4/21/2010

Brody was released from the hospital yesterday afternoon with orders to slowly increase his formula intake and less pedialyte. We went home and everything seemed to be going great. He was happy when he was awake (which he was usually crying), and seemed very comfortable sleeping. All went well until about 5:30 this morning. He awoke me with a horrible scream of which I couldn't calm him down. I tried everything and so finally at 9 am I called his pediatrician. I told her his abdomen was once again distended and hard, and she directed me immediately to the ER for further testing. They did more xrays, blood work, and looked him over. The doctor said the xrays actually looked much better than before, that all the air was distributed evenly as it should be. She said she did notice that his bowels are moving much slower than they should be and needed to contact a GI specialist. The conclusion that they came to was to start him on an antibiotic to help stimulate the movement quickly. She said the blood work came back as expected with increased potassium and elevated liver panel (same as before). There were no further concerns so she sent us on our way to try the antibiotic. He has been given two doses of the med so far, and it seems to be working. There are still times that he seems very uncomfortable but as a whole it has improved.
Doug and I are both extremely exhausted. The hardest part of this whole thing is convincing ourselves not to take the stress out on each other. Bryson is being a normal 3 year old, and getting into a lot of trouble. We both feel like all we are always correcting him, and it's not really fare to him. We keep reminding ourselves that we are not the only ones that life has changed. He has been forced to spend less time with us, and passed around to family members while we are at hospital/doctors visits. It's getting harder and harder to keep that balance of happiness. I am hoping that this will be the end of Brody's pain, but nothing is guaranteed. We go back to the pediatrician tomorrow, and am rescheduling all our specialist appointments that were missed when he was at the hospital.The fundraiser for children's begins tomorrow, and I have a live interview Friday at 2pm. Not for sure if that is when the other interview will be played also. I am heading off to bed, and hoping for a good night!!

4/20/2010

On friday Brody went in for his 2 month check-up and shots. The doctor noticed that his abdomen was pretty distended and hard, but wasn't too concerned because it tended to be this way only after feedings. Over the weekend his sleeping began to get worse, and he was extremely fussy. I began noticing that his stomach never really went down, and he was extremely constipated. So after a sleepless night Sunday I decided to take him to see his pediatrician. She decided to direct admit him to Children's because of everything he has been through, and so they can run tests.This was the beginning of our second longest night ever (first was when he coded). They decided to stop all feedings and do xrays to see exactly what's going on.The upper part of his abdomen was full of air, and the bottom was full of BM. Therefore they decided to start an IV to give his stomach a rest from feedings, but assure that he wouldn't get dehydrated. They also did a straight cath to get a urine culture, blood culture, and worst of all an NG tube in his nose to suck the air out of his stomach.Well he hated the IV and NG tube so he ripped those out twice. So they had to put the IV in his head and keep him very swaddled so he can't get free. Throughout the night he was EXTREMELY fussy! He was so hungry but all we could give him was his pacifier. We had the resident come in at 3 am and we had almost given up and told them to feed him, but he talked us out of it. So by 4 he had began screaming so hard, there was nothing we could do to calm him down. This went on until about 6 when he finally got so exhausted he couldn't cry anymore. The resident came in at 6:30 and gave us the okay to give him pedialyte in small doses. This made not only us happy, but Brody was out after eating his first meal!! We did this for a few feedings, and now they are working on gradually increasing his dose of elecare (formula). The doctor was unsure if she wanted to keep him again tonight until they get him on full feedings again. So far he is tolerating the feedings, but I will keep you posted.

4/16/2010

It's official Brody has the same intolerance that Bryson had. We are starting him on Elecare formula today, and hope that it helps quickly! He had his first "normal" doctors appointment today..it was his 2 month check up. He received three shots and was looked over by the doctor again. He is on pace to gain a pound per week for the last two weeks. He is now up to 9 pounds 8 ounces.Today the doctor noticed that his abdomen was very distended and hard. I have been noticing that also after he eats. She said we need to keep a close eye on that, because if it is happening when he hasn't eaten it could be bad. He has been extremely fussy (especially at night). On tuesday we went to have an ultrasoud of the kidney's done. I was very bummed because they wouldn't let me go back with him since I had Bryson with me. They placed a foley catheter in him, and started an iv. They then placed dye into the iv and watched the kidney excrete the dye to see if his kidneys were functioning correctly. They had the catheter in so the urine wouldn't relflex back up and block the view. This test came back normal. I meet with the nephrologist next monday to follow-up with the kidney function. We also meet with the cardiologist next week, so I will keep you updated on that. Until then we will be trying to keep him comfotable and hope for the best with this formula!

4/7/10

Yesterday was Brody's due date and seven weeks ago today he was brought into this world.Since my last post, not a whole lot has changed. It turns out he does have MSPI, so is now on a special formula.He is on one that is a step down from what Bryson was on, and much cheaper. We are hoping it continues to work so he can stay on it! The day he was released from the hospital his liver profile came back alittle high. This was strange because all along this had been normal.So they did bloodwork last friday to see if it was getting better, which it was.I took him again today to get this drawn and will find out the results tomorrow at the appointment with his pediatrician. Brody might possibly be making his first trip to Bedford this weekend, that is if we get the okay from his doctor.Doug and I are kind of worried that if something were to happen, theres no hospital really close.I will continue to keep everyone updated as I can. Been alittle busy around here, otherwise I would post more often!