8/6/10

It has been far too long since I have updated everyone, and I apologize. I want to take this opportunity to thank everyone who contributed to the benefits held for Brody and/or any contributions made period. It truly amazes me the thoughtfulness and generosity of so many people and the support that we have received throughout these last 6 months. I know I've said it before but I want everyone to know, nothing anyone has done will go unrecognized. There are just far too many people to thank individually for all that you did. For the rest of our lives we will be reminded of what each and every person has done to help the cause. The financial assistance given to us has enabled us to focus on what really matters...Brody. I couldn't imagine having the extra stress, financially, during the times Brody was trying to gain strength. Even though we have no idea what's in store for Brody's future, it's nice to be able to get caught up on medical bills coming at this time. I don't know where we would be without your help, I can't say thank you enough.
As for Brody...everyday is a new struggle. We are still in and out of our pediatricians office for various reasons (mostly just mommy and daddy being paranoid), but for now it seems to be "normal" baby stuff. He continues along the same path as his big brother with milk soy protein intolerance, very bad acid reflux, and most recently chronic ear infections. However, I will take these conditions any day compared to what we could be facing. Developmentally he is doing great! So far he is doing everything he should be for a baby his age (considering prematurity). He is rolling over both directions, loves his johnny jumper, plays with toys in both hands, follows people (with his eyes) across the room, and absolutely LOVES being talked to!! I have posted his most recent pictures and these prove that he is moving along the path to recovery as he should be.
I wanted to mention a story that has touched my heart. I know there is a large amount of people that support us through the blog, that we have never met. This story was extra special to me, and I had to share with everyone. There was a woman that came to our benefit in Omaha. No one knew her but she kept donating money all night. Finally, someone went up and talked to her. It turns out her grandson was born with the same heart condition that Brody had, but unfortunately wasn't as lucky. He was somewhere in Missouri and too far from children's hospital ,and died before he made it here for the help he needed. She drove all the way here to give our family support for the miracle we get to enjoy everyday, and she is unable to do the same. She told my mom she wanted to help our family because she knows what it is like, and what we went through. The thing is...we have no idea what they went through because we still have our son. I never got to meet her before she left so I just wanted to post this and tell her how much that meant to us, and am really sad we couldn't have talked that night. If you read this I would love to talk to you and hear your story.

July 23, 2010 Medical Benefit

For those of you that do not know me, I am Kylie Talacko. Kendel is my sister and she blessed me with 2 AMAZING nephews. Friends of the family came to me and said they wanted to put on a medical benefit to help with the cost of all the bills. Me being the "wannabe planner" I said OK! So I invite all of you to join us on July 23, 2010 and meet BRODY and his family. We will have a DJ, food, drinks, auction, raffle, and much much more. If you have any questions or would like to volunteer please let me know!
Thanks and look forward to meeting everyone who has been interested in Brody's life.

-Brody's Aunt,
Kylie Talacko
402.515.9822
Ktalacko@gmail.com
Ktalacko@cox.net

BEST DAY OF OUR LIVES!

The fussiness continued so the doctor decided to send Brody for further testing. She wanted to do an endoscopy with a biopsy of the stomach, abdominal ultrasound, and a follow-up MRI of the brain to rule out further brain damage. The abdominal ultrasound was done last week, and came back normal. The endoscopy also came back normal, but have yet to receive the biopsy results. About an hour ago the doctor called to let me know that she got the MRI results back. She said that the hemorrhage that was present before, is almost completely gone! She said there is only a small amount of abnormal cells, but is not concerned anymore!!!!!!!!!!! We can't believe it...FINALLY some great news! I know we still don't have answers for the fussiness and abdominal distention, but at least we can rule out brain damage as a cause. ITS A GREAT DAY!!

05/01/2010

As most of you probably already know, Brody was admitted back into the hospital last Tuesday. He continued to be extremely fussy and inconsolable no matter what we did. I took him to his pediatrician and she directly admitted him. They immediately began running tests/ xrays of his abdomen to see if anything was wrong. They did an upper GI that showed that his lower GI was in the wrong spot, or at least they thought. So they showed it to our pediatrician and the surgeons (which by the way are very hard to get motivated to move quickly). The surgeons finally looked at it and decided they didn't like the view that the radiologist got, so he wanted it repeated. Unfortunately, this couldn't be done immediately because he needed to be fasting, and the barium needed to be completely out of the system. So they inserted a NJ tube (which it goes through his nose to the jejunum, the lowest part of the GI tract). They did this hoping that bypassing the stomach would decrease the amount of pain that he was in. However, this didn't work... not only was he crabby but he spit up a small amount of bile.They think the bile was brought up from the tube. The fussiness continued when they were putting the food through him. The next day they did a swallow study to make sure that he wasn't aspirating the liquid to his lungs, which came back normal. The upper GI was still slightly abnormal but the surgeons are not willing to operate not knowing for sure what is wrong. It might be possible that the lower GI is moving around and twisting the intestines and untwisting them. If this is true it would explain the pain...but they can't prove it. Therefore, they sent him home with the NJ tube still in place, and no real answers to whats going on. The last two days he has seemed much more relaxed, so I hope it gets better from here. The GI specialists couldn't figure out what was going on, but will continue to follow him. I will try to keep everyone informed on current conditions and if we find anything out.

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!