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.

Are We Ready For This????

Things have been going so great lately and everything is always positive and moving in the right direction.  Home seems to be in our near future and we are excited because that has always been the goal.  However, we are both terrified of the thought of being the primary caregivers.  We will have home nurses but have heard horror stories and need to be prepared to handle anything.   We are going to have to make sure we know it all and that we are calm when a stressful situation arises.   On Wednesday we had one of those stressful situations and we are so glad that it happened first while we were at the hospital.  We had been talking to our nurse and she said she had never had a baby decannulate (trach come out) on her and also that the tool used to insert it in needed to be readily available.  About 20 minutes after that conversation LaVona handed Brodie to me and when he got to my lap you could hear air leaking.  Then LaVona said,"It's out."  We both thought she meant that the tube got disconnected but we soon found out that he had decannulated.  The nurse then called for other nurses and then hit the code button.  The tie that holds the trach on and his trach collar were very difficult to get off but one of the other nurses was able to get it off while our nurse got the tool to put it back in.  While this is going on I am just sitting there watching my son gasp for each breath and wondering how this was going to turn out.  All of my personal space issues went out the window and I had nurses reaching over me and across me.  Our nurse was able to get it back in with no problem and he was fine after he got his oxygen back.. I know this sounds crazy but throughout this process that was the most scared I have been.  Thanks to Misty and all of the other nurses for staying calm and getting it back in.  We are now even more terrified to go home but I know we can do it.  Hopefully he can be weaned as much as possible and will go home on very little support.  Please pray that we can learn all we need to and be able to give him the best care possible.  Thanks to all of the support and we hope everyone has a great weekend.

Brodie is All Smiles

The doctors told us yesterday morning that we would hopefully be able to go home in 4 weeks.  We are very excited but are not going to get too excited in case it does not happen.  When we go home we will have to have home nursing care so that will take some time to get used to.  Yesterday LaVona tried to breastfeed him and he did pretty good.  He latched on for a few seconds so we are encourage that he might be able to do it.  Hopefully soon we will try a bottle and see how he does with that as well.  It is so great to be able to dress him everyday and get him out of the bed more often.  He sits on his boppy, lays in his swing and plays on the floor.  If he did not have a tube coming out of his neck you wouldn't have a clue that he has been through anything these last few months.  I added some pictures of Brodie smiling and then a picture of LaVona with the two boys.  Those pictures make all of the crazy nights staring at a monitor and wondering what was next all worth it.  I hope that these pictures put a smile on your face and thanks for all of the support.  We will keep you updated on the progress as we look towards home.  Hope everyone is having a great week.

Goodbye to The Lines

Words can't describe how wonderful Brodie is doing these days.  Today at 11 am he came off of the flolan completely and at around 8 tonight they finally took out his last picc line.  He no longer has any lines going into him and all he has is the trach attached to the ventilator.  Not only did he not have any issues getting off the flolan but they were also able to wean his oxygen down to 26% during the process.  A couple of nights ago he was actually down to 21% oxygen.  When doctors and nurses come by to check up on him they are simply amazed at his progress.  There is not one person in that building that thought that he would be even close to where he is by now.  The next step for us is to start getting things ready to come home.  We have to learn how to do everything with the trach, take a CPR class, learn the vent, get home healthcare set up and some other minor details.  To put it simply, we have to prove to them that we can take care of him on our own.  This will probably take 3-4 weeks and maybe longer but at least we are talking about going home.  Brodie also needs to start learning to eat.  This is very difficult for CDH kids but hopefully he can do it or he will have to have a tube put in his stomach.  Thank you so much for each and every prayer over the last 3 months.  I hope each of you know that you have a part in Brodie being here and we are forever thankful to you.  If you are reading this and don't believe in the power of prayer or that God can and will work miracles then I challenge you to visit Brodie and see what God has done.  He truly is a miracle and we are thankful for each minute that we get to spend with him.  We have been through so much but we wouldn't change it for the world.  We will take what we have learned with us forever and hope that you will too.  Thanks again!

A New Brodie

Brodie has been doing great the past couple of days.  The flolan wean has been going suprisingly good and he just looks great.  LaVona and I have been learning the trach care and even though it is very intimidating we have been able to do it.  It takes alot longer right now than it should but soon we will get the hang of it.  Brodie has been doing occupational and physical therapy and is doing more normal baby stuff.  He smiled a few times today and he just seems like he is so much happier now that he has the trach.  I am going to put up some pictures of Brodie with the trach as soon as they are downloaded so by the time most of you read this the pictures will be up.  Today and Tuesday he got in his seat/chair and would just lay back and enjoy it.  Right now he is laying in his bed propped up on his boppy and he looks so cute.  If you can't tell by this post we are so happy with his progress and to say that I thought we would ever reach this point would be a lie.  We never gave up but all of the signs were just not pointed in this direction.  I hope that this progress brings a smile to your face like it does ours because each of you were instrumental in getting us to this point.  If he continues to handle the flolan wean he should be off of it by Tuesday.  Hope everyone has a great Friday and hope you enjoy the new pictures.

Happy 3 Month Birthday

Today is Brodie's 3 month birthday and he has never looked better. Things have been going good and he has been tolerating his flolan wean. They have been going down by 2 every 12 hours and he is down to 20. We are a third of the way there and his doctor wants to see if we can maybe start to wean every eight hours. Hopefully he can get off of it by next week and then they can pull his last line. He has been on 36% oxygen for the last couple of days and he is sucking on a pacifier. They finally stopped paralyzing him yesterday and now he is starting to be more awake. The first trach change went good and it really doesn't seem to bother him. The nurse just got him a bouncy seat So hopefully he can get out of bed and play in that today. He looks so good and I feel like everything is moving in the right direction. Last week we were able to donate $6727 for CDH research to Texas Children's. They are working on some procedures where they will be able to help unborn children with CDH and hopefully families will not have to go through this process. The research and clinical trials are being done by Brodie's surgeon and the doctor that did the study we were involved in during the pregnancy. We are so very thankful for all of the generous donations and can't explain to you how great it felt to write that check knowing we were making a difference. It could not have been done without you and we will never be able to thank you enough. We still have $1000 that is on its way and we had around $200 come in after we donated so we it is all said and done we will probably have donated $8000. Thanks also for supporting us through the really tough times. Brodie is in now way out of the woods but we feel confident that in the next few months we will bring him home. Please continue to pray for his healing and for him to continue his progress. I will get back to updating this a little more often. I have been very tired lately and have just been lazy. A few of you have made comments that I have been slacking so I will step it up. Hope everyone is having a great week and we will keep you updated on the flolan wean.

Brodie Gets Off the Nitric

In my last post I said that the next few days were going to be unchanged. That was not what we experienced yesterday. When we got to the hospital our neonatal doctor and pulmonologist got into a rather heated debate about whether to wean his nitric or the flolan. After much discussion they decided to wean the nitric. They did it rather aggressively and were done by 6:30. He did not have any issues until they took him completely off. This was expected and he was actually back down to the same oxygen that he was on before they started to wean him. Today they will probably try to wean the flolan. This will be a lot scarier and it will make things a whole lot easier if we could get him off of this. We are hopeful that he no longer needs this but still worried about them weaning it. The next few days should be an adventure and we will probably revert back to monitor watching. Brodie has come so far and if you would have told me a month ago that we would be weaning the flolan today I would have told you that you were crazy. We would not be here without each of your prayers and support. Have a great day and we will keep you posted.

Successful Trach Surgery

Brodie's trach surgery went great. They said there were no issues and he looks good. It is so crazy to be able to see his entire face. He is very sedated and is paralyzed so that is a little difficult for us right now. I don't know how we were able to watch him lay there paralyzed for as long as he did. That just goes to show you that we can do anything if we are put in the situation. I really wasn't nervous about the surgery until just minutes before they came to get him. Then if hit me that he was going to have surgery and I wasn't sure what it would do to him. We watched a trach video yesterday which was slightly unsettling for me. When I saw the video I was ready to back out and not get the trach done. I sucked it up and realized that when it is your child these things don't seem as bad. When I first saw him the trach did not bother me at all. Let's see how I do when I have to change the tube out for the first time. The next week will be pretty much unchanged and he will stay paralyzed. Next week they will either wean the flolan or the nitric so the excitement will be back. Thanks for all the kind words and the prayers for his surgery.

Tomorrow is the day that he gets his trach.  I can't say that we are not nervous but we know that he will do great and come out of it just fine.  He has been through much worse and made it out of far deeper places.  Lately he has been doing great and when people come by to see him they are amazed that he has come so far.  We are so happy and proud of him and we know that he has a bright future and God has big plans for him.  I posted some new pictures of him.  He is wear his halloween clothes that his Nana got him and when we went to the Texans game on Sunday we put a Texans onsie on him so he would not feel left out.  I love the one of Bradie and Brodie.  Bradie loves his little brother so much and loves to rub his head and hold his hand.  LaVona and I are wearing down and just tired all the time.  I think now that he is doing better the adrenalin is wearing off and everything is catching up to us.  That is OK though because our little Brodie is better and that is all we care about.  The doctor just came in and told me,  "You are going to take him home".  Obviously that is not going to be for a long time but to go from thinking he would never come home to hearing that we will someday bring him home it feels so good.  Yesterday was the last day for the previous doctors and now he is being moved to the chronic lung disease team.  This means from here on out he will have the same doctors and we will not switch teams anymore.  Thanks so much for your giving, prayers and support.  We made our goal and I will give you the final totals tomorrow.  We have just been blown away by everyone's generosity and support.  I hope that someday each of you gets to meet Brodie and see what all of the prayers have done.   I talked to a friend the other day that I have not talked to for almost a year and he asked me how things have been for me.  When I was describing what we have been through it was crazy to think that we experienced all that I was saying.  You just take it one day at a time and don't even realize what is going on until later.  We feel blessed to have taken this journey with Brodie and are thankful that we are fortunate enough to be able to both do it together.  This has certainly been an interesting rollercoaster but we wouldn't change a minute of it.  We hope everyone has a great week and we will let you know how things go tomorrow.