breaths a minute by the vent and his oxygen saturations would start to drop over time when he was at lower vent settings. As the day went on, he became more and more grabby and eventually needed to be placed in restraints.
Here's one last picture of those out-stretched arms.
Our vascular ultrasound of William's left leg finally happened.....now that is was Monday (ugh!). His foot still had a poor pulse and was cool to the touch. In the end, the final report found decreased blood flow in William's SFA – superficial femoral artery, which supplies blood to the knee and foot. The report suggested this could have been from the a-line or from some type of stenosis/narrowing of the artery, perhaps congenital. In the afternoon, we finally heard from Dr. LaQuaglia’s fellow. He confirmed that the clot was definitely from the a-line. They wanted to keep an eye on it. William’s co-ags had been high and he was still too close following major surgery to consider a blood thinner.
Even changing William's diapers was a huge production. One person had to support the tubes and wires, while another person did the dirty end of things. William's scrotum was incredibly swollen....the skin looked like it could pop....it was literally painful to look at.
Sorry William.... I know someday you will be so mad at me for sharing all these details!
~ Poppie with our little 9-month old (sleeping) warrior ~
1 comment:
Dear Kristie,
Looking back to the events of last year reminds us yet again how fortunate we are that William is here with us today. At times during those scary days in the PICU, Dad & I feared William may not survive.
You were always right there tenderly caring for him, advocating for the best medically and many times making important observations that were critical to William's proper treatment. Even when he was under heavy sedation William responded to your touch and your voice. We can't help but believe that you gave William the strength and determination to recover.
As heartbreaking as it is to see our daughter go through the tremendous anguish of having a baby who is so seriously ill, Dad and I are very proud of you. We are always amazed by your ability to manage all that you do not only for William but for Nicholas as well.
This Blog gives you the opportunity to not only document life's events but also to express some of the feeling that you most often keep under wraps. We are thankful this outlet is here for you.
We love you Sweetie,
Mom & Dad
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