In my last post, My’isha had just got her port replaced and we had made it home.

We were all really tired. We just wanted to go to bed and start the next day. The only reason I checked her temperature is because my mom called and asked if she had a fever. Mother’s intuition doesn’t stop when your child has children. Sometimes she picks up on things I don’t, like this fever.

It quickly climbed to the magic 101, so I called the number from her discharge papers for the surgeon. Wouldn’t you know, it was a non-working number. So I had to call the oncology department nurses line. I knew that with a central line, we run the risk of an infection in the blood or in the line, so we would need to go the emergency room. I began packing our bags before the doctor even called us back. Not a problem right, just head back up to Denver around 9pm.

We were quickly taken back to a room, and we must have been SUPER lucky, because we had 2 nurses. They come in running…. grabbing the stuff for cultures and accessing her port. Of course they asked me for the size of needle for the port that she just got and I left the packet they gave me at home. So I really had no idea. I called home and had Mikey look through the packet, but of course the information card wasn’t filled out for us. So the nurses had to do their job and look in her records.

I should have know something was up when nurse one asked nurse two if he feels comfortable accessing her port. He obviously had little experience, which came apparent when he didn’t get it the first try. The point of the central line is to avoid getting poked numerous times looking for a child’s vein. It defeats the purpose if you have to try more than once. Accessing a port is a sterile procedure, nurses use extreme caution when accessing a port due to the increased risk of blood infection. Bacteria that live just fine in your mouth, will kill you if it gets in your blood.

I was honestly surprised at how rough they were with a surgery site that was just done that morning, but they had to get the blood to check for infection, so I did what I had to do. I held her little legs and I talked her through the torture. When he was finally able to pull blood, he pulled the labs and was going to apply a new tegaderm directly to My’isha’s incision site where they had placed the port.

I told him he needed to put fresh steri strips back over the incision site. The tegaderm will pull of any scab or skin that is in the process of healing right off with it when they have to de-access her. So he asked for more steri strips from the other nurse.

My’isha is still being held down at this point. Through difficulty getting her accessed, the nurses forgetting tubes, the lack of compassion for my daughter, and being held down through all of it, of course My’isha’s oxygen level started dropping. There was a 3rd nurse in the room to help hold. Rookie nurse of the year asked her to hand him an oxygen mask. HAND HIM the oxygen mask…. HAND IT TO HIM. In my mind, I am like, well… there go your sterile gloves. The thought must not have crossed his mind, because immediately after opening the bag and placing it by her head, he tried to continue doing with he was doing with her open accessed port! May not seem like much, but basically he was going to touch an open gateway to a major artery pretty close to my daughter’s heart. Needless to say, I caught him before he touched her. So… at that point… he was stuck… one hand on her accessed port, and the other hand is now contaminated and cannot come near the site.

We had to wait for the other nurse (must be the mentor nurse in this situation) to get his gloves on to put the steri strip and dressing on. Guess what size steri strips he came back with?

THE THINNEST SKINNIEST STERI STRIPS HE COULD FIND. So he did a thin x-like cross before applying the tegaderm. UGH…….

I was just ready to get upstairs the oncology floor where the nurses know what they are doing. My’isha and I both fell asleep in the ER room before our room was ready upstairs. You should have seen the nurses and CA when they saw that dressing job she got downstairs. I told them about our port access experience, and they were all speechless. We tossed around the idea of changing the dressing again, but it really would have likely done more skin damage than just leaving it alone to only be removed once.

So My’isha was able to fall asleep pretty quickly. I on the other made my bed by the window where I used to sleep, but I felt so far away from her. It didn’t feel right. I didn’t want her to wake up and not be able to see me. So I slept in the chair beside her.

Awake a couple of hours later…

The plan for the day was:

• redo her EKG because the waves were a little too long to qualify for the MIBG treatment study
• redo her chest x-ray from the previous days port placement surgery to check on the cloudiness in her upper lungs
• monitor her fever
• monitor breathing and O2 levels due to issues through surgery and then down in the ER

Once the tests were complete, we waited for results. Her fever went down quickly after the Tylenol and did not come back.  Her breathing was a roller coaster and much more complicated…

The chest x-ray showed good improvement over the previous day and her lungs sounded clear to every person who listened to her. However, her oxygen levels were very inconsistent. She was fine when she woke up in the morning with very low blow by oxygen. I turned off the oxygen around 9 I think it was, because she hadn’t been using it. She was staying in the safe range, until the doctors came around. Then she would dip from time to time throughout the day. She would recover her oxygen levels on her own, but the dips…. the dang dips in oxygen level just keep everyone on their toes.

They brought her a pinwheel and a harmonica to blow to help exercise her lungs. They worked wonders! Until she stopped…. then sometimes her levels would fall right back down again. Sometimes her levels would fall and rise again without her doing anything. I sat her bed I propped her pillow, we sang, we stretched… anything I could think of to keep her levels up.

Through all of this, I began to notice, how much of a waste of time it was being there. Her lungs sound good, her chest x-rays look good, she is eating, drinking, playing, peeing… the only thing holding her back were the wires for the monitor.

As it got into the afternoon, talk was it looked like we were going home that day. The nurse even popped her head in to tell me when we would need to be back on Monday. But 4pm, 5pm came around, and no one had said anything. At that point, I knew we weren’t going home because we couldn’t keep her oxygen up.

I began to get upset. I told her daddy and my mom that we weren’t coming home. The sunset seemed to be calling us home, and the more I sat there watching the stupid blue line on the monitor, the more I wanted to leave. I was driving myself crazy trying to make My’isha take deep breaths and all these breathing exercises just to keep her oxygen level from dropping at all. KNOWING she just has a freaking cold!

So, the next time the nurse cam in, I stopped her at the door and asked her what I needed to do to leave. I told her was pointless for us to be here. I told here they weren’t doing anything for her. She told me she would talk to the doctor. An hour later, she came in to tell me the doctor will be in after she gets done with phone calls and such. During the time I am waiting for the doctor come in, I know how I get when I am upset, so I decided I better write down the good points and read and reread the patient rights.

The doctor came in probably another hour later, and asked how I thought My’isha looked. To which I replied, she looks good. She asked if we were ready to go home. To which I replied YES!!!!! I was so happy… she wasn’t going to put up a fight. She was really going to discharge us after 7pm! Right after shift change and everything!

It took another hour to get all of the paperwork together, but My’isha was in the wagon along with our bags and we were ready to go! I text my mom to let her know we were on the way to surprise the boys.

AND THAT WE DID!

Always remember to stand up for yourself and your kids. If you know… then you know. You are your child’s advocate! Hopefully I prevented an infection. Hopefully I reduced the damage to the incision site. The icing on the cake was My’isha getting to sleep in her bed another night before she goes in for treatment next week. The sprinkles were I got to kiss my boys goodnight and cuddle with my love. We made it home. It was late, but we made it home. It was a LONG 2 days…. but we made it home to our family.

If there is anything you can do to help with expenses over the next 6 weeks, it will be greatly appreciated. We have a tough and busy treatment schedule coming up, so any little bit will help.