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. 

HOME

We officially made it home. I can't begin to tell you how great it was to see him come through the door. He touched so many lives at the hospital but home is where he belongs. We are so exhausted and will need to catch up on rest so right now it is hard to fully enjoy the moment. What him coming home symbolizes is what we are so happy about. This journey started for us back in April and we were not sure from the start if we would be bringing a baby home. We have been to many doctor's appts, ultrasounds, sleepless nights and very stressful times. All that said I sit here typing this as the happiest and proudest father. We beat the odds and our family is complete. The doctor and nurse practitioner both told us today that he was their first baby to go on flolan, come off and go home. We have a fighter and can't wait to see what the future holds for him. If he does nothing else in life he will still have touched more lives than most people. Something tells me that he will continue to do great things and continue to amaze us. He seems to be happy at home and enjoying his new surroundings. LaVona and I would like to thank everyone for the outpouring of support for our family. You kept us going and gave us words of encouragement as well as donated money so that we could donate $8000 to CDH research. We won't forget a single thing that was done for us and will never be able to thank you enough. The journey is not over and we will certainly keep you updated. We have to get used to nurses in our house and it is a bit uncomfortable but we can get through this as well. Hope everyone has a great week and thanks again.

Goodbye C48

Brodie no longer has his hospital room at Texas Children's.  We have moved to a room and have to prove that we can take care Brodie by ourselves and if we can we will be leaving here around 10 on Monday morning.  We got in here around 3 and things have been running smooth so far.  Brodie seems to be happier now that he is out of there and has more things to stimulate him.  We finally feel like he is ours and it feels great to be able to take care of him.  Brodie will certainly miss his nurses and so will we but it is time for him to come home.  We have everything ready in his room and so far it does not look like a hospital room.  It is hard to believe that it has been four months and that all of this is coming to an end.  We have had some really bad moments up here but have also had some really great ones.  This process has taught us so much about life and what is REALLY important and I hope that some of you have taken something out of our experience.  We are thankful for everything that has brought us to this day and we know that things could have turned out different.  We saw all too often it turn out the other way for families and also for other CDH families.  We will never forget that Brodie is a miracle and that he beat the odds.  I would like to thank each of you for following this blog and showing so much interest in Brodie.  Each of you have helped us through the last 132 days.  Your prayers helped keep Brodie alive and your kinds words helped to keep us going.  Our journey is far from over but Brodie is much healthier than he has ever been and the doctors feel like he could get the trach out some time right before summer.  Please continue to pray for him and our family as we move into the next phase of our new lives.  We will keep you updated on our "rooming in" and be looking for the "We're Going Home" post.  Also, I will be posting some new pictures after this post.  Hope everyone has a great weekend.

Brodie's First Ride

Things have been going great lately.  We finally decided not to do the helmet or the g tube for his feeds.  We went back and forth so many different times and at one point we were sure that we were going to do both.  We finally decided that it would be best just to see what will happen when we get home.  Most people think that his head will get better and also that he will be able to take a bottle or eat rice cereal within the next couple of months.  For the past five days Bradie has been sick with bronchitis so we have to get him better before we bring Brodie home.  On Monday and Tuesday Brodie seemed like he was bothered by something as well.   They think that he had a little infection but were pleased that he didn't get too sick and handled it well.  Life has been crazy for us these days.  We have been trying to get Christmas finished for the boys, learn all we can about Brodie's care and always seem to be meeting with someone.  I think we are learning alot and are ready for our "rooming in" on Saturday and Sunday.  We have to stay in our own room at the hospital for 48 hours to show that we can take care of our son.  Yesterday Brodie went on his first trip.  We were able to put him in a wagon and take hime around the unit and even outside.  The sun shocked him but he seemed to really enjoy it.  I will post some pictures soon.  On Sunday we went to dinner with the Brazilian doctor that is doing research on CDH and had a great time.  He is an amazing man and he always tells us that his life's purpose is CDH.  This means so much to us because we don't want any other families to have to go through what we have been through.  I will say that even though we are more than ready to bring Brodie home it will be a sad day as well.  We have met so many wonderful people and are thankful for each doctor, nurse or family that we have met over the last 4 months.  We are also thankful for the support of each of you and hope that someday each of you can meet Brodie and see one of God's great miracles.  Yesterday Brodie's first doctor was walking by and stopped in to see him and he was speechless at how great he looked.  I know that we will never be able to thank each of you enough for what you have done for us over the last four months but please know that you were are part of this journey and we will never forget that.  Monday will be the best day of our lives and a day that we didn't think would come.  We will keep you updated on how things are going on Saturday and Sunday.  Have a great weekend!

Less Than Two Weeks

Things have been going great and hectic up at the hospital. Brodie has been amazing and he has progressed to doing 8 hours on his trach mist collar. The goal is 12 hours a day on the mist collar and the vent at night and it looks like there should be no problem with that. He finally got his hearing screen done and he passed. We were always a little scared about that because of the stroke but were happy that he passed. LaVona changed his trach today and did outstanding. We have learned alot and still have a few things to do before we can leave. Right now there are a couple of decisions that we have to make. His head is a little misshaped because he was always laying on his left side so we have to decide whether to do a helmet or not to correct it. The second issue is whether to go home feeding through the nose or get a g tube. If we do the g tube he will not have anything on his face and he will not be trying to pull it out. The bad things are that it is another surgery and it may keep us from going home on the 19th. Decisions, decisions, decisions. LaVona and I can't decide where to eat most nights much less these more important decisions. He is always smiling and he loves his mobile. I am sad to say he likes his mobile more than he does us. He is really active and just moves his arms and kicks all day. We are so encouraged and pray that he will overcome the odds and make a full recovery. But, if he does have some challenges we still will have reached our goal of bringing him home and can't wait to wake up and him be there. Thanks to all that have continued to pray for our family. Brodie still has a bumpy road ahead and we are scared of what "could happen" but we feel that he is meant to be here and that we are capable of taking care of him. We will keep you updated on our decisions. Have a great week!

Brodie is Making Progress

I hope everyone had a great Thanksgiving. Ours was good but a little untraditional. We came up to the hospital and grabbed McDonalds on the way down. We did have family bring leftovers later that night to our house after we got home so we did have some turkey. It was just important for us to be with Brodie. We have so much to be thankful for this year and wanted to share it with him. Brodie has been making progress and trying new things. They have been doing CPAP trials where they take the breaths away and just give him continual pressure and he has handled that great. They also have tried him on a trach collar where he only gets oxygen. It looks like a little oxygen mask that goes over his trach and he did great on that as well. Our goal is for him to be able to spend the better part of the day on the trach collar and the vent at night. It just isn't as restricting and not as stressful for us. The past couple of days he has had a couple of episodes but other than that he handles anything they throw at him. He didn't have a good day yesterday but a bad day these days we can handle. We are still on target for the 19th but he still needs to make some more progress. He is on the home vent that we will use at home and the home health company is coming to the house tomorrow to assess what we need and check to make sure everything works. These have been busy days and we feel like we are just hanging by a thread. I think the adrenalin is wearing off and now we are just running on fumes. When we get home there will be new challenges but we won't have to drive so much every day.  Brodie took a little bit from a bottle today so maybe we can start to make some progress on that since breastfeeding is not going all that good.  He looks so good these days and today he smiled and played alot.  We have 20 days left and I just pray that he continues on the right track so that we can have him home for Christmas.  Thanks for all of the continued prayers.

It's a Date

Yesterday was one the best and worst days so far in the process.  When we got to the hospital we were told that we finally had a discharge date of December 19th.  I can't tell you how great this feels.  This could change but as long as we learn everything we need to and Brodie continues on the same track we will be out of here.  After almost four long months to know that we will bring him home and he will get to sleep in his room has made all of the long stressful days up here worth it.  We know we have a long road still ahead of us but it will be at home.  We will miss all of the wonderful people we have met and the comfort of others being there if something goes wrong but we are more than ready to be home.  There was one thing that happened yesterday that put a damper on our great news.  LaVona and I are trying to take a more active role in Brodie's care and become less dependent on the nurses.  Brodie was in a chair and he was having a hard time keeping his head up because he was tired so we decided to move him to his swing.  The nurse stepped out so we did it ourselves (big mistake).  LaVona moved him while I had the tubing and while we were moving him the water in the tube got dumped into his throat.  We could tell that he did not like this and his saturation started going down.  I went to get another nurse and when we got into the room his saturation was plummeting.  His saturation was in the forties and he was starting to turn blue.  She checked his trach and it was still in but his heart rate and saturation kept going down and his heart rate was 45 and his saturations were nearing zero.  She started to bag him and at this point he was blue with purple lips and was eventually out.  By this time we had a bunch of doctors and nurses working on him to bring him back.  They eventually brought him back and he was just white and very tired.  During this whole process that was only about 5 minutes all we could do is just stand there and watch as they tried to bring him back.  All I could think about is how far we have come and is this how it is going to end.  THANKS to all of the doctors and nurses. especially Wayna, for bring our boy back.  So many people up here love him and these things hit them as hard as they do us.   It is just hard when you feel like it is your fault that something bad is happening to your child.  We are just thankful that these things are happening while we are here so we can learn to handle them.  Brodie likes to keep eveyrbody on their toes and loves attention.  I can't wait to post on the 19th that we are going home.  Thanks so much for the prayers and have a great week.