The Winter Crud

Tim is lost. Wandering around this huge hospital campus looking for Camden’s room. How did we get here? Back at the hospital waiting anxiously for doctors? Cam got the crud to say it simply. Friday night he started throwing up. Saturday he was cranky, congested and throwing up. Sunday he was in better spirits but very congested, coughing and gagging a bunch. Normal baby stuff but Cam’s dialysis was taking off more fluid than usual and he wasn’t drinking as much. We were watching his blood pressure, heart rate and weight very closely and managing his fluids. Yesterday was very stressful. Cam didn’t want to nurse and he was throwing up mucus. Last night he really started working hard to breathe. And here we are. Back at the hospital. Waiting on doctors. Waiting for lab results. They suctioned him, and he tested positive for RSV. He’s sleeping now. Poor guy was exhausted after a tough night of breathing, being suctioned and then having blood drawn. We’re waiting to see what is the next step. Good news though, Tim found us and he has coffee.

What Dialysis Looks Like for Us (Or Our Set Up)

I’ve had a lot of questions regarding what the dialysis process looks like for Camden, so here it is. Pictures of our room and how it’s all set up:

About Camden

My previous posts have been mostly about Camden’s medical status or about where I am coming from…I want to share a little bit about Camden, about what an amazing little boy he is. Right now, he is closing in on 9 months old! Can you believe it? I know I can’t. It just goes to fast. It’s bittersweet really. One day closer to transplant, one day further from the sweet smelling baby I cuddled in my arms. Camden is a happy little dude. He loves his sisters. He loves to play peek-a-boo with a blanket. He is starting to love food much to the disbelief of his medical team. He sits up with confidence at this point and is even working on crawling. He loves to stand and hold onto the bars at the top of the stairs and if anyone comes up the stairs he laughs and laughs. Cam got a wagon/walker for Christmas and he really loves to go for rides around the house. He loves toys that make noise and if it doesn’t make noise, you can be sure he’s banging it against something just to see if it will make noise. He’s an awesome little guy. Camden is so determined not to be held down by dialysis and all the complications that come with it. He has a big personality and a smile that can melt whoever receives it. He’s becoming very vocal about life…when one of his sisters has a toy he wants, he tries to grab it and when they won’t let him have it, he yells and grunts at them. He has this awesome chuckle, a belly laugh really, that I just cannot get enough of. Despite all of it, this little boy rocks my world. He puts it all in perspective. To laugh and to love life, in the face of it all…he reminds me every day to be more like him…

Giving Thanks

As I sit here cradling my sleeping son with the buzz of family and the clinking of cooking utensils, I am mindful of what a blessing his life is to me. Lately, I have been thinking about how thankful I am for the medical technology that saved my son’s life and that continues to keep him alive every single day. Camden’s life and struggle has recalled to me the importance of love, family and community. As I sit here in a quiet corner of my home I can hear my dad reading bible passages to my girls; I can hear my mom and my husband discussing the finer points of how to get an accurate temperature on the turkey; I can hear my grandma asking what she can do or if she should just get out of the way; I can hear Camden’s breathing and feel the warmth of his little body. I close my eyes and imagine the horror of what could have been. But I open them and realize how blessed I am for what it is. Today I am thankful for medical technology and the gift of my son’s life.
Happy Thanksgiving!

The Routine

It wasn’t that long ago that the thought of my daily routine was completely overwhelming. Just imagining it, would nearly send me reeling. How was I going to do it? How was I going to manage it all? Well, I can tell you, I just did. With a lot of love and support and help, I move forward one day at a time. While it’s stressful and challenging and exhausting at times, it’s also very rewarding and I try hard not to forget the gift right in front of me: my children.
Camden’s daily routine goes a little something like this:
We wake up in the morning and take him off his continuous feed and his cycler. We put on masks and prepare the room and gather supplies. We scrub our hands and then scrub Cam’s transfer set. Then we disconnect the tubes from his dialysis cycler and cap his transfer set.
Later in the morning, I take his blood pressure and get his weight. Then he needs a bath, and I clean his dialysis site and his feeding tube. I dress and tape his catheter (he is highly susceptible to infection through the place where his dialysis tube enters his peritoneal cavity).
In the late afternoon, I once again take his weight and blood pressure. That helps me determine what strength of dialysate to use that evening, whether he needs more or less fluid taken off. Then I gather his supplies and set up his machine. Feeding bag. Cassette. 5 liter bag of dialysate. Drain bag. I put on a mask and scrub my hands. Then I connect the tubing and hit go. The machine preps itself.
After dinner, we mix his food for the evening. It’s a combination of breastmilk, electrolytes, protein and a vitamin.
When Cam is ready to go to bed, we bring him upstairs and put his jammies on, change his diaper. Prep and connect his Gtube extension. Then we gather supplies and prepare the room. We put on masks and connect his feeding tube. Scrub up and scrub his transfer set, then connect his dialysis tubing. That is always the scary part, another point where Cam is frighteningly susceptible to infection. We watch his initial drain for any sign of cloudiness, because that means infection, and then get his meds drawn up to out through his Gtube. At this point, we can snuggle him to sleep if he hasn’t already crashed. The cycler takes over from here. Drain. Fill. Dwell. Drain. Fill. Dwell. Repeat 8 more times until morning.
The machine alarms a lot. I remember when Cam was in the NICU and a nurse and a doctor were trying to convince us to put Cam in another room, the nurse said, “There are always alarms.” and she was so right. There are always alarms. Always.