A quick update. I didn't have time to get an update on here earlier because....Brynlee was moved out of the PICU today to the ICS floor (immunocompromised ???? service). I think that's what it stands for. That's where the cancer patients go. Anyway, I arrived at the hospital and she had been moved from the high flow canula to a regular canula and was on 2 liters (this means nothing to me either). Shortly they took her down to 1 liter and told me that they were planning on moving her to the ICS floor today. What happened to nothing would happen on Sunday? So we eventually got her moved up to the floor and out of the PICU. I had mixed emotions about this because in the PICU she had a nurse in her room at her bed essentially 24/7. Anything we needed was immediately and quickly addressed. Now, not so much. The nurses only have two patients on this floor, and Brynlee is considered high maintenance (not the words they used, but you know what I mean). Anyway, I held Brynlee most of the afternoon/evening because anytime I tried to put her in her bed she would just cry. Blair came down this evening because I felt a little bit overwhelmed, and we finally were able to get her some Ativan and possibly some oxycodone. I say finally because it apparently takes an hour to get that figured out. Otherwise, Brynlee seems to be doing well. She still sounds very gunky in her throat/chest, but we think most of that is her throat and not so much her chest. She had more smiles for us today, especially when she saw Blair tonight. Blair has the daunting task of staying the night with her in the hospital. The thought is that Blair can pretty much sleep anywhere and I cannot, so I am hoping he will be able to get some sleep.
We are hoping for some more definitive news tomorrow with the pathology results on the MYCN gene. Good night!
It has been a busy day so far at the hospital, and it is even a Saturday. The weekends are pretty quiet around here.
Last night before we left they did the bronchoscopy here in her room, and they decided that although things didn't look great it looked okay. They gave some drops down her tube overnight to help do something, and the plan was to do some spontaneous breathing trials last night and see how things went. On our way to the hospital Brynlee's nurse called to let us know that they were going to extubate and wanted to know if we wanted to be there. We were already on our way, but even after we got there we still waited about another hour for her to be extubated. The attending physicians were in the middle of a shift change, so we had to wait. While we were waiting, I was sitting by her bed and I thought I saw her blanket move down where her legs and feet are. So I watched for a minute because I didn't know if it was just her arms that had moved the blanket. Sure enough it was her foot moving her blanket. About this same time her nurse came back in, so we took off her blanket and sure enough she was moving her feet and even her whole leg a little bit. The nurse went and told the doctors and said there were lots of smiles upon hearing that news. When they came into extubate they all saw her moving her legs for themselves. Not to get too excited because these are very slow, weak movements, but it is movement nonetheless. So there Dr. S,what do you think about that? I could go on and on about this little situation with the neurologist, but it's not even worth wasting my time on it.
After they got Brynlee hooked up on her new nasal canula to continue to support her breathing, I was able to hold her. We could tell that she was so happy and that she just looked and acted more like our Brynlee. She even gave us some smiles. We haven't seen her smile in two weeks, and it was an emotional moment for everyone in the room, including the doctors. One said she had to go because she was going to cry. I would like to say that things are all smiles at the moment, but we do think that Brynlee is having withdrawl from her narcotics, so they have been giving her some Tylenol for any pain and some Ativan, which is for anxiety. We don't want to get her hooked on the Ativan, so they are going to get some kind of taper for that going. Blair is holding her now, and she has more smiles and is enjoying it. I will try to post a picture.
Her chest x-ray this morning still didn't look great, and we are still watching this area in her lower left lung, but it didn't look any worse. At this point, the only thing keeping her in the PICU is her breathing. We don't anticipate being moved to the floor until Monday at the earliest if everything with her breathing continues to go well. We need to talk to oncology, but her next round of chemo should probably be starting at the end of next week or next weekend, so I anticipate we will be here until then, and she also needs to have her MIGB (or whatever it is) study hopefully on Wednesday/Thursday. I guess we will see.
9/10/2011 - Brynlee with mom after extubation
Pathology is officially on the naughty list. The pathologist didn't sign off on the biopsy studies that will help determine whether Brynlee is high risk or intermediate risk, so we have to check back on Monday.
:-P
Here is the good news. The MRI showed that the tumor has shrunk even more, so we know that it is responding to the chemotherapy. They want to try and get her extubated, so ENT is coming to do a flexible bronch, which from what I understand is not the same as the one she had in the OR. I guess with this one they can't suction any mucus out, but they are going to go down and look to see what her tubes look like to see if there is any less compression and what the mucus situation looks like. The hope is that getting out the breathing tube will improve her ability to cough on her own. So we will see how the bronch goes, probably get another chest x-ray, and do the spontaneous breathing trial and go from there. I would love to get her extubated if she is ready for that.
Brynlee has been sleeping peacefully most of the afternoon since her MRI. I think the last few days were pretty uncomfortable for her, so I bet she is pretty tired. It has been nice to see her resting peacefully today.
Thank you again everyone for your prayers, thoughts, support, love, and even more that we are not aware of.
Don't forget to check out Brynlee's picture with Swoop (the Ute mascot) and Cosmo (the BYU) mascot. She was awake, but she was pretty drugged up, so I bet it was like a dream for her with a crazy bird and cat flying above her.
A quick update for now since I don't know when we will get the information that we are hoping to get today.
The MRI is scheduled for 2 p.m. The oncologist said she would look at it today, so I am hoping that will mean they will be back this afternoon/evening to discuss it with us and not make us wait until tomorrow. She also said that she tried calling pathology to see if they have the studies done that will help determine whether she is high risk or intermediate risk, but they didn't answer, so we are still hoping to have that information today. If not, then pathology is going to be on my naughty list.
Brynlee is still having fevers off and on, but her blood hasn't grown anything, so they are still just watching that and hoping that whatever antibiotics she is on is fighting off whatever is causing the fever. Her chest x-ray looked a little bit better today, so hopefully that will continue to be the case. They want to try to extubate her after the MRI if her spontaneous breathing trial goes well. It will also depend on what the MRI shows as far as her compression on her trachea. The Fentanyl still seems to be working well for sedation and pain. Her blood counts are still holding steady. Her ultrasound yesterday on her neck showed no clot, so hopefully that was broken up by her blood thinners.
I might not update until tomorrow about all of the results we are hoping to get today, but if I have some time I will let you all know.
Day #12 in the PICU, but who is counting? Was I really that feisty yesterday? Blair's been at work this week, so I guess I have to be feisty with the doctors since he isn't around to humor me. As for being cold, I do wear long sleeves and I do have a blanket, but the nice male nurse yesterday (Ian) asked me if I was cold when I was all bundled up in the corner in my chair, so he turned up the temp a little bit.
As for updates, the PICU doctors made their rounds while I was at the parent PICU weekly lunch, so I missed what is going on, but her nurse (**Goppeldanger alert** she looks like Reese Whitherspoon, only taller) took notes for me. They decided to discontinue her respiratory therapy because they have been able to suction the gunk out of her breathing tube, and her chest x-ray looked better today. There are no plans at this point to do another bronchoscopy. I guess she had a fever yesterday, and the gunk from her breathing tube did grow out some kind of bacteria, so she is being put on another antibiotic for that, which will hopefully prevent pneumonia or some other infection from progressing or developing.
The molecular scan (I think it is called an MBIG) is not happening today either because the isotope they needed to inject yesterday did not arrive from Canada via Fed Ex. Actually, Fed Ex lost the shipment, which that's a little bit scary; this is nuclear material. Nice huh? We'll put Fed Ex on the naughty list. They only ship on certain days of the week, so we can't get it shipped until next week. Anyway, she is on the schedule for next Wednesday, so we shall see if Fed Ex can transport it here without issue this time. Was that a little bit feisty? I did have a Coke today at the lunch; I should be happy. :-) They are still planning on the MRI happening on Friday to evaluate the size of the tumor and if there is any shrinkage. She will also have an ultrasound tomorrow to see if the clot in her neck has cleared out. The oncologist came in before I got here today, and they are still hoping that the pathology studies on her biopsy to determine the risk category (either intermediate or high) should be available on Friday.
They put Brynlee back on a Fentanyl drip for sedation and pain, which seems to be working well. She doesn't seem as agitated today from what I have seen so far. The nurse also told me that she is supposed to do another straight cath for a urine culture, so I am interested to see if we get another leg retraction when she does that. They also took out the NG tube from her nose that was supposed to be pulling the gas out of her belly as they felt it wasn't doing much anymore and they had noticed some blood in what was coming out of it, so there was some irritation going on in there, but it wasn't enough blood for them to be concerned about.
There are some doctors that I just don't like seeing because every time they come I feel worse afterwards. I know that they are just laying things out there and being honest, but it bothers me. Yesterday before I left the neurologist that did Brynlee's initial EMG study in the ER came by. When I told her that Brynlee had retracted her legs to pain yesterday, she just disregarded it entirely and mumbled things about her reflexes and knee reflexes and who knows what else. So I was a little bit irritated by that. She also wants to do another EMG/NCV because they (neurology) think there is an underlying neuropathy and that her paralysis is not caused by the spinal cord compression because of the sudden onset of her symptoms and blah, blah, blah (I don't remember what else she said). I take issue with this to some extent. I am not a doctor, but I am a mom who has had severe back pain before. My back pain has come on suddenly before, i.e., I was fine before I sat down and then couldn't walk when I stood up because of pain and weakness. So I am skeptical at this point. I can't pinpoint the exact day when all of this started because I am a mom, I am busy, I have lots going on all the time. I think other moms could relate. I knew that Brynlee wasn't feeling well for some days leading up to this, but we thought the problems were related to her reflux and the medication change related to that. I believe that Brynlee probably did have some weakness before the day that it clicked in my head that she wasn't rolling over anymore. Anyway, it's a long discussion, but I'm not going to get worked up about another underlying cause of her lack of movement until they prove something to me about it. The MRI note from the radiologist said it was the cause; I will concur with him for the time being. I talked to the oncologist this morning, and she didn't feel any need to repeat the EMG but left the decision up to me. I told her I didn't see any reason to do it because really at this point we have no idea whether she will recover or not, but an EMG isn't going to change the course of treatment at this point. The nurse also told me yesterday that neurology isn't convinced that what she was having on Sunday was seizures, which I don't think Blair and I were totally convinced of that either. We haven't seen any recurrence of those symptoms off of the antiseizure medication, so I guess we will keep watching. Can you tell that I am finding this whole ordeal quite old at this point? We are a little bit sick of being here at the hospital. Yes, I am probably a little bit feisty today.
I thought that the molecular scan was going to be today, but they are just starting it today. They have to inject a radioisotope dye today and then tomorrow they will actually do the scan. Brynlee's breathing is still not improved. They have been suctioning up a lot of crap through her breathing tube yesterday and today, but her chest x-ray actually looked worse today than yesterday. We are still doing respiratory therapy every 4 hours. Her vent settings are turned down a little bit and she seems to be doing okay, but again there is no rush to extubate since she has an MRI scheduled for Friday and would need to be sedated for that.
They have increased the amount of formula she is getting through the NJ tube. They have also increased her sedation a little bit because of her irritability. She has been pretty uncomfortable with the breathing tube in. It seems like she is gagging on it, which I am sure is a pretty common thing. I wouldn't want a tube down my throat or my nostrils. Crikey!
Her nurse and her respiratory therapist are both males today...awkward. :-0 Let's just say it's very quiet. I've decided the men around this place aren't much for conversation, which is fine, but do they really have to keep it so cold in here?
Brynlee's MRI that was supposed to happen today was cancelled and rescheduled for Friday. I guess they want to give the chemotherapy some more time to work, which totally makes sense to me. I actually thought the MRI she had last Friday was kind of soon after the chemo to be checking for shrinkage, but I'm not a doctor, so...
What's new for today is we have another tube going down Brynlee's nose hopefully trying to get some of the air out of her belly. The nurse said she was able to get a ton of air out (sorry, I don't really know how it all works), but hopefully we can get her tummy feeling better and not so full of gas. They think it could be from the chemo and/or the antibiotics. She is on some sedation to help her sleep and pain medicine but it is just on an as-needed basis. The nurse had something positive happen twice today. Brynlee retracted her legs to pain today. That may sound bad, but it is actually a good thing because we haven't seen her retract her legs for any reason. She was retracting for the Babinski reflex but nothing else. So both the nurse and I were excited about that. We are hoping that it is a good sign. She is also receiving blood today because her hematocrit and iron were low, which can be a side effect of the chemotherapy. They did try to lower her oxygen settings to see how she did in the hopes of getting a plan for extubation, but Brynlee didn't do so well, so there is no plans to extubate, which I don't know how she would have her MRI on Friday without being intubated, so what's the rush? I really don't want to have her extubated just to have to go back to the OR in two days to reintubate. I know that the tube is irritating her and uncomfortable, but I'm in no rush to extubate until Brynlee is good and ready.
Otherwise, it is a quiet day in our little PICU room. We have one of the fun nurses today, so that makes the mood lighter. They are still planning on doing the molecular scan or whatever it is tomorrow, which is where they give her this isotope and it attaches to all of the places in her body where the cancer is, so it should give us a clearer picture and perhaps confirm exactly where the pockets of cancer are in her body.
Two posts in one day. Yes, you guessed it, I am bored.
Today is still a quiet day. Brynlee is working on getting all of the gas out of her tummy, so she has been keeping the nurse busy with changing her diaper constantly. Some days these PICU nurses really earn their money that is for sure. We are going to try some gas drops to see if that helps anything as we think that might be a lot of the cause of her discomfort today. They also decided to take her off of the antiseizure medication and see what happens, so I am hoping that the seizures don't return. She has been twitching today, but we have decided that she has just been really uncomfortable and agitated. I did get to hold Brynlee for a little bit before lunch. She was still kind of restless and it is a bit awkward to hold her with the breathing tube, but I know I will get to hold her and really snuggle her again someday (Blair caught a picture of me holding her that I will post).
The real reason for my post is I need to take a moment and say thank you to so many people. We appreciate the visitors we have had at the hospital, i.e., my parents and Kaitlyn and Marissa, Dr. Hoagland, Heather, the bishopric (who gave us all wonderful blessings), and Dr. Ben (Blair's friend who is a 2nd-year resident at the U). Thank you to my dad for mowing our lawn with our old hand-me-down lawnmower that is not self propelled. I hate it too, but it gives me a good workout. Thank you for the meals brought into our home last week. I don't know who exactly brought things, but I know I need to thank Jackie, Debbie, and Amy. Sorry if I have missed anyone. Thank you to Jason & Christine, the Brinkerhoff's, and my parents for watching the girls this past week. I know they have had a great time and have been spoiled. Also, I turned another year older on Wednesday. Thank you for all of the cards and goodies from so many. I still needed to lose a couple of pounds of baby weight, but everyone is ensuring that won't happen with all of the treats. At least I have a couple of girls to help me take care of that. Thank you again everyone for your support and love!
Yesterday was a rough day. Brynlee started having seizures yesterday afternoon. Her pulse would spike and then she was just out of it and had jerking movements. She had three that the nurse documented, but I think she probably had one earlier in the day, but I just didn't realize what was happening. So they started seizure medication and hooked her up for an EEG. Apparently she didn't have anymore seizures after that and the reason for the seizures was inconclusive. They did another CT scan of her brain to see if the cancer had shown up, and it was "reassuring." I guess that means it didn't show any metastases and there was no bleeding. Many different things can cause seizures, so I guess we just don't know at this point why she started having them. She has had isolated fevers over the past few days but nothing that has really lasted. Her belly is distended, but the x-ray this morning just showed gas. We did change her formula yesterday to what she has been having at home, so I am hopeful that being back on her regular formula will help with that problem.
I know I said this yesterday, but the plan for today is to have a quiet day, so hopefully Brynlee's body will cooperate and we won't have any unexpected surprises. I will try to get the pictures posted of what she looked like with the EEG.
9/4/2011 - Brynlee hooked up for the EEG
As for the plan, we still have to get her breathing stabilized. I know there is no plan for extubation anytime soon. I believe they are still planning on another MRI next week, hopefully on Tuesday, to see if there is anymore shrinkage of her tumor. She will have her next round of chemotherapy in about two weeks, and we are anticipating that we will be in the hospital at least until that time. Otherwise, it is very quiet on the weekend and we are just hanging out for the most part.
I just wanted to reassure everyone that Blair and I have been home every night sleeping peacefully and spending time with Kaitlyn and Marissa. The first couple of nights I didn't sleep hardly at all, but by about 9 p.m. every night we are usually headed to bed exhausted. Some nights we have stayed later if something was going on, but we usually leave by 7 p.m. when the nurses have their shift change and we have to leave her room at that time anyway. It is easy to leave her here because she essentially has a nurse in her room 24/7, and they love her and take very good care of her. Visiting is still fine but just let us know if you would like to visit because some days like if she is having an MRI or something are not the best days. It is quite the production to get her to the MRI or the OR. Thank you for all of your love and support!
No comments:
Post a Comment