September 27,2006
We haven't been able to upload pictures for the past couples of updates. We'll have to figure out why and get a new one for next time.
Since the last update Zach has been weaned from most of his drip medications including fentanyl and versed. He is still getting a low dose of some milder medications and occasionally they'll give him a dose of fentanyl or versed if he gets aggitated or before they do some kind of procedure. He has also successfully weaned from the nitric oxide.
Zach has been dubbed the 2 day baby because he seems to stay infection free for about 48 hours after they stop antibiotics before he requires them for something else. This week he got another staph infection in his blood. He is on antibiotics for that and yet continues to spike fevers on and off. The doctors have sent cultures for everything they can think of. Little Zach is just a complex baby and likes to keep us all guessing.
They did another abdominal CT scan today to see if they can determine any abnormality in his digestive system. They also drew some blood earlier in the week to send to Johns Hopkins Children's Center in Cinncinati to test for a genetic mutation called Surfactant Deficiency. If you're interested you can read more about it at http://www.medicalnewstoday.com/medicalnews.php?newsid=6783. The doctors are testing for this to see if it might provide some insight as to why he is requiring such high levels of support on the ventilator. Regardless of the test results Zach's care plan will not change as there is not currently a treatment for the deficiency. The doctors simply want to check and we hope of course that the results come back negative.
As far as feeds go he is currently on 18cc/hour supplimented with IV nourishment and has really tipped the scales at 21 lbs!!! Yes you read right, 21 lbs. Hooray for Zach! We've asked him to grow and he has certainly listened. He melted our hearts today as he laughed with us for the first time. We believe that Zach's perspective is different from ours when it comes to enjoying life. He reminds us regulary to be thankful for the small things. He endures his challenges well and has a strong spirit about him. He continues to fight each day and we all continue to hope for the best. Thank you so much for love and concern.
Since the last update Zach has been weaned from most of his drip medications including fentanyl and versed. He is still getting a low dose of some milder medications and occasionally they'll give him a dose of fentanyl or versed if he gets aggitated or before they do some kind of procedure. He has also successfully weaned from the nitric oxide.
Zach has been dubbed the 2 day baby because he seems to stay infection free for about 48 hours after they stop antibiotics before he requires them for something else. This week he got another staph infection in his blood. He is on antibiotics for that and yet continues to spike fevers on and off. The doctors have sent cultures for everything they can think of. Little Zach is just a complex baby and likes to keep us all guessing.
They did another abdominal CT scan today to see if they can determine any abnormality in his digestive system. They also drew some blood earlier in the week to send to Johns Hopkins Children's Center in Cinncinati to test for a genetic mutation called Surfactant Deficiency. If you're interested you can read more about it at http://www.medicalnewstoday.com/medicalnews.php?newsid=6783. The doctors are testing for this to see if it might provide some insight as to why he is requiring such high levels of support on the ventilator. Regardless of the test results Zach's care plan will not change as there is not currently a treatment for the deficiency. The doctors simply want to check and we hope of course that the results come back negative.
As far as feeds go he is currently on 18cc/hour supplimented with IV nourishment and has really tipped the scales at 21 lbs!!! Yes you read right, 21 lbs. Hooray for Zach! We've asked him to grow and he has certainly listened. He melted our hearts today as he laughed with us for the first time. We believe that Zach's perspective is different from ours when it comes to enjoying life. He reminds us regulary to be thankful for the small things. He endures his challenges well and has a strong spirit about him. He continues to fight each day and we all continue to hope for the best. Thank you so much for love and concern.
posted by Tieryn at
7:51 PM
3 Comments:
We think of you all often, and I check Zach's page almost daily. We are praying for your family and especially for Zach. Take care.
Love,
The Joneses
Hey! We are always glad to see the update too bad there are no web cams so we could pop in and see him whenever we wanted. Zach is an amazing baby. He does has a unique perspective I am sure. He has changed the way I think about many things. He is no longer a small baby! Greg and T better get ready to carry that big boy around!!! We do not tire in our prayers for him!!
Greg and Tieryn,
We check on Zach often, and he is in our prayers.
Steve & Joy
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