Wednesday, July 27, 2011

Medical Supplies all Organized!

Well, Owen has been home with his picc line and TPN for almost 3 weeks now. We are finally getting back to living semi-normal lives. We have all of the supplies all organized, his home health visits worked out, and we are getting to know the new supply company. We now have two medical supply companies. Option 1 Nutrition delivers all of Owen's equipment needed for his g-tube and formula feedings. We get formula, g-tube, g-tube extensions, formula bags, and a couple medications that are put into his feeds. We get these deliveries once a month and are used to them.
The TPN supplies is delivered once a week - every friday. We get 3 boxes each week.
Here are the contents of the boxes:

We get 7 bags of TPN, 7 batteries for the pump, a new pump each week for the changes they make according to the labs taken each week, 10 syringes with needles, 10 needles, 15 saline flushes, 8 heparine locks,7 lines to connect the TPN, alcohol preps, gloves, 7 days worth of ranitidine, and 7 days worth of multivitamin.

Here is all the supplies organized in our back bathroom! We transformed our back bathroom into a medical supply room lol. The top shelf has boxes of formula, extra chucks, formula bags, and farrel valve bags. The second shelf has boxes filled with g-tube extrentions, gauze, button covers, saline bottles, extra syringes, all dressing change supplies for the picc line, a sharps container, biopatches, line extenders, caps, picc covers for Owen's arm, and hubs. The third shelf has boxes filled with extra sterile gloves, heparin locks, saline flushes, picc tubes, 10ml syringes with needles, and blood tubes for blood draws. On the left of the refrigerator there is a trash can for easy clean up :) On top of the refrigerator is a box of all of Owen's medications he takes up to 4 times a day. Inside the refrigerator there are the TPN bags, multivitamin, ranitidine, and the rest of his meds that need to be refrigerated.

This is the shelf next to Owen's bed. On the top shelf we keep gloves, alcohol preps, batteries for the tpn pump, and the tpn pump. On the second shelf we keep wipes, diapers, and bathing wipes for the many mornings he wakes up with a poopy bed. The third shelf is where we keep his oxygen pump (used for giving him the steroid (pulmicort) for his lungs each night). The bottom of this shelf unit is more shelves with a door. We keep his extra g-tubes, albuterol, and pulmicort (two medications) there. Not pictured is his IV pole. We keep it next to his bed and put his feeding pump and tpn pump there each night.

We are so happy to finally have everything organized. I am getting more comfortable with all of the changes.

A little story in the life of a mom with a baby with a picc line:
I have learned that I don't really trust our home health nurse. So, I told her that I would prefer to do Owen's picc dressing changes each week (they come every tuesday morning to do the dressing change and blood draws). She still comes to help because I need someone to hold Owen down while I change the dressing. Well, yesterday was tuesday and the nurse came to change his dressing. It went very well and I am getting more comfortable with the dressing changes. Later last night my mom and I were cleaning out the cabinets in the kitchen because they are being redone. Owen was sitting in his high chair. My mom looks over at him and sees him pulling OFF his dressing!!!! It was so scary! If we didn't catch him, he could have pulled out his picc line! NOT GOOD! My mom and I ended up having to change his dressing all over again.
2 dressing changes in 1 day = no fun for mommy!!!

Thursday, July 14, 2011

Isaiah Walking

Just thought I would share a quick video of Isaiah walking. This video was sent to me while I was in the hospital with Owen. When I saw this, I hadn't seen him walk in person yet. He is such a cutie!

Owen's Hair Cut

When Owen got home from the hospital, we decided it was time to give him a haircut. I didn't really want to cut his hair but, because he can only have a real bath once a week due to the picc line, we decided to cut it. He sweats a lot at night and the smell just stays in his hair. I just thought I would share a few pics of his new hairdo

 The before picture

Daddy just had to do this :) 

 The cut begins

He's not so sure about this 

He is so excited about the bag of his hair lol 

 cutting the back

The final product 


Thursday, July 7, 2011

A New Stage

The time has come

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.