Hello everyone,
Wanted to take an opportunity and update everyone on Brennan's progress. First, and perhaps most important, he is happy, playful, active, has an appetite and is growing (15.5 lbs and 26 inches long)! These are some of the most important and positive characteristics to consider when kidney patients are involved. Encouraging for sure, especially his length, which has been increasing steadily, telling us that he is ingesting adequate protein. If these traits are not evident, then the dreaded "D" word (dialysis, of the peritoneal method) becomes a possibility. In light of his fighting spirit, and our determination to not let this happen I will spare you the details of this process, but wanted to let everyone know the challenges we face.
Another vital component of the equation regarding his kidney function are the results from his blood work. His most recent blood work looked good with the exception of his creatinine level 2.1, up 0.4 units from last month (a measure of the protein in the blood) resulting in a reduction of his kidney function from 17 to 14% this month. For perspective, in normal adults the creatinine level is 1.1 to 1.3 and if those levels approach his levels, one can be guaranteed a not so happy trip to the ER. With this in mind, it is amazing he can function and develop as he is showing. This increase could be due to: a little stomach virus, which was causing him to throw up a couple of times per day; and his intake of Stage 2 baby food with meat in it. It is possible that his new intake of meat products results in higher protein levels that he currently cannot handle. For this month, we are cutting out the meat and he is not spitting up as much, so it looks like he is turning the corner with that.
Other blood work results are currently and have been stable. Our doctor, Dr. P., spelled out the clinical definition of dialysis needs pertaining to these other parameters. These are included to give insight into the inherent complexity of factors that affect the kidneys and not intended to confuse, but outline some numbers to shoot for.
Parameter Dialysis occurs if Brennan's current numbers
Potassium (anything above 6) currently 3.8
BUN (anything above 80) currently 51
Bicarbonate (anything less than 15) currently 23.5
As you can see, we are in the clear right now. Kidney patients who lose their appetite are fed through a feeding tube. We are determined to make sure that scenario doesn't happen either.
Dr. P. is, in a word, fantastic. She preaches nutrition, nutrition, nutrition. The more food intake he has, the better his numbers. Because the protein intake can be problematic we add carbohydrates and fat calories where possible. Normal breast milk or formula rates at 20 calories per ounce of formula. We mix his formula at 22 calories per ounce and then supplement that with a powder that contains calories in the form of carbs and fat for a grand total of 29 calories per ounce. A baby with normal kidney function would be on Weight Watchers with that caloric intake! Additionally, he eats baby food, not much, but enough to get used to it and add some calories.
In February, Brennan had a sonogram of his kidneys which revealed there has been no growth of his kidneys as may occur during the first 6 months of life. After 6 months, your kidneys stop growing; thus, the ability to receive a transplant at 1 year of age (20 lbs in body weight). At our last visit on Monday, we spoke with Dr. P. about the transplant scenario.
When he reaches 19 lbs he will go on the donor list and Johely and I can be tested for compatibility. At 20 lbs, he is eligible for transplant. The longer we wait while he is not on dialysis, the better his chance for a speedy recovery from the operation.
Projecting his current growth trend, he should hit 20 lbs in about 10 months, next January. If he goes on the donor list at 19 lbs, say in November of this year, there is typically a 6 month to 1 year waiting period for a compatible donor. There are rare occasions where a donor match can occur within the first few weeks of going on the donor list. If he receives a "block" transplant from a deceased donor, he would receive 2 kidneys instead of one. Because of his current caloric intake, the Dr. informed us that many kidney patients need to go on a diet once they get their new kidney(s) because they really start to put on the weight.
Right now, it is a bit of wait and see game as to which avenue we explore with the transplant procedure. It depends on so many factors. Our Dr. prefers the block method, but we will do whatever necessary to make him better! One thing is certain, he will need multiple transplants throughout his life. A live donor kidney is good for 20-25 years while a deceased donor kidney typically, does not last as long.
Another complicating factor, completely out of our control that we are watching closely, is the status of Jackson Memorial Hospital in Miami as it is currently $200 million dollars in the red. Generally considered a fine venue for transplant procedures, it is horribly mismanaged financially. The uncertain status of this hospital, which has the all important trauma center and organ transplant center (staffed by the very capable doctors from the University of Miami), is leading us to explore other transplant venues. Gainesville, about 4.5 hours away is a possibility. When notified of a viable donor compatibility, transplant must occur within 48 hours, so there would be plenty of time to get there. The recovery period can last from one week up to one month depending on the individual.
After transplant there will be the need for medication. The closer the match of the donor organ(s), the less of a need for immunosuppresant medication to thwart rejection.
In light of all of this, we are lucky. Dr. P. shares the horror stories of the little 4 month old girl with creatinine of 1.4 who was just recently taken off of dialysis, living in the intensive care unit since she was born and she won't take food orally, only through a feeding tube. And there are many more horrid tales and not just kidney patients. When we go to Miami Children's Hospital, once a month to visit Dr. P we see many children affected by various illnesses. Witnessing these scenes, makes us feel fortunate, especially when you see the look of helplessness on the parent's faces.
Dr. P reminds us that we are his biggest asset. So many children are abandoned by their parents when they find out a transplant is required!
We consider every day a victory. Keeping it in a day to day perspective allows us to concentrate on the moment with him and focus our efforts on helping him grow, learn and eat (did I mention eat?). This is not to say we are without a few bumps and hiccups in the road and we can get frustrated; after all we are only human.
But to see him.....He is so worth it. Just this morning he awoke (he never cries when he wakes up) he just starts playing, and I went in to get him and there he is, standing up for the first time in his crib holding onto the side with that big dimpled smile, tongue sticking out and eyes twinkling with anticipation of a new day to learn, grow and eat.
Sorry for the long winded update, but wanted to keep everyone up to date. Keep us in your prayers, they are working!
Much love,
Scott, Johely, Kyle and Brennan
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