So, I know it sounds silly and everyone has been asking what's up with Preston and what led to his hospitalization this last week. When I tell them he had bronchitis I see this look and a raised eyebrow nearly in disbelief. It's even hard for me to believe how something that is a "routine illness" that so many people can do easily overcome, could possibly be so devastating to cause nearly a weeks long stay in the hospital. It was a combination of the bronchitis and the congenital nephrotic syndrome that was the problem.
As I mentioned previously, CNS is when your kidneys have porous gaps that allow the spilling of all of the protein in the body. Virtually no protein remains in Preston's body and he literally pees it all out. Included in the protein are antibodies that would help to fight off sicknesses and gain immunities to bacteria. This is one reason that Preston is so at risk for infection and illness. In addition, Preston is also on a medication that suppresses his immune system further. This specific drug is given to transplant patients to help the body avoid rejection if the new organ. While Preston has not yet had a transplant, the drug is being used in combination with some other drugs int he attempt to to reduce his kidney function so that he will hopefully lose less protein. We learned this is called a "medical nephrectomy".
So because he has CNS and has a SUPER compromised immune system, he got some kind of cootie that caused the bronchitis. He was really congested over the memorial day weekend so we kept an eye on him through the weekend.
On top of the congestion, weekends are Preston's "days off" from his IV infusion of albumin (a protein blood derivative) and generally over the weekend he gets a little swollen with excess fluid that his body can't shed on his own and so it was a combination of the bronchitis and retained fluid that then led him to....respiratory distress....dammit.
Tuesday morning we could tell he was overall just generally uncomfortable and struggling to breath. So to the doc we went. Our Ped was still out for the holiday weekend but the Dr on call had some general knowledge of CNS to know that it's not something that could be treated locally in Red Bluff because things could go from bad to worse real fast. He ordered up an x ray to rule out pneumonia but still recommended a transfer to Stanford where Preston's nephrologist is located so he could be monitored.
Of course they wouldn't let me fly with him so Tyler and I drove down to Palo Alto with an empty coarsest in the back seat. It was a LONG ride down. Preston had beat us there and his flight was only about 2 hours and we were walking down the hall and could hear our baby screaming. We followed the cry to his room to find one starving kiddo. Struggling to breath and with all of his congestion, he hadn't been eating well so it was music to my ears to hear the hungry cry.
While we were there he was tested for all kinds of infections and blood work ups and tab swabs. All if which were mostly inconclusive so it was determined to likely be a virus. I never thought I'd be happy to hear it was just a virus. Dreading an infection, we were told that Preston will only have 2 or maybe 3 strikes (illness). If he has multiple strikes against him, he will need a nephrectomy and will have to go on peritoneal dialysis. With one strike already against P when he had sepsis, I was in fear that this would be the final straw, and that we would be back in the hospital another month for the kidney removal.
Luckily we escaped and the doc said that he'll let it slide because it's normal kid stuff and not a more serious infection. After three days in a row of his infusions, Preston was back to baseline (in that he wasn't super swollen with excess fluid) so he was able to breath better and the cough and crud was finally dissipating.
So after 5 days were home again. While down there we certainly got a taste of reality of what it will be like when the time comes for him to have the surgery to go on dialysis and then again for the transplant. We learned just how serious this is, not that we didn't already know. We saw many transplant patients at the hospital and they have to wear masks and respirators to prevent them from breathing in germs that would cause illness and rejection. If I didn't think I was a germ freak already, now I know I'll be an even bigger germaphobe.
I've never seen so many BEAUTIFUL children as I saw this last week. It was obvious many were undergoing cancer treatments and probably other treatments that I cannot even fathom. It was like watching a St. Judes children's hospital commercial and feeling the reality and the seriousness of having a sick child and then realizing...my baby is one of those sick kids.
So while I'm happy and VERY THANKFUL to be home, I'm also very thankful to have had such an awesome facility and some great Doctors at out service. I felt like if we had to be there, it was a good practice round to get our toe in the water and feel out how life will be at that hospital for when the time comes for the next step. I'm just hoping that next step is when he's 22 lbs and over 1 year old, which is the target that he must reach to receive the transplant.