Chest Tube

About 10 minutes after leaving the hospital (and making sure with the nurse that there hadnt been any talks of chest tubes lately) we got a call from a surgeon saying they were putting in a chest tube. Things really do change minute from minute. After about an hour we got a call saying that it had gone well and they were waiting for the chest Xray to confirm correct placement, but that Maxton had tolerated it very well. I asked about his settings and it sounded like everything was kept the same, so I was very pleased with that. The procedure took about 10 minutes and seemed to go perfectly. Little man is SOOO strong and I am so very proud. He continues to amaze me everyday.

I heard in rounds this morning that they are using him as one of their case studies. I think he has the doctors a bit baffled. :-) The RN said this today "No offense, but Max is one weird little guy". I think God sent him here to challenge those doctors and I am glad he is teaching them too. I hope all is well with everyone. As always, thanks for checking and praying/thinking of us!!!

"Why Rock The Boat"

When I went back to see Maxton late this afternoon the doctor was back there because he was having a "mini episode". He quickly recovered (with the help of little pain meds) . The doctor said they were pleased with the way Maxton was able to now self regulate during an episode without a lot of fluids and also pleased with the way the weaning was working. In the time since the morning, they have decided not to do anything about the air link at this time. Tomorrow may be a different story, but for right now the hole will just be there and the air will be drained later. Maxton has been weaned down to 69 on the oxygen and also further weaned on his pressures on the vent. The next thing is to wean the other vent setting ( I am honestly not sure what it does, but I know it is set right around the maximum). Basically they are suprised his still tolerating weans with the leak and the doctor said since he was doing well with it "why rock the boat". I am praying that Maxton continues to tolerates the weans throughout the night. He is also getting some good doses of lasics and seems to be putting out alot of the fluid that has accumulated. The doctor said today that Max was probably double his birth weight. I think he may have forgotten that he was a big boy to begin with, but I would say he has several pounds of extra fluid right now that needs to go away before they can do surgery. Here is to hoping for good night and good day tomorrow. Thanks for the prayers, they are definately working.

Uncharted Territories

When I called this morning I was very pleased to hear that Maxton was being weaned down on his oxygen to about 94 and he didnt have any episodes overnight. However, when I got here this morning the nurse was telling me that they may have to put chest tubes in. apparently, Max's left lung now has a hole in it. This is not uncommon in CDH babies, but the typical treatment is a stay on ECMO. As I have already said, MAxton is not really an ECMO candidate. Yesterday his head ultrasound showed that his brain bleed was still a stable grade 2, but it had not improved any. The doctors are sort of confused as to what treatment would be best. A few doctors still recommend ECMO so as to not further damage the lung, but the risk for brain damage because of the preexisting bleed is still very high. Another set of doctors feel that perhaps a "chest" tube should be placed in the abdomen to allow the air to escape. Typically, a chest tube is inserted between the ribs, but with Maxton's organs still being herniated this is not safe. They would like to be able to just repair his hernia and then put in chest tubes, but they feel like the amount of swelling on Maxton would not allow for a good repair of the hernia. They have been debating since early this morning trying to figure out what to do. David and I feel like the tummy chest tube is the best option as we would not want MAxton to have a huge brain bleed on ECMO resulting in death or severe brain damage. The doctor we met with agrees, so hopefully the surgeon will agree as well.

In the meantime Maxton is doing very well being weaned. I am so proud of him and feel like the prayers and pep talks David and I have been giving him are definately working. He hasn't had an episode today and his oxygen is now at 78 and he is still satting 100 both pre and post. His vent setting is still high but they are hoping to wean that starting possibly this hour. His bi carb drip is gone and his dopamine is down to 10, which was the goal from yesterday. His vitals are right where they want them. If it wasn't for this hole in his lung we would be having a good day. I appreciate everyone checkin in on us and have read everyones comments. I wish I could reply to you all individually, but know that I have been reading your well wishes!! I will hopefully update later about what the doctors decide!

Extra prayers today please!

After meeting with the doctors this morning it has been decided that Maxton needs to prove that he can be weaned on some of his support. Yesterday his oxygen was bumped down to 80, but overnight his nurse moved his head to the other side and he had an episode, so it was bumped back up to 100. His vent was also bumped back up to 47. Basically, they will be weaning both of those meds today, along with his dopamine. Please pray that he tolerates this well! They are very concerned about the amount of support that he has needed thus far and really want to see him needing less to maintain himself. I am praying that everything goes well. ECMO was again mentioned as a possibility if nothing else is working, but the risks with it are HUGE due to Maxton's brain bleed. The are doing another ultrasound today to determine if the bleed is still present. Please pray that it isn't, then maybe Maxton can be placed on ECMO. I feel guilty because I prayed so hard that he wouldn't need it and now that he does he doesn't qualify for it due to his brain bleed. Hopefully, he will be able to maintain himself today and show the doctors just what he is made of.

Also, they have mentioned the possibility of his "episodes" being seizures. They are giving him some anti-seizure meds in the event that they are seizures. If they are seizures it could indicate that the brain bleed has caused some damage. However, it could also mean that he will be able to be weaned off the support that he is on. He was doing well yesterday with the weans other than the episode after his head was moved.

I feel like today is going to be a long day for us. I am really praying that he does well with the weaning as this would make the doctors much more comfortable with the inability to go on ECMO and comfortable with Max's plan of care. I plan to update later assuming there is a computer available. Thanks for everyone's love and support. My little guy is fighting as hard as he can and I cannot explain just how proud of him I am. He has already taught me so much and I will never be the same.

Teeny Tiny Steps

Maxton has had a pretty uneventful couple of days. He has a few "mini" episodes but is able to recover pretty quickly with his preferred regimen of fluids and a bump up on the vent or oxygen. I think the doctors have finally figured out exactly what he needs when he is starting to have an epsiode and have been able to keep a larger one from happening. Today they were able to wean his oxygen down to 80 but he had a mini episode so it was back u pto 84 when I left. The plan overnight is to simply wean it back to 80. The larger picture goal is to get it down to 60.

I think the doctors wanted Max to make bigger progress in the beginning but have now learned to listen to him and to understand that he will do things in his own time. I am so proud of how hard he is fighting. Whenever I visit him he looks so precious and tries to wiggle his little toes (nice to see but I wish he would just rest).

The good news is that CO2 levels are up. Today one was 38. The doctors had said yesterday they would like to see them above 30 (yesterday morning his highest was like 26). So I was very glad to hear 38 this morning.

Overall I think Maxton is doing a little better. I think the doctors would like to be able to put him on ECMO but are still not able to because of his brain bleed. It is not any worse, but still not any better so for right now the plan is still the high oscillating vent. We were told today that Max is basically getting the treatment that would have been given to ECMO babies before ECMO existed. I am okay with that.

Thanks for checking the blog and leaving posts. Everyone is so encouraging. I am so proud of my little Hoss. Praying for a restful night.

A little Better

Last night they got us a room at the hospital so that we would be close if Maxton had another episode. So far he has done well. The vent was at it's maximum setting of 50 yesterday and today they have been able to wean it to 42 and change the way Maxton is laying, all without an epsiode. I am hoping that this trend continues.

The doctors in rounds this morning were much more positive than the doctors yesterday. They are pleased that Max has been doing well with his sats. The main concern is some brain damage due to low CO2 levels because the vent has to be so high. As of right now ECMO is still not possible due to the brain bleed. They are doing an ultrasound today to check the bleed in case Maxton has another episode to see if ECMO if possible later. The doctor said they have learned that Maxton doesn't like too many changes at once and hopefully they are figuring out his "plan of treatment". I have learned these babies are so tempermental and each has their own plan of their treatment.

Todays plan: very, very slowly wean the vent
try to wean off of most of the antiobiotics
wean the dopamine a little
Add a monitor to montior blood flow to the brain to see if brain damage is likely occuring or not.

I think that is it for the plan. I am so proud of my little man. I told him we couldn't wait to hold him and love on him and he kicked his little foot this morning. I think he can't wait either. Oh yeah, they are also increasing his fentanyl to try to stop some of the movements. he was awfully wiggly for a sedated baby this morning. :-) Of course we liked to watch him move a little.

Thanks for you support and prayers!

Still Trying to Fight

Maxton is still trying to fight. When we got here around 6 he was in the middle of one of his episodes. We walked back to a room full of people and monitors beeping with levels falling. After about an hour and a half he is now "stable" again. Unfortunately, he is also on the maximum amount of support that they can do for him. Now, it is up to him. We know that he is a fighter and will do his best. We are praying that God be with him and fight along side him. We were told that at this time he has about a 30% chance of making it. We are praying like crazy that he doesn't have another episode during the night because there isn't anything they will be able to do. They did mention ECMO again. The brain bleeding is not any better, but it is also not any worse. They are not sure whether to do ECMO but will likely do it if he has another episode. Please pray for our little man. I can't imagine losing him as we both love him so very much. We are trying hard to stay positive and know that other babies have been in position and come through just fine. This gives us hope and we try to remember everyones stories when meeting with the doctors. We appreciate you all, more than words can ever say.