I can't believe it! Our tiny boy broke the 5 pound mark today! Tonight he weighed in at 5lbs 1oz. Considering when we got here on Thursday night he was 4lbs 10oz, I'm very excited!
On a negative note, we are back in the NICU. Thursday we went in for a routine pediatricians appointment which for Levi, always involves blood work. His blood work did not look good. The electrolytes were way out of wack. For a kid with one kidney and chronic renal failure, this signals to the doctor that the kidney is failing. Off to KC we go. Once we got here everything happened so quickly. They started running labs again and scheduling ultrasounds and getting him all checked out again. Come to find out, he has a uti. This is not good because that means that the antibiotic that he was on for his reflux was not doing the job. Once we got the labs back, we found out that the infection was actually in his bloodstream as well. This infection is similar to an E. coli bacteria. It can be common in kids with the reflux and hydronephrosis. Tomorrow they are going to do a spinal tap to make sure that the infection has not spread to his spinal column or his brain. If it has, the course of action is still the same, it just extends the process 11 days. His little body has done such a great job of fighting the infection. The doctors all kept asking us what signs of infection he was showing and the truth is- NONE! His body was fighting so hard against the infection, that it kept it at bay for days. It only truly showed itself once he got here and they pulled him off of his routine antibiotic and started letting new medicines and IV's do the work for him. Turns out, this infection is what was throwing his electrolyte levels off, and what was causing him to not gain any weight for a week. They have also put him on some mineral supplements to try to get his electrolyte levels back on track. So far, they need to work harder, but we're making steps in the right direction. The procedure on discharge for him is that he has to finish all of the antibiotics, get his electrolyte levels back in order, go two days with no signs of infection in his blood or urine, then be under observation for a few more days, then we'll be discharged. This comes out to 10-25 days. We're hoping to be home by Christmas. There's so much to tell about what's going on and how we're adjusting to life with a chronically ill kid. It's frustrating and scary to know that every time he gets the smallest germy bug, it could land him right back here. This is all part of our journey with Levi. We knew when he was still in utero that there was a good chance this would be our life once he was here. I hoped and prayed that this would not be the case, but God chose differently. I'm amazed that he trusts me to handle Levi. That God has given us HIS strength to make it through these trying times with Levi. I am so blessed to have a God and husband that trust me and empower me to be a good Mom to him.
Listening to music with Daddy today
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