Welcome to our site about our son Brodie Dick who will join our family on August 8, 2011 at 8:00. At 22 weeks we went in to find out if we were having a boy or a girl and we found out that we were having a boy but that he may have a birth defect. After an agonizing week we found out that our son had CDH (Congenital Diaphragmatic Hernia). CDH occurs when the diaphragm fails to fully form, allowing the abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births and a baby with CDH is born every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. This will be a journal of our journey and will allow our family and friends to keep up to date on what is happening with us and our son Brodie. Thanks for your prayers and support!
Thursday, September 29, 2011
Today Brodie pretty much stayed the same. He was at 70% oxygen pretty much all day. They were not able to let him wake up more because they want him to stay around 60 consistently. The bad news for today is the he is swelling up more and more each day. He needs to start getting rid of the fluid ASAP. They are going to have a meeting of the minds tomorrow at 9 so we will let you know about what their plans are tomorrow. We are EXHAUSTED and are going to sleep. It has been a physically and emotionally draining last week. Hope everyone is having a great week.
Wednesday, September 28, 2011
Brodie had a good stable day today. His oxygen was in the 60's most of the day and his oxygen saturation was in the mid 90's as well. This sounds crazy but we actually saw our son move today. It seems like it has been forever since they let him wake up enough to move. He had his eyes open for a little while and would grab our finger. He wanted to lift his arms but we think his muscles are too weak right now. We are cautiously optimistic but encouraged by his recent progress. As I type this we are at the Astros game and Bradie is in heaven. He has been talking about going to a game for days now and he is having a great time. Not sure if he likes the game or the hot dogs and cotton candy but he sure enjoys himself. It is nice to get out with him because he is definitely being effected by our situation. If Brodie has a good day tomorrow the plan is to let him wake up even more. Hope everyone has a great evening and we look forward to giving you more good news. We can't thank everyone enough for all of the kind words, offers of help and your donations.
Tuesday, September 27, 2011
Today was a great day all around. Brodie did good all day and although they are still concerned about the fluid around his lungs his numbers have been good. They do not want to put a chest tube in to drain the fluid so they are hoping it will go away when they stop paralyzing him so much. We decided that we would leave at 4 since he was doing a little better. It was nice to be able to go pick up Bradie and we took him for a snowcone. It was great hanging out with him and he kept us laughing all night. To our amazement Brodie was on 66% oxygen this evening when we call up to the hospital and his saturation is still in the high 90's. We have definitely been here before but after Sunday this feels like good progress. Thanks so much for your prayers and support and we hope that Brodie has a great rest of the night and a good day tomorrow.
Monday, September 26, 2011
I am not sure what to say about today but that our prayers were answered. We stayed up at the hospital and I slept for 4 1/2 hours in the Ronald McDonald house and LaVona stayed in his room all night catching a nap here and there. He had a good night last night and we were terrified to go to rounds this morning. We had a rough day yesterday and were ready for the doctors to have "the talk" with us. This could not have been farther from the truth. They were putting a plan together and definitely had not given up. His echo was a little better and they were encouraged by that but on the x-ray you really couldn't see his left lung. The doctors are not sure if it is collapsed or if there is just alot of fluid. They decided that his breathing tube had an air leak and they needed to change it. This was very scary and we were not prepared for that after our emotional day yesterday but they did it and there were no problems. He has been doing good since then and they have even been able to wean his oxygen to 92%. We are still a little baffled at the events of yesterday and are not sure where their communication broke down but the team certainly did not share the same view as the nurse practitioner. All I can say is that our prayers have been answered and we are still working hard to bring Brodie home. We know (and are reminded many times daily) that he is VERY sick but hope is what we hold onto and until it is taken away from us we will always hold it tight. Thanks for all of the prayers and kind words. Also, please don't forget to purchase a bracelet as the money will go to a great cause and maybe help families like ours in the future. We sent out the first set of bracelets but we ran out so we had to order more. The new ones will be here Friday so as soon as we get them we will send them out. We are honored that not only do people want to help support our cause but they wear their bracelets proudly. We got a picture from LaVona's coworkers that showed a group of hands all wearing their Brodie bracelets. We are amazed at the support and love hearing the stories of how Brodie has changed lives. We can make our goal and can't wait to donate money for CDH research.
Sunday, September 25, 2011
I have struggled on whether to post the recent news or not but when I first started this blog I promised myself that I would be honest and free with my feelings no matter how hard it was. In "real" life I usually keep my feelings in and only let a select few in but so many of you have shown so much love for Brodie that I feel it is my duty to let you in our lives fully and wholeheartedly. Today started like any other day. We just went to church and were feeling so positive and ready to see our little boy. We came up to the hospital and Brodie was not doing as well as we would have liked but he wasn't doing that bad either. The nurse practioner came into our room and was telling us how Brodie was doing and then it got uncomfortable. She started to tell us that he responds to a medication at first and then as he gets used to it the medications just don't work. She let us know that we needed to start thinking of what we would like to do. She said that he is just not responding and although they can keep him alive that this is no quality of life. He has been on 100% oxygen for quite a while and he will just develop more lung disease on top of his laundry list of issues. They have been keeping him paralyzed and this keeps his brain from growing which is not good coupled with the stroke. We are not going to give up but we do have to start talking about his future. As I sit here right now I don't think either of us will ever be able to give up but we also will not let our son suffer. Brodie needs your prayers more than ever but I must say that myself, LaVona and Bradie need them as well. We have been able to stay pretty strong through this whole process but this has hit us hard. On top of all this Bradie has started telling us that he doesn't want us to visit his brother anymore. Just keep us all in your prayers. We both talked to Brodie tonight and let him know that we are at peace with whatever he decides to do. We certainly want him home with us but if he is ready to go then we are here for him as his parents. Just know that at times like this that we have held on to all of the kind words and gracious acts by each and every one of you. We would also like to thank the nurses that make a difficult situation a little better with just a few kind words. I will leave you with one last thing: LaVona and I will be ok no matter how this turns out. Our love for each other and faith in God can get us through anything. Thanks and have a good night.
Saturday, September 24, 2011
Today has not been the best day for Brodie. The nurse said that she put him on his right side and he did not like it. She also said that he didn't respond well to some of the doctors coming in and talking around him. We were just feeling so encouraged by all of his good progress and now he is back to his old tricks. He is all the way back up to 100% oxygen and we have lost all of the progress that we had made during the week. Hopefully this is just temporary and he will turn it back around. They did a chest X-ray and it looked the same as the last one so they are unsure why he is requiring so much oxygen. We will let you know when things change and hopefully he will be down on his oxygen later. Hope everyone enjoys there Saturday and somebody do something fun for us. We did get to get out today and take Bradie to the doctor. He has a cold and an ear infection so he won't be able to visit his brother until Monday.
Friday, September 23, 2011
Overall today has been a good day. His oxygen has gone up and down but at one point he was at 54% oxygen. Right now his oxygen is hanging out in the 70's but we don't consider that a huge step back. The good news is that the EEG showed no evidence of seizures but it did show some abnormal activity due to the stroke which they said is common. We also got the results of the BNP and it went down significantly. This is good because it means that the flolan could be working and that we are making progress on his pulmonary hypertension. We wish that he would stabilize and continue decreasing his oxygen but we are definitely in a much better place than we were a week ago. We believe that our prayers are being answered and we just pray that he continues to get better. We hope that everyone has a great weekend and thanks again for all that everyone is doing. We hope to bring more good news to you soon.
Thursday, September 22, 2011
Brodie had a good day today but did get violated in the process. Right now he is on 60% oxygen and is handling it well. He had an EEG early this morning and then had to get another picc line. The EEG went well but we have not received the results yet. He handled both procedures with no problems. The picc line took a few hours and we couldn't be in the room so that was not too much fun. We are just so glad that he is tolerating things better and recovers MUCH quicker than he used to. We noticed that he is starting to grow his hair back and it is still dark. Tomorrow they will do a test and it might give us an idea if the flolan is working but it seems like it may be helping. We will let you know as soon as we get the results of the EEG and the BNP. Thanks for everything and we hope you have a great night.
Wednesday, September 21, 2011
Today was a great day for Brodie which obviously made it great for us. I know it probably is not the first but it seems like the first day that has been free from any bad or negative news. I even made the doctor say to me that it was a good day. Could it be that the Flolan is working? I hope so but we may not find out for a few days. The biggest change between yesterday and today is that when he got agitated his numbers went down but they went back up quickly (without bagging). They were able to wean his oxygen all the way down to 62% and he has really tolerated it. I think I am finally becoming an optimist because I feel like he is going to stay on this track and keep moving in the right direction. As bad as yesterday was there was one bright spot for us. We got an email from a couple that had a baby that was born at 32 weeks with CDH. Baby Kinley soon went to Heaven but to hear from this family and see how they are coping with their loss has given us hope and peace with whatever happens to Brodie. They follow the blog which I imagine is very difficult but they are big Brodie supporters. They have also decided to match the bracelet donations up to $1000. This made us so happy and we just feel that together we can all make a huge difference for CDH. Thanks again to this family for their generosity and please pray for them and their family. We also thank all of you that have donated and if you would still like to please click on the donate button or email us. We are honored to be Brodie's parents and see what an impact he is making in this world. Have a great night and I know that tomorrow Will be just as good.
Tuesday, September 20, 2011
Today was one of the most physically and emotionally draining days we have had up to this point. It probably wasn't but right now it really feels like it. Last night he did great and he was down to 68% oxygen but by the time we got in he was on 100% oxygen. That is pretty much how the entire day went. The doctors had to bag him 3 or 4 times today. They have probably done this to him about 15 times but I know that will never get easy to watch. His oxygen saturation went lower than it has ever gone before and I was scared they were never going to get it back up. While they were bagging him respiratory did a deep suction about 6 or 7 times and got a ton of mucous out of his mouth and tube. This really seemed to help him. Today he looked pretty good but there were a couple of things today that are hard for a parent to see. The hardest is that he has a slight leak in his tube so now it makes a noise when he breathes and when he has fluid in his mouth it is worse. This is just something that we will have to get used to. The other thing is that towards the end of the night his eyes were open but they were not moving and he was just not with us. They have him paralyzed and heavily sedated so he is not consciously with us right now. Just another day in the new life of our family. We just called and he is doing better tonight so hopefully tomorrow will be a good day. Thanks for your support and hope everyone has a wonderful night!!!!
Last night we left the hospital around 8 and Brodie was doing good. We called a few times through the night and he was doing even better. His oxygen got down to 68% and we thought that maybe this medicine was helping things a little. I called this morning around 6 to see how he was doing and they said he was doing great. By the time we got here his oxygen saturation was in the 70's so they eventually had to turn his oxygen back up to 100%. This was upsetting but seems to be the new norm. His oxygen saturation got back up to 95% but during rounds I noticed it starting to go down pretty fast. When it got down to 91 I nudged LaVona and she went in to his room. A couple of minutes later he was down into the mid 50's and they began to bag him. This was scary for us because he had not been that low in a while. They eventually got him back to where he needed to be but as I type this they keep messing with him. At this point I just want to scream. This is so frustrating but I know that this is how it goes. They are still trying to figure out what the haze in his right lung is and also he has fluid aroung the left lung. They are giving him blood today and hopefully will just leave him alone. He does not do well with stimulation but he has been stimulated all morning. Hopefully things will turn around because I can tell that we are both reaching that point where we are getting frustrated. Brodie just got a new neighbor and this baby had a set of lungs. What we wouldn't do to hear Brodie cry like that. Thanks to all that continue to donate for CDH research. I never would have imagined that we would have received so much support. Everyone continues to amaze us with their support. We never would have dreamed that Brodie could have touched this many lives. Brodie's blog has been seen by many people in 10 different countries. Hope everyone has a great day!
Monday, September 19, 2011
We just got through talking to our doctor and the pulmonary team. His echo looked better but just a little bit better. It was not enough for them to feel comfortable with staying the course. They have made the decision to add flolan to his abundance of meds. Although this medication could help it is not a medication that we wanted him on. It has to have a dedicated arterial line and must go continuously into his body. If a line or pump stops working they have 3-6 minutes to get it changed out or it will cause big problems. When he goes home he will have it as well and will have to carry a pump in a backpack attched to an arterial line. That is not the ideal scenario but as long as he is home we will deal with whatever we need to. They are also starting him on antibiotics because there was a haze on his right lung in the X-ray. When we were talking to the pulmonary team they said that they hope the flolan works but the blood vessels to the lungs may just not have formed well enough or there may not be enough of them. This news really hit the heart. We knew exactly what they were saying to us and it was difficult to hear. He is a fighter and has so many people on his side. Let's just pray that the flolan works. Also, while he is on flolan they have to keep a close eye on his blood pressure and heart rate. Brodie obviously feels that we aren't stressed enough so he is keeping us on our toes. Please pray for Brodie. He needs it now more than ever. With all that said he has had a fairly stable day. He has been on high oxygen but is still doing ok. Have a great rest of the day and THANKS!!!!
Sunday, September 18, 2011
For the past few days Brodie has been holding steady and making progress. Today he had a little bit of a setback. Because of the sores on his head they have to reposition him from time to time. Just before we went to grab something to eat they changed him from his left to his right side. He got very agitated and his oxygen saturation went down into the low 80's. He stayed this way for a good while so they eventually had to go back up a little on the pressures and took his oxygen up to 100%. He has since done a little better and they have been able to wean his oxygen down to 94%. Tomorrow is a big day for Brodie. His echo needs to show some improvement so that the doctors will keep him on the same path. We feel like if he has not made progress that they will put him on a medicine that for some reason we feel uneasy about him going on. We will fight that fight if it comes but right now we just pray that his echo will show improvement. Hopefully they will do it in the morning and we can have the results by around 5. Please say a special prayer for Brodie tonight. This will be one of those nervous nights and a stressful day tomorrow. Thanks so much for all of the support and prayers. Thanks also to those who have purchased bracelets or just donated money. Hope everyone had a great weekend.
Saturday, September 17, 2011
Today Brodie is still holding strong on the ventilator. They got his oxygen down to 78% and then they decided to put him on another type of conventional ventilator. This one is just a little fancier and will assist him with each breath that he breathes so that he doesn't overwork himself. They upped his dose of the medication for his pulmonary hypertension and will do an echo on him Monday. This will be a huge day for Brodie. We can't tell you how important it is that his heart and blood vessels look better on Monday. Until then we will enjoy how great he is doing and assume that these things are being corrected. The last two blood gases have been good and they have lowered some of the pressures on the ventilator and his oxygen saturation is at 100%. Hope everyone is having a great weekend and again we can't thank you enough for how generous you have been. Also, thanks for your prayers and support and please pray for great results on Monday.
Friday, September 16, 2011
Last night we stayed in the Ronald McDonald house and finally got to sleep a little after 3. Each time that we felt comfortable about leaving he would have an episode but he finally stabilized around 2. This morning is when the fun began. We got up and went to rounds and soon after the director of neonatology came over to join in the conversation. He proceeded to emphatically suggest that he thought that they should switch to the conventional ventilator and eventually decided that they would give it a try. Although we were very scared we were both confident in his ability. We have alot of respect for Dr. Welty and trust him with our little boy. They started to bag him and he responded well so the doctor made the decision to put him on the ventilator. He has done well on the ventilator all day and we felt confident enough to come home and sleep in our own bed. We will have the dark cloud of pulmonary hypertension hanging over us for quite some time but we will take this victory today. LaVona and I would like to thanks each of you that donated and bought bracelets today. We are blessed to have such generous and loving people in our life. We have received donations from family, friends and people we have never met before. We may never meet some of you in person to thank you personally but just know that we will forever thankful for what you have done. Not only has Brodie gone through more than I have he has also touched so many lives in just a short time. I think through Brodie we can do many great things and help to change the course of CDH. If you would like to buy a bracelet please click on the donate button, post on the blog or email one of us. Thanks again and hope that everyone has a great weekend.
Today was a fairly uneventful day but then Brodie decided that he would make the evening eventful. He looked at both LaVona and I and thought that maybe we were sleeping a little too much so he decided to make sure we didn't sleep tonight. Just before shift change his heart rate dove down to the high 70's and he turned as white as a ghost. We then started getting visits from respiratory, doctors and a few nurses. These events just left myself and LaVona both speechless and helpless just watching and wondering what was going on. They eventually got him turned around and then they came in to do the x-ray and sent him into another tailspin. They increased his oxygen to 100% and his saturation hovered around 80%. They increased a setting on the oscillator and stopped a medication that they had just started before this happened. He then started to slowly go back up until he was back up to an oxygen saturation of 95%. This made us feel better but was short-lived since they had to change his diaper and now he is back down to a saturation of 80%. We were planning to leave but I guess we will sit tight and hope he bounces back soon. LaVona wanted me to share with everyone the question that I asked her so that it would put a perspective on what we are going through. I asked her if this was just another downturn or if he was slipping away from us. Although difficult these are things that we are feeling and issues that we must discuss. We know Brodie has much more fight left in him but we are having to face the reality that we have a very sick boy. Please don't let this bring you down because it sure doesn't bring us down. We know we have to stick together whether it is just the two of us in this hospital room or the hundreds of people that cheer him on every day. Let's continue to pray for his healing and hope that he has an amazing day tomorrow. We are also excited that the bracelets that we ordered to support Brodie have come in. Below is a picture of what they look like. On one side it has Brodie Dick 8-8-11 and the other it says I Support CDH Babies. We are selling these for $5 and since LaVona and I are paying for them the entire $5 will go to CDH research. We will also match the $5 for each bracelet purchase up to $2500. We would like to raise a total of $5000 for CDH research. Many of you have asked what you could do to help and this is what we would like. Our prayer is that someday they will know what causes this and what they can do to prevent other babies and families from going through what our family has gone through. We thank you in advance for your support and I know that we can make this happen.
Thursday, September 15, 2011
Today has been a relatively quiet day with not too much ups and downs. He is back up to 90% oxygen but has been fairly stable most of the day. Although he is not where we would like him to be at least he has not had a huge setback. The echo results came back and his pulmonary hypertension has gotten worse. They said that the right side of his heart has alot of pressure and the blood is not flowing to the lungs like it should. This was a big blow to us because he seemed to be making progress on that and now to find out that we are going in the opposite direction it is scary. They are going to start him on another medicine to try to open up the blood vessels and relieve the pressure. He is already on a high dose of a medicine to help that but it is apparently not working like they would want. As you can see from the pictures I posted yesterday he is swollen quite a bit and just doesn't look like himself. We know that once he gets better that all of the swelling will go away but it is just hard to see. Please continue to pray for Brodie and hopefully they can get this issue under control. His lungs look good and hopefully one the pulmonary hypertension goes away he will be able to make some good progress.
Wednesday, September 14, 2011
Yesterday was the best day that we have had in a long time. His oxygen saturation was at 100% most of the day and they were able to wean the oxygen on the oscillator to 45%. We were on cloud 9 and it was so great to see some real progress. They were getting ready to come down on the pressures on the oscillator if he continued to stay the same. We came back from a break at 11:00 pm last night and he was back up to 100% oxygen on the oscillator and they could not get his oxygen saturation into the 90's. He continued the downward trend and they had to go back up on the oscillator pressures and he just didn't have a good night after that. We called at both 4 and 6 this morning and he still wasn't doing that good. When we got here he was doing a little better but he just has not recovered. They did not do the echo yesterday but finally came today and just finished about 20 mins ago. He is now acidotic which is not good and they can't figure out why. On top of all that they rolled him over a little bit and he has some sores (skin breakdowns) on his head. The wound team has taken a look at it but we are not sure when we will hear the results from that. Hopefully we will get those results back soon along with the echo. We are so frustrated and we know there are going to be ups and downs but it is just getting a little more difficult. I will try to post some current pictures today. One bright note is that we were able to meet two cdh survivor babies today. This morning we met Brooklyn which is the daughter of Lindsey that we have talked about in previous posts and also we met Cade who is 15 months and had most of the same doctors as Brodie. They were sitting next to us in the food court and I kept hearing them say Dr. O (Brodie's surgeon), MRI , and stroke. We eventually asked them and found out that Cade was a cdh survivor and it was great to hear his story. I can't tell you how great it makes us feel to see these two beautiful babies and know that they went through the same thing as Brodie. We know that each cdh baby is different but it gives us hope to see these two miracle babies. It is amazing how God puts people in your path just at the exact time that you need them. Sometimes you can feel like you are on an island all by yourself and that nobody knows what you are going through. To not only see the babies but to also talk to the moms and see that they went through some of the same things it is comforting. We will keep you updated and ar thankful for all of the prayers.
Tuesday, September 13, 2011
Brodie did not have a good night last night. He went down quite a bite on his oxygen saturation and they had to increase his oxygen to 100%. Even when they did that his oxygen saturation was still not where it needs to be. The great news is that he has done amazing this morning. They have been able to wean his oxygen all the way down to 54% and his oxygen saturation is 100%. This means that soon they will probably wean his oxygen again and maybe we can get his oxygen below the magic 50%. If he can stay below the 50% mark for a little while they will start to go down on the oscillator pressures. We are so proud of him and how he has done this morning. I just pray that when they come do the echo that he does not have any issues. He is not tolerating his feeds and they are looking at a few different options to bypass his stomach to get him milk. We know that he is going to have these side issues but as long as we can get his breathing and oxygen under control these other issues will hopefully fall right into place. I am so glad that he doing better because the last few days have been difficult. We are exhausted and nothing seems to help. If we did not have help from the grandparents it would be impossible. Thanks to all of the grandparents for your help. Also, thanks to everyone else for your support and prayers. It gives us that little extra push that we need to make through each day.
Monday, September 12, 2011
Sunday, September 11, 2011
Brodie had an ok night and he is having a good morning. Last night they had to go back up on his oxygen to 70% but this morning he has come back down to 56%. There have really not been too many other changes. He is handling his feeds that they started and the nurse said that there was not alot of residual left in his stomach. Overall it seems like things are at a bit of a standstill. It seems like during the day they are able to wean his oxygen and then at night he goes back up. Hopefully soon he will snap out of this trend. Today is the first day since Brodie has been born that we are going to venture out for a few hours of fun. We are going to take Bradie to the Texans game and he is very excited. He has been talking about this for weeks. Luckily the stadium is just a few miles from the hospital so we can come back after the game. It will be good for us to have a little fun but also going to be very difficult because we will miss him and feel guilty for having fun while he just lays in his hospital bed. Hope everyone has a great Sunday and thanks for all of the kind words and prayers.
Saturday, September 10, 2011
Brodie had a good night last night and a good morning. He is almost back down to the oxygen level that he was at before the last setback Thursday night. I am flying solo at the hospital for a little bit while LaVona goes and gets the full hair treatment. I know that this will be good for her and she needs a little time away. I am sitting in the dungeon that is Brodie's hospital room. Since his last setback they have gone back to the lights off and quiet room policy. The layout of the NICU has rows of beds in an open room (which I call general population) and the rooms on the outer edges (I refer to them as solitary confinement or the suites depending on my mood). As I look out into general population I am jealous of the light and open air that they get to enjoy. The sickest babies get the suites so we live for the day we get to move out of here. I now understand why solitary confinement makes people go crazy. Hopefully today we can make some good progress on his oxygen. They have decreased his blood pressure medicine, his sedation medicine and are not giving his paralyzing medicine at the first sign of the slightest movement. Today they are also putting him back on feeds. He will be on a continous drip of breast milk. This is big step in the right direction buy also scares us because he had his biggest setback after they started his feeds the first time. We welcome every change in the right direction but we also are terrified because we all know at this point how sensitive he is and how things can change in a second. Make it a good Saturday and I hope that everyone has the same beautiful weather that we are experiencing. Prayers go out to all the people that are effected by all of the fires.
Friday, September 9, 2011
Brodie had a tough night last night. We called late last night and they said that at midnight they had to increase his oxygen back up to 80%. Then we came in this morning and the lights were off and he was at 100% oxygen. The good news is that they did not go up on any other settings on the oscillator. We are at least taking 2 steps forward and then one step back. Before it seemed like we were taking one step forward and two back. They have started to wean the oxygen again so at least that is encouraging news. We are very perplexed at what happens here at night and can't quite seem to figure out why he does better during the day and not so good at night. We need to get our sleep but if he continues this we will have to start pitching tent in his room. He looks a little better today because the swelling has gone more to the back so he look slightly more like himself. Hopefully he will have a good Friday and we hope you do as well. LaVona is holding up pretty good but the process is starting to break her down. She is just feeling helpless and wants to help Brodie but can't. I give everyone permission to blow her email and phone up with encouraging words. She needs a pick me up and I just keep saying the same things over and over so it has become rather ineffective. Thanks for your prayers and support. Even after a few decent days this is still emotionally and physically draining.
Thursday, September 8, 2011
The results came back for the EEG and there were NO SEIZURES. This was great news to us and Brodie is having a great day. They have gone down a little on the pressure of the oscillator and will go down one more today. After they go down on the pressure they will try to go down on the oxygen. This is the first time in a LONG time that everyone seemed encouraged with his status. Usually they will say that he is doing good but..... These are much happier days but we must be cautious because anything could trigger his pulmonary hypertension and we could go back to where we were. The plan is to go down as slow as possible and just see how he does along the way. He is still retaining alot of fluid and his head looks pretty bad. We are also anxiously awaiting to see what neurology has to say. Overall he is having an amazing birthday!
Today is Brodie's 1 month birthday. It is hard to believe that he has already been here for an entire month. This is a big day because there have been some days along the way that we didn't think that he would ever make it a month. Thanks to all of everyone's prayers we have managed to not only reach 1 month but at least be moving in the right direction. He is an amazing little boy and it tears our hearts apart to see him just lying there with a tube in his mouth and us not being able to hold him. I feel like things will get even better soon and we will be able to hold him again. We have still not received the results of the EEG and they have not rounded on him yet. We will post the results when we get them. Overall he has stayed the same from last night to this morning. Hope everyone is have a great day.
Wednesday, September 7, 2011
Today was a good day for Brodie's numbers. Most of today he did really well with the exception of a couple of brief moments. The head ultrasound came back and there were no problems other than they didn't see an increase in the brain size. They also ended up doing the EEG because he started to have jerking movements just like when he was having seizures. We did not get the results back on that but probably will tomorrow. We just pray that there are no other issues with his brain and that those movements are not seizures. The team got together and decided to keep him on the oscillator and not put him back on the ventilator. They feel like we are making progress at this point and do not want to take any chances. The nurse stopped giving him the paralyzing medication and the team decided to keep giving it to him when he starts to wake up. Brodie is at 60% oxygen and has stayed there most of the day and they have decreased the other settings on the oscillator as well. Tomorrow is going to be a tough day if anything comes back abnormal on the EEG. Hope everyone had a wonderful day and has an even better tomorrow!
Brodie is still making progress. He had a little bit of a setback this morning and they had to turn his oxygen up to 88% but he has since come back down to 60%. This is great news because we never would have thought that he would be able to tolerate going down on his oxygen that fast. He is getting the paralyzing medicine a little less often now so that is encouraging also. He had his head ultrasound this morning and we have not received the results but they are going to wait on his EEG until tomorrow so that they don't mess with him too much today. The entire team of doctors has a meeting today at 2:00 to discuss our little guy. Some people think that they should switch him to the conventional ventilator and some think that they should keep him on the oscillator. They will put their heads together and come up with a plan for what they want to do moving forward. We are so happy that things are moving in the right direction and are so proud of the fight that Brodie has put up so far. Thanks for all of the prayers and continue to pray for him. As I type this his oxygen saturation went down to 85% from 95%. He sure keeps us on our toes and stresses us out.
Tuesday, September 6, 2011
Today was the best day in quite some time for our little fighter. He has done really well and his numbers have responded great to each change that they made. Believe it or not the oxygen on the oscillator is set at 71%. It has not been down that low in over a week. They have come down on a couple of other settings as well. Although we are very excited by this news we have been here before and been crushed by a setback. We will think positive and hope the he keeps moving in the right direction. We see some twitching and jerking that looks similar to seizures so we just pray that they are not back. He is getting a head ultrasound and EEG sound please pray that both give us great results. WE ARE SO PROUD OF YOU BRODIE. He has fought so hard and it is an honor to be his father. He has been put through more in his first month than I have in 34 years. Stay strong buddy and we can't wait to bring you home.
Brodie had a good Labor Day. They didn't make any significant changes. He is now currently on 86% oxygen on the oscillator and this morning they have gone down a little bit on some of the other settings. Although we are encouraged by this news we are still scared because he is so close to maximum support that there is not too much room for a setback. We were able to leave the hospital at 5 and go spend time with Bradie. He just had us laughing all night and it was great to spend some good quality time with him. It makes you realize how much joy kids bring to your life and makes coming up here a little easier. We got some sleep as well so we have a little more energy than last week for sure. A girl just stopped me in the hall and told me that she was praying for us and Brodie and that we are such a kind family. I have learned through this process that it takes just a couple of seconds to say things like that and you don't understand how it helps someone. The number one question we get is, "How are you doing it"? The truthful answer is that we are able to make it through all of this because of all of you and all of the other amazing people that we come into contact with on a daily basis. It would be easy to see the bad in the world right now but we are surrounded by so much good that it is just impossible to do anything but feel blessed in our situation. Sure it is not easy, but when you see the lives that Brodie has touched and the way people have touched ours we would have to say that life is good. Please pray for all of the people being effected by the fires right now. Thanks again for all of the support and prayers. We are moving in the right direction but we know we still have a very rocky road ahead of us.
Monday, September 5, 2011
Happy Labor Day to everyone. Brodie did well through the night and into the morning. They were able to wean his oxygen down to it's current level of 88%. His oxygen saturation has been around 92-94 so he seems to be tolerating slight changes. This is progress but we have a long long way to go and they are going to do it slowly. The unsettling part of his current condition is that he requires very heavy sedation to get him to this point. When he starts to wake up his numbers go down and they have to give him a paralyzing medication to stop him from breathing over the oscillator and moving too much. Also, the thing that hurts our hearts is that he is retaining fluid and most of it is collecting on his sides and head. He doesn't even look like himself anymore. He is also losing his hair. We knew before he was born that he would lose his hair eventually but we though it would be 30 years from now. Overall, even though he is still very sick and has lots of hurdles to go over we are pleased with his progress. We are just dying to hold him again so we are hoping that within the next couple of weeks he can get better so that we an hold him again. We were finally able to get a normal nights sleep so were are feeling better but definitely not refreshed. Hope everyone has a great Labor Day and thanks for your prayers for Brodie and support for us.
Sunday, September 4, 2011
Last night after his big episode they were able to get Brodie stable and keep his stats up. We were able to go home last night and we arrived around 12:15 We got everything done we needed to do and called about Brodie around 12:45. They said his numbers were good but the co2 has actually gotten too low. We have been fighting for weeks to get it low and now it is too low. They said they would make a change on the ventilator and would do another blood gas. The nurse said to call around two and they would have the numbers. We did not get to talk to them until 2:30 but when we finally got in touch they said that it was better. He did well through the night and this morning. They were able to wean his oxygen to 97% but there are now instructions to just leave him alone. Don't try to wean him or anything else that may cause him agitation. This is great news to us. Hopefully he will stay stable and maybe we can get home early and get in bed before 11 so webcan get lots of rest. Overall we are pleased with his progress but they keep reiterating that he is still very sick. Have a great rest of your day and Happy Labor Day to everyone.
Saturday, September 3, 2011
Today started good and we thought it was going to be a laid back day. We couldn't have been more wrong. LaVona went and picked up Bradie and then we went to lunch. We got back from lunch and walked in to chaos. All we could see when we rounded the corner was a room full of doctors over Brodie. We looked at his oxygen saturation on the monitor and it was around 78%. The doctors were working on him and not telling us what was going on. They then started to bag (hand ventilate) him so we got very concerned. We soon found out that they were trying to get some mucous out. They ended up getting quite a bit from his mouth but not the tube. His numbers got better but then they went down some again. They changed a setting on the oscillator and we went to get Bradie squared away. About thirty minutes later we were coming back to his room and we could see from far away that he was in the 90's. When we got into the room we noticed that he was 95 again. He has stayed that way for the past 20 minutes we have been here so hopefully he will stay on this track. We can't quite understand how things can change so quick. I am sure that the nurses think that we are nuts at this point but you just don't understand how emotionally draining each dip is and what it takes out of us. You just know that there are going to be dips but each one blindsides you just as much as the first. Please pray for Brodie and our sanity. I should probably swing by the heart doctor sometime this week to make sure my ticker is still good. In the last almost four weeks it has felt much excitement, pain, love and been broken. I am not sure how much it can take but judging by the past it will need to endure much more to make it through. Hope everyone is having a great weekend.
I am going to preface this post by saying that Brodie is still very sick and is far from out o f the woods. However, HE HAD A GREAT NIGHT LAST NIGHT! When we got back to the hospital from putting Bradie to bed he was between 95 and 99 and was doing well. We felt good about things and went to our room at the Ronald McDonald house and got some much needed sleep. LaVona had to wake up in the middle of the night to pump so we went and check on him again. He was at 100% oxygen saturation and they had started to wean the oxygen on the oscillator and brought him down to 89%. We then woke up around 9 and went down to catch rounds and he was on 82% oxygen on the oscillator and they had decreased the pressure again by one. It is great to see the faces of some of the people that have had him the last 3-5 days when they come by to check on him. They are amazed by his progress. Not sure yet what they are going to do yet today because they have not rounded on him yet because they round on the sickest babies first. We do know that this can go the other way quickly but have to hold on to the good moments. We believe that All of the prayers have gotten us this far so please keep prayer for our precious boy. Thanks for all of the support and we just pray that things continue in a positive direction.
Friday, September 2, 2011
Today was a good day for Brodie. He had good oxygen saturation all day and we even saw 100% for a quick moment. He also went down twice on his oscillator pressure and he managed that as well. The first arterial line they put in this morning worked for an hour and then quit working. They got the second one in after lunch and that seems to be working great. The one negative about today was that he has been heavily sedated most of the day. He tries to do too much on his own and that causes problems with the oscillator. Tomorrow is a big day. They told us that they would like to change him back to the conventional ventilator so that should cause us to be on edge most of the day. He is making progress today but he is also being referred to as the "sickest baby in the unit". We are getting ready to go home for a couple of hours so that we can spend some time with Bradie and then come back up here after we put him to bed. The 45 minute drive is pretty rough when you are as tired as we are. Little Brodie is worth every second and we just look forward to the day when he accompanies us on the ride home. Everyone have a great evening and thanks for everything.
Brodie is still very very sick but at least we are stable again. His oxygen saturation is 92% and his blood gas was better than the last one. They just decreased the pressure by one on the oscillator. They took him from 17 to 20 last night so hopefully today when can get back to 17. We are still a little in shock over last night's shenanigans but we are going to move forward as is Brodie. He got a new arterial line this morning which is good. Things are moving in a better direction so I am encouraged by his progress. We just love Brodie so much and our bond gets stronger everyday. I don't want to lose him so let's keep the prayers coming. The outpouring of support and kind messages let us know that we are doing our best and we will never be able to thank each of you enough. How do you repay someone for giving you hope and love when you are at your lowest. As you go through your day today please use our situation to help you appreciate what you have and not worry about the things we cant control. I don't know what the outcome is going to be but I do know that God put Brodie here to touch each of your lives. It is up to us how we let it change us. LaVona and I will forever be changed for the better and I just pray when we go back to our "normal" lives that we will remember the things that really matter. Have a great day and it's Friday of a long weekend.
Yesterday was a difficult day for Brodie. They are confused on what to do for him because all of his X-rays and echos show that he has been improving but he doesn't seem to be increasing his blood gas numbers and oxygen saturation. They told us that it was just going to to take a little while for him to get back to where he needed to be. They were going to stay the course and see how he did. The day team switched out with the night team and we met the most amazing nurse. In just a few short moments we knew Brodie was in great hands. Because we thought he was in great hands we left to go home around 8:45 so that we could sleep in our own bed. We went home and ate something and hopped into be at around 10:45 and we called to check on him and the nurse said his numbers were not great but that they had gotten better. Then she said hold on the nurse practitioner wanted to speak with you. LaVona put me on with her and the night went south from there. She said they thought maybe he had a mucous plug in his breathing tube so they were going to do a fairly risky procedure to get it out if there is one. She said that if this does not change his numbers that he could deteriorate and they may have to call us in. They said there is a possibility that in his current state he would never recover. I then asked her if we had reached this point an she said yes. This goes against all we have been told from the day team. The day team are neonatal doctors, surgery, pulmonary, neurology and respiratory. They collaborate and come up with the best solution based on how he has been doing. I tried to let her know unless it was urgent that we would like to wait until morning to see what the team wanted. She pushed on and said there were doing the procedure at midnight. We sprung out of bed got dressed and rushed to the hospital. When we got there they were calling in a bunch of people to help with the procedure and we patiently demanded to talk to the attending physician. He said nothing else was working so they thought this might. We went back and forth and I let him know of the thoughts of the doctors on the day team and he finally agreed to wait until morning as long as his lactate levels were good. This was the hardest thing I had ever done as a father. To step in and tell a doctor that I didn't agree with his opinion was not only hard because he is a trained professional and most of all because I did not want to get in the way of the care of my child. I truly felt in my heart that if they would have done the procedure that we would be burying Brodie. I was not ready and it was time for me to fight for him. They ended up giving him heavy sedation and his oxygen saturation went from the low 70's to 89. We will be going to rounds this morning and I am very anxious to hear what they have to say. I also just pray that they don't tell me that I should have let them do the procedure. We all have alot of fight left in us so I am not ready throw in the towel yet. A special thank you to our nurse last night. God put here there for us last night and without her last night would have been far more difficult. Allison you are amazing and we will forever be thankful. We have a busy day ahead but the nurse set us up with the Ronald McDonald house. After 44 hours with no sleep we finally just crashed. We need your prayers more than ever today. Sorry this one was so long and I will post something after rounds.
Thursday, September 1, 2011
I don't even think I can begin to describe the night we had. I think I have officially gone insane and it was a very emotional night. A little before we were leaving to go home to put Bradie to bed a baby came up and was getting quite a bit of attention. When we got back the baby was getting even more attention and about 4 this morning we noticed that the monitor went black and found out that the baby had passed. You know in a place like this that it happens but until you see it firsthand it is not real. It really hit home and made us realize that there are some parents that leave here without their child. In our current situation that is not something you want to see. Right after that Brodie's oxygen saturation went down to 70 and he just never seemed to recover. I have literally been staring at a monitor begging for the numbers to go up for the past 10 hours. Between the two of us we got a little over an hour of sleep. The positive news is the he usually does better during the day than at night. His chest X-ray looked better today but they just aren't sure why his oxygen saturation isn't better. Please say a prayer for the family of the deceased baby and for Brodie. New doctors start today. A fresh set of eyes never hurt anything. Hope everyone has a wonderful day!