Doesn’t it always seem like it is the small things we get caught up on in life? How often have you heard the phrase “don’t sweat the small stuff.” Well since Thursday I have probably drove the nurses crazy because I have definitely been sweating the small stuff. Let’s start with Friday… Friday was not too bad, probably better than I expected. Madi seemed pretty stable. She is very swollen from all the extra fluid she has on board. Basically with the ECMO pump she has her normal volume of blood in her body at any given time, and the same amount in the cannulas taking the blood to the machine. This way there is a constant circulation of the blood between the oxygenated and unoxygenated blood ( I am learning way more medical terms, facts, and process’ then I ever cared to) She didn’t seem to have anything too unexpected happen during the day shift on Friday. Then comes Friday night, her O2 levels were hanging pretty low, mainly in the 60’s. We would like to see her in the 90-100 range. Then the nurses moved her pulse ox, (this measures the oxygen in her blood) to her right hand. It read 100% but every other leg or arm was hanging in the 60-70’s. Why they believe this is happening is because the type of ECMO she is on. Originally they wanted to put her on VV ECMO, this would only provide support for her lungs. Unfortunately, they could not get the size cannulas and flow they needed to maintain her oxygen supply because the size of her vessels. So she then was converted to VA ECMO, this is the kind that normally works for your heart as well and goes in an artery. The problem with this is Madi’s heart is perfect… Praise the Lord. But it is somewhat working against the pump. Good news is, her right arm and brain are getting the 100% oxygen, so that is where we need it to go. Her kidneys are producing “like a champ” as the nurses say and she is still getting plenty of oxygen everywhere else. So a little bit of fun on Friday night debating all the scenarios with this. The main thing that seemed to go along with this issue is that when her heart rate is elevated or her blood pressure, it decreases her oxygen. So they have her very heavily sedated so these two things are not elevated. We slid through Friday night and right into Saturday morning. Pretty much the same going on, O2 was low, blood pressure and heartrate was high so we tried all day to manage those. They tried a new drug and that seemed to be some helpful so by Saturday night I was feeling pretty good about everything and a little more relaxed. Then comes the “small stuff” but big to me at the time. I think I probably drove the nurses and respiratory therapist crazy last night. Madi has 2 drains in her neck area, one is deep in the muscle and one is shallow. She had the same drains last surgery and they never produced anything. The big difference with this surgery is the ECMO, which means she is on a hefty dose of blood thinner to keep her from clotting with all the exchanging of blood. So at first we noticed a little bit of drainage around the tube sites, so we were just watching. Then not to much later, her neck looked pretty puffy. Then this progressed into a little more puffy and a large circle of blood under her head and back and sheets. Cue normal mom’s reaction to anything bigger than a small paper cut, I was a bit nervous. Hence, the driving the nurses crazy kicked in. We also noticed at this time some bloody looking drainage from the g-tube in her belly. All this together, on top of everything else made me feel like I was having a “I’m going crazy” moment. Thankfully, we honestly have the BEST nurses and staff in the world and they kicked in to solve the problems. What we discovered is that the drainage tubes had clotted so the blood was collecting in her neck region, as well as coming out of the drain sites. We were able to get this problem solved and got a significant amount of blood out, immediately getting rid of the bulge in her neck. Shew, no surgery or intervention really needed. Her g-tube drainage was rinsed out so we could see if that was clotted as well. Praise the Lord it changed back to regular stomach content and has been ok today. So today I have been much more relaxed, well or tried to be. We only slept about 2 hours last night, if that, so we are wore out to say the least. Today, Madi’s oxygen levels have been much better and all her other levels have been tolerable. She is getting blood at least everyday and different medicine increases but today has been pretty uneventful. She is still draining and bleeding from her drainage tubes in her neck, which will hopefully resolve after she is off the blood thinner. So I have definitely sweated the small stuff. I’m sure by now I should have learned, if the nurses aren’t concerned I shouldn’t be, but it is just strange to see so much blood from different areas. Keep praying Madi will continue to stay stable until Thursday when we will check her healing. Prayerfully she does not have any complications from the ECMO, there are very many that can occur so she is under a very careful watch. It is very hard for us to see her this way and know that so much can go wrong, so we are trusting the Lord to keep his hand on her. Everyone’s prayers are vital for her during this time. It is so hard to relay what she looks like or what all is going on. It is truly a “you have to see it and experience it to understand”. We are thankful it has not been even more crazy! I know the Lord must be teaching me patience, and to “not sweat the small stuff” I just have to give it over to Him and let Him have full control!

– Megan