Friday, November 26

Walker has had a tough couple of days, again. When I got to the hospital this morning, they were in the middle of trying to get him back up from one of his spells where his oxygen levels and heart rate had dropped quite low. The nurse told me that he had gotten worse over night and that his dsats were happening more often and in clusters. They removed quite a large blood clot from his nose and were trying to keep his replogle clear. They ended up putting him on low flow oxygen (the oxygen prongs that go in your nose) to try to keep his levels higher. They also ran all his blood work and did an infection work-up to check for infection, and they started him on two different antibiotics until all his test results come back and they can rule out a bacterial infection. His chest x-ray showed some fluid in his lungs, but the doctor said it wasn’t worse than it had been on his previous x-ray.

The tricky thing with Walker’s condition is that he is struggling to get enough oxygen at times but because of his specific heart defect, if he gets too much oxygen it will cause fluid to build up in his lungs. The cardiologists have ordered that he get the very least amount of oxygen as necessary to keep his saturations at a safe level. I was worried all day about the oxygen prongs in his nose, thinking that they were going to cause him to get too much oxygen and thus cause fluid to build up in his lungs. I mentioned this to Walker’s day nurse and the doctor, but they said that they were going to keep him on the low flow oxygen for 24 hours. In the evening when Walker’s night nurse, who knows him and his condition very well, came in, one of the first things she did was call the doctor and ask permission to wean his oxygen. She has really encouraged me to advocate for Walker and trust my instincts as his mom, and she said I was right to be concerned about him being on the low flow oxygen all day. I am so thankful she is with him tonight. God puts the right people in our lives at just the right time. Another reminder that He has got this all in His hands.

When these setbacks happen for Walker and there is no exact explanation for what is happening and why, I struggle with feeling like I somehow got him sick. It is cold season and we have two other little ones that pretty much constantly have a snotty nose. I worry that I am somehow going to pass those germs on to him. I am very run-down and tired, so I have days where I don’t feel totally myself and question if I am sick or not and if I should go see Walker or stay home. My mind constantly battles between whether it is better for Walker if I am there with him or if I stay away just in case I might actually be sick and pass something on to him. My hands bleed at times from washing and sanitizing them so often. When I am with Walker, I try not to touch his hands or mouth and try not to breathe too closely too his face. It is mentally exhausting and is something I wish I didn’t have on my mind. When I struggle with this, I have a very steady and faithful husband who reminds me that Walker is in God’s hands, not mine. That I need to stop trying to control things that are out of my control. I am doing my best to surrender these fears to God and trust that He will protect Walker.

Please pray for quick and positive results from all of the tests they ran on Walker today. Pray there will not be any serious infection in his body. Pray that his oxygen saturations will become more stable.

Please pray that Walker’s body will get a bit of a break. He is tired from fighting so hard and needs a few good days with no replogle and oxygen issues so that he can rest.

Please pray for protection for Jordynn, Easton, Andrew and I from any illnesses. Pray that we will all be healthy so that I can visit Walker with peace of mind. Pray that I will be able to give my anxiety about this to God and trust that He will take care of it.

Thank you all for your encouragement, prayers, and acts of service. So many people have blessed us in the last few weeks in ways that might feel small to them but have felt very big to us. You have helped carry some of the burden of this for us. We thank God for you.

(He has an IV in his hand now for the antibiotics he is getting)

(In this picture you can see the machine that they use to feed Walker his milk through his G-tube)

(In this picture he has in IV in his foot, which is what they used to give him his blood transfusion earlier this week)

(In this picture you can see the attachment for his G-tube and the adorable booties his Auntie Marissa made for him)