Home from the Hospital

We finally made it home from the hospital late Sunday night. We couldn't be more happy to be home. Brodie has been doing so well since we have been home. He hasn't been throwing up which makes things much easier on all of us. He had a swallow study on Tuesday and he handled everything except for straight liquids. Our neuro appt was ok but we never know what to think when we leave those appts. He did tell us that he would have deficits but I am not even going to say what they are because none of it is for sure in our eyes. The neurologists are not the ones that decide his outcome they just predict it. God will develop him for His plan and we are comforted knowing that it will be the best life for him. So for now we leave it in His hands and pray for the best for Brodie. We took Brodie out to dinner for for the first time since it was nice and we could sit outside. We had a great time and think it was good for both the boys to get out. Funny story while at dinner (not really funny but if you know us it is our typical luck). We had on two tables around us so we felt like we were away from the masses. The guy on one side of us lit up a cigarette and started smoking about six feet from Brodie's oxygen and the other couple got cold in almost 80 degree weather so they had the waiter turn on the giant propane heater that was about 10 feet from Brodie. In the entire outside area there was no one else smoking and no other crazy people that need heat when it is warm out. It is comical now since we did not blow up but what are the odds. Brodie has been doing great in physical therapy and occupation therapy starts on Monday. They have cut our nursing hours so we only have nurses 3 days a week and every night from 10-7. We are starting to get more rest but still pretty exhausted. We are just thankful every day that we have him with us and don't take a minute with him for granted. Also, he has his two bottom teeth coming in and one of them is starting to poke through.We will miss that gummy grin when they come in.  Hope that everyone has a great Friday and weekend.  Thanks so much for all of your support and prayers. 

Surgery was Successful

Brodie's surgery was a success. He had a complete overhaul and is doing amazing considering what he went through. As I write this he is laying in one arm as I type with the other. He is grabbing for my phone and just smiling away. He got the g-tube and a fundo. A fundo is a procedure where they wrap part of your stomach around your esophagus so that when his stomach fills up it clinches the esophagus not allowing for reflux. Hopefully this will keep him from vomiting and significantly change our lives. He was also circumcised and had his appendix out. There was nothing wrong with the appendix but the surgeon said he just removed it while he was in there so that he would not have issues with it later in life. One of the benefits of the surgery is that he no longer has tape and a tube on his face so we can see all of his handsome face. This time around the hospital seems to not be as easy to handle. Before we were working to bring him home and now that we have had him home we just want him to stay. It is harder now that I am back at work but hopefully he can go home soon. They are saying maybe tomorrow or Sunday. This should be his last procedure for a while until he gets the trach out. He has an appt. with the neurologist so we are both excited and anxious. Please pray that it goes great and that we get good news. As for LaVona and I we are exhausted and ready for things to settle down. The bad thing is that insurance is cutting our nursing hours so that will take some getting used to. We are just so thankful and blessed to have him and all of the exhaustion and stress is well worth it. We could not imagine not having him in our lives and there is not a day that goes by that I don't look at him and say wow to myself. Thanks to all of you that continue to support Brodie and care for him. We will keep you updated on his discharge and neuro appt.

Happy 6 month Birthday Brodie

Today is Brodie's 6 month birthday and he is doing better than ever.  He has his first physical therapy session tomorrow so we are excited to get that going.  He has been pulling the feeding tube out of his nose alot and it is getting harder and harder to put it back in.  We decided that it was time for the g tube (feeding tube in stomach).  Brodie went to the doctor yesterday to see the surgeon and had a GI study done.  They said that he did not have much reflux and that his pneumonia had cleared up.  With this news they gave us the go ahead for surgery and set it for the 14th.  Once this is done he will no longer have anything on his face.  He should be in the hospital a few days and then it is back home to get stronger and work on getting the trach out.  He is on very little oxygen right now and his vomiting has gotten much better.  He is still draining every ounce of our energy but we are so proud of him with how far he has come.  When the physical therapy people came out to do their initial assessment they asked his history and we told them that the neurologists said that he would never walk.  They were shocked and told us that there was no way that he would not walk.  They said they would not guarantee he would be a track star or that people won't notice a difference in his walk but that he definitely would walk.  This was great to hear.  Now we understand that this doesn't mean he is going to walk but he has been moving both sides so it just supported what we were already thinking.   He is smiling more and he even laughs now.  We are so happy with where he is at and look forward to seeing his progress.  We will let you know how the surgery goes on Tuesday and hope everything will go great.  Thanks for all of the continued support and kind words.  Hope all is well with everyone and I will get some updated pictures soon.

Get This Tube Out of My Nose

Brodie has been doing great lately. He has not been without his challenges but overall we are so pleased with everything. We went the pulmonologist and he was happy with Brodie's progress and was optimistic about getting the trach out this year. While we were there he told our nurse to shut his oxygen off and he did quite well. The goal is to wean his oxygen and then try to get him off of it during the day. If we can do that we will move to weaning at night. If he handles that he will order a sleep study and makes sure his O2 and CO2 levels are good and then we can get the trach out. He feels like we might be able to do this by the time he turns one. I can't tell you how much this would change our lives. We stay so busy with his care even with nurses that we are more exhausted than ever and I am sure that it will only get more difficult. I am going to head back to work on Feb. 6 which will be great because it is time but it will be hard to leave LaVona. I think that being a stay-at-home is a difficult job in itself much less taking care of Brodie. We went to see the surgeon Monday and he said that he thinks he is getting over pneumonia. He said that the blood in the trach was from that. Scary to hear that word but we are encouraged that it did not land us in the hospital. We also talked to him about the g tube (feeding tube in the belly). He feels that he needs it and we agreed so he will probably have that surgery in an month an a half. The tube in his nose came out the other day and it was difficult to get back in because now that he is older and more aware he likes to fight us. If he was not a fighter he would not be here but come on Brodie don't fight your parents. The surgeon just wants to wait until the pneumonia fully clears up. On these two appts. we were reminded of what amazing men these two doctors were. We will forever be blessed just by knowing them and thankful that Brodie was in their care. Please continue to pray for Brodie and our family. Please pray especially for LaVona and I as we transition into our "new normal". When we actually can find time to reflect on theses past few months we are always amazed at the outpouring of love and support and we thank each of you for making this a wonderful journey and for teaching us what life is all about. Hope everyone is making the best of 2012 and I will try to keep this updated more often.

Settling In

Things have been pretty uneventful this last week and we are starting to settle in.  We even took Brodie to the mall today just to get out of the house.  We can't take him inside but we could walk around the stores in the outside part.  We are starting to get regular nurses and have most days and nights covered.  Tonight as I was strolling him around all I could think about is how difficult life would be if he would not have made it.  Life is by no means easy right now but I couldn't imagine not having Brodie in our lives.  I would not change a thing that we have gone through because I know that he is special.  He is starting to show his personality and he smiles at us more and more each day.  He has started to take some rice cereal so we are encouraged by that but it is a small amount.  Our newspaper article came out this week and we must be experiencing slow news days because we were on the front page.  Hopefully some people will read it and become aware of CDH.  The link to the story is

http://www.yourhoustonnews.com/spring/news/couple-celebrates-having-their-baby-home-after-a-severe-diagnosis/article_13931994-70a9-565a-a930-6ff54c1d3d33.html

We look forward to the days ahead and can't wait to see Brodie's progress.  Tomorrow we are going to try getting on a schedule so we will see how that goes.  The days go by and we can never get the things done that we need to do so hopefully a schedule will work.  Thanks for all the continued prayers and support. 

Happy 5 Month Birthday Brodie

Hope that everyone had a great New Year's.  Things have been going great with us except for we are exhausted more than we have ever been.  Between taking care of Brodie, doctor's appts, no night nurses and visitors we have been running on empty and don't know when we will get the proper rest.  The nursing is getting much better but because of the holidays it was tough to get steady nursing.  Around the New Year's there were three straight nights that we did not have nurses.  It is hard to sleep when you don't have a nurse so we bring everyone out to the living room and just sleep there.  We are afraid since we are so tired that we will sleep through the vent or monitor going off.   Brodie has been doing great lately.  He had a developmental appt and the doctor said that after reading his chart he couldn't believe that the baby sitting in his office was the same one.  He is anywhere from 2-4 months developmentally but they are pleased with his progress after all he has been through.  The only issue he saw was that he is bring his hands together but not tracking his eyes like he should.  The doctor said that almost always the tracking comes before bringing you hands together.  So now we get to add ophthamologist to our appts.  After that we went to see an ENT because he sporadically coughs up blood through his trach.  They looked down his trach and saw nothing so they got concerned that he had blood in his lungs.  We were then sent to the emergency room and stayed there for 6 or 7 hours.  After doing a bunch of tests they think that he is ok and we just need to keep an eye on it.  We see our regular ENT on Tuesday so we will keep you updated.  We went to the Texans playoff game yesterday.  It was the first day that we have both been able to leave the house at the same time.  We had our nurse and sister-in-law (Thanks Leslie) stay with him.  We all had a great time and Bradie really enjoyed himself.  We can't tell you how great it is to have Brodie home and we are enjoying our family at home together.  We are having difficulties getting a routine together but it will come together soon.  The newspaper came and did an interview about Brodie and our family so we are really excited that we will be able to educate people on CDH.  Someone saw our blog and has contacted us from the PR department at Texas Children's to help us make people aware of CDH.  Thanks to all of you for reading our blog and keeping up with Brodie.  We look forward to continued good news and hope that in a few months we can start talking about closing up the trach. 

Merry Christmas

As you all can imagine we had the best Christmas ever.  It was great to have Brodie home and Bradie loves his baby brother so much.  The only thing he can't handle is when someone calls Brodie a big boy.  He immediately corrects them and says that he is the big boy.  This was the first Christmas that Bradie has understood what was going on and he got everything that he wanted.  Brodie got to see family and went outside with his brother while he drove around his new car.  Having Brodie home has been great but also has brought on new challenges.  The nurses have been pretty good but having a stranger in your house for 18 hours a day is never easy.  It is great not having to drive to the hospital every morning.  Brodie has been doing so good latley and he is becoming more active.  His big issue right now is throwing up.  He has been throwing up about six times a day so last Wednesday we took him to the pediatrician.  He seemed like it wasn't a big concern but we just need to keep an eye on it.  It is tough when he throws up though.  It isn't real easy changing him, washing him down and cleaning the trach ties and gauze.  There have been very few other issues but we did have our first visit from the EMT's last night.  When LaVona was changing his diaper he got really mad and started turning blue for no reason.  I suctioned him and he continued to go down on his saturation and went down into the 50's. LaVona started to bag him and he started to come up but he was coughing up blood through his trach.  Our sister-in-law called 911 and the EMT's came soon after.  By the time they got there he was doing better but we decided to let them come take a look at him.  We are not sure what the blood is from but it stopped and there wasn't a whole lot of it.  Everything together just scared us and it is better to call them and not need them than to need them and not call.  We were in between nurses so it was all on us to get him back to where he needed to be.  LaVona did a great job and did not panic at all.  She just did what he needed and focused on getting him better.  I am going to post some pictures later so look for those soon.  It still amazes us every day that he his home and we are so blessed to have such amazing boys.  We hope that everyone had a great Christmas and has a Happy New Year.  I know that next year is going to be the best year of our lives.  This past year we have been through so much but are so thankful for where we are now.  We hope that each of you has a great year and we look forward to sharing Brodie's progress with you.  Thanks again for all of the support and prayers.