Post-Operation Recovery

For the first week after the surgery to remove Molly's infected skin she was in the Pediatric Intensive Care Unit and on a ton of medicines to prevent any type of infection. I don't know exactly which ones she's on, when they started them, why they started them, and when they started taking her off of them. Things are so fast-paced here that I can hardly keep up.

At the PICU Molly eventually got to a point where her blood pressure was pretty stable and she didn't need quite as much of the medicines she was getting, so the doctors there decided that she could move back up to the ICS. Since they absolutely will not make exceptions for babies and siblings to visit PICU patients unless there are very special circumstances, I had some family sit in the PICU waiting room with Big Sis and Little Brother during the day so I could sit with Molly and then just pop out for a bit every couple of hours to nurse Little Brother and make sure Big Sis was behaving well enough.

Molly got transferred up to the 4th floor again after Daddy got back from work on Wednesday March 25th (5 days after surgery). Then the next day her ANC suddenly jumped up from 0 to 0.4! The Neupogen (white blood cell growth hormone drug) is working! She had a dressing change again, which meant no food for about 8 hours before. Molly doesn't seem to mind not eating anymore, but she still requests water often.

After the surgery, one thing we've been watching carefully is swelling of her abdomen. She had pretty bad swelling of her body and legs and feet which got worse until we got to the ICS, and there they gave her a diuretic which helped a lot with that. Currently she is not taking as much of the diuretic, and her swelling is still going down.

On the 28th, Molly's ANC went up to 2.5 (she's never really been up higher than 1.5 in the last two years, so this is a really big number for her! Normal is between 1.5-8.5.) Then it was 3.2 on the 29th, and 5.8 on the 30th, so they stopped giving her the Neupogen shot.

Doing well on March 31st, preoccupied with picking dry skin off her lips and fingertips.

As far as the open wound goes, they have been replacing the wound VAC every few days, but the plastics team have been checking for healing tissue around the wound and at first they were thinking of placing a synthetic skin dressing called Integra on her wound to help heal it until her body is strong enough to deal with a skin graft. Now they are telling us that they think her wound is looking good enough to be able to stretch the skin around it and just do a small skin graft in the widest wound area. This is very good news for Molly.

The oncologists are still concerned about the leukemia Molly still has to deal with, but they know that this open wound is the priority right now. They are pretty certain the last block of chemo got her into remission, but they aren't able to confirm that with a bone marrow aspirate yet because last week Molly got skin redness that started spreading at her wound and went up to her scalp in just a few days. Turns out she was having an allergic reaction to the antibiotic Meropenum and once we stopped giving her that and started a different antibiotic, the redness started going away. The oncologists are hoping to get an aspirate done this next week. They say that if the leukemia does start to have more of a presence again, they can use certain chemo drugs to hold it off for awhile while we finish healing this skin wound. They really don't want to subject her to more heavy chemo and radiation until she's healthy again.

The bacteria that they say caused the skin eating rash is pseudomonas. They also found this bacteria in her port implant, and it was proving difficult to get rid of with drugs, so they ended up removing her port during one of the scheduled dressing changes and placing a PICC line in her left arm. After a few days, that PICC line developed a clot at the end of it and so they removed that and placed a new PICC line in her right arm. Molly has been having some pains in relation to her wound and the PICC line and her swelling, so they have her on morphine still, and she has a button she can push to get another small dose of morphine every 10 minutes. She usually declines pushing the button though, saying all she needs is to rest and it will stop hurting. She's so strong.

Right now Molly is just hanging out in her room in the ICS unit, passing the time watching just about every animated movie made (Ratatouille is still a favorite, but she's watching Cars and Monster's University a lot too), and enduring the every-4-hours vital signs check and the constant visits from doctors from just about every department in the hospital. She's got the oncologists, the ICS team, the plastics team, the physical therapy team, the infectious diseases team, the dietitian, the urologists, the wound VAC and ostomy team, and several others I am probably forgetting. The trouble is that all these teams show up at different times from each other, and so she gets a visit nearly every hour from someone until the afternoon where we have a few hours undisturbed.

Molly had a rare energetic minute, and we played a modified version of pictionary. This is a cat she drew. Taken on April 3rd.

The Intermountain Healthcare system of hospitals lifted the flue season visitor restrictions on the 2nd of April, so now siblings younger than 14 can come see patients, and that means I can bring Big Sis and Little Brother in to Molly's room with me while I am there. This makes things so much more convenient!

Molly gets a lot of gifts sent to her, and she loves to open the packages, but she never really keeps the gifts for herself. She is more of a "quality time" kind of kid, so she's been regifting most of the stuff she receives to Big Sis or Little Brother. She really loves to give them stuff, it's so cute.

Sorry for the punctuated format of this post. As I mentioned, things are happening at a very fast pace and it's hard to find the time to frequently post, so my posts get written less frequently and I just have to try to remember everything that has happened. If you'd like, you can visit my Facebook page where I post more frequent Molly updates publicly.

Surgery for Necrotizing Fasciitis

On our way down to the hospital I talked with Big Sis about what was happening to Molly and why we were going down that night instead of waiting for our weekly visit the next night. Big Sis didn’t seem too shaken by the possibility that Molly could die that night, but she did express to me that she was sad about it. We picked up some Wendy’s chicken nuggets to eat for dinner on the way down there. Big Sis got a toy from the movie Annie, and we sang “Tomorrow” together in the car. It helped take my mind off what we were going down to the hospital for.

Ready to go into surgery. Not having a very fun time though.

We got to the hospital and Daddy texted saying he was in the PICU waiting room. We met the social worker that has been on Molly’s case since the beginning in the lobby of the hospital and she expressed how sad she was to hear about Molly’s current condition, and asked if she could go up with us to entertain Big Sis while we were waiting. I was OK with that.

We met Daddy in the PICU waiting room and we waited there while the social worker went to check on Molly. She came back and told us they’re ready for us to go see her, so we followed her back with the kids. Molly was asleep and she had several IVs connected to about 9 machines, and a breathing tube. The nurse chatted with us a little about how she was doing and told us that she was pretty stable except for a few things they’re giving her medications for. The surgeon said that they would give her a rest that night and in the morning they will assess her condition and depending on how she is doing they will either go back in to surgery in the morning or later in the day. I took the kids up to the ICS room where Molly had been staying, and slept there that night while Daddy stayed with Molly in the PICU. 

Somehow I fit on that couch too...

The next morning, Daddy texted me from the PICU and said that Molly is alert, her blood pressure is up, she’s breathing on her own, and she wants pink lemonade (Daddy had to figure that one out, as Molly had the breathing tube still and could only mouth the words).  I did some of Daddy’s laundry in the ICS parent room and then when Molly went in to surgery (later in the day, which was good because that meant that she was doing well enough to wait that long) I brought the kids to the surgery waiting room and we waited there for about an hour with Daddy while the surgeons changed the Wound VAC , and checked to make sure there was no more spreading of the infection. 

Doing well after surgery

The surgeon came in to give us an update and he said that he is confident that he was able to get all the infected tissue out, and he told us that another surgeon is going to perform the ostomy. They wanted to do a colostomy to output on her left side as that is the best option of the ostomies, but since the infected tissue was removed on the left side, they have to do an ileostomy to output on her right side instead which is actually better in Molly’s case because it allows them to also knock out the intussusception problem. And Molly can begin eating again because of that. The surgeon told us that the debridement he did the last night was a very difficult procedure and they will be checking the tissue for further infection every two days when they change the wound VAC. We asked about the ileostomy and if it was going to be a permanent thing, and he said yes because the infected tissue included most of the muscles around the rectum and she will not have any bowel control. But he said that she will still be able to control her urine, as those muscles were largely untouched. 

The many machines on which Molly's life depends.

 To be continued...again...

Morphine stopped and Necrotizing Fasciitis appeared

After a few days of giving Molly the morphine, she was still getting doses a few times a day. It was managing her pain too well and the doctors wanted to see how she would do switching the morphine with oxycodone. They did that switch on Thursday March 19, 2015. They also gave her the peg-aspargase chemo. She was doing pretty well on Friday while I was there, and overnight as well. She was still a bit cranky as she was on the steroid pulse again for the week, and still NPO (nil per os, Latin for “nothing by mouth”) though she was talking about food quite a lot. Fries and fry sauce (two cups so she can share with me), healthy pizza, healthy ice cream, healthy milk, applesauce with the green twisty lid... yeah food is the only thing she wants to talk about. And the movie she’s watching over and over again for this hospital stay is Ratatouille. 

On Saturday morning Grandpa Wayne came to stay with Molly while Daddy went to be with Big Sis at her tumbling competition. I was back at home helping to run a fundraiser yardsale for Molly. We called it “Molly’s BIG Yardsale” and advertised it pretty well, and ended up getting a very good turnout! I overheard people talking on their phones about “Molly’s BIG Yardsale” like it was a legitimate event. We had a lot of item donations from the community, and a lot of money donations as well. It made me cry a few times that day. There was also a yardsale going on in Phoenix, which was even more successful than the one here! Big thanks to everyone who donated and helped, and especially to Aunt Ashlyn for coming up with the idea and running with it!

While Daddy was at the tumbling meet, Molly noticed some “bumps” on her bottom when she used the toilet and the nurse looked it over and drew some lines around the rash she saw there on Molly’s left butt cheek and in towards her anus. After a little while, the rash had spread past the lines up toward the front and a little on the right butt cheek and the nurse called in the infectious diseases team and the surgical team to check it out. Molly didn’t want them looking at the rash out on the bed but let them look at it in the privacy of the bathroom (what a mature little girl!). Daddy had come back from the meet by then and they told him that this rash is a necrotizing fasciitis (flesh-eating infection) and they need to perform a biopsy to find out if it’s a bacterial or fungal infection. The rash was painful and Molly couldn’t walk or even sit up without needing Daddy to support her.

After the biopsy, Daddy called me and told me that they confirmed the rash is a bacterial infection caused by the bacteria Pseudomonas, and gave us a couple options for what we could do at this point. They said they could take her in to surgery right away, perform a debridement (removal) of the infected tissue, and cover the wound with a wound VAC until her immune system is back at which point they will do a skin graft to cover the area. They said this option presents many serious risks as her immune system is nonexistent and if there were any complications she would almost surely die. The second option was to wake her up from the biopsy sedation, make her very comfortable with morphine, and let us have some time with her until the bacteria took her life, which they said would happen later that night. 

I almost died when I heard the second option. I couldn’t believe that my baby could die that night. I told Daddy that obviously we have to do the surgery. We can’t not try to save her. He agreed with me, saying if we didn’t try, then we’d hate ourselves for the rest of our lives. So he told the surgeons to start the surgery, and I packed Big Sis and Little Brother up to drive down to the hospital. While I was getting the bags ready, I got a text from Daddy saying they were finished with the surgery and I should go down there now. I got really scared at that message, because it didn’t seem like the surgery took long enough, and that must mean there was nothing they could do about the infection. 

To be continued...here