Crew's Port

You may remember a while back, in December, that I posted about Crew's Port Surgery. I told you all about what a port was and why we were getting one for Crew.

Well, now we have been accessing Crew's port for over 3 months, 3 times a week and I wanted to show you what that really entails. So, my lovely mother stepped in to help me out.

It takes both Steve and I to administer Crew's factor. So, in order to take pictures of the whole procedure I needed my mom to hold Crew so I could be behind the camera. Thanks mom!

I am going to warn you now... If you don't like hospital stuff, or needles, or anything like that, you may want to stop reading, or looking, now. This is pretty graphic in that area. Otherwise, you will probably find this pretty interesting. I will tell you that I will not be offended if you can't stomach this stuff. As of 1 year ago, I couldn't either. So I get it. It's kind of amazing what you can do when you really have to. And this is proof.

So I am going to explain the whole process here for you. I want to start off by giving you a little background on Steve and I before you see what we are doing here in our home on a regular basis.

We'll start with me:

I have a little brother, and when I say little I mean a 26 year old who is 6'6 inches tall and two hundred plus pounds, so not so little I guess. Let's say younger than me brother. He was born with Hemophilia. I spent a majority of my childhood in hospital waiting rooms, with my grandparents, or at a neighbors house while my brother was getting infusions of his medicine. That was until my mom learned how to give it to him herself and then I got to be at home while Sky was getting his infusions. So needles and other medical tools were a big part of my life and all over my house. You would think that because of this I would be able to watch or do just about anything medical related but this isn't farther from the truth. I take after my dad. We both head for the nearest door when something like this is about to take place. I just can't watch. I hate seeing it done on someone else just about as much as I hate it being done on me. I don't think I had actually sat and watched my brother get a shot one time. I always had other things to keep my attention. Sure, I grabbed things my mom might need like an alcohol swab or syringe, but then I was gone. I have always sworn that I would never poke my child if he had Hemophilia, someone would have to do that for me. I don't care how many hospitals we had to go to, I wasn't going to do it. Now I have one...

And now Steve's story:

Steve can't handle anything medical. Steve would walk into a hospital and pass out. Much like his father, from what I have heard. So he avoided them like the plague. His best friend had a baby while we were dating about five years ago and Steve went to visit them at the hospital and the minute he walked in he had to sit down. I do think he eventually made it to the room, but only lasted a few minutes before he bailed. He says it's something about the smell. When I was pregnant with our first baby, Reagan, my blood work came back that I was O negative and they needed to know immediately what Steve's blood type was because I might need some special medicine if he had a positive blood type. He wasn't sure what his blood type was so we had to go into my doctors office to have his blood drawn. He acted like it wasn't going to be a big deal, but I was very nervous. I knew his history, and it wasn't good. We got into the lab and the gal was able to get a vein on the first poke, which wasn't a surprise (have you seen Steve's veins?). The lab tech began to draw his blood and we were chatting as she went. Suddenly she grabbed Steve and asked if he was feeling alright. I looked at him and he was completely white. She hurried and got the needle out of his arm as he slumped to the ground. He totally passed out. He had to lay on the ground, sipping some sprite, as she poked him again and finished the blood draw. I knew then that if we ever had a Hemophiliac that poor child would be stuck with some pretty yellow bellied parents. We just aren't good with this stuff.

Fast forward 3 1/2 years...

This is Steve, my mom and Crew. Crew is getting factor and I am taking pictures. This is what happens at our house 3 times a week.

The first thing we do when we are getting ready for his shot is get some tegaderm tape, put on some numbing cream, and put the tape over the spot where Crew's port is on his chest. That has to stay on for 30 minutes before we poke him. In the mean time we get everything ready...

We mix the factor

We set up our sterile field

We open the different solutions that we will be using

We make sure everything is ready to go

When it is time we put on Crew's "Cape". This is a pillowcase that we call his cape so that his arms are immobile so that he can't pull the needle out.

Crew is awesome. He usually just jumps up on our lap and puts his arms in. Usually when we say it's time for his medicine he lifts up his shirt to help us out. He is such a stud!

Then we take off the tape and the cream. You can barely see the tape on there, but if you look close you can see that it is holding the cream on there.

This is a close-up of his port. It is really red here. His skin gets pretty irritated with all of the creams and cleaning solutions that we put on there. You can also see a bunch of little red dots where we have poked him before.

My mom has just wiped off the cream and we are getting ready for Steve to start.

Steve puts on his rubber gloves.

Now, Steve is cleaning the area with alcohol swabsticks.

Next he cleans with the triangle sponge thing that I can't remember the name of right now.

Once the area is all clean it is time for the poke. Steve is getting the Saline solution hooked to the needle before he pokes Crew, making sure the saline is through the line.

Before the poke Steve is feeling for the port. He holds onto it with two fingers and makes sure he knows right where the middle is. He has to hold it in place so it doesn't move when he pokes it with the needle. It can move around a little bit.

Once he is ready and the port is steady, he pokes the needle into the port. Notice Crew's mouth in this picture... He is totally calm. He really is a champ!

Once the needle is in we have to draw back with the syringe to make sure we have it in there correctly, and if we do then we put in the full syringe of Saline solution.

After the Saline is completely in we unscrew the syringe and screw in the syringe with the factor. We make sure that all of the factor goes into the port. Crew has become really interested in what we are doing. We always do it with a movie on and he usually watches that. But lately, he has started watching the routine of his port more and more.

After the factor is done, we move to more Saline. This flushes the line to make sure that the factor isn't sitting in the tubes and is fully into his system.

Look at that face! Oh, I don't know how he does this, and it doesn't even seem to faze him.

After the Saline we move on to the Heprin. This is the last thing we put in the line. It stays in the line and keeps it from clotting up. I can't imagine how this would happen considering that his problem is that he doesn't clot, but the doctors seem to think this is very important, and they know best.

Now we are all done giving him the gazillion different solutions and it is time to "de-access" his port. So Steve grabs ahold of the port to hold it down while he pulls out the needle. Look at his face again... I think this is the worst part for him. I don't think he can feel any pain but I think he can feel it pull on his skin and I'm sure that is weird.

And then we are all done! When I lay it out like this I am seriously wondering about my sanity. I can't believe how far we have come in such a short time. I can't believe how far STEVE has come! I am so lucky to have married such a great man. There is no way I could do this without him and he makes it a breeze.

And then there is Crew. I am such a lucky mom. If you know Crew, you know that he is on the GO! He doesn't walk anywhere, he RUNS! This kid doesn't slow down, it's just not his nature. But when we say it's time for medicine, he walks over and puts on his cape and stays still throughout the whole process. Kind of a miracle. Actually, a huge miracle. Crew is so sweet and patient as we poke and hurt him. I love him so much and look up to my little 2 year old. He is teaching me major resilience. He constantly amazes me. I LOVE THIS KID SO MUCH! I wish we didn't have to do this to him, but am so grateful we have a way to keep him healthy. Seriously, how lucky am I?

Now you know what is happening at our house. I am actually getting so much better with this stuff, which is also a miracle. I get a little bit better every time I talk about it, so it helps to write it down like this. I hope you have enjoyed your little glimps into our hospital!