Tuesday, January 17, 2012

Another one of those days..

So on Tuesday I had to take Parker in to the ER. He still wasn't feeling well. He was vomiting, constantly, screaming, and now running 100.9 fever. Anytime we go to the ER-unless it's extreme emergencies- we have to go to Children's, which is an hour and a half away. So one of my best friends came with me. We both packed bags just in case and we hit the road. Our first problem occurred when we got to the Luiling bridge. As we are approaching, I see a cop car sitting at the foot of the bridge with his lights on and a huge sign. As we get closer I see it says "Road Closed". Seriously? As if that sign couldn't have been put before the exit to let people know the bridge was closed and to take the West Bank? So we get detoured down river road, which is the longest road ever and I have to take the Huey P. Long bridge. I am freaking out! Silently of coarse- ok maybe not so much. I have never even been on this bridge before- for obvious reasons- much less driven on it. I tell Kandice to say a prayer and then I take a deep breath. Not so bad after all, but I will still take 1-10 from now on! So we get to the ER and they take us straight back because our team had already told them we were coming. It was actually quite nice. The doctors listen to him, test for RSV, do chest x-rays, blood cultures, dialysis specimens, and check his electrolytes. (Remember this for later) Everything comes back "fine" and we are sent home. Basically, we are told its a virus and there is nothing they can do for it. We have to ride it out, but give Tylenol every 4 hours for fever. Frustrating, right? So, remember I talked about Parker's electrolytes? These are his calcium, phosphorous, potassium, iron, magnesium, sodium, etc. Your kidneys regulate these for you in a sense, and since Parker has none, he is a human "chemistry set" like Jason says. We have to monitor these like crazy because in the blink of an eye they can go drastically up or down. Well when the on call nephrologist-kidney doctor-called the ER to check on Parker's electrolytes, he was told they were all "normal". So the next day his team gets in to the office, double checks them again, and of course, they are not normal. His calcium is dangerously low. His calcium has always been really high so his dialysis solution was always low-cal. This brings us to today. We have to go up there for repeat labs. Sandy and I leave the house thinking everything is fine so we don't pack bags and we head to the city. We go straight to lab for blood work and then go upstairs to dialysis. Well his calcium was still super low. Actually "dangerously low" were the exact words. If he bottomed out any more than he alraedy was, he was at risk of seizing. So of course now I am freaking out! Then they start talking about admitting us to do a calcium infusion through IV. If they do this it's possible we could end up in the PICU, because the floor may not be able to handle this. At this point my head is spinning, and the tears are flowing. I have hit meltdown city! Luckily, we were able to give him calcium orally and do another blood test. He immediately started looking better. It was actually crazy how quick this worked. The doctors eventually decided to let us come home, because he was not symptomatic. We are giving him calcium carbonate by mouth three times a day and are now on regular calcium dialysis solution instead of low-cal. We have to go back to Children's Hospital Thursday for more labs to make sure his calcium is coming up. Another long day in the city, but well worth it. I am happy to report that besides his viral symptoms, he is feeling and looking much better. Please keep saying prayers!
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Saturday, January 14, 2012

A rough few days..

So, as usual, as soon as my husband goes to work all hell breaks loose. We have been back and forth to the pediatrician for a few weeks now with what we thought was a sinus drip. Well Thursday, it evolved into misery. Parker began throwing up everything. He would cough, gag, then vomit all day long. And I do not mean your average "spit up". I mean heaving from the stomach, everything he just ate, throw up. Then that night he was up every 30 minutes screaming. It was horrible. Thursday night I called the pediatrician and got a "call at 9 in the morning if nothing's changed". Well I call at 9 and the woman tells me they are all booked for the day. Seriously? I felt like I had to argue, beg, and plead to get seen. And I did. So at 11 we go to the doctor and of course he doesn't really do much, and then says "I'll call you in some Zantac". Really? You made me come in again for a THIRD time for that? My 20$ co-pay is adding up at this place. Now of course this medicine takes 4-5 days to fully kick in, so just in time for daddy to come home. Please say prayers for me! - Posted using BlogPress from my iPhone

Wednesday, January 11, 2012

First blog of the year

So this year is off to a good start. Parker and I stayed home and relaxed with Aunt Sandy for New Years Eve. We took the lazy approach, instead of being party animals. Then, we had our monthly appointment with our team at Children's on the 9th. That was a long, exhausting day. We got to the city around 8:45. Our first stop was ultrasound. At our appointment in December, the GI doctor ordered an ultrasound of Parker's liver. If you remember from my earlier posts, Parker's liver is automatically affected by this disease. So the GI doctor ordered the ultrasound so that we could get a "first look" at the liver and have something to refer back to. According to the ultrasound tech, everything looked perfect. The liver was normal sized, no cysts, no blockages, and all of the valves and arteries were working fine. Good news, if I do say so myself! Then we had to do labs. This really pissed Parker off! At the beginning of every year they do a full panel of blood work. This means 8 viles of blood. Added to this was a lab tech who missed on the first try. These two combined equals one mad baby! After labs we went up to the dialysis unit, which felt like it took forever! We didn't leave the hospital until 3 pm! We were starving! Altogether, Parker is doing great! He is growing, even if it is slow. His dialysis is going great. He didn't have any growths in his specimens and cultures, thank god! We are extremely happy with everything! Hopefully we do not have any other complications until transplant! A girl can dream, right?

Also, my sick leave ends this week. If any of your friends and family works for Terrebonne Parish School Board, please spread the word that I am accepting donation days. It's still unknown when I will be able to return to work. Any little bit can help! Thanks in advance!

- Posted using BlogPress from my iPhone