10/31 7:30am
Mollie had a great night last night. She endured the respiratory therapy at midnight, 4am and just now with no problems, and now can get the plunger all the way to the top of her incentive spirometer. Dr V just mentioned to me that he was encouraged by the sound of her lungs and that he thought she had turned a corner. It was nice to hear that.
Also, she had no fever last night and her WBC is 1.9 today (more than double what it was yesterday).
He also mentioned that she probably had the pneumonia all along, but without any white cells attacking the infection it didnt show up very well. Now that she is producing the white cells she should have a lot of congestion to expel by coughing, etc - so we will really focus on the breathing treatments and therapy. It is nice to have something tangible to concentrate on after days of relative uncertainty.
Happy Halloween everyone!
10.31.2009
10.30.2009
Hospital: Day #10
Things are looking better this AM. Mollie did spike a fever last night (39.2) but a) was not as high as previous nights and b) came down pretty quickly to normal (37). Her ANC is up around 900 and her breathing is greatly improved.
We haven't heard the results of the CT yet and won't here about the nasal swabs for some time (they sent them to an outside lab).
Matt and I both are annoyed that the hospital seems to undervalue nutrition and hygiene as part of "medical care." The food in the hospital is crap, and Mollie has been eating less and less each day. We have asked several times for proteins shake and multi-vitamins and finally go the OK to give them to her yesterday. And nobody seems concerned that she hasn't bathed or brushed her teeth (We finally got her to do both!) So, we're pushing that pretty hard right now.
Mollie had "reverse" trick or treating this morning; she dressed up as a bat and got 3 bags of loot! All the staff were dressed up and they came by her room and made her say "trick or treat" before heaping treats in her bucket. She got her neupogen shot delivered by a nursing student- that was annoying. It took forever and she was screaming. I believe in students and understand this is a teaching hospital, but they shouldn't practice on a child who has been here for 10 days!
Mollie is in a good mood, energetic, afebrile, and generally happy. We would like to think she's turned a corner... but we know better than to make that declaration yet!
Mollie has been having a great day (other than not eating much). Still afebrile and we're working on clearing those lungs. The CT showed that she does not have necrotizing pneumonia (which is very dangerous), just regular pneumonia. That is probably what is causing the fevers to spike so with the respiratory therapy we're hoping to clear out the gunk and fluid and get the fevers to stop. Dr. Vega says we'll definitely be here over the weekend and once she remains afebrile, ANC shoots up (BTW, her WBC count was 900 today but ANC was only 342), and her lungs sound better, she can go home. They will continue with the neupogen shots until her ANC is around 5000. The shots sting, even with the lidocaine cream, but she is usually completely recovered a minute later. The anticipation is the worst part and she always knows when the shots are coming because they come in and put the Emla cream on her leg 15 minutes before giving the shot.
11 PM Update: I just got home from the hospital and Mollie is goofy and energetic and still fever-free! She's been eating plenty of candy and was so happy with all the cool Halloween stuff that arrived in the mail today. Her hospital room looks like Halloween-land! If I think of it, I'll do a video tour of our home away from home tomorrow.
10.29.2009
Hospital: Day #9
10/29 9 am
Not much change from yesterday around this time. Mollie's fever was up and down again all night last night, and hit 40.1 C at 6:45 this morning. I wish there was better news on that front.
Her counts are continuing slowly to rebound. WBC is 0.8 today, HgB is 9.7 and platelets are 76. The neupogen and RBC transfusion yesterday obviously helped.
No news on the ANC yet. Mollie has been doing really well with her spirometer. This instrument helps make sure she is inflating her lungs well. It's kind of like a big straw that you inhale through and she was very scared of it at first. She just had a chest X-ray and there is a "fluffy" area in her lower left lung, so they are also going to start CPT and some albuterol breathing treatments to help clear that area. She's going to hate it.
Ms. Pam came in and did some school work with her, then we played a goofy game of I Spy that got her laughing (and coughing- helping to clear those lungs), and now she's watching a movie. She just got her neupogen shot- boy did that piss her off. The way she was yelling you would never know she was sick.
At this point, we are still just treating the symptoms, trying to prevent a secondary infection, and hoping the flu will quickly run its course. It is frustrating and concerning. I wish there were signs of definite improvement.
7:45 PM We had a consult with Dr. Murray from Infectious Diseases today. He ordered a CT and nasal swab for Mollie. We don't have the results yet and probably won't until tomorrow. He also wanted to change one of Mollie's antibiotics (to minimize resistance) and start her on an antifungal. He agrees that this doesn't look like a fungal co-infection, so this is empiric treatment. Mollie endured a bunch more tests and treatments today: Chest X-ray, Chest CT, 2 (soon to be 3) breathing treatments, 2 nasal swabs, and a neupogen shot. Not to mention all the antibiotics and being on an IV continuously. Despite that, she is in good spirits right now- singing songs and drawing pictures.
Michelle- yes! she can have candy. They are doing "reverse" trick-or-treating tomorrow- all the staff will come by Mollie's room and bring the candy to her! I hope she's in the mood for it.
10.28.2009
Hospital: Day #8
Getting my update in early today-- Matt reports that Mollie's temp went up and down all night long, but WBCs are up to 0.7 with an ANC of 550 (above the 500 mark- yay!) and her lungs sound good according to Dr. Vega.
Today, she will get a dressing change and they will also change the needle in her port. None of us are looking forward to that, but I know she can handle it. Plus, she'll get another neupogen shot. This definitely calls for something from the present box- it's almost empty after all she's been through recently.
Also on the menu for today are a bunch of phone calls (& probably visits) to our other doctors. Lucy and I are both considered "high risk" for H1N1. My OB just got doses of the vaccine on Monday, so she will probably recommend I get mine and start me on Tamiflu. Lucy's ped doesn't have the vaccine, but may start her on Tamiflu as well and send us on a wild goose chase to find vaccine for her (she is supposed to get the shot, not the mist b/c it is live attenuated). And then Matt will also have to talk to his GP. This is when I wish "family-centered care" actually meant medical care for the whole family. We've been getting little sleep as it is, and now we have to run around and deal with this. I think I might be feeling symptomatic already (although I might just be tired).
Mollie will also get a red blood cell transfusion today. Now that they know the cause of her illness, they will give her the blood to improve/maintain her oxygen transport and just generally to help her feel better. Her hemoglobin has been low for over a week now, so this should really help. At the moment, she is very happy. She is disconnected from everything- no tubes, monitors, needles, etc. and her temperature is only slightly elevated.
Worst port access ever. We had to hold down her arms and legs and they stuck her 3 times! But she's doing better now. Unfortunately the neupogen shot is coming in a few minutes. Fever is still down and she's coloring and working on some school work. We tracked down Tamiflu for the rest of the family and Lucy and I are going to get our H1N1 shots this afternoon.
Today, she will get a dressing change and they will also change the needle in her port. None of us are looking forward to that, but I know she can handle it. Plus, she'll get another neupogen shot. This definitely calls for something from the present box- it's almost empty after all she's been through recently.
Also on the menu for today are a bunch of phone calls (& probably visits) to our other doctors. Lucy and I are both considered "high risk" for H1N1. My OB just got doses of the vaccine on Monday, so she will probably recommend I get mine and start me on Tamiflu. Lucy's ped doesn't have the vaccine, but may start her on Tamiflu as well and send us on a wild goose chase to find vaccine for her (she is supposed to get the shot, not the mist b/c it is live attenuated). And then Matt will also have to talk to his GP. This is when I wish "family-centered care" actually meant medical care for the whole family. We've been getting little sleep as it is, and now we have to run around and deal with this. I think I might be feeling symptomatic already (although I might just be tired).
Mollie will also get a red blood cell transfusion today. Now that they know the cause of her illness, they will give her the blood to improve/maintain her oxygen transport and just generally to help her feel better. Her hemoglobin has been low for over a week now, so this should really help. At the moment, she is very happy. She is disconnected from everything- no tubes, monitors, needles, etc. and her temperature is only slightly elevated.
Worst port access ever. We had to hold down her arms and legs and they stuck her 3 times! But she's doing better now. Unfortunately the neupogen shot is coming in a few minutes. Fever is still down and she's coloring and working on some school work. We tracked down Tamiflu for the rest of the family and Lucy and I are going to get our H1N1 shots this afternoon.
10.27.2009
Hospital: Day #7
Well, things are changing one hour to the next. Last night, Mollie's fever was alarmingly high and would not come down with Tylenol and Motrin. However, around 3:45am it did start coming down to normal (see Matt's comments on the post from yesterday, below). It stayed down until about 11:30 am and then spiked again- Mollie was not looking well- her lips turned blue and she had uncontrollable shivering. She's perked up a little now.
Her labs came back this morning and her WBC count is up a little and her ANC is 330. So that is a good bit of news. They also did a CRP test, to determine whether she was having an acute inflammatory response and it came back a little elevated, but not alarmingly so. The medical team is leaning toward a viral cause for the fevers and they have moved us into an isolation room because they are testing for flu and starting Tamiflu. Switching antibiotics again (stop clinda, back to vancomycin).
More waiting and looking for that ANC to come up. We're doing our best to keep her spirits up and her body strong.
Mollie did a super duper job with her neupogen shot and nasal aspirate today. She was really scared of both and she was also still febrile and feeling terrible. The nasal aspirate involved sticking a tube down her nose to suck out a sample to analyze for flu. The respiratory therapist who did it was wonderful and quick and it was over before we knew it.
A lot of people are asking what to send Mollie- right now she's really into books, stickers, any kind of arts and crafts projects. She also loves getting clothes for her baby dolls and build-a-bear and new games for her Leapster. Today we'll "redecorate" since we moved rooms and we're hoping Ms. Kym will stop by with some projects sometime when Mollie is not febrile!
Update @ 4:30 pm: Mollie spiked another fever that has just come down a little and she has perked up a lot! She actually let me wash her hair (finally!) She's making flower fairies and just ate a turkey sandwich, a bag of chips, and some Halloween candy. Dr. V just came in and said that her chest x-ray earlier today showed that she had some fluid in the lower lobe of her left lung, but the rest of her chest is very clear and her oxygen saturation is 100%. This finding is consistent with a virus (flu), so he thinks the Tamiflu and increasing counts will get this to resolve. He also said this may explain the high fevers and her antibiotic coverage is appropriate for this situation. He's hoping her ANC will be over 1000 within 3 days.
Mollie finally looked at her video postcard from her cousin William- she loved it! So if you want to send a video message, just e mail me: sarahdmertz at yahoo dot com
Okay, so Mollie's flu test just came back positive. Most likely it is the novel flu (just given the way the flu season is going). Honestly, it's scary, but I actually feel more relieved that we know what is causing the fevers and we are treating it the way we should. Dr. J thinks that she may have acquired the flu since she's been in the hospital and that she actually had sinusitis or a bacterial infection when we came in to the ER last Tues.
I think Mollie had a good day today- she looks better than she did yesterday, in my opinion. She spiked another fever tonight; hopefully it will come down before too long and she will be able to rest a bit better tonight. She's a fighter. We're counting on that and some neupogen and Tamiflu to help her kick butt on the flu. And cancer.
Her labs came back this morning and her WBC count is up a little and her ANC is 330. So that is a good bit of news. They also did a CRP test, to determine whether she was having an acute inflammatory response and it came back a little elevated, but not alarmingly so. The medical team is leaning toward a viral cause for the fevers and they have moved us into an isolation room because they are testing for flu and starting Tamiflu. Switching antibiotics again (stop clinda, back to vancomycin).
More waiting and looking for that ANC to come up. We're doing our best to keep her spirits up and her body strong.
Mollie did a super duper job with her neupogen shot and nasal aspirate today. She was really scared of both and she was also still febrile and feeling terrible. The nasal aspirate involved sticking a tube down her nose to suck out a sample to analyze for flu. The respiratory therapist who did it was wonderful and quick and it was over before we knew it.
A lot of people are asking what to send Mollie- right now she's really into books, stickers, any kind of arts and crafts projects. She also loves getting clothes for her baby dolls and build-a-bear and new games for her Leapster. Today we'll "redecorate" since we moved rooms and we're hoping Ms. Kym will stop by with some projects sometime when Mollie is not febrile!
Update @ 4:30 pm: Mollie spiked another fever that has just come down a little and she has perked up a lot! She actually let me wash her hair (finally!) She's making flower fairies and just ate a turkey sandwich, a bag of chips, and some Halloween candy. Dr. V just came in and said that her chest x-ray earlier today showed that she had some fluid in the lower lobe of her left lung, but the rest of her chest is very clear and her oxygen saturation is 100%. This finding is consistent with a virus (flu), so he thinks the Tamiflu and increasing counts will get this to resolve. He also said this may explain the high fevers and her antibiotic coverage is appropriate for this situation. He's hoping her ANC will be over 1000 within 3 days.
Mollie finally looked at her video postcard from her cousin William- she loved it! So if you want to send a video message, just e mail me: sarahdmertz at yahoo dot com
Okay, so Mollie's flu test just came back positive. Most likely it is the novel flu (just given the way the flu season is going). Honestly, it's scary, but I actually feel more relieved that we know what is causing the fevers and we are treating it the way we should. Dr. J thinks that she may have acquired the flu since she's been in the hospital and that she actually had sinusitis or a bacterial infection when we came in to the ER last Tues.
I think Mollie had a good day today- she looks better than she did yesterday, in my opinion. She spiked another fever tonight; hopefully it will come down before too long and she will be able to rest a bit better tonight. She's a fighter. We're counting on that and some neupogen and Tamiflu to help her kick butt on the flu. And cancer.
10.26.2009
10.25.2009
Hospital: Day #5
Well, the news today is neutral or good, depending on how you look at it. I am thinking positive...
Mollie's counts are up a little bit (not statistically different than yesterday, but ALL the numbers are up slightly). WBC = 0.4 (no appreciable ANC), Hgb 8.4, and PLT 76. So, the plan is to do continue on the same course. If we can't get the fevers to stop, then they will probably start considering that this might be a fungal infection. That could be very serious, so we're really hoping those numbers come up and the fever doesn't!
My goal for the day is to wash Mollie's hair. She is very, very protective of her port and won't consider letting us hep lock it and tape it up so she can bathe. The hair washing will probably take place in the sink- but I think it will make her feel better!
Update: Mollie spiked a very high fever around noon today. It came down with Tylenol and she has been slightly above her normal temp all day. We had a nice visit from her teacher, Mrs. S. It was a good distraction for both of us and Mollie perked up and was very talkative after getting the tylenol. She has spent the rest of the afternoon watching netflix on my laptop. In my opinion, she's just not feeling as well today as she was yesterday, although she says she's just more bored. And I still haven't been able to wash her hair (although the boo-eauty salon is a great idea).
Mollie's counts are up a little bit (not statistically different than yesterday, but ALL the numbers are up slightly). WBC = 0.4 (no appreciable ANC), Hgb 8.4, and PLT 76. So, the plan is to do continue on the same course. If we can't get the fevers to stop, then they will probably start considering that this might be a fungal infection. That could be very serious, so we're really hoping those numbers come up and the fever doesn't!
My goal for the day is to wash Mollie's hair. She is very, very protective of her port and won't consider letting us hep lock it and tape it up so she can bathe. The hair washing will probably take place in the sink- but I think it will make her feel better!
Update: Mollie spiked a very high fever around noon today. It came down with Tylenol and she has been slightly above her normal temp all day. We had a nice visit from her teacher, Mrs. S. It was a good distraction for both of us and Mollie perked up and was very talkative after getting the tylenol. She has spent the rest of the afternoon watching netflix on my laptop. In my opinion, she's just not feeling as well today as she was yesterday, although she says she's just more bored. And I still haven't been able to wash her hair (although the boo-eauty salon is a great idea).
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10/26 830am (from Matt)
Mollie had a very difficult night last night. Her fever ran all the way up to 39.4 C just after midnight, and it took three doses of tylenol, at 1230, 3 and 430 am to turn it back down to 37.9 C, as of 6am. At 8am it was still down, to 37.4 C. This is the only small bit of good news at this point.
Dr V (the new attending) came by earlier and Mollie's counts are slightly down from yesterday. She still has very low white counts, no measurable ANC, and is neutropenic. Several versions of plan B are under consideration right now.
They may begin treating Mollie for a fungal infection. We have been told that this involves some significant side effects, but have not gotten into specifics although Sarah researched it and has a good idea. Mollie may get neupogen shots to boost her white cell count - she has had these before and responded well (aside from loathing the shot itself). She may get a CT scan to further evaluate her sinuses and clarify the possibility of whether this is a sinusitis of some sort. She may be tested for the flu, although this would require that she be moved outside the forced airflow isolation ward and therefore isnt likely due to her neutropenic condition. She may receive an IgG infusion as we mentioned before. She may receive a blood transfusion to boost her red cell count. They may for now simply continue status quo (clindamycin and cefepime antibiotics), in the hopes that whatever this is resolves that way. We will know soon enough what seems to be the best course to follow and get busy following it.
For her part, Mollie is fighting a courageous battle against something that is nasty as can be. Whatever this infection is has withstood 6 days and counting of powerful antibiotics. Mollie understands very well what is going on and is willing to do whatever is asked of her. She takes medicine without protest, allows the doctors and nurses to examine her, take her blood pressure and temp etc, and her only complaint has been that she is bored (surprise). We are confident that despite the lack of positive news today that Mollie has the will and determination to beat whatever is attacking her and get the heck out of here. It just may take some time.
Update @ 10 am (Sarah)
Mollie is in good spirits this morning. She is painting wooden figurines from Michelle and wearing a locket with a photo of Lucy in it. We are hoping they will let us bring Lucy in here for a visit- it would be nice to have our whole family in the same room for a few minutes! Mollie's diet has been pretty good- this morning she ate pancakes, 2 cups of OJ, cereal with milk, and half a bagel with cream cheese! She's not having any symptoms other than the fevers and cough.
The plan, according to Dr. V is to give the neupogen (GCSF) shots, starting today, to help get those counts up. He has reassured us that it is not unusual for children run unexplained high fevers when their counts stay low. The cultures (bacterial and fungal) continue to be negative and he thinks the cough is due to post-nasal drip. So, it's more of the watchful waiting.
Matt and I are both scared and I think last night was a very low point for both of us. We are very thankful to Michelle and Marv for helping out so much with Lucy and we're glad that Matt's dad is coming sometime today to help out. Mollie beat both of us at a game of Trouble before bed so we're looking for a rematch sometime today!
Meant to post photos of the haunted house, but I forgot my camera!
2 PM (Sarah)