Today is Dan's first day back at work, so I will be hanging out with Linc at the hospital by myself. At least Dan doesn't work very far away, so he was able to come with me to the hospital this morning to see Linc and he can visit after work too. (We had perfect timing this morning, as Linc had just woken up when we arrived.) It is also comforting to know I can call him anytime to come up during the day if anything should happen to Linc. Of course, the rest of our family and friends are close for support too, so I don't have to fear being alone.
Today is Lincoln's 6th day on ECMO. The past days have been filled with little news and not much change in Linc's condition. The docs have just been keeping Linc comfortable, and helping him pee out the extra fluid his body accumulated from being put on ECMO. Even though the docs have had to increase his flow on the machine to keep his stats up, he has been doing well with his urination, and today his morning x-ray showed signs of improvement! There is slightly less fluid in his left lung and his diaphragm line is visible. Wonderful news after 5 days of no change! His fluid between his body wall and chest is reduced as well! Having extra fluid in his body wall makes it harder to breath because it's like having a weight on his chest, so the less fluid, the easier it will be for him to take a breath. He is taking baby steps in the right direction. We are so proud of him! We know how hard this is for him, but he is a strong little boy and we are here for him!
Monday, June 6, 2011
Saturday, June 4, 2011
Friday, June 3, 2011
Waiting Game
Today starts the fourth day Linc has been on ECMO. The machine is oxygenating and pumping his blood for him so that, hopefully, his pulmonary hypertension will subside. Today the docs tried to wean his flow rate on the machine a little, and Linc's vitals suffered a bit. So they went back up to the original rate. It seems like he is not too fond of fast changes, but that's ok. We just want him to be able to come off sometime. We don't need to rush him at this point.
One of the side effects of ECMO is edema. Linc is slowly getting more swollen everyday. His kidneys also are not getting the natural signal from his heart to trigger urine production, so the docs are giving him something to help him pee, which has been working but he still looks puffy. Even though he looks uncomfortable, we know he isn't feeling pain.
It has been bitter sweet having him on ECMO. We know that he is very ill, but we love the fact that we can interact with him now. I have been able to change three more diapers so far. Two of which were poopy! (I never thought I would be so happy to change a poopy diaper!) Knowing he hears and sees us is a wonderful feeling. For now, it is mostly a waiting game. The docs will make small tweaks, but overall we are waiting for Linc's daily x-ray of his lungs to clear. That will be the sign the docs look for to let them know Linc is ready to wean and start doing more of the work himself. In the mean time, we are trying to rest more ourselves and enjoying being with our son.
One of the side effects of ECMO is edema. Linc is slowly getting more swollen everyday. His kidneys also are not getting the natural signal from his heart to trigger urine production, so the docs are giving him something to help him pee, which has been working but he still looks puffy. Even though he looks uncomfortable, we know he isn't feeling pain.
It has been bitter sweet having him on ECMO. We know that he is very ill, but we love the fact that we can interact with him now. I have been able to change three more diapers so far. Two of which were poopy! (I never thought I would be so happy to change a poopy diaper!) Knowing he hears and sees us is a wonderful feeling. For now, it is mostly a waiting game. The docs will make small tweaks, but overall we are waiting for Linc's daily x-ray of his lungs to clear. That will be the sign the docs look for to let them know Linc is ready to wean and start doing more of the work himself. In the mean time, we are trying to rest more ourselves and enjoying being with our son.
Thursday, June 2, 2011
Pictures of Lincoln!!!
Here are a few pictures, as promised!
After Lincoln was put on ECMO, he no longer needed to be so heavily medicated and sedated, with minimal stimulation. Dan and I were finally able to touch our baby after 5 long days!
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| First night |
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| Linc has Daddy's big feet and long toes! |
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| Ear muffs and a cloth over Linc's face keeps him calm so he can rest. We were not able to touch Linc at this point, but we could stare at him for hours! |
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| Linc was moved after his first night in the NICU to his own private room! |
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| Daddy putting socks on! |
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| So cute! |
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| Tiny hands! |
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| Sleeping with his new frog from cousin Layla! So precious! |
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| After reducing some sedation meds, Linc was able to wake up and see us! He has beautiful eyes! |
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| Mommy and Daddy's first real chance to interact with Linc! (Day 7) |
Wednesday, June 1, 2011
extracorporeal membrane oxygenation (ECMO)
Yesterday afternoon around 3:30 we met with Lincoln's doctors and surgeons. They told us that Lincolns progress had slowed down to the point that ECMO was recommended. ECMO is a heart-lung bypass machine that oxygenates and pumps the blood for the baby so that they can rest. They told us that without ECMO, survival was around 10%. Babies on ECMO have a survival rate of 55-60%. It was an easy decision, but difficult to make. ECMO can cause other problems not related to the CDH. In order for the machine to function properly, Lincoln will have to remain on blood thinners. Clotting is a real danger with this much equipment. The problem with blood thinners is the risk of internal bleeding, and stroke. Ultrasounds of the head are performed regularly to make sure the brain isn't bleeding.
The surgery lasted about an hour and a half. A nurse came back to give us updates as the surgery went on. After it's completetion the lead surgeon came in to tell us that everything went well. After they cleaned Lincoln's room up we were allowed to visit. It was pretty crazy seeing him afterwards. We were used to seeing him attached to tubes from his medicines and ventilator, but now there are much larger tubes full of bright red blood. The lines extend from his neck down to the ECMO machine. It's a lot to take in. I guess before ECMO I thought Lincoln is alive, he just needs some help from all of this stuff. After ECMO I just look at all of this stuff and think, this is what is keeping my baby alive. It's rough.
He hasn't been on ECMO for 24 hours yet, but he seems to be doing ok. The one plus side to ECMO is the fact that we can finally touch him and talk to him. We saw his ears for the first time yesterday. They aren't afraid of him getting too much stimulation since the machine is taking care of most of the work for him. I had a chance to put socks on him this morning, he still put up a fight.
The surgery lasted about an hour and a half. A nurse came back to give us updates as the surgery went on. After it's completetion the lead surgeon came in to tell us that everything went well. After they cleaned Lincoln's room up we were allowed to visit. It was pretty crazy seeing him afterwards. We were used to seeing him attached to tubes from his medicines and ventilator, but now there are much larger tubes full of bright red blood. The lines extend from his neck down to the ECMO machine. It's a lot to take in. I guess before ECMO I thought Lincoln is alive, he just needs some help from all of this stuff. After ECMO I just look at all of this stuff and think, this is what is keeping my baby alive. It's rough.
He hasn't been on ECMO for 24 hours yet, but he seems to be doing ok. The one plus side to ECMO is the fact that we can finally touch him and talk to him. We saw his ears for the first time yesterday. They aren't afraid of him getting too much stimulation since the machine is taking care of most of the work for him. I had a chance to put socks on him this morning, he still put up a fight.
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