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!!!

Thank you!!!

I would just like to say thank you to everyone that has been following Aidens story. Thank you for all the prayers and support. We have had more support than I ever could of imagined so thank you!!! You guys are awesome!!! Thank you to everyone who has donated items and money for the fundraiser!!! And a special shout out to my family that has been extra supportive during this difficult time!!!

I LOVE good days!!!

Aiden is officially back on ECMO 100% and his vent setting is almost all the way down to resting setting. As for the bleeding...virtually none!!!!!! He has had a little bleeding which is ok. We just don't want too much bleeding. He has recieved very little blood products and he was started on a diuretic so some of his puffiness should subside. He has good urine output and has beef pooping...lol. So we hope that his bleeding stays under control and that he can come off ECMO very very soon!!

Waiting

Aidens ECMO is on the lowest setting and his vent is on the highest setting but ECMO can't stay this low for long. He is doing ok right now. The bleeding had slowed down. Eventually they will raise ECMO and hope he doesnt start to bleed again. If he does they will have to remove ECMO all together and then his survival rate will drop. He will then have to rely on the vent alone which blew his good lung when they tried him on the vent alone the day he was born. Let's pray that his repaired lung will hold out for him. Let's pray that his numbers stay good and the bleeding stops and when his ECMO is raised that he doesnt start to bleed. Let's pray that he doesnt need blood products or volume. Thank you all again!!!

More prayers please!!!

Aiden's chest won't stop bleeding. They are giving him a medication to try and stop it from bleeding. If he doesn't stop bleeding by 6:00 they will have no choice but to go in again to try and stop it. Please pray that this medication works for him. He has already been so much and our little guy needs a break. Thank you

Another surgery

Last night Aiden had his dressing changed and they decided to stitch it up and out in two chest tubes. Well this morning we got a call from the nicu telling us that there is too much blood draining so they have to go back in to see what is bleeding. So right now Aiden is in surgery again. This time they will pack the wound and leave it open so they can see what is going on. So let's pray that they find the bleeding and they can stop it. That he needs very little blood and fluids. That his vitals stay normal

Dressing change

Right now the surgeons are changing Aidens surgical dressing where they fixed the hole in his lung. This procedure is considered a surgery. They are goi g in to see if the lung is still bleeding. If it isn't they will try to stitch the site up. If its bleeding they will pack it and redress it. This procedure poses a risk for bleeding. So let's pray that the lung has stopped bleeding, that the site can be stitched up, his vitals stay ok, that minimum fluids and blood need to be given and that he doesn't start bleeding from the procedure. Thank you again for all the prayers and support!!!

Baby steps

Aiden is only bleeding from the incision site right now. They said that he is bleeding significantly less than what he was. Once he can form a clot at that site and recover from all the blood loss his blood pressure should stabilize. Then they can stop giving him so much fluids and start him on lasix for the swelling. That is the goal for the next couple of days. Please pray that Aiden will stop bleeding and maintain his blood pressure ob his own so he can be one step closer to coming off ECMO. Thank you very much!!!

Prayers please!!!!

Aiden has had some bleeding the past couple of days. This morning we got a phone call from the NICU saying that they can't control the bleeding and they will have to do exploratory surgery to find out where it is. He is on ECMO so he already runs the risk of bleeding so doing this surgery could of caused him to bleed out. He was bleeding from his "good" lung and some muscle as well. They stitched him up and now we are waiting to see if the surgery actually worked or not. He still has some bleeding and has received a lot of blood products. They are afraid that if they can't get this bleeding under control we will lose him. So I am asking you to pray for baby Aiden. Pray that the bleeding will stop and that his vitals will stay stable and for him to be well enough to come off ECMO. Thank you so much!!!

Update on new plan

Well Unfortunatly decreasing his fluids made his blood pressure drop, decreased his urine and made ECMO circuit out. So they are having to give him more fluids again. He is still on albumin every 12 hrs. Today they are going to try and wake him up a little bit more. We are praying that it doesn't effect his blood pressure or urine output. He also had a chest x ray today and they didn't see any air in the lung with the hole so that is a good sign that it is healing.Eceryonr please pray that the doctors are headed in the right direction for Aiden's recovery. Let's pray that decreasing his paralytic doesn't effect his urine or blood pressure. Thank you all for supporting us:)

The next plan of action

Aiden has had a lot of swelling since he has been of ECMO. So the new plan of action is to give him albumin, decrease the fluids they are giving him(they had to give him fluids to keep his blood pressure up but they are going to except lower pressure now cause he does fine with it lower) and they are going to decrease his paralytic so he can have very tiny movements in hopes that these three things will bring the swelling down. Auntie Nay got to see his first movement. Now how fair is that...lol. We are going to see Aiden then we are going to pick up the keys to the Ronald McDonald house. Then we are going to go home and see the girls and pack some more stuff before we come back out here.

It's a boy!!!!

Aiden Robert Grant has made his grand entrance into the world. 5lbs 8oz, 19.86 inches. Born at 10:34am. His left lung is not functioning at all. His right lung has a hole in it. His is on ECMO right now. They will try to take him off in about 10 days. If they can't he will have his surgery while on it. He is in a medical coma because with him moving around his SATS were dropping. He coded yesterday during a chest x ray from him moving too much. Today josh went and saw him and he is stable and doing ok. Please continue praying for our little boy!!!