A New Stage

The time has come

TPN

Owen has been in the hospital since June 16th. He was admitted because he threw up poop and then pooped blood. I thought, another round. He seems to have an episode like this every couple months. We are in the hospital for a couple weeks - giving his tummy a rest and then re-starting his feeds. Well, this visit was different. The 16th was a thursday. By monday Owen was showing us that he was sick. He had a fever and was not acting like himself at all. They did some blood tests and found that he had an infection. Gram negative rods - specifically - Serratia Marcescens. His particular infection was drug resistant. They were worried they would not find a drug to fight it. Monday night Owen scared us all when he turned septic. It was late in the night when they noticed that his temperature was just getting lower and lower. Then his heart rate dropped into the 50s. Many docs came into the room and that is when I woke up. Owen way lying there, unresponsive to anything they were doing to him. I jumped up and they told me what was going on. They did all kinds of tests. It felt like forever, but about 4hours later Owen finally woke up and started crying. It is the best feeling when your baby cries after being unresponsive. I was so scared for him. He was clearly septic and the antibiotics were not working to kick the infection. The infecitious desease doctors were working hard to find a drug that the infection was not resistant to. Tuesday he started to look better. However, he didn't have his first negative blood culture until Friday. It took the drugs a week to kick the infection which is longer than normal. Finally, he was clear for infection.

By the following Monday, Owen had 3negative blood cultures and they were able to place a picc line. Thank God! Throughout the week he had to get blood drawn twice a day, and IVs were not even lasting 24hours. In one week he had to get 8 IVs. Each one was hard to get and many of them they had to poke him at least 5 times before getting a good enough vein. Not something you want to see him go through. I was so thankful for Monday, when he finally was able to get a picc line. It was basically smooth sailing once the picc line was placed. However, Owen was still having low temps each night. He was on a blanket warmer but even that wasn't very helpful. The doctors just couldn't figure it out. A few days after the picc line was placed he stopped having low temps at night. I think the low temps were his bodys way of telling us that he needed nutrition to be able to keep fighting. I believe the doctors agree.

It has now been a week and 3 days since they have placed the picc line and we are going home! I previously blogged about TPN and a central line. Although at our last doctors meeting it was ruled out, it is now the only option they believe will help Owen thrive. After reviewing his chart, they found that he really hasn't gained weight in 6months. Because of this stand still, he continues to get sick. He simply does not have the strength to fight off sickness because he is trying to sustain himself and working hard to absorb what he needs to live. With TPN he will be able to gain weight and have that reserve he needs to fight. Like I said in my earlier post, I am extremely nervous to have TPN at home. It means a lot of work for me that I am frankly scared to do. I am afraid that I will mess something up and, in turn, hurt him.

While we have been in the hospital, Heath has been preparing the house for this new stage in Owen's life. He has transformed the back bathroom in our house into a sterile, TPN and medication room. This is where we will prepare the TPN, the lines, and the medications for Owen each night. We will have all our sterile equipment in this room. He has placed a refrigerator to house the TPN. Luckily I still had my small refrigerator from college in the garage. Once I get home and everything is organized I will post some pictures up of what it looks like. I will also blog again once I know how the routine will go and let you know once I am getting the hang of it. For now, please pray that this is a smooth transition with few stressfull times.

I have to say, through this hurdle in life, I have come to love my husband even more. Together we are able to keep it simple, take life day to day, and trust that God has his hand in our lives, in our marriage, and in our children. Yes, we have our days of worry. We have our days of doubt. When all is said and done, we do it together, and we strive to trust God in everything. I am so thankful that I have Heath in my life and I am thankful for the way we work together to get through the worst of times. I know that God gave us Owen for a reason and I pray that we, even through the worst of times, look to Him for strength and guidance.

Thank you all for your thought, prayers, and encouragement through the good and the bad.