Overnight labs and xrays showed improvement upon the one's before them.
They are saying that he is still very sick, and not out of the woods yet of course, but that his situation is much less dire than it was 24 hours ago. Their expectations is that he will continue to make small improvements slowly. however, they warned us that sick babies like this oftentime will have many small advances and then a big setback. Ugh. His poor little tummy is still so tender to the touch, that they upped his morphine a little. Whenever they have to examine him he goes from being still and calm to eyes open and squirming. So a little more morphine to make him more comfortable as they HAVE to touch sometimes. I am expecting that to make him less likely to open his eyes as much right now, but it's for the best.
They have detected Gram Negative bacteria in his blood. That is of course bad. There is a chance that could get to his brain or other organs. The only way to test for this is to do a spinal tap. Right now, he is not well/strong enough for a spinal tap. In a couple days, if he still improves, they will do the spinal tap and see if it shows any trace of the bacteria. Obviously, it is everyone's hope that it does not. If it does not, they will continue the IV antibiotics and IV nutrition for 14 days. If it does, or if he is not well enough for the tap still, then IV antibiotics and iv nutrition for 21 days. Then we can begin feeds. It was relieving just to hear them talking about more than the next 24 hours!!!! But they are also talking 2-3 weeks of just antibiotic treatment alone, so we know we still have a long road ahead of us.
A Neonatal/perinatal researcher came by and they would like to add Riley to a study for NEC and the drug treatment he is on. We are all for that with one exception....they have to obtain urine/blood and some other sample (i forget at the moment). As long as the urine collection doesn't involve something invasive like a catheter, we will sign him up as part of that study. We just don't want to add any more discomfort to him.
Social workers have come by to make sure we are eating and sleeping :o) and brought us a little gift of a newborn hat and blanket. A Resource Manager is lining up a room for us at a local hotel, and someone else is supposed to come by as well. So all in all a very busy morning.
I'm sure I am leaving something out but I am in a hurry to go see him again before getting some lunch.
Just a warning....most updates will come from my cell phone from here on out as we won't have a room right next to the ICN with a computer available. Please excuse any horrific misspellings!
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Lindsey
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Lindsey
5 comments:
Lindsey, You may not know me...I am a friend of Michelle and Scott. I just wanted to let you know that our prayers are with your beautiful son and also with your family. If there is anything that I can do please let me know...We will continue to pray for your little one.
Colleen Deming
Hi Lindsey, We continue to pray and ask God to heal little baby Riley and to give him the strength to continue fighting. We are also praying for you and Jay to receive strength to be there for little baby Riley. Love you bunches, Pauline
Lindsey,
I connected to your blog through Michelle. My son was born at 24 weeks at Duke. On Oct 5, 2007, he was diagnosed with NEC. Your son is being cared for by phenomenal people. I cannot tell you how wonderful the staff there is. He is now one year out and doing quite well.
You mentioned not having a computer. There is a family room sponsored by Ronald McDonald House that is on the 5100 hall across from the elevators. There are computers there as well as snacks and coffee. It is staffed by volunteers, so it's not open all the time, but the hours are supposed to be 7 a.m. to 9 p.m. It can provide you with a break from the stress in the NICU.
Make sure the social worker is also working on getting a room for you at RMH. Once the referral is made, you will need to call Chris daily to make sure he knows you really want a room. This was great for us because we could actually get some rest, but were soooo close to the hospital.
I have passed along my contact information to Michelle. If you have any questions about anything, please do not hesitate to call me. Sometimes it's easier to ask questions of someone who has lived through a similar experience.
Lindsay, Was just thinking of you, Jay and Riley. Mom and I have sent up prayers for all of you. William has requested all of his friends to pray for Riley as well along with Mom's church group. Please give Riley butterfly kisses from all of us. Pray all future news will be positive. Love you...Aunt Brenda
Lindsey, you don't know me either. I am Vonnie and I go to church with dear friends, Jay and Christie Pope. My husband and I are praying fervently for Riley. We are also praying for you,your husband and entire family. Phil. 4:13 says, "I can do all things through Christ who strengthens me." May you feel His strength right now.
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