Fluid was leaking more this morning so they’re doing surgery tomorrow afternoon. She has to wait around for an opening in the OR so no food tomorrow for who knows how long. They’re planning for irrigation and debridement and to look for the spinal fluid leak and put in a new drain. So far we’re hearing 2-3 days in the hospital after surgery. They put some dermabond (more heavy-duty OR glue) to hopefully help it to not drain as much today.

Rachel got to meet a new friend today too.

We arrived at Mass General around 12:30 today – a huge thank you to TJ for driving us down here. ❤

Rachel needed an MRI before seeing the surgeon, appointment for MRI was at 1:30. They had a hard time getting a vein for the IV contrast and she didn’t get done with the MRI until nearly 4, then off to see the surgeon.

The surgeon had been planning to send her for surgery tomorrow, but her incision appears to finally be starting to heal and the drainage isn’t as bad as it was over the weekend. The surgeon thought it looked pretty good at the moment and there are still no signs of infection, so he just put some skin adhesive and steri-strips and a new dressing over it and said he wanted to keep an eye on it overnight and reassess in the morning. If the drainage continues to get better she’ll just stay in the hospital a few days to be monitored. If it gets worse again she’ll have surgery. They also put her on IV fluids because she’s been feeling weak and dizzy, probably from dehydration from all the fluid loss

The MRI showed a collection of fluid, as expected, since there’s a void in her back where they removed parts of her spine back in September. Nothing looked alarming on the scans. The lab results from last Thursday finally came back – there is spinal fluid leaking, but the surgeon will take the same approach as in September – as long as she’s stable with no symptoms he won’t do anything, unless he has to do surgery anyway because of increased drainage.

She’s in the same room as last time she was here – but the bed with the view:

The drainage from Rachel’s incision hasn’t slowed at all. The surgeon wants her to see him in Boston tomorrow and admit her to the hospital for “a few days.” He will do an assessment and decide whether to have the interventional radiologist put in another drain and keep her in the hospital until it stops draining or whether she needs another surgery to open the incision and then reclose it with another surgical drain in place. It seems like he’s leaning toward surgery.

Rachel’s fluid drainage doesn’t seem to be slowing down yet, so unless some miracle happens and it slows down today, it’s looking like another trip to Boston for them to try something else. The surgeon was texting me this morning and said he’d have their “interventional radiologist” – whatever that is – put a different type of drain system on it.

We’re all feeling pretty discouraged, especially Rachel, obviously. 😦

So, after about 4 hours at Maine Med, 3 hours at Mass General, and about 4 hours on the road, we got home a bit after 9pm last night. It was a long and pretty overwhelming day for everyone.

We had to wait for the surgeon at Mass General to get out of surgery before he could see her yesterday afternoon. Rachel’s head surgeon wasn’t at the hospital yesterday; I’m not sure what we were interrupting all day for him, but he was so great about talking to all the doctors at Maine Med and texting me and consulting with his fellow and nurse practitioner at his clinic. They took a sample of the fluid that’s draining and sent it to the lab to see if it’s cerebrospinal fluid (CSF), which is what the Maine Med neurosurgeon kept insisting he thought it was. We should get those results today. The surgeon fellow and the NP said that her incision hasn’t opened completely; there’s still a thin layer of skin there so it’s technically still a closed wound. It doesn’t appear infected at all; Maine Med ran bloodwork to check for other signs of infection and everything came back fine. (If it does end up infected, it would mean having another surgery to clean out the infection and then being put on antibiotics for 6 weeks – that’s why this is such a concern.) The NP and fellow confirmed what I had suspected was the issue: the radiation to that area has damaged the skin to the extent that it’s not healing as fast as the sutures dissolved. The top and bottom of the incision – where she didn’t have radiation – is still fine. They didn’t really want to put more sutures in because they thought it would still be draining and would also damage her skin more. Instead they put on a vacuum dressing, also known as a negative pressure dressing. The dressing is connected to a drainage tube and then to a vacuum pump to suction out the drainage to help the wound heal better. Applying continued vacuum helps increase blood flow to the area and draws out the excess fluid, promoting better healing. These are often used for chronic wounds that won’t heal (such as for diabetics) and in severe burns. She’ll have to wear this for 7 days and hopefully the draining will have stopped by then.

After they got the dressing on Rachel, they talked to the head surgeon and he was concerned that in the unlikely event that it actually is CSF that’s leaking, having the vacuum dressing suctioning out more of it would be bad and wanted them to put a few sutures in addition to the dressing; however, they’d already used the only dressing they had on hand so they couldn’t take it off to put sutures in because they didn’t have another to put back on. The fellow tried calling the lab to get the results but they said it wouldn’t be ready until today because only the day shift works on that type of test and there was no way to get the results last night. Rachel didn’t get any headaches after putting the vacuum pump on there, though; I would think that if it was CSF she would have, since that’s one of the main symptoms.

Her dressing looks very similar to this one, though the pump is different and larger:

Did I mention that my car wouldn’t start yesterday morning? A huge thank you to my big brother Mike who drove us to the ER and sat around waiting for 4 hours and another huge thank you to Alyssa, Nick, and Caitlyn for leaving work early and especially to Nick for driving us to and from Boston last night. ❤ And another thank you to TJ for agreeing to come over this morning to take a look at my car to see if it just needs a new battery or if it has a larger issue going on.

Rachel’s incision is starting to open back up and is draining fluid. Surgeon asked us to try using steri-strips but it was draining too much for those to hold. He suggested going to the ER here in Portland to get stitches, so we tried that this morning. 4 hours later the neurosurgeons refuse to treat her because they didn’t do the surgery and they’re making us go to Boston.

We tried having the Boston surgeon reason with them but they just weren’t comfortable doing it; they thought it was cerebrospinal fluid leaking, though the surgeon in Boston said he would be extremely surprised if it was and he was just going to have his resident or fellow put sutures on.

On our way there now, stay tuned…

Rachel and I came home to Maine yesterday afternoon. It was a long train ride for her – plus the time spent up and around and waiting at the train station – so she was pretty tired and sore last night, but happy to be home. She was able to get the drain removed yesterday morning before we left and was also told that she doesn’t have to keep the dressing on the incision anymore either.

As most of you know by now, Rachel was discharged from the hospital on Sunday. We were sitting at the hospital Saturday afternoon, having heard no news about when she’d be discharged, watching a parade of roommates come and go after their own surgeries, and I started thinking, what exactly are the goals she needs to reach in order to be discharged? For her surgery in September, which was longer, more intense, and required 2 nights in intensive care, she had her surgery on a Wednesday and was discharged on Sunday. Her requirements then were to be able to get up and around on her own and be off IV pain meds and IV fluids. This time she was off those right from the start and was able to get up on her own pretty much right after she got her brace refitted and was cleared from bed rest (aside from one extreme dizzy spell due to low blood pressure the first time she got up after being confined to a bed for essentially 5 days straight.) I asked Rachel’s nurse the question and she attempted to page the doctors that night. The next morning she had an X-Ray of her spine to make sure everything still looked good and then she was discharged around 10am.

Rachel had gone for a couple walks down the hallway at the hospital on Saturday. Her nurse asked a physical therapist who happened to be sitting at the nurses’ station if she thought Rachel needed any PT while in the hospital. The physical therapist watched her walking and said she was already doing great and didn’t need any help from her.

Rachel’s pediatric oncologist stopped by for a quick visit Saturday afternoon. He said her MRI and CT scans from May were pretty “ugly”, as in her spine was really messed up. He asked her surgeon, “so when are you fixing her?” At Rachel’s appointment with the surgeon in late May, he seemed pretty shocked at how well she was walking and that her only problem was increased pain – so her back was apparently really messed up. The oncologist confirmed what I had been wondering since this happened – that the radiation to her spine likely caused the bones to weaken, allowing the previous screws to pull out, causing all the hardware to shift and her spine to get out of alignment. The surgeon mentioned that the fluid build-up from the cerebrospinal fluid leak that everyone had been concerned about before actually helped them during this surgery because it caused the tissue surrounding her spine to be pushed out away from the spine so they could access it easier, doing part of the work for them.

Rachel’s been craving sushi since we got to Boston…finally got some sushi takeout for lunch today (Thai food for me – we were lucky to find a restaurant to satisfy both our cravings.) The yellow roll is called the Sponge Bob roll, so we just had to try that one (coconut shrimp, cream cheese, cucumber, and mango on top for the yellow.)

 

*Edited to add that Rachel reports that she already feels better now than she did about a month after her September surgery and her back already feels a lot more stable than it did before this surgery. She also just had her first shower in far too long – exciting times! It’s the little things…

As I mentioned last night, Rachel’s surgery was successful. The halo traction was helpful, but the surgeon still had a lot of work to do to get her spine back into alignment, causing the surgery to last about 7 hours instead of the anticipated 4. They were able to eventually get her spine back into a normal position, though, so that’s great news. There was a chance they wouldn’t be able to and would have to put in the supporting hardware with her upper spine still curved.

Prior to yesterday’s surgery the T3 vertebra (T=thoracic, middle section of the spine) was pushed forward, causing her spine to curve forward. They were able to get it pushed back into place, but it left a bit too much space going the other direction between T3 and T4 (T4 was where the tumor was.) To fill in the space, they used a cadaver bone from the bone bank. In September’s surgery, the surgeon tried to use as little hardware as possible to give Rachel the best range of motion and only put screws in T2 and T7, with rods in between. As we discovered, this wasn’t enough and the screws pulled out and caused the alignment problem. The surgeon had thought he would put the replacement hardware in the lower cervical spine (her neck), which would limit her movement more than the thoracic area. He ended up only putting screws in every vertebra from T1 through T7, with the exception of T4, which doesn’t have enough left of it to have supports. There are also rods in there as well. The new hardware is traditional titanium and not carbon fiber.

Here’s a spine diagram for reference:

Rachel didn’t have to go to the PICU after surgery this time; she was back in her regular room around 8:30 last night. She’s in quite a bit of pain, but with the halo gone she still seems better than before surgery. She also seems to be doing better than the surgery in September.

She was on bed rest and not able to elevate the head of her bed more than 30 degrees until they were able to get her brace refitted this morning. She has to wear that 24/7 for at least a couple days and then after that whenever she’s up and around for at least 6 weeks, though like before she can take it off to sleep and eat.

She has one small drain this time instead of the two larger ones she had in September. We’re told it should be removed fairly quickly and not left in for a couple weeks like last time. She’s already off IV fluids and IV pain meds, which took several days last time.

Rachel’s nurse getting all her “friends” back into bed, waiting for Rachel to come back and join them:

When Rachel was still in traction and having to lie in bed staring up toward the ceiling, the music therapist and child life specialist printed out some red panda pictures (her favorite animal) and hung them at the top of her curtain:

Rachel’s surgery was a success; she’s in the recovery room now. ❤

I’ll post details later.