Posted by Steph in
Chemotherapy, Feelings, on Friday, July 13. 2007 at
I was looking back in the blog, and early in this journey, thoughts and feelings were more difficult to record, but I realize, even without the journal, I can't forget, although I wish I could, for the most part.
I remember our first hospital room, off in the corner, thought it wasn't a bad room. It was by the stairway so sometimes the door slammed a lot, mostly in the early morning hours. It was always a corner that people would go to talk on their cell phones, to get a little privacy, I guess. The room would have two patients, one by the door and one by the window, with a curtain separating them.
I remember I didn't like being by the door and couldn't wait for us to move to the window side, and at that time, it was only because I got little to no privacy when I needed to pump breastmilk for Aubree when I was there.
I remember the first family that we roomed with. Their little girl, a baby in fact, had eye surgery because she had cancer of/in her eye. In fact, it is Grace's carepage that reminded me of today. I got an email that they updated their journal. She has been cancer free since her surgery. It would be the first of many roommates that I barely said hello to. I haven't ever been too big on socializing, and this wouldn't change too soon.
I remember after Grace went home, we got our second roommate, after Scott moved our stuff to the window side. The little boy was a bit younger than Asher and also had brain cancer.
I remember being tired, but finding I couldn't nap at all with the people and the noise. This wouldn't change too soon, either, unfortunately.
I remember the first time Asher threw up. He didn't look so well in the playroom and we began our walk back to the room from the playroom and I was carrying him. That's when he threw up, down the back of my shirt. That was my first lesson in two things (1) bring extra clothes to the hospital even if I'm not staying overnight and (2) always bring a large plastic vomit bin when walking in the halls or going to the playroom.
I remember the sick look on Asher's face, in his eyes, in his expression.
I remember the fear on Alexa's face when she saw Asher throw up in his bed for the first time. She immediately wanted to go home and that made me sooooo sad!
I remember the joy it brought to Asher to see the girls and I come to play with him and to see him! He loved to hold Aubree and help take care of her. He's such a good big brother!
I remember being so scared, so angry, so unsure how I was going to watch Asher go through chemo and how I was going to help him feel better or pass the time.
It was one year ago today...so many memories...so many thoughts and feelings...and I pretty much can't really come to say anything wise, except, if it weren't for chemo, we wouldn't be where we are today!
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Friday, March 30. 2007 at
Day 17 post stem cell infusion
I remember when we started, the Dr. said that we would be probably going home between day +15 and day +25. 4 weeks has sure gone quick for me.
Today should be the day we go home, as long as something unexpected doesn't happen. Asher will do his normal hospital stuff for just one more day.
Asher woke up at 8am today and said "I need to take a shower and take one nap". Exactly what mommy told him. He's got such a good memory.
You'd figure today would be the day for what happened right after that. First, had to use the urinal. So, with that out of way, in walks someone we had never seen before, she looks at Asher and he goes "DADDDDDDDDDDDDDY!"
So, she asks him where to put the "little huggie" on and he points to his leg. While she's trying to figure out to use the blood pressure monitor machine hanging on the wall, she whips out her Temporal Thermometer (the one that you swipe across the forehead that every patient shares) and proceeds to ask Asher if he's ever seen one of those before.
Okay, so I've let her have some fun trying to do things the right way (at least she had all of the precautions right) and so now I stepped in and said 'Whoah, hold on, you can't use that on him, he's got his own, he's a transplant kid. do you know all of the rules?'. She proceeds to tell me how she's from the third floor and they've taught her "all about" precautions.. 'See, I have the gown and mask and gloves on' she says...
So, I let her finish up taking his temperature under his armpit with HIS thermometer and weigh his pee and then when the nurse came in, expressed my desire to not see that PCT again until she has been properly trained on transplant.
So, now Asher is watching Mickey Mouse Clubhouse and hanging out in his bed. I'm going to start to bring stuff out to the car in preparation for discharge and get my Caramel Macchiato.
-- Update 12:15 --
The doctors came in today and really only had two things to say. First, the neupogen will not be given today due to Asher's counts, and second, the last dose of meds will be started around 5:30 and we can go after that.
Counts from 04:45
Our nurse said that's the highest ANC that she's ever calculated. I guess the wbc of 29 is the reason for no neupogen today. The nurse said that with the marrow starting to come in like it is with neupogen it just shot the white blood cells up that high today, it's not an indication of anything like an infection.
Asher pooped at about noon and they are going to do a cdiff culture on it since they have the opportunity. We've also been asked to bring a stool sample to clinic on monday because they want to continue to make sure it's not coming back.
I've started to load stuff into the Car in preparation for leaving and also have been slowly taking things off the walls and off the ceilings.
Asher's in a decent mood today and really has wanted to just watch TV and play with a few toys in his bed.
-- Update 16:30 --
Asher has been sleeping since shortly after 2pm. He was looking very tired in his bed and when I asked him if he wanted to sleep in the couch (daddy's bed) he said yes and basically fell asleep the minute I left the room to bring some stuff to the car. Besides changing one diaper, he's slept solid for 2 1/2 hours and I've fully loaded the car with stuff in the room.
Everything is done besides the last antibiotic and once that is finished, we'll give Asher a final shower, do a dressing change, clean off his broviac and get him new ends. He's got some shorts and a shirt here too. Then, the discharge papers will be signed and we'll go meet mom and the girls at the SUV.
I guess the nurses here all line up and blow bubbles when Asher is done and leaving. I hope Asher enjoys it.
Posted by Steph in
Chemo Round 6 & Transplant, Home after Treatment, on Thursday, March 29. 2007 at
1. No crowds or public places-if Asher absolutely had to go into the
store(for example), he needs to wear a mask and wash hands after.
2. No construction or musty places-if he happened to be passing thru a
construction zone he has to wear his mask
3. Avoid being outside on windy/dust blowing days-if he is outside, he
needs to wear his mask
4. Avoid sick people-if you or the other kids are sick, try your best
to separate the sick and healthy people in the house
5. Visitors or other family can come visit as long as they are
healthy-they don't have to wear a mask in your house unless u want them
6. Encourage hand washing, hand washing, hand washing!!
7. Asher does not have to wear a mask if he's outside in the fresh air
going for a walk or at the park or when around the house. He DOES need
to wear a mask if he goes to a public place, including coming to clinic
or the hosptial building.
8. When Asher comes to the clinic he does not need to wait in the
waiting room. Tell the receptionists he had a transplant and so you
need to bring him straight back. They will take his vital signs and
then take him to a room so he doesn't have to be around the other kids.
9. Daily bath or shower.
1. Change the house air filter once/month.
2. A good clean including dusting blinds, ceiling fans is needed. Then
regualar cleanings is fine of the main living areas. When you dust and
vacuum, have Asher out of the room until 30 mins after so the dust has
time to resettle.
3. Bathroom-have chlorox wipes or cleaner available (but childproof!)
so you can clean the sink counter, toilet, or tub before each time Asher
uses them. You don't have to clean before every child uses things, just
before Asher does so it's clean for him.
4. No plants/flowers in the house. Keep them outside.
5. Cats or dogs are ok. Let me know if you have any other animals. He
should not be around birds, reptiles, aquariums, etc. No zoo.
6. Don't let Asher play or dig around in the dirt or in anything that
may have lots of bacteria, spores, fungus, etc.
Things to be concerned about and call the clinic:
1. SEE YOUR HANDBOOK-section 14
2. Fever of 101 or higher-you must call no matter what time of day
3. Temp of 100.4 to 101-Recheck 30-60 mins later, do not give Tylenol.
If goes down on it's own then u don't need to call unless you are still
concerned or he's having chills or other problems. If it stays at the
temp or goes up, then call.
4. Do not give Tylenol unless he doesn't have a fever and u want to use
for pain. We don't want to mask a fever.
5. You don't need to take his temp unless you think he has a fever
6. If he has a fever, expect to be told to bring him to the clinic
(daytime on weekdays) or the ED (nights or weekends) and that he'll
likely need to be admitted for at least a couple days for IV
7. When you call the clinic with any concerns,
if during the day on weekdays ask for the clinic
nurse for bmt patients
if during the nite or on weekends-ask for the BMT doctor on
**We want Asher to play at home and go outside for walks or quiet play
at the park. No bike riding, climbing anything, or activities that
could cause injury though.
***His nurse on Friday or myself will review all the presciptions with
you before discharge. We'll send you home with a medication sheet that
lists all his meds and when to give them.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Thursday, March 29. 2007 at
Day 16 post stem cell infusion
Counts from 04:00
platelet 54 (look at that, going up on their own!!!)
Asher will get neupogen today and tomorrow because his ANC is close to 1000 and they want to give him a good boost before GOING HOME.
The doctors said that everything was ready for us to home tomorrow evening (7pm-8pm) if we still wanted to do that. if not, we wait until monday. If we go home on Friday, there will be two clinic appointments - Monday & thursday.
Asher is doing good today after waking up about 9am from the nurse coming into check him out and weigh him (16.3 kg), but mentally he has no desire to talk to anyone, play, or even be nice. All of the people who have been in during morning rounds have gotten the scowl or a "daddy hold my hand". The minute the leave he's back to a happy boy.
I need to run and get some prescriptions filled, so child Life will come in to play with Asher for up to 30 minutes while I'm gone. Thankfully the pharmacy is about 2 blocks down so it should be a quick trip.
-- Update 11:30 --
Okay, all scripts are at the pharmacy getting filled. I did forget to write down the dosages prior to bringing them, but we got 7 prescriptions that need to be filled. Most of these are apparently available over the counter at places like Walgreens, but I had the pharmacist just get them for me because some of them are probably more expensive than my co-pay and it's easier under the current circumstances to just pick them all up at one pharmacy instead of running around. All of this will be ready to pick up on Friday.
Biotine Mouthwash - 2x a day
Nystatin - 2x a day (actually, only needed if he has mouth issues/thrush or something like that)
Oxycodone - PRN for pain
Ondansetron (Zofran) - PRN for Nausea
Hydroxizine - PRN??? for ???
The doctors had good things to say today. Asher has had 10 days of negative cultures as of Friday, so they said they wont' be giving the Saturday dose of the Antibiotics. We're ready to discharge on Friday evening after 7pm, after the friday night dose of antibiotics (6pm-7pm). We would go home after the dose and then the home health nurse would meet us to go over the TPN and hook it up for the first time. it's also recommended that we either give Asher a non-iron multi-vitamin or inject a multi-vitamin into the TPN. That means the flintstones complete we have won't be okay for Asher and we'll need to get another vitamin without iron for the next year or so. There are a bunch of them out there, especially the gummi ones, so we shouldn't have a problem according to the nutritionist. We don't want iron in the vitamin because of the amount of red-blood asher has gotten (high in iron) and may be getting, little kids can't have an overload of iron. Any vitamin that has < 200% of the daily allowance of stuff is okay, no matter the brand. She said that there's a good "beauty and the beast" vitamin in the shape of Belle available, but she wasn't sure Asher would like that too much, LOL.
They're going to give us a special toothbruth to use with Asher that's especially soft and if we can brush the teeth a couple of times a day, that'd be good.
The TPN today is going to be running over 18 hours and will be 65% of his daily calories and 75% of his protein for the day. As of right now, Asher has two cheese hotdogs sitting in front of him that he asked for. He did eat a couple of bits, but said "I need to let them cool off" and isn't eating any more. Hopefully he'll have a few more bites.
They want us to try and keep food records at home so that we can bring the information to clinic in hopes of removing the TPN after a week, if not sooner.
While I was out at the pharmacy (20 minute trip), Asher chose to just sit and watch TV. he didn't want child life to come in, and he did great. he did say that he "called for me" and then I came, so he must have done it right when I was getting back.
Also, this morning, the social worker stopped in to see how Steph was doing and found me here, so she talked to me for about a minute and then said she was going to go and call Steph.
That's about it. Asher really wants to watch TV & play Sponge-Bob ps2 game. Should be a good quiet day.
Posted by Steph in
Chemo Round 6 & Transplant, Home during Treatment, Hospital Stay, on Thursday, March 29. 2007 at
She gave Scott Rx which have to be filled before Asher is discharged; so Scott will drop those at the pharmacy down the street from the hospital tomorrow.
If Home Health can deliver TPN, pump(s), and anything else needed through them, on Friday (3/30) AND a nurse can come out Friday (3/30), Asher will be discharged Friday (3/30). If Home Health can't get everything that fast, then Asher has to stay at the hospital till Monday (4/2).
Sounds like Asher will have clinic visits, at the hospital, twice a week at first. Also, until Day 100 (100 days post stem cell transplant), Asher will be under the care of the transplant team and after that he will go back to care under his oncologist.
I think Asher would have his first post-treatment MRI at the end of May (90 days after his last one) and then every 3 months for the first year, or maybe it is 90 days after transplant, I'm not sure, have to check on this.
If I think of more I will post it in this blog entry.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Wednesday, March 28. 2007 at
Day 15 post stem cell infusion
Counts from 04:00
Asher has really kicked up the whining a notch and basically, whenever a nurse is anywhere near him, he whines about it. Last night, everytime a nurse was in here to do something (lines, diaper, blood pressure) Asher would whine 'daddy, daddy, hold my hand, daddy daddy'. Not sure what triggered the start of that behavior again.
Asher took his oral Acyclovir last night in a syringe mixed with Cherry. That wasn't how we wanted to do it, but Asher squirted it in and then drank a little water to wash it down. This morning, he did another dose with the powder mixed in about 5 mL of milk and that wasn't a problem. So, Acyclovir and milk is probably a good combo.
Also, last night, Asher ate 5 mini-ravioli and 1 meatball from a Chef-Boy-R-Dee can that I brought from home. He kept it down without gagging. I saved the rest of the can, so I'll try and give him some more of it today, maybe he'll eat later after his TPN stops at 9am.
The night nurse brought some oral zofran to have on-hand if there was any nausea, but we didn't use it last night and it got disposed of this morning.
Asher's had 3 messy diapers during the night and peed quite a bit. When he's awake, he's still be consistently using the urinal as Steph has mentioned a couple of times.
Today, there really shouldn't be any surprises. I noticed he has some petekei under his left eye, which showed up yesterday a.m., which is usually an indication of low platelets, so we'll see when counts come back. He'll be on Normal Saline for fluids today and again, they asked me to see if he could drink. For the most part, it's all the same stuff that Steph has talked about for the last few days.
Right away when Asher woke up today (around 9am) he looked at me and asked to play a game on the TV - spongebob. So, off to play spongebob battle for bikini bottom PS2 game.
-- update 3:30 --
Asher is choosing not to participate with anyone today.
PT, speech, Psychologist all were basically ignored by Asher, and he even took to hiding under his superman blanket during one visit. Even the NP, who was in earlier this morning couldn't get Asher to play frogs & lizards with her. When PT was in here, I even tried to "leave" for a few minutes to see if he was being 'shy' for my benefit, but it didn't matter. As always, PT said he looks really good and she has no concerns for him as we were able to get him out of bed at least standing and walking.
A new speech lady came in that he had never seen before and she tried really hard to engage him, or make him laugh, or at least talk. I did warn her that he's used to her collegue and that it takes him days to warm up to someone, and in a few minutes she decided that I was right and left.
The psychologist who administered all of our pre-transplant tests "just stopped by" and tried to just talk to Asher for a few minutes, but he buried his head in the pillow. She tried just about all of her bag of tricks to get him to engage, but she saw it was not worth it after a while. After she left, I could see her go over to his chart and write some notes. I suspect she was writing some follow-up notes on his current mental state. When I gave her to 20 second version of how people were using the 'H' word so much, she seemed to understand, and seemed to empathize with the fact that he must be getting tired of being stuck in this small room.
at 3:30, Asher just asked for his favorite child life lady to come in to see him. He has said he doesn't want the other ladies to come, just his favorite one. He's going to trade some of his tickets in for a toy. When she walked in, he was being pretty shy, but after a few minutes of playing, now has started to play with her. He seems to be having a good time with his Elmo toy (from a nurse) and his two lizards.
Asher looks really tired and will probably fall asleep soon.
-- Update 17:00 --
Not remembering if it's been mentioned in the blog before, but I just noticed that Asher really looks like he has a sun tan. Almost his whole head / arms / legs look brown. His face isn't as dark, but you really can tell when he turns his head and you look at him from the back when the shade is up. He really looks like he has a tan. Will be interesting if it turns out to be permanent, cuz I think I remember them saying it's permanent on some kids and not on others.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Tuesday, March 27. 2007 at
Day 14 post stem cell infusion
RBC Morphology - anisocytosis (variation in size of RBC's) slight & polychromasia slight
Chest xray is clean and "quick" nose swab tests are negative (as I figured they would be....he always just gets this runny nose after aggressive chemo).
The social worker came in to talk to me this morning. We had a good talk about this and that, personal stuff to me. I know I have mentioned this in the blog before, but she said she is even going to look into counseling and my insurance for me to get me started since I said I think I will need that now that this is "over." It will never be over for me. She said something really interesting to me that I have never heard before....she said she doesn't like the words "counseling" and "therapy" because if you find the right person it is more just about "growing" in your life. Very interesting point of view. I like this social worker. Hopefully I can find someone like her on the "outside."
I think I have finally figured out where Asher's irritation is coming from....I watched him really closely this morning....first it is all the new nurses that Asher has never met....second, it is that the nurse comes in and first thing he says today is, "Asher looks great. As soon as he eats he can go home." DOWNHILL FROM THERE!! And, honestly, if one more person says the H--O--M--E word in front of Asher I'm going to lose it more than I did today. I said, "No more saying HOME in front of Asher; put up a sign on the door so every nurse and doctor knows." They haven't even switched him from IV meds to oral meds and that has to be done prior to Asher going home. Asher CAN go home on nutrition and IV fluids, and if he just can't eat yet, he can't eat. And, truly, the doctors and NP need to get on the same page and write things down they tell me because yesterday the NP told me NO fluids during the day so Asher will be more thirsty and this morning the doctor said NO WAY she would consider that, he needs fluids. Whatever, just get on the same page. I don't want to be told different things from day to day.
It really has become a point of frustration for me....the new people to Asher, the mixed messages, them telling Asher (well, me, but in front of Asher) that it is his fault he can't go home right now (that's what he hears when they say he has to eat in order to go home)....and he does try. They forgot his breakfast I guess because I actually called at 9am and it is now noon and the food just came (after it got reordered)....he has a piece of french toast in his mouth that he still hasn't spit out or swallowed. Not all kids are the same and maybe some eat, but Asher takes a bit longer I guess, so the doctors just need to deal with it. Whatever doctor is on call the week we are dealing with it or talking about going home, that's the point....
After I got frustrated, to the point of tears, with the doc (no NP today) and nurse in the room, Asher's mood completely changed. He was almost smiling, he liked his frog and lizard again, and he even started talking to the doctor (and 10 minutes earlier he had slapped her hand while she was going for his diaper and then she yelled at him for hitting her). I even told her the reason I don't talk to the doctors is because they don't stop and listen....I was trying to talk to this doctor this morning and she just kept interrupting me saying, "This is the first time you are telling us this" (the part about not to tell Asher about "home") and I said, "Yes, it is, so please let me finish telling you what I am trying to say...." Asher started to say, "Yeah, my whole family is at home. I want to tell Daddy to take lizard and frog home cuz Lexa would probably like them. And Aubree too."
It is hard to sit in the hospital when he's technically not sick anymore or receiving chemo or anything like that. For some reason I am having an especially difficult time this go round and I think it is because after 10 months we are dealing with doctors and nurses (transplant team) that truly don't know Asher and aren't really hearing what we're trying to tell them about Asher. It is a process, it is something we have to do, but it isn't easy, especially with the emotional mommy stuff I have. Most of the time I just sit and observe and keep my mouth shut, and get emotional. Usually I don't know why Asher is acting the way he is (mean to PT, slapping a doctor, not wanting a prize/new toy....) but today I figured it out.
I brought out several toys for Asher from 12pm-2pm today. We blew up a punching balloon and played catch. The first one had several holes in it and Asher had a good time laughing as I tried to blow air in and air blew out on his face. Then he played trains for a few minutes. Then he colored in his Spiderman Coloring Book that he got in the mail as a gift. I was so impressed with how well he was holding his blue crayon and he even seemed to be coloring inside the lines (course when I commented on him doing that he started going out of the lines and giggling about it). Around 2pm he started to get tired and I let him watch TV before his shower and dressing change. OT came in, a different gal than last time, with items to do an evalution on Asher's motor skills and I told her it was shower and dressing change and naptime....so....I told her either come earlier in the day one of the next few days or we'd have to do it outpatient, so guess we'll see. He's been sleeping since around 3pm.
Asher's dressing is now tegaderm again. He can have it changed every other day or every 3rd day and we can't get it wet in the shower.
The NP came in and just chatted with me....she said she was sorry she couldn't be here this morning, she was doing a transplant with another patient. She said a lot of the frustration could have been eliminated had she been here, because she has also been calling Scott every day and she does know what Scott says too, and the doctor just didn't know everything. The NP has been our one consistent person throughout the past 4 weeks. Anyway, so we talked things through .... I need to decide by tomorrow if I want to give Asher a NG tube or I want him to go home on TPN....if TPN, she only wants to see it go for a week at most. So starting tonight Asher will try to get his first oral med and then tomorrow, both of his oral meds. She also reminded me that someone needs to clean the house before Asher goes home (especially since we have had workers there)....so....I suppose I need to make the time to do that as well....his antibiotic is done Saturday....So we're looking at Asher going home sometime soon, between Thursday and Sunday most likely.
I keep telling myself we're so close to being outta here....just one more day, one more day, one day at a time. I have started a lot of blog entries, and not finished, regarding how I "feel" lately and I know there is just SO MUCH emotion in me about this being "over." I know I have a lot of fear concerning being in the "out of treatment" phase. I know I shouldn't let fear control me. I know I "should" feel happy. I know I should celebrate. But, it isn't that easy, or that simple. (Thanks Kathleen for the guestbook entry that helped me see why it is I feel this way and that I'm okay and normal....)
Thanks, to SO MANY of you, for following Asher's progress and uplifting our family in prayer!
Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Monday, March 26. 2007 at
Day 13 post stem cell infusion
RBC Morphology - anisocytosis (variation in size of RBC's) slight
WBC Morphology - toxic granulation present (increased number and prominence of the azurophilic (primary) granules; seen most often with bacterial infections and in association with cytoplasmic vacuolization)
Asher's okay today. Coughing lots (I really don't think this is a platelet reaction....I think he's sick with something), really bad runny nose when he is sitting up, just kinda blah today. Had a few smiles, but other than that, blah. Laying down. Watching TV or napping. He was mad at PT and wouldn't cooperate. He gave his mad face to the doctor and NP. He's been irritable. He just doesn't seem to feel too well but he is okay. He is peeing in the urinal only (not his diaper) since midnight last night. He has had several really small messes in his diaper but hardly anything to weigh on the scale. The doc and NP say he looks good. They want him to eat and then he can go home. I don't see that happening too soon. Tonight when they hang the TPN it will hang for only 12 hours and be 50% of his calories and they will NOT give any additional fluids the other 12 hours, so they can see if Asher will drink tomorrow. They will only give him a one day chance. So, tomorrow's the day. Today Asher refused all food and drinks and said, "I can't eat, I'm coughing right now." I'm not real big on pushing him....it isn't even a month post chemo, or two weeks post mouth sores or vomitting, and I think it is a lot to ask of him to eat. I have told him the sooner he eats the sooner he can go home, but I am not pushing him more than just telling him that. I am a bit worried about the cough, actually. They already came and did a chest xray (about 25 minutes ago) and they just did a nose swab too.
Asher weighed 16.2kg at 6:30pm. He also had to have his nose swabbed again! They only had snot from the first swab, no cells. I forgot to mention, the PCA was taken away this morning. Asher had pushed it one time this morning and later on, by a couple of hours, he cried, "I need my button." He hasn't asked since then. He continues on with no fever, just the cough and runny nose now. I was surprised when I saw his butt owie (otherwise known as the skin graft site that was to finish healing his head, which didn't take) last night, it was almost healed. Just a tiny area of the skin remains "open." I continue to put bacitracin and a 2x2 gauze on it at each diaper change to keep the yucky stool off of it. He continues to use his urinal (with no accidents) but is still having a greenish color stool every 2 hours or so. I think the C.diff medicine ends this coming Saturday, so maybe he is still recovering a bit, or maybe that is just how it looks with TPN and nothing in his tummy. He did try one bite of hotdog tonight, with ketchup on it, and just about threw up, so I let him spit it out. I'm tempted to just NG tube him tomorrow to get going with the food thing. He does need nutrition and he isn't going to eat. He won't eat with a NG tube either, but at least he will get "food" (formula) in his tummy and not have TPN going into his veins which isn't the best long term anyway. So....anyway....Asher had a good nap on the couch today, but it was short because I had to wake him for the chest xray (which still really scares him because of a big machine in his room, two strange people in his room, and I have to wait outside the door)....but he seemed in a better mood late in the day and we just finished playing Zingo and now he wanted to watch Nemo. He's going to fall asleep soon. Tomorrow will hold more of the same. Not a lot going on this week I don't think.
The transplant NP asked me why Asher looked different. She said, "Are his eyes swollen?" I said, "I noticed it too after being gone 3 days, but I think it is just that his eyelashes are all gone now." She looked closer and she said, "Yup, that's it." After being with him a full day now he looks "normal" to me again
Asher earned 3 tickets today and he just put them in his piggy bank. He earned 1 for his dressing change and 2 for 2 nose swabs. His nurse awarded them to him but he was kind of upset at that moment so she had just put them on the table. He'll be excited to trade 5 tickets for a prize tomorrow I am sure!
He's still not asleep. He was talking and being silly with his favorite night nurse. She was thrilled to see him sitting up and talking to her and she said he looks really good.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Sunday, March 25. 2007 at
Day 12 post stem cell infusion
Asher's counts appear to have stabilized today, if you can go by one day as an indication of anything.
Counts from 4:30
Asher's ANC didn't go down hardly at all since yesterday. Hopefully that's an indication that his body is going to take over and the neupogen isn't artificially propping him up.
Asher's pretty tired still today after waking up around 8:30 am. He is yawning often. He was complaining of pain during the night, so we pushed his button 3 or 4 times. (Mommy wants to make sure if it is tummy pain you ask for the nausea med that is PRN (0.5 ativan) instead of pushing the morphine.) He seems to be okay now that he's up.
Also, Asher picked up this cough last night while he was getting platelets. It isn't very often, but it's still there today. There is less blood in his nose, so hopefully the raw spot up there is healing itself over.
Today, I think we'll take it easy and play video games and watch TV. depends on how he feels as the day continues.
My sweet little guy is sleeping. He stayed awake long enough to see me come back and tell me about a few new things here and watch a little TV (I notice he is feeling more comfortable changing the TV station with the remote all by himself). He is coughing; he says it doesn't hurt. All of his eyelashes are gone now but he looks really good. I may squeeze in a nap with him now. I was able to get an afternoon nap Friday afternoon with the girls and then last night I got 9 1/2 hour of sleep with only one bathroom break around 4am (that's a pregnancy record). So....I feel a lot better this morning after 3 nights at home and ready for the week ahead. I sure hope we can bring Asher home next weekend.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Saturday, March 24. 2007 at
Day 11 post stem cell infusion
Asher continues to not have any fevers and he continues to heal up.
Albumin Serum 1.8
Asher probably will get platelets later on today, depending on if the Dr's want to do it tonight or in the morning. As of this writing, they haven't done rounds on Asher yet to decide.
Everything else, according to the nurse, looks really good.
-- Update 21:00 --
I'll try and recap the day as best I can.
At about 9:30, we got Asher up for the day and proceeded to give him a shower and a dressing change. Yesterday, Steph and I had figured that this would be a good day for me to head home for the day to spend time with her and the girls (as it had been 21 days since the girls saw mom and dad together) and have someone sit with Asher in the hospital. At about 10am, Grandma Eunice and Grandpa Jerry came by the hospital. Initially, I was really hesitant to leave Asher for the day. Mainly because of the nurse we were assigned. Neither Steph nor I really cared for this nurse, but ultimately, it ended up working well and I got some high praise remarks from Grandma/Grandpa when I returned. It appears that the nurse handled things very well, was prompt, and very thorough and did everything I had requested prior to leaving. It sounds like the same nurse is back on Sunday, so I bet we'll have that same person again.
After teaching Grandma and Grandpa the ins and outs of being in a transplant room, I headed home, but was sure to check in every couple of hours to see how things were going. Ultimately, things turned out okay, but there were a couple of rough patches.
With Asher's platelets so low, and having his morphine discontinued, Steph figured he would be tired today and having withdrawal symptoms from his morphine, and sure enough, Asher conked out shortly after lunchtime. When he woke up, he was pretty upset. We were able to get his button pushed twice, giving him a short burst of morphine and that seemed to do the trick and he played pretty good the rest of the afternoon. I had actually forgotten to mention the PCA button and thankfully the nurse was able to come in and show them how to push it.
During the middle of day, the nurse noticed that Asher had a blood in his runny nose, which he had been having for a couple of days. With his platelets at 22,000 to begin the day, he decided it would be a good idea to call the doctor and see about getting the platelets today instead of tomorrow like the doctor had initially planned. The platelets were hung around 5:30-6:00ish and infused over about 90 minutes after Asher had been premedicated with Tylenol.
When I came back to the hospital, the day nurse told me that Asher had started coughing during the infusion of the platelets. I talked to the night nurse about this and she indicated that really the only reason kids had this reaction was that if it was an allergic reaction. To make sure didn't get worse, she gave Asher a dose of hydroxizine, which has antihistimine properties. Asher only caughed once after he got the hydroxizine, so something worked. I remember that kids can sometimes have a reaction to platelets from certain donors but not others.
When I walked into the room, Asher immediately gave me the update on his hot dog that had been ordered from the cafeteria. Apparently, they had forgotten to give him mayo. Over the next hour, he kept asking me to go downstairs and get him mayo. I told him I'd go and get it if he'd take a bite, but he didn't want to, so I didn't. I didn't really think it was safe to get mayo from the community dispenser anyway...
Also, I showed Asher one the things I had brought from home per his request. I brought Spaghetti-o's with meatballs. After talking to mommy around 7:45pm, he asked to eat them about 8pm and one of our hospital-friends Suzie was able to get one of the kitchen people to open the can. Asher actually ate some of them too! He ate one meatball and about 10-15 circles of noodles. He washed it down with a single drink of water. Not bad for a "first meal" Now the key may have been the talk with mommy 15 minutes prior....as she has told Asher to "take a few bites and drinks" and "do the best you can" because "if you eat you can go home much sooner." So, she's thrilled he is eating!!! Yeah!
Asher was pretty exhausted, I could see, from playing with Grandma and Grandpa and he just crashed now at 9:00 after watching some shows on Disney Channel. It sounds like they played with most of the toys in the room and made a bunch of balloon figures out of the long 'balloon animal balloons' that we have here. Also, Child life came by with a CARS balloon. From what I heard, Tigger and another character were around the hospital and they peeked in the window at Asher from the anteroom, but he was sleeping. Asher wasn't really interested in playing with me when I got back and he just wanted to talk, sit by me for a few minutes, and watch his TV shows.
Here's what's going on with the medicine at the moment:
The ativan, hydroxizine, morphine, narcan has been stopped
the zosyn will be stopped sunday
This leaves Asher just on the three antibiotics (flagyl for the cdiff, and Linezolid for the enterococci, and acyclovir) and one antiemetic (zofran). He's still on the Zofran, but the doctors want to discontinue that. I think I'll talk to her tomorrow and ask that it stay a couple of more days, depending on how he's feeling. He's come off of so many meds all at once that we're expecting that he'll start to have some small withdrawal and we'd rather not re-introduce nausea into the picture, as the antibiotic may cause some nausea.
Asher had one medium sized poop today, and is keeping up with his intake of fluids.
Before bed here, I put the room back to it's normal configuration. I had moved things around yesterday to do some cleaning and arranging and tried a new configuration with the bed over by the front wall and the trash can. To make it work, I basically had to sleep on the couch backwards and that didn't work very well, so I'll go back to the way that's actually more comfortable. I got one of those yellow-eggcrate-foam-mattress-cover-things to fold in half on top of the couch for this stay and it does make a difference and makes this couch a little bit more comfortable. Thankfully, I am still able to get a good amount of sleep here at the hospital and will be trying to stay at night as much as possible I think in the coming week, assuming Steph and I can work out the logistics of coming and going. Once I know what a noise is, I can pretty much sleep through anything.
Anyway, Asher will hopefully get a good platelet boost for Sunday and should have some more energy. It will be interesting to see if he's cranky from being off all of these medicines so fast.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Friday, March 23. 2007 at
Day 10 post stem cell infusion
Asher woke up very Smiley today. For most of the morning, he was in a good mood and was even up and playing on the floor with me for a couple of hours without complaining of leg pain.
Counts 6:00 DIC Panel
Red Cell Fragments NONE SEEN
This morning, they TPA'd the white lumen because they couldn't get it to draw. Asher got a dressing change and a shower around 10am.
He appears to finally be clearing up the Cdiff because his stools are a lot less. Just a little bit a couple of times today. The doctor did make a comment that it should start to heal itself now that his counts are coming in.
Pain control is going down on the morphine to 0.1 continuous today and want to eliminate it entirely tomorrow but leave the demand dose (PCA) there in case he needs a little boost. he only pushed the button once yesterday (and that was when mommy did it before his shower and dressing change) and we've pressed it twice today.
albumin low, so they're giving him some today just as a push in his IV.
Asher is finally showing interest in food, and they are taking his TPN down to 75% of his daily calories and run 18 hours a day. Hopefully this will encourage him to eat.
decrease ativan by half
look to lessen the hydroxizine as well.
16.9 weight at 6am
-- Update 15:00 --
Asher fell asleep at around 2:30 pm after playing pretty hard until then. We had decided to clean the room up and make it more livable after accumulating stuff over the time we've been here. so, the room is rearranged a little bit and once Asher wakes up, we'll either play on the floor some more, or we'll play playstation.
-- Update 17:00 --
Talked to the NP about a few things we had questions about.
Asher's albumin is low because by default they don't put it in the TPN anymore. the pharmacy believes it could interact negatively with some of the drugs in the hospital, so they only put it in with kids who need it. Basically because Asher just wasn't getting enough of it because he's on TPN.
The magic number for restarting Neupogen is ANC below 1000. And that really is anytime over the next 6 months or so. Anytime Asher is in clinic and has an ANC below 1000, if that happens, they'll give him a boost of neupogen.
Saturday the Zosyn will be discontinued and they'll also discontinue the hydroxizine and change it to only as needed (PRN).
-- Update 23:00 --
Asher played hard tonight after he woke up from his nap. He slept about 3.5 hours and woke ready to play. He asked for a hot dog for dinner, but didn't eat any of it. later on, he asked for noodles that go round and round. After thinking a while, I figured out that he wanted spaghetti-os. All I had was chicken noodle, so I tried to get him to taste a few noodles, but he wasn't interested.
We played playstation most of the night and at about 10:30 he got tired and fell asleep.
Asher had no fevers today and contintinues to look really good.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Family, Hospital Stay, Infection, on Thursday, March 22. 2007 at
Day 9 post stem cell infusion
I used to just think the difference between night nurses was how quiet some were and how loud others were. Now I know the real difference are the ones that just hang and run meds and the ones that care.
Asher got a nurse tonight that has never taken care of Asher. There aren't too many nurses left here at PCH 2nd floor in that situation, but we got one tonight. That fact doesn't bother me, but I found it odd she never asked anything about Asher or what she could do for him tonight or anything prior to him going to sleep.
This nurse doesn't check one diaper. Curious why she wasn't warned that he had C.diff and fills a diaper every 1-2 hours. She hangs her med and leaves. She has no intention of checking Asher or his diaper at that time either because she comes in without a yellow gown and gloves on. So, already two times tonight I watched her come in, start a med, and leave. I get up, Asher's diaper is so full it has overflowed to the chuck (pad on his bed) so I change his diaper and the chuck. The third time two pumps were beeping for 10 minutes before I got up, shut them off, and then changed another diaper. Seconds later she came in, "Sorry I let them beep." Then she said, "The last stool had blood in it." Yeah, I know...I changed his diaper....oh well....
In situations like this, I prefer to just stay up all night and take care of Asher because I want someone who isn't afraid to change a diaper or afraid to touch his head to see if a fever is starting....so that's me tonight.
And, the moral of the story....I am really amazed and thankful for the night nurses that are willing to stand by a kid and take care of them when a mother or father is tired and needs some sleep at night! Asher and I have been quite blessed with a few wonderful night nurses the past 9 days, one in particular....she had Asher 3 nights last week and 3 nights this week. Whenever I would wake up, she was always there with Asher. She stayed by him during vomitting, she changed all his diapers at night, she mixed a special cream-powder for his butt to protect it from all the diahrea, she carefully lifted him to weigh him at 6am, he even took Tylenol from her so I could sleep, and she bought him a special Elmo twirly flashing light toy and gave it to him the other night. She's great and she's making such a huge difference! Hope she's back next week so I can tell her just that.
The good news, for tonight, is his temp has been 36.8-37 since 9pm! Yeah Asher!
PTT Time 14.3
Thrombin Time 15.3
weight 17.6kg I think at 5:30am this morning - the transplant staff said this is okay, but hey, his diapers are barely fitting and we're talking about 3 1/2 lbs extra on him right now
They are stopping the anti-fungal medicine and the neupogen with his ANC over 10,000. They got the bacteria sensitivities back; the bacteria in his blood (Enterococci) is resistant to Vancomycin so he is getting a different one as of this morning (Linezolid) and he has to get it for 10 days so his hospital stay is for sure another 10 days. They will slowly take other things away too, the morphine, the TPN, etc. He hasn't had a fever since 4pm yesterday. He hasn't thrown up since morning yesterday, I think. His stools are still pretty big/heavy, and he's averaging 8 a day they said (sure seems like more than that to me, but every now and again he will have a urine only diaper).
Asher's skin started peeling yesterday from the Thiotepa chemo skin burns/Paliferim skin rashes. His head and elbow were the first things and now I see his armpits are next. His elbow was really bothering him and he kept rubbing off the dead skin onto his pillow last night.
Asher is up and looking really good. Not as tired anymore and more himself! He's on the couch playing game boy now (I had gone to the shower and he said he wanted to sleep there but I put game boy in his lap just in case and sure enough, when I got back he was playing Curious George). He said to me, "I like you sitting by me." He's too cute.
Asher has started getting nosebleeds. They aren't too severe yet. They started as pink tinged mucus that he just blew out but this morning the other nostril has blood that just runs. So, we'll keep an eye on it today.
So, I asked Asher if he wanted to call his sister to say happy birthday. Asher said, "No. It's my birthday. Cuz I need it more. It's not Lexa's birthday yet. Cuz it's mine." Earlier this morning he said, "I don't know how to make a cake." That came from our conversation on stem cell collection day (when he thought as soon as he got his stem cells he could go home....he was quite upset when I said it would be a few weeks yet) when I told Asher when he was bigger and stronger we'd go home and celebrate Alexa's birthday, make her a cake, and celebrate Easter too, and look for Easter Eggs. So, he remembered that. Anyway, Happy 3rd Birthday, Alexa Belle! Mommy and Asher will celebrate with you soon!
So Asher was up from about 9am-1:30pm. He sat on the couch with me the entire time and after a shower and dressing change he napped till around 3:30pm. I tried to sneak a little one in there too.
Asher's eyelashes and eyebrows are about gone now, with some just hanging on. I notice his left eyelid isn't opening all the way.
At a "typical lunch time" hour Asher asked for pizza! I was thrilled. He is asking for food. I didn't expect this meant he would eat anything, but I ordered it anyway. While waiting for it (it takes about 45 minutes to get it from room service) he said he wanted mushrooms on it. I tried to tell him the hospital didn't have mushroom pizzas but when we get outta here I'll be sure to get one from Pizza Hut for him. He cried (he is a bit emotional/moody/irritable today, like yesterday, although better today). Anyway, I had ordered cantelope and pizza and potato chips and a chocolate chip cookie. He took a bite of cantelope. He held it in his mouth for a bit and then started to chew it and then whined. He wanted to spit it out. I expected this. But, I'm thrilled that he put it in his mouth! He didn't drink anything today at all. I think I forgot to metion the last two days he had drank a bunch of water, although usually threw it up after.
Asher looks to be back to his almost old self already, schedule wise. Although, he is napping again now, but will probably wake up when Scott gets here.
I talked to the transplant NP around 4:30, during and after she played with Asher and his frog and lizard. She said he is looking great (although she just noticed his runny nose and is talking about swabbing him now, although, she wants to wait to see what his platelets are at because of his nose bleed). She said if Asher is only on the one drug for the Enterococcus, he could go home on it, but it will still probably take about seven days to get him ready to go home. So I told her I want the calories on the TPN cut back. They wouldn't want to cut back on the electrolytes, which makes sense, but in the past we have learned that Asher just won't eat if he is getting TPN or NG tube feedings. So, at least I threw it out there now. Also, Asher's morphine will go to 0.1 continuous tomorrow and we'll see how he does with that. I think he will do okay. We really only push the button when I shower him now because of the bone/skin pain. Oh, I also talked to the NP about cutting back on the antinausea meds, starting with the Ativan, going back to 0.5 if he is still at 1.0 (and she said 0.25 if he is at 0.5 now but I don't think he was yet). I also told her I want the hydroxyzin stopped. She mentioned if he remains fever free (forgot for how long) she will remove one of the other antibiotics too.
In any case, we're on the road to bringing our boy home. It's been an emotional week. When it gets too quiet in this room, with Asher napping, I am brought to tears at just the thought of one part of how this past week was for him, for me, how the past 10 months has been for him. I am sure the pregnancy hormones don't help my emotions right now, but I have decided it is time for a break. After crying several times last night, trying to get some sleep, trying to make sure Asher stayed dry with his diapers, I just need a 3-day weekend. I need to see the girls and just get some fresh air. Hopefully the house isn't too torn apart from the warranty repairs that have reeked havoc there this week. Scott will be here soon and I'll head home. Be back Monday morning or Sunday night I guess.
Oh, and I forgot....
Last night Asher asked to pick from the "prize box" after his dressing change. He just brought it up out of the blue. He used to have only one dressing change a week and get a toy from a prize box while he was in the hospital, but in transplant he gets one every day and has never been offered a "prize." But, the nurse held up the toys outside the window to his room and when Asher picked, she washed them down and brought them to him. So today Asher wanted another prize. However, it isn't safe for Asher to get those toys yet. So, the child life specialist came in with a piggy bank with Asher's name painted on it and she said Asher would get a ticket for each dressing change. I talked to Asher and we agreed after five tickets we will call the child life gal and he will get to pick a prize worth five tickets. At first the said, "No, I get five tickets," he meant for today's dressing change. I reminded him he gets one ticket each dressing change and after he has five (so Monday) he will get to pick a special prize (one that is set aside for transplant kids - mainly that it is brand new).
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Wednesday, March 21. 2007 at
Day 8 post stem cell infusion
Right after my update last night, Asher started having more yucky diapers, lots of pure green liquid vomit (with hardly any flem problems this time) (I think that was at midnight), and fevers returned throughout the night.
I have asked a few times why his vomit is so green and I'll ask the doctor again today, but the nurse said green bile is what comes from the liver and when kids don't eat, that is the color of their vomit. That makes me feel very nervous! So I hope I can get a doctor to tell me more specifically why and if this is OK. I had noticed it start around the time the TPN started, I thought, but anyway.
The last two yucky diapers had very little to no blood, so I'll be watching it more today.
Asher's 6am weight was 17.3kg. My goodness....he must be holding some fluid somewhere!
Asher seems to have had some more pain through the night. My thought is maybe he's finally healing, and I'm sure his bones hurt too from his counts rising so fast and from the neupogen.
So, his counts are very big....will confirm when I get the actually printout, but here's what Asher's night nurse said:
Counts from 3am
I think I may actually go back to sleep here, see if I can get some more rest.
The doctor and other transplant team nurse/assistant were just in. They said Asher looks better today than yesterday. He's going in the right direction. They want to come back to see the Broviac site in person later today. Asher will get platelets today and stop neupogen in a day or two (if his ANC is over 10,000 tomorrow they will not give him neupogen tomorrow, if it isn't, he will get a total of three doses after his ANC is over 1000). His DIC is better today. They aren't changing anything else today. If Asher was able to take something by mouth, they would prefer to give the C.diff med orally, but won't do that just yet. They still don't know what the bacteria is sensitive to, but hopefully will know soon. They said obviously something he is getting is working for it. Nothing from yesterday's cultures has grown as of now. They said some of the fever can be due to the neupogen and the cells grafting.
The nurses said his stools are a little less watery and a little more brown in color, so maybe he's close to kicking the C.diff.
Asher is having more pain today and I think I'll ask the pain team to leave his morphine alone for today, so still 0.2/hr continuous with allowing Asher to push the button as well.
He's still sleeping.
16:30 38.4 - took Tylenol
Asher went almost 12 hours without a fever! Yeah Asher!
Asher has been more irritable while he's been awake. That's probably a good sign since he has more energy to be irritable.
The transplant team nurse/assistant has checked on Asher tonight and said he looks really good and he's not out of the woods yet, but he is improving.
Asher is up for the third time only today. He wanted to play Peggle Deluxe (free game on my laptop) first two times he was up today and the second time he fell asleep on me on the couch while playing. He does have little engery. He's up now; had a shower, dressing change and will now play with Scott some. Asher said, three times, "Thanks for coming back Daddy." Awe, kinda sweet and kinda sad at the same time. If only I could bring the girls too because I know he misses them and I know he would feel better, faster, seeing his sisters too.
PT stopped in but Asher was sleeping. She won't be back till Monday.
OT dropped off some little tasks that we can do with Asher at home (or the hospital).
Asher got magnesium today because he was low.
Not much else happened today.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Tuesday, March 20. 2007 at
Day 7 post stem cell infusion
Well, I crashed at 8:30pm last night. I sure was tired. I woke around 11:30pm, saw nurse with Asher and took a bathroom break, and then back to sleep, but not very good sleep, and at 1am Asher was calling out. He wanted a drink of water. I gave him one and then put my hand to his head and knew his fever was back. It was 39.9 ( 103.8 ). Not too bad, going all those hours without a fever! He was actually able to skip a dose of Tylenol, but got some at 1:15 now. He had also thrown up, said the nurse, as I got back from the bathroom. He went a lot of hours without throwing up too. Vancomycin seems to be helping.
The nurse also told me she had an hour break so she put TPA in one of Asher's lines and they draw now.
As I was writing the date, I realized my baby girl is 10 months old today. Can you believe it?! Since Asher was diagnosed the week she was born, I'll always remember the dates, the time.... Asher buddy, you have come a long way in 10 months and so many people love you and pray for you and are proud of you. Your mommy is at the top of that list.
Asher has 14 little baby cells. That means his bone marrow is working and that is why his ANC is going up. Woohoo!
band neutrophil 14
PT Time 18.4
Fibrinogen 663 (200-420)
D-Dimer 31510 (<230)
Vancomycin Trough 3.4 (5-10)
Vancomycin Peak 12.8 (15-40)
Potassium 2.5 (3.6-5.2)
Magnesium 1.6 (1.7-2.4)
Asher's fever didn't last long and then he got another dose of vanco and now at 7am he has a fever, 38.7, again. He just got a dose of Tylenol (after throwing up). He actually told the nurse, "I'm tired, leave me alone." It's good to see him talking and expressing himself. He's doing well.
Asher's transplant NP said she isn't doing the chest xray; Asher's lungs sound good and he didn't get much fluid yesterday and he peed out all the fluid from the night before.
Asher is about to get FFP because his DIC is higher today.
His diahrea is slowing down, but he has vomitted several times this morning. He keeps begging for milk but does end up drinking the water I give him, which sometimes makes him throw up again.
His temp at 8:40am was 38.4.
The bacteria in his blood is in the Gram-positive cocci family and we're hoping for it to be narrowed down today.
Vanco level was a bit low in his blood from this morning and so the next 3 doses will be increased.
They changed their mind during rounds and Asher will be getting a chest xray today.
Asher also got Potassium today.
This morning, right after my last update, the social worker came and chatted with me. I'm not sure why I haven't called to chat (and have a good cry) with her before....guess I'm not one to ask but I like her and she's easy to talk to. She's special for the transplant team. So I only just met her the week before Asher was admitted. She asked me a couple of questions, one of which was, "How are YOU feeling?" It isn't asked often. A few people have asked me and when they do I break down into tears. As the social worker said to me, I'm carrying some heavy things around with me right now, so that's been difficult. The doctor and NP came in to check on Asher and talk to me, so she left, but she said she would be back. After talking to her today I realized I will probably seek some type of counseling, if that is what I should call it, in the next few months. It was something I knew would be inevitable, as the last 9 months have changed me, in many ways, but carrying around so many heavy things on my heart and mind is not healthy for me.
Asher and I had a good early afternoon together. I think he woke up around 12:30pm. First time for the day. He played Game Boy and about 15 minutes later he fell asleep playing it, woke for a second, turned off his Game Boy, and while holding it still with one hand, fell back to sleep. But it didn't last long. He didn't want to sleep anymore. At that point I ran down to the cafeteria to get some lunch and Asher wasn't thrilled with me but watched TV while I was gone. After I ate, I brought Asher to the couch with me because he wanted to play "Snow" and "Christmas" (those are keywords for Sims2 because I got the new Seasons add-on). So, we played Sims2. It began snowing, and enough ended up on the ground that I had Asher (in the game) go out and make a snowman, with Daddy (in the game) helping. Asher had fun watching them. But, right after that, in the game, a social worker came and took all three kids away! Asher had been outside for too long and Aubree was crying in her crib too long. Asher was quite upset and he kept saying, "The witch took my kids away!" I don't know where he came up witch. In any case, we went back to "neighborhood" without saving and were able to go back in and play some more.
That's when PT came in to stretch Asher's feet/ankles. She's really good about not asking Asher to move. She just sat at the other end of the couch. She said Asher feels good, and even is 'helping' and 'pushing back' while she stretches him. I told her he walked to and from the shower last night, not too happily, but he did it. I noticed today when I try to change his diapers, his legs really hurt. He gets a bit upset when I make him stand on his feet and he says his feet hurt. I was told by the pain lady to push the button before I touch him, pick him up, or make him stand, and I still have a bit of trouble remembering to do that. Today I did when we went to the shower.
Speaking of his PCA....he didn't push the button at all yesterday and now today we did it two times this afternoon, but we're going to lower back down to 0.1/hr tomorrow. That way we can see if Asher needs more he can push the button, which is better than over-drugging him with morphine.
While PT was in, OT came in. She just said to let her know when Asher is back to himself (not really what she said, but what she meant). She said it might be 2 days before he goes home or outpatient, but he needs to be in cooperative manner to be evaluated.
So, after PT left, the chest xray guy came. Asher wasn't thrilled about going back to his bed, but I promised he could come back to the couch and play, which is what we did (he played Peggle Deluxe on my laptop)....until he overfilled his diaper (and he said, "someone smells")....then I took him to the shower and he had a dressing change at 4:00pm.
It is a bit more red again at the Broviac site on his chest....they are using bacitracin on it. The NP happened to come in at that moment so she saw it at least.
The owie on his butt (where his skin graft was taken for his head (which didn't take)) looks a little bit more owie today....like a big blister that popped, but it wasn't a blister to begin with. I don't think it is healing too well because it is getting too wet in his diaper (although I'm covering it with bacitracin and gauze and most of the time it does stick unless he has a monstrous diaper, which he has the last two times today. It is more pee than diahrea though...the nurse agreed and thought even 90-10, which is what she told the NP at 4pm.
Oh, and the NP told me they know the bacteria in Asher's blood...."Enterococci."
Asher sounds a bit stuffy, again, to me, with his nose running a bit before and after his shower. It hasn't been a huge issue so no one has really even talked about it, I don't think.
So, that's been our afternoon. Asher has very little energy and when he is awake, I can tell he is fighting to keep his eyes open. He still only opens them about 1/2 way too.
18:30 Changed another nasty diaper (that's 4 since 7am)....and, fever 39 (102.2) is back - gave Tylenol
19:30 39.1 (102.4)
I was laying in Asher's bed by him playing a game and he fell asleep at 10pm and I didn't even realize it till the nurse came in.
He had two nasty diapers, around 8:30pm and 9:30pm, but this time they had some blood. The nurse called the doc on call and she said it is to be expected due to the mucositis. Course, I am more worried than that due to the C.diff....
Around 9pm Asher freaked me out, with the way his eyes were wiggling and the puffy face and his not wanting to get off his pillow....he said to me, "I can't see." He still hasn't opened his eyes more than halfway and now it looked like he wasn't looking at me. Then I opened his right eyelid and saw a ton of eyelashes in there. I washed my hands and then worked on cleaning his face, including his eyelids. I mentioned it in an early blog entry that Asher's eyelashes had finally fallen out but new ones had started to grow. So, they are not very long at all and now these are falling out, but instead of onto his cheeks, they are going into his eyes. He seemed fine once I washed his face and eyes and he sat up and wanted to play a bit.
Asher did mouth care (just Biotene and Nystatin) three times today, although one this morning he threw up after. I'm also able to brush the front of teeth in the front of his mouth with the green sponge. I don't dare do more or I'd gag him.
Today, Asher enjoyed opening 4 cards that came in the hospital mail and 1 from home. He gets very protective over them after he opens them.
The good news for me to go to sleep on is his temp is 37.3 (99.1) right now and he hasn't vomitted in many hours. It may spike or he may throw up tonight, but I feel like he's getting better.