Scary Times: Part 3

[As most of you may know, our Scary Times "saga" continued this last weekend. It looks like this three part story may have just become a 5 or 6 parter. Stay tuned...]

Part 1
Part 2

The last morning in the hospital was bittersweet. We were so ready to go home; but, we were nervous about not having Lucy monitored closely. We, once again, had a night of constant interrupted sleep. It ended with us being woken up at 7 am by the surgeon resident.  In our sleep deprived state, we still somehow found humor...

The surgeon resident, who was of Indian descent, asked if Lucy had been, "em, meeking da farrts?"

I giggled like an immature school girl as soon as he left. I took it as a good sign for my future state of mind. Little did I know that I would be "taking a test" later on that day.

A little after noon, we were visited by the home health care nurses.  Lucy had to be given antibiotics for the next two weeks, even though we were headed home. These antibiotics needed to be administered through the picc line that was inserted during surgery. The picc line was a tube that went into her arm, just above her inner elbow. It ran up her arm and into her heart. It would allow the antibiotics to be centrally dispersed. Surely, only a qualified, medical staff member could administer those right?

Nope. Say hello to nurse Cori and nurse Heath.

We were walked through the process:

First, prime the antibiotic line by attaching the syringe to the tube and pushing out any air. It is important not to have any air in the line, because it goes straight to her heart. Talk about stressful!!!

Then, wipe off the end of the picc line with one, two, three iodine wipes. Let it dry for 30 seconds. During this time do not let the end touch anything. Then, wipe the end of the picc line off with one, two, three alcohol wipes. Again, don't let it touch anything or you have to start over. We couldn't risk any bacteria getting into the line. Then, put in 5 ml of saline. Again, no air. Attach the antibiotic tube. Let the machine (which we also had to learn how to use) push in the antibiotics for the next thirty minutes. When the alarm goes off, you turn off the machine. Before you disconnect the tube, we must again wipe the connection place with three iodine pads, dry 30 seconds, wipe with three alcohol pads. Then, 5 ml more of saline and 2 ml of heparin. No air in either of those syringes, remember!

That isn't too bad for once a day, right? No - it isn't. How about three times a day? Every eight hours? Yep. Awful. We were doing it at 6 am, 2 pm, and 10 pm. And, we had to remember to set the antibiotic out (from the fridge) 30 minutes before, so it wasn't cold. Lucy had to sit still too.

I apparently passed the "absolutely, completely unqualified parental test" that they gave me. Which means, I did it once in front of them and they gave me a handout. Needless to say, I was stressing pretty hard about doing this for the next 10+ days!

In addition to the picc line, we also had to flush her drain and measure the nasty, infected output once a day. Gross...TMI...but it smelt awful. (Grandma and Grandpa: TMI stands for "too much information".)

The days at home were long. I felt like I had a newborn again. Lucy slept awful. It was like she was having night terrors or something. I debated if she was traumatized by the hospital or if she was in pain. Without her being able to talk, your guess is as good as mine. We had to set an alarm to get up around 5:15 am to set out the antibiotic. Day and night were no longer differentiated.

Heath and I were stressed. We were getting on each other's cases. Through all of this, we internalized a lot of our pain. We rarely hugged or patted each other on the back. We forgot to comfort each other. You feel so much like you are the one who needs comforting that you forget that someone else does too. Heath felt it just as much as me. It was difficult to remember.

Thursday came. Lucy was going to get her drain out. Whew! One tube gone and one less thing to worry about. We made the trip to Omaha again, to Dr. A's office. I liked Dr. A. He was comforting. He was real with us. He treated us like real people and not just another face.

Dr. A entered the room. We somewhat dreaded getting the drain out, because of the pain Lucy would feel. But, we looked forward to her being able to run around without tripping on the bag.  The drain came out with ease. No problems there. However, Dr. A had some additional information for us.

"The abscess culture came back. I was expecting to see, well, poop, with the appendicitis. The only bug we saw was....staph."

After the initial shock of hearing "staph", Heath and I gather a few questions in our mind. "How did she get it? So, it isn't appendicitis? How do we know for sure that it wasn't her appendix? What now? How do we explain all of these appendicitis type symptoms?"

Dr. A had no idea how Lucy got a staph infection. Neither did we. Apparently we have staph all over our bodies all the time; it isn't like she got it from someone else. He was pretty sure that it wasn't appendicitis now. Staph commonly settles in the iliopsoas muscle (a muscle that runs from your spine down the right-side of your leg, right next to the appendix). I say commonly, because in adults this is common. Common for Lucy's age? Nope. It is even rarer than appendicitis. Dr. A compared it to getting struck by lighting.

He said he was pretty sure that it was just staph and not appendicitis. Therefore, he recommended that we not go on with the surgery to get Lucy's appendix out. He actually said, "If it was my daughter...(30 second pause)..I'd ride it out."  This didn't exactly provide us with the peace of mind we wanted. We apparently just had to monitor Lucy closely, just in case it was the appendix.

Stressful.

Our minds were reeling. What just happened? Everything we thought we knew was out the window. We were told to continue to the antibiotics per usual and then get the picc line out a week later.

The days continued the same. On Sunday, Heath was administering the antibiotics. When he started the machine, Lucy started coughing and almost gasping for air. Her face turned instantly red and her lips turned blue. Heath yelled for me to come closer. My mind went blank and all I could yell was, "Turn it off!" My heart was sinking. I was trying so hard to remember the rules to infant CPR.

Within a few seconds of turning it off, the color came back to her lips and she was breathing normal. Her face remained dark red. I shakily dialed the number to our local home health care. The nurse, who I didn't know, told me to try the antibiotics again. Yeah, no. So, I called Childrens. Thankfully Dr. A was on call that weekend! I was able to speak with him directly. He said to leave it off and to clamp the picc line back. We would switch to oral antibiotics. He suspected something was wrong with the picc line "mechanics."

That moment was excruciatingly scary. But, we were happy to be done with that damn picc line!

We scheduled a time to go in on Tuesday to get the picc line out - two days before we were originally scheduled. We, again, looked forward to the visit. We wanted all of this to be over. Dr. A took out the picc line with just a snip of a stitch and a tug. He looked and it was clogged. We were basically expanding the tube and blocking her blood flow. Scary. Scary. Scary.

Dr. A took another look at Lucy's abscess site and how it was healing. There was some obvious swelling. It even looked bigger than last time, in Lucy's groin area. He told us to expect the lymph nodes to swell a bit. We were to call him if it got red or if she got a fever. We discussed again the possibility of this all being her appendix. He stuck to his same recommendation. He felt pretty confident that it was just staph.

On the way home, we scheduled an appointment with our doctor, Dr. B. We really, really trust her. We wanted her opinion on the appendix vs. the only staph idea. She told us that the appendix rupture would have included some type of e. coli in the culture results. This culture didn't have that; so, she was pretty certain that this was only staph. She said the only confusion for them was how the heck did Lucy get this? Ditto.

We left her office with the weight off of our shoulders. It was a sunny day and this thing was behind us. We now just had to finish her oral antibiotics on Saturday and we were done...or so we thought.

- To Be Continued -