** Super long update ** Sorry for the lack of updates. You’ll understand why after reading this post.
First, we didn’t get surgery finally scheduled until last week, I believe. So I didn’t really have anything to even update. Second, work has been crazy. I’m exhausted. Hopefully things are calming down on that front, though.
With her Minnie in front of her favorite fish tank at check in
Wednesday we arrived bright and early to check in for surgery. She was the first case of the day, which is great. It means she didn’t have to wait around uncomfortable and hungry for long. She went back relatively quickly and it was Alex’s turn to go back to the OR with her for the face mask of sleepy medicine. Is it pathetic that we are to a point where it’s “whose turn is it this time?” Oye! He said she didn’t fight it at all this time, which is amazing! There’s almost always some form of protest. Then we played the waiting game. Surgery (including anesthesia and prep and spinal monitoring set-up) all took from about 9am to 3:40-ish? Alex and I both brought our work laptops and worked from the cafeteria. Once our pager beeped, we packed up and got to speak to her surgeon. This is what he said:
Reading while we waited for surgery
The surgery went really well. He felt as though he got out everything he had intended to get. There is still a bit near her spine that he didn’t touch and a bit pushing into the muscles between her ribs that he didn’t touch. He didn’t see the need to risk damaging those areas. He did have to go slower than anticipated due to the adhesions to the lung and scar tissue from her previous re-section surgery. She didn’t need a transfusion, though. Vitals were good and he said she did great. Woohoo!
With mommy. Excuse the lack of make-up/hair. I haven't bothered since Wednesday.
After surgery, she was taken to recovery for a bit. We were paged again and I was brought back to her, because she was getting so upset they felt it’d be best to have me back there to keep her calm. She needed another type of pain medication to help, because the Morphine alone wasn’t working. She was then admitted to the ICU. We had brought up pain management prior to surgery as a huge concern since last time she had such a rough go of it post-op.
Right after recovery. Poor baby was so knocked out, but in pain, too.
She kept asking for daddy hugs and kisses. The sweetest and most heartbreaking little voice "daddy" "uggg uggg uggg" 😦
A special pain medicine doctor was assigned to her this time. The additional medication (Ketamine) they decided to put her on required for us to be in the ICU since the nurses on the regular floor don’t feel comfortable dealing with it…She has had her own dedicated pain management doctor since being admitted, and even with that – we had a little (or actually it was pretty big…) snafu.
Getting some sleep...sort of.
Wednesday evening, after settling it, it still seemed as though she was in pain. She was grunting, breathing weird and would wake pretty frequently. She wasn’t getting good sleep and I was starting to get frustrated since we mentioned this issue so. many. times. before surgery. The night nurse kept giving her extra little boosts of Morphine, which weren’t working all that great. So, around 7am on Thursday, another doctor came in and said they would page the pain management doctor. Good. Only one parent is allowed to stay overnight in the ICU due to limited space, so 0nce Alex came back Thursday morning, I went to get breakfast thinking pain management would be in by the time I got back. They didn’t come while I was gone. Strange. She’s still grunting and grimacing and hadn’t slept restfully (more than 5 minutes at a time) since 4am. I was getting frustrated, but was trying to not be a huge…um…brat? Alex was definitely getting frustrated, too.
See the grimace? 😦
The pain management was brought up at rounds and they said they were waiting on a call back from the pain team. So by 11:30 I’d had it. It had been 4.5 hours at that point which I felt was just totally unreasonable. I asked our nurse to please ask again, and the doctor said she’d page them again. By noon they STILLwere not there so I asked our nurse to try again.She asked me to explain my concern and why I thought Madeleine was still in pain and kept reiterating “but you feel as though it’s mostly controlled, right? She just isn’t able to sleep and you want her to sleep?” Come on! This is my daughter. I know how happy and talkative and chipper she normally is and she isn’t even smiling. She got on the phone with the ICU doctor. At which time I heard the nurse talking to the doctor saying that she would call to find out what was going on, but that she’s been hung up on by the pain doctors before and thought it’d be more effective if the ICU doctor called. What is going on?!!? That is ridiculous that they are hanging up on nurses. By noon, the doctor arrived. The not good news about that? She had not even received a page, she was just dropping in to check on Madeleine to make sure she was doing ok. Alex about lost it at that point and wrote an extremely angry e-feedback on the hospital’s website. The good news about the doctor dropping in was that we were able to increase her medications and she was comfortable and slept for a little bit. She seemed uncomfortable again later in the day, so they also changed her from Morphine to Hydromorphone. Similar, but it seemed to have a much more positive effect on her pain levels.
We tried to distract her from the pain by reading to her, but she still had the sad face on.
They finally got her comfortable and she fell asleep.
She has been so sweet since her surgery. Wednesday she received a present from her daycare. A very sweet little pink bear and some balloons. You never know what a kid is going to love, but she adores this pink bear! She kept saying “snuggle! Bear!” and pulling it in to her chest. Here at the hospital, whenever they do something unpleasant they give her a sticker afterwards. So, at one point she asked for a sticker and I gave her one of the ones she’d accumulated since surgery. She wanted the paper backing taken off, so I did that for her and then she stuck it on her bear’s face and said “all betta nowwww!” 😀 Apparently her little bear was hurt. LOL! She has been snuggling with her bear, Mickey, Minnie, Sophie (the giraffe) and a puppy dog that my employer sent to the hospital for her. She pulls all of them in to her chest and rubs her face into them as she’s getting sleepy.
She is also in love with the clocks here. Non-digital – so she sees all of the numbers and points to them “I see clock!” “I see numbers!” to which I say “which numbers do you see, Madeleine?” And she says “I see free! I see four! I see seben (7)! I see teh-n!” Or whatever combination she decides on that particular time.
What I arrived to on Friday morning. So sweet! And daddy was thrilled to get his arms around her for some real snuggles.
She is very very big on hugs and kisses this hospital stay and wants lots of cuddles. She also wants to watch Mickey. All the time. To the point that Alex went out and bought her a Mickey Mouse Clubhouse DVD this morning so she wouldn’t be so upset.
Then it was time for some scrambled eggs, biscuit and mandarin oranges. She ate a little bit of the eggs/biscuit and all of the oranges.
Don't forget the juice!!
The remainder of Thursday and Friday morning were just monitoring her and seeing if she could come down on the Ketamine. At some point her catheter came out – I can’t remember when exactly – but she is making great diapers without it. 🙂 It was Alex’s turn to stay the night Thursday night, so I went home to sleep. By the time I came back Friday morning, they had dropped her Ketamine in stages and she’d done great. By noon they had stopped the drip and were just monitoring her to see if she did ok. She did! At this point, they switched her to Torodol (sp?) a super strength Ibuprofen to replace the Ketamine, which is something the nurses on the general floor are comfortable with giving.
On the gen. surgery floor - Oh the drama!!! LOL! She had definitely started getting her spunk back.
Dr. Healy, Madeleine’s surgeon, also came by our room to check on her. He saw that she was much more comfortable and gave us some pretty amazing news. The tumor that was removed was about 5cm in size and pathology showed that it was benign! There was no mention of active Neuroblastoma cells in the report (from what I could decipher of the medical-speak in the report). This is so amazing! I am still waiting to hear anything from Hem-Onc about this, as I called yesterday and have not received a call back from anyone about next steps, follow-ups, etc. And we’re on General Surgery’s service, so the oncologists aren’t doing rounds on Madeleine. Frustrating – as I would like to ask some questions. This is really the first time I’ve been frustrated with communication from Hem-Onc. Don’t know if it’s because she’s not in active treatment anymore so they just don’t have time for us. Don’t know if maybe I’m just unreasonable.
Alex wanted Burger Master for dinner, so I went out and got it. Once Madeleine saw that there were fries in the room - she was all in! She started shoveling them down. Ohmygoodness! Otherwise, she's been eating minimally, still.
The other notable thing that happened on Friday morning was that the Director of Pain Medicine stopped by our room. He asked for our take on the situation that’d happened the previous day and told us that he would definitely be getting to the bottom of it. He seemed more than a little bit irked at how things had been handled and agreed that 5+ hours for pain relief was absolutely ridiculous. He gave us his card and told us that if at any point we felt her pain was not being handled appropriately, to escalate and keep escalating until she was comfortable again. Good!! I was worried that I had had unrealistic expectations, but he confirmed that I had not…which irked me even more, because the nurse sort of reacted like I was being pushy because Madeleine wasn’t screaming in pain. But I know my daughter and her sad face and grimacing and inability to stay asleep for more than 5 minutes is not like her unless she’s in pain.
The bright side in all of this is that at least while she was taking Ketamine, her likelihood of remembering what happened is minimal. It has amnesia-like qualities. Fingers crossed that she doesn’t remember! Also a bright side is that we now know which medications do control her pain for any future procedures where pain medication is required. Again, fingers crossed that this is the last major surgery she’ll need related to all of this cancer stuff.
By 2:15 pm we were transferring to the general floor. I asked for a single room – at which the ICU doctor responded by laughing at me, practically rolling her eyes and basically telling me “fat chance” (rude woman!!) – but much to my surprise, we were escorted to a single room! Wahoo!! I’m glad I asked, despite the rude response. Madeleine has had a tough enough time sleeping – we didn’t need another family making noise and preventing her from getting the rest she desperately needs.
And if you all don’t mind, I’m going to jump on my soap box for a moment here. You can skip it if you don’t want to read ranting. ** soap box rant to follow **
I realize that doctors aren’t known for their kindness all of the time. Kindness isn’t what makes a great doctor, some might say. In fact, if I had to choose kindness over smarts, experience, medical skills and lack of errors I would obviously choose the latter, however I am quite disappointed with how rude some doctors can be. We have been very lucky with our nursing staff during this stay (aside from the one situation noted above). They have been much more experienced than previous nursing staff and I felt more comfortable with their skills. We love our regular doctors with whom we have formed relationships, but sometimes other providers I’ve come across can be downright rude or insensitive when it’s really unnecessary. Maybe it’s my lack of sleep, maybe it’s the stress from being in the hospital, but I’m cranky about it. I’m cranky when I have to chase doctors down for answers. I shouldn’t have to call more than once to receive a response in a 24 hour period. Maybe a follow-up call. Beyond that, yes, I’m going to start getting ticked and raising hell. I’m cranky when my daughter is hurting and nobody is doing anything about it and my concerns seem to be diminished like she’s not hurting that badly so I should be patient. I get that the doctors are busy, but is my daughter the lowest priority on their list? I’m cranky when some departments can’t seem to figure out how to run on time. Ever. I’m just cranky with hospital experiences in general. And you know, I’ve made all of these complaints to the hospital itself. We’ll see if anything gets better. But for now, I’m allowed to be ticked off. We have spent so much time here, spent so much money here (no, we’re not receiving financial assistance like so many of the families do) and the bad experiences are starting to stand out more in my mind than the good, which is quite disappointing.
*** Getting off of the soap box now. ***
That being said, we are extremely grateful for the expertise of the doctors here and are soo thankful for the amazing outcome we have had. I don’t want to come off as though I’m not absolutely ecstatic about that. The customer service could just be a bit better…in a number of areas.
Last night, she was being so silly. I asked her if she was a funny girl to which she said “Yes! Fuddy girow! Fuddy!” And then I snapped this picture…
Which leads me to today. Today has gone swimmingly. She is not in pain and has been eating a little bit since Thursday. Some juice, some applesauce, little bites of sandwich or waffle or eggs here and there. Not a ton, but things are moving along from a bowel perspective. 😉 In fact, she’s been guzzling milk like she hasn’t had anything to drink in days. Everything else is just little bites, though.
Watching the Mickey DVD that daddy bought for her. Much more active, up and about, today.
She has daddy wrapped around her little finger. 🙂
The bummer about a chest tube is that the person with said chest tube is pretty uncomfortable and irritable until it can come out. We were hoping it could come out last night so she could sleep better, but that didn’t go our way. This morning, however, they did another x-ray and the surgery team felt that it could come out. WOOHOOO!! She hated the experience of the tube coming out, but has less tubes now, and can actually move around a little easier. They have also weaned her off of the Hydromorphone. Instead she is receiving Oxycodone by mouth and still receiving the Torodol via IV every 6 hours. The Torodol expires tomorrow morning, I think. Evidently patients cannot be on it for more than a 72 hour period. Once we’re off the IV fluids, she is only getting a very small amount now, and she’s eating normally and the doctors clear her, we should be able to go home. Keep your fingers crossed for tomorrow!!
You can see the difference in flushing in this picture. Once swelling internally goes down post-op, this may resolve, but it may not.
One thing I was worried about pre-op that seems to be OK post op is any further damage resulting in more Horner’s Syndrome symptoms. You might remember last time that she had some eye changes with a droopy eye and difference in pupil size. Those resolved themselves after her swelling went down post-op. Some may think that it’s only cosmetic and who cares? But I think of it like this: She is going to have scars all over her body. She’ll forever be “a cancer kid” with all of the follow-ups and maintenance that go along with it. She could have issues with Scoliosis. She may never have “full” strength in her leg so that she can compete in sports to the level that some kids may. Do we have to add a droopy eye to that? I’d prefer not. Because, let’s face it, other kids are mean. So mean. So if we can avoid adding one more thing to the already long list of things they can find to single her out for, I would really prefer to avoid it. She does have the residual lack of sweating on her left side from the previous surgery. I’m not sure if she sweats more on the right side to make up for it, or if she is just a sweaty kid? But they did warn us pre-op that another Horner’s symptom that some kids who have thoracotomies develop is Harlequin Syndrome. A flushing on one side of the body, but not the other due to damage to nerves in the region they were operating on. At this point, she is showing this symptom. She is very sweaty (still) on the right side and when warm, she is incredibly flushed on the right side of her face but not on the left side.
This afternoon she took a good nap, but slept late so we had to wake her for medication time, since she has moved on to the oral meds now. Needless to say, she was a pretty cranky girl when she woke up and needed endless hugs until she was all better to watch some more Mickey. She didn’t eat dinner…not totally sure when her appetite is going to get back to normal. I seem to remember her eating more sooner last time.
Getting lots of hugs after we had to wake her up. She was so upset.
Isn't she so cute?? Haha! She's definitely my girl again - much more animated.
To keep her entertained since she is starting to get really antsy, we came up with a couple of things to distract her. 1) I brought a ton of books. Her favorite of which is the book called “Biscuit’s Day At The Beach”. A favorite that she discovered while hanging out with one of our family friends for the day when daycare was closed (thanks Debbie!!). We have literally read that book at least 40 times while in-patient this time. 2) Alex has some wireless headphones, so he brought them and let her listen to music. She was rockin’ out! and 3) I asked if they could bring a stroller, and we took her for a long walk up and down the hallways, around the unit, into different areas of the hospital. LOL. We even came across our old room from the last time she had surgery.
This is how she rode the whole time. She had us cracking up!! It's like she's reclining in a lounge chair!! So funny. She loved the walk so much that after we got back to the room she kept saying "Walk! Walk!" so we went back out for another round around the floor.
Sorry for being so long winded! But, that’s 4 days of hospital update for you. It doesn’t help that I’ve been trying to finish it for the last 24+ hours. I kept getting interrupted or tired and needing to sleep when she did. Thanks all for your concern and well wishes. She’s doing great! Now – if we can just get to a good place and leave the hospital, I will be ecstatic. Once I know more about Madeleine’s care going forward, I will try to update with that, too.