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!

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!

Dream come true

The day finally came that we could take Brody home with us. We are still trying to figure out his sleeping patterns, and understand all his cries. He sleeps a lot during the day, but is awake the majority of the time at night. I am starting to see similar symptoms that Bryson had with his milk soy protein intolerance, but it is only at night so I am just giving it time. I keep thinking I am just being paranoid, and don't want to jump to switching to special formula too soon. Especially because that formula costs 45 dollars every three days (which is about 7200.00 per year). It is so nice to have him home with us, and Bryson LOVES his little brother. Everytime that Brody fusses he walks up and tries to comfort him. He wants to hold him all the time!Brody will go to meet our pediatrician tomorrow, and has lab draw on friday for follow up. I will continue to keep everyone updated with lab results, doctors visits, and milestones that are accomplished!

Please Check Out How Much Bryson LOVES His Little Brother...
http://www.youtube.com/watch?v=eEZBquBhDwE

3/24/10 continued

I forgot to mention that Brody decided to pull his feeding tube out yesterday...so they decided to leave it out. Already being naughty!!!

03/24/10

Brody's procedure went great yesterday (minus the four hour delay waiting for surgeon). He scraped away all the infection on the canula site, so hopefully it is now taken care of and will heal. He's eating as good as a normal newborn should be doing. They also need to do the car seat test before he can leave. This is where they put him in it for an hour, and make sure he stays stable for the whole time.Finally we will go through all the discharge instructions, and we should be on our way by friday or saturday!!! Fr. Tom came to visit and to check on Brody today.He held him for the first time, and couldn't believe how different he looked from his baptismal.It just hit me that this is really going to happen, we really get to bring him home where he belongs. It's hard to stop perfecting the nursery...I keep changing everything. I hope everythings perfect for him, he deserves it!

3/22/10

Brody has continued to prove to everyone that he is determined to go home. He is now up to 6 oral feedings per day, and has completed all of them thus far. If he succeeds, he will begin "ad lib" tomorrow. This is where they continue with the scheduled feedings but is allowed to eat as much as he wants. This is a good thing because there were a few feedings today that he still acted hungry after he ate the whole amount. We will begin the process of discharge as planned for the end of the week. This includes circumcision one day this week, and car seat placement. Over the weekend his canula site on his neck broke open, and was oozing with a yellow-colored drainage. Today they had the surgeon come look at it, and see what he wants to do. He decided the best route was to drain it tomorrow because it was infected. Therefore, he can't have anything to eat after 4 am because they are giving him anesthesia, and are opening up the site. The doctor sounded confident that this would not affect him going home as planned. Today I realized how close we were to losing our son. The surgeon that normally wouldn't look us in the eyes, did today. Looking back at all Brody has been through, it's very hard for us to understand WHY? I remember seeing the fear in the doctors eyes as we told them we had complete trust in all there decisions. To do what needed to be done to save his life. They did just that, and we still have this miracle with us today. Our faith was tested throughout this time, and has grown stronger than ever before. Those of you that continue to follow this blog...thank you. It started out as a way for me to vent the reality, and ended up being important to people we love and some we've never met. Brody's case is truly one in a million, as the doctors have said many times before. I often wonder why something so abnormal had to happen to us, but end up with the same conclusion. It's because we have the support system, faith , and love to get through anything...and this just proves it. Thanks again for all the support, it will never be forgotten!

3/18/10

So the doctor had recently told me that Brody would most likely be going home this coming Monday with the feeding tube. However, he came in yesterday to talk to me and had changed his mind. He didn't realize Brody was still premature because of how big he was. He said he just figured he was past our due date. He says that there is no need to rush Brody to go home at this point, that he can stay there and keep getting stronger for a few more weeks. So we are continuing to work on his oral feedings. He is doing a little better than before, he averages 1-2 whole bottles per day. He is gaining weight like crazy, which is good. He's now up to 6 pounds 8 ounces, and his face is really filling in. No talk so far about a repeat MRI to check mental status. He did pass his hearing test so that's a definite plus!!

3/15/10

Today the doctor came in to see Brody, and says he looks very good. His feedings are about the same, and I asked him if I should be concerned that he isn't eating more. He said Brody is completely normal for someone who has been through what he has in his short life, and ECMO babies usually are bad eaters. He said that he is going to continue monitoring his eating this week, and re-evaluate on friday. If at that point he thinks he hasn't improved at all and it is going to take another month or more, they will begin training us to tube feed and send him home. However, if he thinks it might just be another week until he can get the tube out, he will keep him until then. We are kind of nervous to take home such a delicate baby, but at the same time excited to be at home as a family! They took his sutures out of his neck and femor the other day. Also cardiology released him from their care the actual words the cardiologist wrote in his file: "patient completely stable, and too good to continue following with cares".....awesome words to hear:) My next worry is that he may develop the same intolerance that Bryson had, which is milk soy protein intolerance. Hopefully being a couple weeks into the feedings without symptoms means we're in the clear but we will just have to wait and see.

3/10/10

Today I was interviewed for the KAT103 phone-a-thon. The marketing department at children's asked me to tell Brody's story to help raise money for the hospital. I thankfully was able to complete the interview without crying. The fundraiser will be on the air April 22-24, and I hope our story helps bring in some money! Brody came very close to finishing his whole bottle today! He was only about 5CC short one time, and 20CC the time before that! He has gained weight, and is very close to his birth weight. They came today to test his hearing. However, he was moving around too much so they have to come back another time to finish it. I gave him a bath and just cuddled all day!Kind of boring....just as we like it!

3/8/10

Today the doctor increased Brody's oral feedings. He wants me to nurse him twice a day, and give him a bottle twice a day. This is another step towards getting to go home. Once he's able to take all his feedings orally, he should be ready to go home. He is just so tired at this point, that it is hard to keep him awake long enough to eat very much. On average he is only getting about 5-8 cc of his 53 cc feedings, orally. Kylie spent the whole day with me at the hospital keeping me company. If I didn't know better I would have thought she had been drinking, because she put an Iowa hat on him (he looks much better in husker red by the way). Other than that it's just a lot of waiting, and helping him gain his strength. Thankfully things are very boring in his room these days:)

3/6/10

We gave Brody his forst real bath today!! He was so relaxed...he slept right through it. Kept trying to get him to feed orally, did about the same as yesterday. He latched on for a minute or two and then got tired! Other than that there are no changes, he just sleeps all the time:)

3/5/10

Yesterday was a long day of waiting for the neurologist. They weren't able to give me a time that she would be there, and she didn't come until 4:30. After the news that we heard the day before, it made the anticipation even worse. She looked Brody and the MRI over and checked all his reflexes. All this waiting and she couldn't give us any information we hadn't already heard. She said the MRI doesn't look good, but physically he did everything he should be doing. I asked her what that chances are that he will have problems when he gets older. She said it's a much higher chance that he will have a disability, than not having one. She said there's no way to know at this point what the damage is going to affect, so we will just have to wait and see. Do you know how hard that is for a parent to do? There's no test or any way to have a clue what the future holds for our son. Instead we have to wait until he begins reaching milestones, and see if he is behind other children. Basically the MRI results are right in the middle. They aren't horrible, but are far from good. That's why it is so hard to get any answers. She said that one of the first real tests is how he does with oral feedings. Today I began attempting to breastfeed him. He did very good for a premature baby. He was able to latch on a few times, but only for a short period. He got very tired quickly because it's hard for him to go through all the motions, and breathe at the same time. I am very confident that he will continue improving, and master it in a few short days. He has surprised so many people this far, we are hoping that he will prove the doctors wrong!

3/3/2010

Today the doctor increased Brody's feedings and wants them given over only an hours time. This will get him ready to be able to have me nurse him. They again lowered his high flow machine (oxygen) and is only on 1 liter now, so the next step will be to take him completely off it. That was the only good news I received this morning, the rest was devastating. I knew it wasn't going to be good when the doctor pulled up a chair and sat next to me. He told me they got the MRI results back from yesterday. The results show that there is abnormalities present and he can't tell us for sure a prognosis. He is going to have a neurologist come talk to us tomorrow about what we can expect. He said there isn't one area that he can pin point an abnormality, but as a whole "it just doesn't look right". He went on to say that Brody has a high risk for Cerebral Palsy and/or mental retardation. He wasn't sure if the damage was done before he was born or after. When they did CPR on him, there's a possibility that he was deprived of oxygen flow to the brain for some time. Our family is trying to remain positive that this will only be a false prediction. We all knew in the back of our minds that this was a possibility, but now that the tests prove somethings not right...it really hits home. No matter what happens one things for sure...he will be loved unconditionally. We are so happy that he has made it this far, and could never imagine not having him. Although it makes the road a lot more difficult we will get through it, we always do!

New bed!

Brody's chest xray was repeated this morning with no improvement. The doctor decreased his feeding and the amount of fluids he is getting, in hopes that it will decrease the amount of fluid in his lungs. They did another ecchocardiogram this morning and the function of his heart looks good, but his PDA is still not closed. To attempt to get this duct to closed, they have already placed him on ibuprofen twice. The cardiologist said that he wants to try this treatment one more time, and if it doesn't work again they will have to do surgery. This would would be the 5th surgery he has went through. The nurse is beginning to wean him off the incubator, and will be in a crib hopefully by late this evening. This means we can bring him clothes to wear!! He is still fussy at times but I am pretty sure it is because he isn't getting much food yet, and is hungry.

Steady as We Go

Things have been going about the same. We are just waiting for him to gain strength and heal. We found out today that he has a collapsed lung. This might have happened when they took him off the vent. Theres not much they can do for that, so they are just keeping an eye on it. I have been staying all night at the hospital because he cries now, so I feel he needs me more. When he does cry I place my hand on his head and talk to him and he usually calms down (theres not much more I can do for him since he can't take a bottle). His BUN and Creatinine levels have came down alittle which is good (kidney function). The doctors are saying it's going to just take time for that to get better!They increased the amount of milk they are giving him, and hopefully will again tomorrow. Daddy's birthday is tomorrow and Bryson's is Monday so we might try and sneak away sometime to celebrate. I never really understood the saying "take it one day at a time", until now. It's so hard to think about tomorrow when you are worried about what's going to happen today. I hope the worst is behind us, but I keep praying that we don't get anymore bad news. It's been a roller coaster ride since he was born so we don't want to get too confident.

Finally

Yesterday was a good day for the most part!Brody made the move to the NICU without any problems. The highlight of my day was getting to hold him and change his diaper! I never thought I would ever be so excited to change a poopy diaper! I didn't want to let him go...I could have sat there forever (well, if my bladder would have allowed). The doctor noticed that his blood work that shows kidney function has slowly worsened over the last three days. Just to be safe he call a pediatric nephrologist to come evaluate him. They did an ultrasound at the abdomen, and noticed that one side of one of his kidney's is very swollen. She thinks it's from all the trauma his body has been through and that his body should be able to heal on it's own. She started him on a low dose antibiotic just to be sure that there is no infection there. If it would happen to worsen, dialysis would have to be considered. Today they might take him off the vent!!! He is getting room air through the tube, and they feel his lungs are strong enough to handle it on there own. I will keep you informed as the doctors round on him today.

Recovery Mode

Brody was wide awake when we got there this morning. He was kicking his legs and had his eyes open for about an hour while we were talking to him. All the staff at children's hospital are amazed at his progress, and keep stopping by to check on him. They are moving him from the PICU (pediatric intensive care unit) back to the NICU (Neonatal Intensive care unit) tomorrow! They feel he is stable enough to be monitored over there. He is resting comfortably now with his husker hat on (thanks papa Dean and Grandma Sue). Now is time for the little man to recover and heal from all the surgeries he has went through. They think within the next week he should be ready to come of the vent. He is truly a miracle:)

Strongest Boy I Know

Brody is now free from ECMO, and is doing great! His heart rate and blood pressure has remained stable thus far. When we left him a few minutes ago he looked so comfy without all those extra chords coming out of his neck. We still have a long way to go until recovered. He has been through so much already. Please continue to keep him in your prayers for a successful recovery. Doug and I are going to listen to the physicians plan for him tomorrow morning, and I will let you know what that is. I know I've said it several times, but thanks again for all your thoughts and prayers. Until you go through a traumatic event like this, you never realize how important family and friends are.

No more ECMO

We just gave Brody another kiss goodbye...as they prep to decanulate from ECMO. The line goes through the carotid artery straight to his heart. They said the procedure itself will take a few hours. They are going to clamp him off of the machine for at least an hour to see how his heart handles it on it's own. If tolerated, they will then open the area up and take the tubes out. The part that takes the longest is repairing the veins and artery. He said he is going to do his best to save as many of them as he can. The ones that are in worse shape he will have to sew them off. The better conditioned ones he will try to sew back together and repair so they can be used at a later time if needed. We are just praying that his little heart is strong enough to do this on it's own.

A New Day

It was a very late night yesterday. They finally got Brody back to his room about 1:30 Am, and we were able to go see him. He looked very good considering what he had just been through. It turns out there was a third pathway that was found, and had to burn it also. It was right next to the Av node so they didn't burn it all the way through for fear that it might put him into AV block (which would them require the, to insert a pacemaker). So far Brody has stayed clear of SVT since the surgery, and they are planning on taking him off ECMO this afternoon. When the doctor came to talk to us after the surgery he told us that this case is something that his buddies at Boston Children's hospital would never believe. I didn't really understand why it was such a rare case he just said something about for his age...there were parts there causing problems that you only see in older kids. Last night Doug and I realized how amazing all the physicians are at Children's. Everyone of them that he has seen has saved his life. I could never imagine having him at any other place. It is the most amazing facility for both support of our family, and medically for our son. They are discussing the time that they will take him to remove him from the machine , but it should be later this afternoon.

Update

ok, so the doctor came back and said that as he was leaving he received a phone call from the operating room saying Brody went back into tachycardia, they had to go back in to see why and possibly burn another spot. Not out of the clear yet..will keep you posted.

Answered Prayers

The best moment of our lives....The surgery went great! The doctors found two pathways that were causing problems and burned them which took him out of SVT. He is going to get sutured back up in about 30 minutes and then head back to his room for recovery. Thank you for all your prayers thus far. Please continue to pray that he heals quickly, and continues toward the journey of healthiness. The doctor seemed very confident in the results but said that 'the worst part over but not out of the woods'. Thanks again for all your support!

It's Time

They just came to take Brody for his procedure. Very hard to let him go, but we have no choice.They say it can take anywhere from 6-8 hours. He was very alert before he left...it was very strange. He kept opening his eyes at the sound of our voices, and moving his feet and hands. I think he is trying to tell us that he is going to be okay. God please watch over our little angel!

Moving Forward

Last night the nurses started raising Brody's temperature with success. He is currently at 96.4 degrees, and they want him to get up to 98 degrees. Doug and I got to the hospital this morning just in time for all the action. The PICU doctor had just arrived and was already hard at work. All the cardiologists were in today and had a meeting about the plan of action for the week. There first request was to clamp off the ECMO machine, and turning down his arrhythmic medications so they could run a scan of his heart function without the help of those things. It was very scary, but only his blood pressure raised mildly. Dr. Erickson came in and had a meeting with Doug and I about his intentions. He explained how hard this situation is because now that Brody has gone 48 hours in sinus rhythm, it makes him question what he should do. Had he went into SVT last night the decision would have been simple-go ahead with the procedure. He explained the procedure he was talking about. It is called ablation. They would do it via heart cath placement through the leg and "map" out the area that is mis-firing. They would then "zap" the problem area to stop the motion. There are a few very large problems with attempting this. First, the area they think is where they need to zap is very close to the AV node (the normal conductor) and if they hit that by accident they would have to place a pacemaker in order for him to have effective functioning for the rest of his life. Second, he will remain on ECCMO during this procedure which always puts him at risk for bleeding. Last, they can't guarantee that they are going to be able to find the exact area that is causing problems because Brody's heart is so small (just imagine the size of a babies fist...that's how small his entire heart is). After explaining all this to us he asked us what we wanted them to do. They could wean him off the meds and ECMO machine and hope he stays in sinus rhythm, or go ahead with the procedure. Doug and I agreed that we wanted to put his life in the doctors hands. They know whats best for him, and we want to do whatever we can to keep him alive. The doctor said he is talking to colleges throughout the united states about this rare condition, and they all feel the procedure is going to be the best thing for him. Therefore, he is going to converse with the other cardiologists and hopefully get the procedure done tonight/ this afternoon sometime.
His dad and I hope that he can remain strong enough to go through another procedure. He is such a fighter, and has so much support I think he can make it through almost anything. He opened his eyes for his dad and I this morning. It was just for a split second, but it brought tears to our eyes finally getting to see those beautiful baby blues! Please keep him in mind this afternoon as it could be the most important moments of his life thus far.

A new day

Today was the day that they discharged me from the hospital. Kind of hard knowing that I won't be just a walk away anymore. It started out with great news: his ultrasound results looked great! Not only did they not worsen, but the radiologists think it actually might have improved a little. They placed an NG tube (goes into his nose and straight to his stomach) in order to begin giving him very small amounts of breast milk. Tonight the plan is to begin warming him to normal temperature. They consistently kept him at 94 degrees because of his cardiac arrest. In order to protect the brain they do this. Warming him is kind of scary because as his temp rises, the more at risk for seizures he is. He moved his arms and legs quite a bit today. They think he is starting to feel a little better, so he is more active. However, they can't take the risk of him pulling out any tubes or lines so they had to increase his versed to calm him down. The nurses were great...they washed his hair today, gave him a HUSKER blanket, and felt bad for daddy so gave him a yellow hat and wrote an H on it for hawkeyes! Other than that we are just continuing to wait for further improvements.
We went forward with Bryson's birthday party today. We felt it wasn't fare to him if we postponed it. Besides, it gave our family a little break from the hospital and got our minds on something else. One things for sure, since this all started it definitely makes me appreciate Bryson so much more. There are certain things that you can't control, but the time you spend with your family should never be taken for granted.
Doug, Bryson, and I are staying at my parents tonight to be closer to the hospital. We will give an update tomorrow after the doctors do there rounds.

Hanging on

Trauma can bring very interesting emotions. The last couple of days we have gone through shock, denial, anger, and frustration. Today was the first time since this all started that we are at peace. We realize God has a plan, and we have no control over what he intends for our little one. Having him baptised reassured to us that no matter what happens, he will be happy. It humbles us to know that we have the support system that we do. People we haven't talked to in years, are checking on us. People we hardly talk to are offering their help, and the people we are closest to are standing beside us 100%. We could never express the appreciation we have for everyone following and supporting us. The prayers are so important to us because we honestly believe that is whats making him stronger. We are sorry we are unable to return everyones phone calls, but know that we will never forget that you cared enough to check on us. Brody is still putting up a good fight. If he makes it to 4:30 am without converting to SVT, it will be 24 hours in sinus rhythm. That would be a very large milestone towards healing. We will have another ultrasound of the head tomorrow morning, and will find out if we can continue ECMO therapy. We are keeping our fingers crossed, and hoping for the best.

In God's Eyes

Brody stayed strong for most of the night. He went into SVT once around 4:30am and he was able to pull out of himself after about 30 minutes. This morning started with a follow up ultrasound to check the status of the blood that was confirmed yesterday. They wanted to monitor it so that it doesn't grow larger or go into the brain. Results show a trace increase in size of the blood spot. However, since the spot didn't grow very much they are allowing the current treatment to continue. Which is good news so that they do not have to take him off the ECMO (which is what is pumping his heart and lungs for him currently). Father Tom was here shortly after this and Brody Dean was baptised with some of his closest family around. We are in the 8th hour of him being in normal rhythm which is a new record. He is continueing to be strong and a fighter. All your thoughts and prayers are appreciated.

New Blog

I created this blog for all our family and friends to remain in touch with Brody, and what's going on with him. To catch those who may not know what's going on up, I will give an overview. It all began Wednesday Feb 10, I went in for my usual ob check up. They did an ultrasound because I was 32 weeks along, and needed to get the proximate size (which was large he was already over 6 pounds). It was then that they discovered an extremely fast heart rate, and referred me immediately over to Bergan Mercy for further observation.
The Doctor I saw there is well known around Omaha for high risk pregnancy's, and felt I needed to be placed on IV meds immediately. It began with digoxin which they were worried might lower my heart rate, so had me under constant observation. They tried that for a few days without success so they started another medication called propanolol. Again, this didn't work so after a few more days they added flecconide. This all went on for about a week which was all the time the Doctor was going to allow, without delivering him.
Feb 17 at 1:29pm they delivered him by c-section. He initially cried (which relieved Doug and I), but followed with a period of silence. His Heart rate plummeted very quickly, and required immediate incubation. They took him to the nicu at bergan to begin the healing process. They gave him a few doses of adenosine to try to convert his heart rate back to normal. This didn't work so they contacted the cardiologists at children's hospital. After doing an assessment, the doctor suggested immediate transfer to children's for further treatment. Without hesitation we sent Brody on his way. Our plan was to try and get a good nights rest, and get myself transferred the following morning.
Plans didn't work out the way we thought they would. Two O'clock that morning I received a call saying Brody had just coded ,they had to do CPR on him, and they were waiting for cardiologists to get there. However, they said he was stable and would inform us on what they thought we should do (obviously I was stuck in a hospital bed). An hour later, I answered the phone and it was a nurse telling me that Daddy might want to get over there, that it wasn't looking good. Then she put the cardiologist on the phone. He said the only thing we can do to save his life is to put him on a heart and lung vent (called ECCYMO). He said there's only a 40% that he will even survive the placement, but thinks it the best chance he has. Without hesitation we accepted and Doug was on was over to see him. I told the nurses that I needed to get over there ASAP, and they rushed to get an ambulance so I could be there to say goodbye, or so I thought.
An hour later I arrived just in time to see him when he got back from the procedure. The strong little boy beat the odds, and made it! Now his heart could have a rest, the machine actually takes all his blood out that would be circulated by his heart, filters it, and pumps it back into the circulatory system just as the heart should do. It is an amazing machine that is serving as his heart for the time being. It requires three specially trained nurses to be in the room with him at all times. Along with that he is on two meds to keep him comfortable, and prevent him from pulling out any of the tubing. Lactated ringer for nourishment, insulin to regulate blood sugar, heparin to thin his blood, and various meds to help keep his heart rate stable.
Just as we thought we were in the clear the dropped another bomb. They thought reason his heart wasn't strong enough to beat on his own, was because his aorta was too small. Therefore, they had to place a stent with a balloon on it into the heart, inflate the balloon, and hope that it created a larger opening in the aorta. This was done with success to our relief. However it didn't fix all the problems. He still would occasionally convert back to svt (supra ventricular tachycardia), and required medication to convert himself back to sinus (normal) rhythm.
As time went on the time he spent in sinus rhythm began increasing, which was a huge relief to us. However, the amount of cardiac output that he puts out when tachycardic was close to none. Which means without the machine doing all the work, he would not survive.
So that brings me to the next dilemma. In order to be on ECCYMO they have to put the patient on a blood thinner in order to prevent clotting. Therefore, Brody is on Heparin in large amounts. A huge risk for this is internal bleeding because a small bleed can be fatel when on this drug. Bleeds usually originate in the brain, so they monitor his brain by ultrasound daily. This morning they found a few suspicious spots that might possibly be blood spots. Normally, if they noticed this they would discontinue the use of ECCYMO. However, the doctors know that his heart is not strong enough to survive on its own yet...so they have no choice but to take the risk of a bleed. We have an ultrasound tomorrow morning to follow up and make sure the spot is not growing, and will meet with the doctors again for plan of action.
That is where we stand at this point. It has only been a week since this all began, but feels like an eternity. We appreciate all the support we have received from all our friends and family. Without that we would not be able to get through this extremely difficult time. I hope everyone continues to pray for Brody, I believe that is what has gotten him this far.
I was in the restroom today and looked at myself in the mirror and to my surprise there was a ladybug, and another was in the shower with me later that night. It gave me hope and courage to go on throughout my day.