Hello everyone!
June 10th marked Brennan's 1 year birthday complete with a big birthday bash and magic show! Since it has been a few months since our last correspondence we wanted to present an update to everyone.
Currently, he has passed the 17 lbs mark! Certainly, to this point, his weight gain has been an uphill battle and continues to be so; but we are gaining! Kidney babies have vomitting problems and this is the case with Brennan. It presents problems for his food intake and his weight gain, but we are trying to manage this and compensate. Essentially, if he throws up, we feed him again. We used to wait for his tummy to settle, but after he throws up he is fine and will happily take more food. As of now, beacause of his condition, Brennan is a vegetarian; he simply cannot process animal protein. So, no cheese, ice cream or meat....yet.
In recent months, his blood analysis has revealed that his creatinine level has increased from 2.0 in April slowly increasing to 2.4 in early June resulting in a simultaneous decrease in his kidney efficiency from 15 to 13%. This is not good news, but realizing that everything pertaining to his condition is relative, it is not all bad news either. The reason this is not all together bad is his activity level.
Beyond his blood analysis, we monitor his energy level very closely and I can assure you that he wears us out! He is constantly on the go, crawling, exploring, and beginning to stand on his own, much like other 1 year olds. In fact, there is not much difference from other babies his age.
Dr. P, our nephrologist, continues to provide fantastic guidance and helps to provide a beacon of hope to us when the day seems dark (as they sometimes do although infrequently). Case in point from last week; we had a cold virus run through the family that everyone fought last week. For Brennan, it was a fever and a general under-the-weather feeling. Often, a fever may dictate a potential urinary tract infection which would be a very bad thing for his condition. Fortunately, Brennan had bloodwork and a urinalysis the day before. A quick phone call to her office resulted in a prompt return call from her as she was on the road going to a conference telling us not to worry and she would double check the white cell count and the urinalysis. Then, she did what 99% of doctors do not do; she gave us her pager # and cell phone # and told us to call her if the fever goes over 103! Can you imagine a doctor doing that? She is unbelievable! We are so grateful she is on our side.
With the recent results of the bloodwork and the slight upward trend in creatinine and decrease in treatment efficiency (and the dark shadow of dialysis lurking), Dr. P has increased his caloric formula mix to 40 calories/ounce to speed up his weight gain (normal breast milk and store bought formula is 20 calories/ounce). Dr. P has decided the fastest course of action to expedite his weight gain is to continue to bottle feed him which limits the possibility of him eating solid food, since we constantly feed him and he is always full with the formula. Really, this helps him in two ways: weight gain and helps his blood work since the more volume he ingests the better his kidneys work. For now, he eats baby food once a day, but that is just to keep in practice and play with the spoon and get a taste of something slightly different
In August, Brennan will undergo some chest X-rays, ultrasounds on vital organs and a dye test in his urinary tract as sort of check up and preparation for transplant.
We hope to initiate transplant paperwork and testing in the fall, depending on his weight gain. We like to be optimistic but pragmatic at the same time, since there are certain to be bumps ahead in the road. Dr. P has told us, because he is a baby, he goes to the top of the organ recipient list. Johely and I are more than willing to donate but that depends on compatability and since throughout his life he will need multiple transplants, if he received a kidney from one of us, he would not be placed at the top of the list since he will not be a baby any longer. So, it seems the wise course of action would be to get on the transplant list, hope for compatability with another donor his age, from whom he would receive 2 kidneys and keep Johely and me in reserve in case of emergency.
As we close in on the 20 lb mark (when he is officially eligible for transplant), I can't help but think of what he feels. If he hurts, he sure doesn't complain. We also worry about post transplant and the inherent hurdles associated with that. But, kids are tough.
Look what he can do at 13%! There was a day last week when I was changing him and these thoughts were running through my mind, as they often do, and my worrying ways were heavy on my mind. In the course of this deep moment of thought, I sealed his diaper and buttoned up his outfit, which depicted a smiling cartoon-like chimpanzee lifting a way too heavy awkward looking barbell over his head with the caption, "Stronger than you think."
Thank you for all of your thoughts and prayers!
Scott, Johely, Kyle and Brennan
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