Failed attempt

Aiden had his surgery on 50% ECMO. After surgery his blood gas came back really good. So they decided to clamp off ECMO because they were hopeful that he would have better ventilation once all the packing was gone and they thought that would get him off ECMO even if it was only long enough for him to clot from the surgery. 20 minutes after they clamped off they did another blood gas and that one came back bad. So now he is on 100% again. Now the problem is he is bleeding again. Not as bad as before but now he receiving blood products. The doctors are having a hard time getting his extra fluids off so having to give him blood and another med to stop the bleeding is discouraging.So the plan is to get as much fluid off as possible and try taking him off ECMO again. Maybe the third time will be a charm!!!

Surgery # 6 (for real this time)

They decided to go ahead and do his dressing change surgery. They said that the tight packing was causing ventilation issues. They did the surgery on 50% ECMO and it went just fine. They didn't close it up. They packed it very lightly so let's hope that it doesn't bleed. He didn't need any blood products or extra fluids and hopefully it will stay that way. They will monitor him for a while and depending on his ABG's they may just take him off ECMO. So we will see. Back to the waiting game. More updates to follow!!

Sooo close!!!!

Aiden was suppose to come off ECMO today but last night he started to bleed again and his blood pressure dropped. They had to give him a lot of volume and blood products so we are back at square one. The goal for the weekend is to get fluids off of him. They also turned up the vent to see if he can tolerate that for the weaning process of ECMO.

Second go round!!

Well the surgery he was suppose to have yesterday they decided to postpone. They didn't want to interfere with all the progress he has made with getting off the fluid. Tomarrow is a big day. They are planning on trying to take him off ECMO. This time I believe he is ready and will do just fine without it. Also if all goes as planned they are planning on doing his dressing change surgery tomarrow as well. They may even close the incision up. They aren't sure yet. A bit of shocking news we found out that Aiden has extra fluid in and around his brain. They don't know the cause. They are just closely monitoring it for now. So let's pray that it doesn't mean anything and that it will heal in time!!! On a good note his chest x rays have shown that his right lung is filling up with air and his left(bad lung) is filling up too they just can't tell how much. So they prayer for the day is that he can come off ECMO smoothly and that his surgery goes well and that they can close it up once and for all!!! Thank you:)

Surgery # 6

Aiden will have his 6th surgery today. Unfortunately he is still on ECMO. So everyone please pray that he doesn't have any excessive bleeding during or after the surgery. We ate praying that his vitals stay perfect and that he doesn't require a lot of blood products. He still isn't losing the extra fluid so they have him on another med so let's pray that the fluid will start to come off so he can start to be weaned off ECMO!!!

Just keep peeing!!!

So today's big project for Aiden is to pee, pee, and pee...lol. He still isn't getting the fluid off so the doctors have him on two diuretics and are using a filter on the ECMO machine to pull fluid off but Aiden isnt wanting to give his fluid up. I'm excited for him to lose the fluid because I haven't seen his normal size yet...just pictures. So I want to see my 5 lb baby!!! Dressing change surgery Probley thurs or fri. Hopefully he is off ECMO but Aiden is being stubborn with his fluid so he Probley will still be on ECMO. So the prayers for this week consist of Aidrn getting off all his fluid, him coming off ECMO and his surgery to go very smoothly off ECMO!! I have a couple of side notes as well 1. For Aidens fans that are expecting a CDH'er, please take this advice. Never ever give up hope!!! Aiden coded the day he was born, his "good" lung collapsed, and we were told not once but twice by the doctors and I will never forget these words "If this doesn't work, I'm sorry there is nothing else we can do for your baby" (pertaining to all the blood loss)but Aiden has overcome all of that. Secondly, never underestimate the power of prayer!!! 2. Aiden has had several several several blood transfusions that have saved his life!! So I am asking people to donate blood and save a life!!! 3. My little miracle is in the paper (the times) so go check that out!! I love CDH awareness!!!!

New news

Aiden has been doing good. Doctors would like to see him off ECMO by the end of the week. They have decreased his med to stop bleeding. They have increased his diuretic because they said he is not getting rid of fluid as fast as they would like him to. He has had a little bleeding from the jp but nothing to be concerned about. They would like up do his dressing change surgery wed or thurs. they would prefer to do that off ECMO but if hey have to do it on ECMO they will. Our poor baby has at least 3 more surgeries to go and has had 5 already but he is such a little trooper. The doctors aren't sure when they want to close up his rt chest from his lung surgery or when they want to do his hernia repair. I guess one day at a time...lol. That is all the current news I have so thank you again and again!!!