1/1/20 Central Line Access

Goodbye Central Venous Catheters

The 20s roared in for us this year with a bad virus and a 102.0 fever for Reese. But we did NOT have to spend New Year’s Day in the emergency room!!! Why you ask? I will tell you.

The above video is Reese’s LAST access, she had her port removed on Monday! Her port is the entrance to her central line, that is located just under her skin. This port replaced her double lumen broviac this past June.

Reese’s double lumen broviac. She had this for 16 months, during chemo and transplant. It hung down outside her body.
Reese’s port. This is a catheter that is accessed under the skin, with a needle.

Reese was very eager for the switch from the broviac to the port, a port gives her the freedom of a 5-year-old girl. However, it came with many of the same risks as her broviac…. the most important being infection that can go straight to her heart, because this is where the line goes. Reese is an anomaly (I know you know this already.) She NEVER had an infection, not one, throughout the almost 2 years she had had this kind of access. This is unheard of, we have been incredibly diligent every day and worked with the BEST, most trained and careful team. We have kept Reese safe. But, like I said, this is not usually the case. It is for this reason her team was eager to take this out as soon as it made sense. And that was Monday.

Of course I was filled with the usual dread of my little girl being under anesthesia and being under the knife. This never gets easier. Her actual surgery went well, but we had a scare after she woke up from the anesthesia. Reese and her sisters have been battling virus after virus this season (much like everyone, I know that it has been brutal everywhere.) Well, she still had a residual cough, which was ok’d by her medical team. Well, while under, some congestion gathered in her lung, causing her oxygen saturation to tank after surgery. She received a racemic epi treatment, which opened things up, and after observation for a few hours we got to go home. That was a blessing.

A note on little kids and surgery…

A note for any medical moms that follow this blog- I join Reese when she goes back for surgery. This is possible, if you ask the team. They were very kind and accommodating on Monday. After all, doctors are there to help.

I’ll explain for anyone reading who doesn’t have children being put under anesthesia. At Lurie, the surgery protocol includes the nurses taking Reese from me in the pre-op room. They wheel her away while I watch. This resulted in her screaming and crying hysterically, begging for me, pleading with everything she has. “No, mommy don’t let them do this!” “STOP! PLEASE!” Because no child wants to be torn from their mother’s arms and brought back into a surgery room alone. It was awful and it took me a long time to recover from the horror of the moment, too. I didn’t know it was possible to “ask” to go with. Because, well no one tells you. That’s why I am.

When we went to UCSF, we had a different experience. UCSF has a different protocol. I walked Reese into surgery, held her hand, brushed her hair, and sang to her while she went under. It was peaceful and we had a great routine. Then, I left. I was there when she woke up, so she thinks that I actually never leave. We got through surgeries with ZERO tears (well, only from me, but she didn’t see.) This was important, because she has gone under so many times. I disagree with the policy at Lurie. There is a reason they have it; a mom might freak out, get nervous, and cause problems. But I think that a mom who is prepped appropriately deserves the opportunity (or option) to join her child. What Reese and I went through was unnecessary emotional trauma for all involved, and I will make it my mission someday to find the right people up the chain to address this. But for now, I can tell you that across the country, different hospitals have different policies on this. So if you find yourself at one that won’t let you accompany your small child into the scary surgery room, ask and make yourself heard. Doctors want to help. The picture below is Reese going into surgery. There were no tears, only love, as I joined her on her journey.

Back to today. So now she is sick, again, but we are able to treat her like a “normal” sick little girl. She does NOT need to race to the emergency room because she does NOT have a central line. (A fever could indicate a line infection, so if you have a line, you go to the ER immediately, no matter what. This was us for the past two years.) We are hopeful this virus doesn’t morph into anything more dangerous, and she will see her pediatrician tomorrow. What a blessing, to go to a normal pediatrician. This also hasn’t happened in two years. I am praying for this theme in 2020, normal normal normal!!

Safe skin products – Beautycounter

I am continuing on my quest for safety in my home. I’ll talk more about this at later times (but I will admit that I spent an hour at Mariano’s yesterday, scanning skin products with my app, EWG…) I love knowing that I am doing another thing to set Reese, Quinn, and Claire up for a healthy future. Because that’s what moms do.

Of course, I also had an overhaul of my own products (excluding a couple serums from my dermatologist. It’s hard to transition all at once…) It feels good because I know it is healthy. Many of you don’t know this, but there is quite a bit of skin cancer in my family. Putting CLEAN products on my skin is comforting. (And my husband agreed to add one skin care product to his routine. Pigs fly! woohoo!)

Please email me with questions about this. Many of you have, and I love taking about it. As you know, my passion lead me to a job at Beautycounter as a consultant. (I talk about it at length in my last blog post, HERE.)

I’m going to link to my Beautycounter site here, you can sign in to shop!

HAPPY NEW YEAR!

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