The saga continues...

The last update I posted was Saturday morning and since then there have been a few developments.

The first actually happened Saturday morning but I did not write about it because I was so angry. There has been a group of surgical residents who have come to check on my mom each morning during rounds. Most of them are wonderful. Most. There was one who was extremely condescending every day and dismissive of my mom's experience. I kind of sat by and watched it happen every morning because later on each day, a surgeon who must oversee that group would come in and I trusted his expertise.

As many of you know, my dad is a retired OB-GYN and despite the fact that he and my mom are divorced, he has been kept in the loop throughout all of this and I've asked him questions along the way to confirm that he agrees with the treatment. It is interesting that after I shared with him what was going on at hospital #1, he actually suggested EXACTLY what ended up happening in terms of the surgery the next day when we came to hospital #2. Over TEXT MESSAGES. From the OTHER SIDE OF THE COUNTRY. I still am blown away by the incompetence of hospital #1 when my mom was right in front of them!

In addition to my dad, my brother is friends with an OB-GYN here at hospital #2 (a strange and wonderful coincidence, I know!). She also correctly suspected what was wrong while we were at hospital #1 and was supportive and instrumental in our decision to leave hospital #1 against medical advice. Yes, another OB-GYN who did not see my mom in person was able to determine what the problem was. Again, what is wrong with hospital #1?!?

So back to Saturday morning. This friend of my brother (who I will now refer to as our family friend because she visited my mom in the Trauma ICU and brought food and asked questions and was absolutely amazing to us) questioned a few things they were doing for my mom, so I had these questions to ask the residents when they came in on Saturday morning.

I've already described how this one in particular treated my mom throughout the week, and Saturday was no different, even though my mom had been through an insane ordeal the day before. I said I had a few clarifying questions about what was happening, and immediately she became extremely defensive. Rude, really. She questioned who this family friend was and stated that OB-GYNs know nothing about bowels.

UMMMMM…excuse me?!? Two OB-GYNs were able to diagnose what was wrong with my mom SIGHT UNSEEN. So clearly they DO know a thing or two! The fragile ego on this resident was embarrassing. To be so threatened by questions?!? Utterly ridiculous!

As soon as she left the room, I called for the charge nurse and I made it clear that I was very angry and that she was NOT going to treat my mom any longer and that she was not even welcome in the room. LIVID is the only word I can use to describe my emotions. I'm a very laid back, go-with-the-flow person most of the time (or at least I try to be!). But when you mess with my family, and especially my mom, who is in pain with a gaping wound in her abdomen, you will see a very not nice side of me.

Another surgical resident came in to speak with us and assured us that particular resident was removed from my mom's case and we would not being seeing her again. I explained that while I might only be one person, I am representing my entire family and that it is MY job to ask questions and it is THEIR job to answer them. Frankly, the fact that my brothers and I have been here around the clock has made the hospital staff's job easier because we are the ones who help her in and out of bed, get her water, adjust her pillows, settle her in the chair or bed, walk laps with her around the unit, cover her with blankets, adjust the temperature, and handle all of the other countless little things she needs. And we are excellent company for her as well, if I do say so myself!

This whole business with "excusing" that resident was right about the time I was writing my previous blog post and my mom was resting, so I decided against including that story until I had calmed down!

Everyone else here has been spectacular. Truly. But I have learned in a very short that I have to speak up. As great as everyone here is, the reality is that WE, her family, are the ones who will be taking care of her after she is discharged and we have to not only understand, but also be comfortable with the decisions being made. We are not morons – on the contrary, my brothers and I are intelligent, thoughtful people, who are far more familiar with medical language, procedures, medication, and so forth than most non-medical people. So my takeaway is that it is my responsibility to speak up, ask questions, and be my mom's advocate at all times. And to not be shy about it or apologize for it. Period.

So, on to how my mom is doing…

Saturday was a pretty good day (after that terrible morning). My two brothers, my sister, and my baby niece came to visit and to give me a break. I had been at the hospital from dinner time on Wednesday until lunch time on Saturday, and I was really suffering from dog withdrawal. As soon as I got home, I had a bite to eat, and then I took Ginny upstairs to bed with me (she is an expert-level napper...Maddy, not so much!). I slept for the rest of the afternoon, and then after dinner C and J went back to the hospital (G had stayed there all afternoon), while I hung our with my sister and niece. It was a nice break. C and J got home late, and G spent the night at the hospital. At one point during the evening, the nurses had to do something for my mom and they asked C, J, and G to step outside for a few minutes. One nurse said to my mom, "Your sons really love you!" and that made my mom's night.

On Sunday, J, R, and my niece visited my mom while I was able to run a few errands to pick up some things she needed before going back to the hospital to relieve G. At this point, we are a well-oiled machine! The rest of Sunday was thankfully uneventful and my mom was feeling a little more comfortable overall and the infection seemed to be improving.

On Monday morning, I had a meeting right down the street from the hospital. I waited until all of the usual morning rounds were done and my mom had eaten a little breakfast, and she assured me she would be fine while I went to my meeting.

One thing that's been happening is I can be in this room and not see another person for up to four hours at a time – just when my mom's medication or vitals are due. Long stretches of time when it's just my mom and me. I'm not complaining about that at all, but most of the time, we are left alone.

But if I leave the room? It's like a parade. If I go to the cafeteria to get something to eat,  someone comes in the room. If I step out to call a family member, someone comes in the room. EVERY.SINGLE.TIME. It's extremely frustrating. Sometimes it's a nurse or tech with updates, sometimes it's doctors to exam the wound and discuss treatment, and today it was the case manager to outline her discharge plan! I mean, seriously! I was gone less than 15 minutes today when I went downstairs for coffee!!! It has almost become a joke between my mom and me.

So, yesterday, I should have known something big would happen if I physically left the hospital.

While I was at my meeting, they put the wound vac on!!! Ahhhhhh! WHY? WHY? WHY? My mom said it was very painful and I have enormous guilt about not being here with her! I cannot understand why every time I leave, something big happens! They also did a chest x-ray while I was at my meeting because they were worried about her developing pneumonia (thankfully the x-ray came back clear aside from the existing fibrosis). Two big things while I was gone for a few hours!

The rest of yesterday went well, and having the wound vac actually seemed to make it a little easier for her to move around. C and G came to visit last night and they thought she looked pretty great considering all she's been through. We were feeling hopeful that maybe things were looking up. She did not have the best night of sleep, but part of that is because people are in and out of the room for various reasons.

As I mentioned, a case manager came in this morning and explained that the wound care team would be in tomorrow to change wound vac and then if they were able to secure the equipment for us to take home and arrange a schedule for home nurse visits, we might be able to go home tomorrow. Excellent news!

However, that did not remain a possibility for long, because one of the things they do during the night is draw blood, and the results today showed an elevated white blood cell count again. So just this afternoon, they've started her on two more antibiotics, meaning in addition to being on oxygen and the wound vac machine, she now has IVs in both arms. And since they don't know what's causing the white blood cell count elevation, she has to have another CT scan this evening. How much more must she endure?!? Honestly!

This pole is like an extra appendage
my mom has to drag around with her

I keep telling myself that it can only get better...and sooner or later those words will prove true.

Again, thanks for your messages and kind words. We wouldn't be able to do this without all of your support! We are so grateful for such loving family and friends!

Happy Tails to you!