Sunday, February 26, 2012

Weekend in the hospital...

Who doesn't love spending the weekend in the hospital? Well, February 10th and 11th we did just that! Parker has been overly irritable lately. Every night last week he was up all night screaming. It seemed like he was inconsolable. For any other child, this would be written off as colic or teething, but for us it means a weekend in the hospital. His team had us bring him in and they did a few tests. He tested negative for RSV and the flu, thank god! He's had this damn upper respiratory problem for what seems like weeks now. They did blood work and took a specimen from his dialysis catheter. We stayed all weekend because they were under the impression he may be growing peritonitis. I knew better, though. His drain fluid was clear, he wasn't running a fever, or vomiting. I can tell them that I'm 99% sure it isn't peritonitis, but after the last spell of it, I'll never say 100%. So, we stayed. And I was right. It was not peritonitis! Better safe then sorry, though. They did come to the conclusion that he has a calcium blockage, though, which is like a massive constipation, and he has to pass that on his own. Guess we're in for a long ride.

SIX months old...

Today is a bittersweet day for us. Parker is 6 months old today! It's a whirlwind of emotions all over again. I mean, doesn't the clock have a pause button? It seems like just yesterday I was walking across a very long corridor, in a busy hospital, just to sit at his bedside and hold his hand. Today, however, we have been up since 6 o'clock and managed to watch "Mickey Mouse Clubhouse" and "Jake and the Neverland Pirates". We have eaten three bottles, taken a nap, played in the Bumbo, and finished tummy time. All before lunch! It's hard for me to think of the time when I believed the doctors, when they said that he wouldn't live. The time where I had given up hope and instructed my husband to take down the nursery. What was I thinking? Those doctors had no clue that my son had other plans for life. He has far surpassed any of their expectations. He is happy, healthy (other than his dialysis), and determined! When I say healthy, I mean that he is not a child stricken common illnesses like cold, flu, and RSV. He hasn't had problems with colic, reflux, or ear infections like most babies. He has his kidney problems, and those are big, but we are lucky that he does not have the "normal baby" issues on top of that.

So far, he has met most of his milestones. He may not be rolling over or sitting up on his own yet, but I have to remind myself that, not only was he a preemie, but he is a child who has had two major abdominal surgeries. I can tell you, though, that he is definitely not far behind. I watch him grow and learn new things each and every day, and every time I think to myself, "They said he wouldn't do that." I am a very proud momma! This life has become our "normal". It is definitely difficult and overwhelming at times, but it is also rewarding and humbling, too.

Tuesday, February 7, 2012

Lots to report..

So the last time I posted, we were going back and forth between the pediatrician and Children's begging for answers. No matter who I talked to, they couldn't find the problem and were quick to say "It's got to be the viral infection". I knew something wasn't right, but I'm a first-time mom and who am I to argue with three different doctors, who are all telling me the same thing? We even tried the reflux theory, which by the way, was a crock! An ER doctor even screwed up by reporting that his labs were normal, when in all actuality, they were dangerously low. Needless to say, because of this ER doctor, a member of our team made several phone calls. These calls reached all the way to the top, and those in charge were made aware of what happened to us. My only hope is that this doesn't happen to someone else. Since then, we have gotten his calcium back up into the normal range and discontinued his magnesium, because it was too high. Thank god, because that one tasted horrible! It smelled like rusty metal, so I couldn't blame him for not wanting to take it.

While we were going through everything with his eating issues, I talked to several kidney moms who had been in my place before. Many of them mentioned that his kidney levels -BUN and Creatinine- could play a factor in his eating and that when their kids' levels were high, they had loss of appetite. So, I pulled out my "Book of Parker" and low and behold his levels were 3-4 times higher than they were when he was chugging food. So, I went in to our next appointment and brought my ammo. As I'm asking the doctor why this is and what could cause it, he decides we need to change his dialysis fill volume. Apparently, we aren't pulling off enough fluid, which is in-turn making Parker feel full. Now, my problem with this situation is that we have several insurance charges a month from Children's, but one alone is over 50,000$! Yes, you heard that right- A MONTH! So his dialysis care should be at it's best at all times. I wasn't happy that I had to be the one to point this out, but as long as things get done to improve his health, I'll keep doing my research. Guess, I'll have to stay on top of them. I'm happy to report that our happy "Monster Man" is back and is eating like a champ most days! We have labs again in a week and if everything is doing good then we don't go back until the end of March! Finally, a break!

At our last clinic appointment, we got to meet with the transplant coordinator nurse. He answered a lot of our questions. Most of the tests needed from Parker for the transplant have already been done. Our hospital doesn't believe in being more invasive than needed;therefore, they will not repeat any tests. This was good news for us. When Parker reaches 8 kilograms, they will allow us to begin testing donors. I am type O blood type and will be tested, but due to blood pressure concerns we aren't sure if this will be an option for us. We found out that the donor has to be between 18-45 years old, type O blood type, and in good health condition. They have to have a good BMI, be up-to-date on dental exams and pap smears. They will need the following tests: an EKG, Kidney CT scan and ultrasound, chest x-rays, 24 hour urine collection, and LOTS of blood drawn. They will have to meet with surgeons, nephrologists, social workers, and a psychiatrist This is to determine how they feel about the surgery and make sure someone isn't being forced into it. For the surgery itself, the donor will be in the hospital for a total of 3 days. Discharge is two days after surgery. The surgery is laproscopic and recovery is 3-6 weeks. Our insurance and Medicare cover all expenses except loss of wages. Living organ donors may take a tax credit up to $10,000 to cover the costs of the donation, including unreimbursed costs of travel to and from the donation site, unreimbursed lodging expenses paid by the donor, and lost wages. There are several other programs that donor's may qualify for, though, such as
All-in-all it was extremely informative. We now know what the next step is for us and have a goal that we are working towards.

Pray that Parker stays stable and we can get to this goal quickly. He is almost 5.5 kilos now, so we only have 2.5 to go until we can start the process!

Almost sitting by myself!

Being silly!

Finally no fussing during tummy time!

Only 10 pounds left!

Sitting like a big boy!

Riding like a big boy in his stroller!