Woke up early Sunday with a fever of around 102 F. Headed to the ER later in the morning. Five billion tests later (seriously – the list included culturing everything under the sun, a spinal tap, and Xrays), we took an ambulance to Iowa City. Once here, they put him NPO (so, no eating) until we figured out what was going on. Another eight billion tests, including more Xrays, cultures, and labs, and 15 hours later, they at least nailed down that his GI tract was fine, his Gtube was fine, and he could eat. 15 hours. Poor kid. That was one long, miserable night. He would only calm down if I held him upright while standing, bouncing, swaying, and patting. No sitting for mama. At all. All night.
There’s been some back and forth with the surgeons about the leakage from his Gtube site. They keep reporting it as a small, insignificant amount, and the nurses and I keep reporting it as enough to soak his clothes and mine, too. Maybe it’s a discrepancy between what we each feel is “significant,” but I have in general been less than impressed with the surgery team when it comes to this Gtube, both last visit and this one.
So… we were then able to rule out peritonitis or any problem with the PD catheter. Which was good.
We seem to have it nailed down to the Broviac causing a blood infection. There was some talk about pulling the Broviac, but I believe it’s been decided to leave it in place unless the gram negative rods (doctor-talk for “the bugs”) are actually “stuck” (that WAS the doctor-talk) to the line itself.
He’s been getting five or six types of really high powered antibiotics. How he doesn’t have diarrhea is beyond me, though I’ve been giving him probiotics for the last 2 weeks, maybe they’re helping. Poor kid. We’ll continue with the antibiotics for seven days after his blood clears of infection. Which it’s not yet. They won’t let us go home until those 7 days are up. At the earliest.
His anemia is much, much worse. 6.9, I believe they said his hemoglobin is, and the even worse problem is his iron stores, which are just terribly low. He was scheduled to get an iron infusion Wednesday, but that’s off the table as long as he has this infection. They could give him a transfusion, but are reluctant to do so because it introduces antibodies from a different person, and that ultimately makes it harder to get a good match for a transplant.
His BUN and creatinine were pretty high on Sunday when we came in – 70 BUN, 2.4 creatinine. (which isn’t too bad for him on the creat, but it’s higher than it’s been lately), but those can go up when you’re sick or dehydrated, so it wasn’t as concerning as it would be if it were out of the blue. The ER doctor, who I did like a lot, said several times that his kidneys were hanging on by a thread. I was like “yeah, I know!”
The good news:
– He seems to be feeling much better. His fever is gone.
– He is gaining weight. So much so that they increased his minimum intake requirements.
– He doesn’t have to start dialysis yet, and won’t as long as the BUN and creatinine go back down, and his weight continues to go up.
Our Teddy Bear's Journey 
Hi, I have been following your incredible journey and praying for you. Our youngest son (3) was diagnosed with cancer last fall. went through chemo, and is now in remission so I know how hard it is to navigate these unsteady medical waters. He was able to have a power port for chemo and blood draws but because your Teddy is so little I don’t know if that is even an option for him.
I think that J’s hemoglobin needed to be above 10 for chemo. They never fell below 8.5. I don’t know what normal iron levels in a special needs newborn should be but I do know that breastmilk is low in iron and newborns have what would be considered low iron because pathogenic bacteria feed on iron.
Teddy is absolutely a beautiful little boy and is in our prayers.
Hi, Megan. Thanks for the prayers and I”m so happy your son is in remission. I ran into a dad in the nourishment room (fridge area) a few days ago who was beaming and practically giddy who burst out with the news that his son’s cancer was 90% gone. He was so happy, it brightened my own day.
Kidneys make a hormone called erythropoietin that tells the body to make red blood cells. When your kidneys don’t work, they don’t make that hormone, and anemia results. He’s struggled with it, and just as we start to get on top of it, something happens to upset the apple cart and it’s one step forward and two steps back. He’s been on an iron supplement since birth, and also gets Aranesp shots and iron infusions, but it’s a struggle.
Normal would be 10 or higher for hemoglobin and 30 or higher for HCT, even for kidney babies.
You’re right that breastmilk is lower in iron than artificial formulas, but it’s a form of iron that is absorbed remarkably well. Most healthy newborns do not need more iron than they are able to absorb from being 100% breastfed..