Trach Surgery Time Set

Brodie's trach surgery has been set for Wednesday at 3. We are happy that he will get his tube out but very scared for the surgery. We are thinking the surgery will go great but we are anxious about him breathing through a hole in his throat. In case some of you have not noticed there are some new pictures of Brodie on here. We are so proud of him and he looks great. He is doing great with his occupational and physical therapy. They seem very pleased with his progress given what he has been through. Everything is going to stay the same until Wednesday and after the surgery once he heals they will start to wean some medications. We hope you have a great weekend and thanks for all of the support.

Brodie's New Bed

It has been an eventful past couple of days. Brodie has been doing well and has stayed the same the past couple of days. The big news has been his move to a crib. This is so great for him and now he has some things to look at. He has a mobile and an aquarium that he can look at now. I can't imagine how much better this is for him to look at than the ceiling. He also wears clothes occasionally and is starting to be more like a normal baby. He just looks so good lately. We had a meeting with the doctors yesterday and we decided that the trach was the best way to go for Brodie. We are very scared and no parent would like this for their son but if it will give him the best chance for development then we need to do it. The surgery will be on Monday or Wednesday of next week so will keep you posted. Next week will be a difficult one for us but we know that we can make it through anything at this point. In our meeting yesterday you could tell that a month ago the doctors never would have dreamed that we would be in this position. Brodie is truly our miracle baby and we know that each day we have with him is a blessing. I know we would not be here without the prayers of each of you and we would not be as sane as we are without your support. Thanks so much for everything and PLEASE continue to pray for Brodie and our family.

To Trach or Not to Trach?

Brodie has been doing great the past couple of days. For the most part his oxygen has been in the 30's and he seems to be resting better. He is in a little bit of a holding pattern but that will soon change. We are at a crossroad and it is time to either start weaning some of the mess for his pulmonary hypertension or have a trach put in. They want him to be able to do the normal developmental tasks and since he is doing better than ever they think this is the window. It is a risky surgery because of his health but if he gets worse it may not be an option. So needless to say this is a difficult decision of LaVona and I. We have heard many sides for and against and now it is up to us. Some may think that it is good to have the control but with that control comes a heavy burden. You just want to make the best decision for your child. We definitely are not qualified to make this decision since our medical knowledge 3 months ago was nonexistent. We have called a meeting with the team on Wednesday and hope that it will provide us with a clear cut answer. He is doing great and we just want to make sure that our decision does not set him back too much. All we can say is the next couple weeks will be a little stressful. We are so glad that we are even at this point. We will keep you updated on what our final decision is. I will try to get some current pics up so that everyone can see how good he looks. Thanks for the support and pray that we make the right decision.

Brodie Loses His Lunch on Daddy

Yesterday was a good day but they went up on his feeds and it did not sit well with him. I got to hold him and he threw up on me. I wish I could say that it was a wonderful experience but I have to say I was disgusted. Bradie "spit up" on me but this was a new experience. I felt like when we were leaving that the whole elevator was looking around wondering where that awful smell was coming from. Now that I ruined everyone's lunch we did have some news yesterday. The team has decided that Brodie would benefit from a tracheostomy or trach. Although this is not what we wanted to hear we now think it is best for him. The breathing tube is really starting to bother him and they have to restrain his arms so that he will not pull his tube out. If he gets the trach he will move around better, breastfeed and get the tube out of his throat. No parent wants their child to have to get a hole in their throat to breath but if he can start to be more developmentally appropriate then we are ok with it. He is stable right no but there are risks with this surgery. They are going to make sure that the echo does not get worse on Monday and then they might do the surgery middle of next week. This is just another hurdle and hopefully things will go great. His oxygen has been in the 30's for a couple of days now and he looks better every day. Thanks for the prayers and we will keep you posted on when they will do the trach.

Brodie on the Floor

Today we came into the hospital and Brodie was on the floor in a boppy. This is so crazy how far he has come in a short period of time. He has been doing great the past couple of days. His oxygen has been in the 30's and today it was 33% for a little while. Yesterday physical therapy came by and worked with him and he is going to be doing it 3 times a week. He just looks so good and he is not having the crazy up and downs that much anymore. Yesterday he had his BNP and echo. His BNP was 52 which is fantastic because anything below 100 is NORMAL. We have not talked to the pulmonary team but in rounds they said that the echo was relatively unchanged. This was a little bit of a disappointment because we assumed it would have improved. He might get a swing this week and start getting out of bed more. We are so happy with the progress he has made and we are so proud of him. He still has a tough road ahead and a few hurdles to get over but we can still hold on to the fact that he is exponentially better than he was before. Thanks to all of you for your kind words and donations. We are now only $432 from our goal. We are so blessed to have wonderful people in our lives and also to have met some wonderful people through this journey. Hope everyone enjoys the cooler weather and we will continue to let you know how Brodie is doing.

Keep it up Brodie

Today started out good for Brodie but for the last few hours he has been up and down. We think that it is because of his secretions and his withdrawals. His oxygen has been in the 40's most of the day but he seems uncomfortable at times. I think it is time to up his dose of methadone. LaVona got to hold him for over an hour so she was excited about that but also stressed because he gagged and choked a couple of times while she was holding him. Yesterday was interesting day to say the least. He was really up and down because of all of his secretions and agitation. Before I tell this next story I would like to preface it by saying that our experience at Texas Childrens has been amazing and we have received nothing but the best care. The doctors and nurses here are amazing and we don't know if Brodie would have made it this far if he was somewhere else. Yesterday Brodie needed an X-ray because he was so up and down and because of all his secretions so he got it done around 4. After his X-ray we heard his nurse gasp and run to get another nurse. They looked at it and soon after the nurse and the nurse practitioner came in and said they had bad news. They then told us that his patch had separated and they would need to fix it because his stomach was back in his chest. We were shocked but knew that it could be fixed and hoped that Brodie was stable enough to make it through. They called the surgeon and all the doctors were over. The attending called the fellow and told her that she needed to look at the X-ray since she was on for the night. When she looked at it she said, "that is the X-ray for the baby next door". Apparently the tech had labeled the X-rays wrong and the baby next door that recently had been admitted had CDH. You can imagine how happy we were that this was a mistake and that Brodie was still good. The great thing is that we have been on such a rollercoaster that bad news does not hit us like it used to. It is not that we don't care it is just that we have grown to trust that everything will be ok. Just another day in the life of the NICU. Thanks for all of your prayers and support. We hope everyone has a great weekend!

Uneventful Day

Today has been really uneventful for Brodie.  They decided not to make any changes on him today since they have made a few the past couple of days.  The pressures on the ventilator are down and he just has flolan as his only drip.  His oxygen is up to 61% so that is a little bit of a bummer but overall he is hanging in there nicely.  Today has been very boring up here and it makes you realize how crazy things have been the past two months.  Usually there seems to always be something going on but today he has just been sleeping.  It kills LaVona every time he cries because she can't do anything about it.  Even though we can hold him it is a huge process and you can't just pick him up when he starts crying.  I hope that we can get his oxygen back down so that they can start to try weaning the flolan.  As I mentioned in a previous post this medicine is not easy to go home on.  He will have to have a central line and have the medication in a backpack so that it can be constantly be going in him.  Because of this they want to try to get him off of it but we are very scared to wean it because we think that is what helped to get us here.  Thanks again for your prayers and support.  We have been able to raise $2600 for CDH research.  We are matching $2500 and another CDH parent is matching $1000 so we still need $900 to reach our goal.  I can't tell you how great it would feel to be able to write a $7000 check for CDH research.  Thanks to all that have donated and it is not too late to buy a bracelet or donate.  We love hearing the stories of how the bracelets started a conversation and how some of you have been able to share Brodie's stroies with others.  We are so amazed everyday by all of the love and support that were are receiving.  We can't wait until the day that we can bring him home and when we do just know that each of you had a part in bringing our boy home.