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.