"Give thanks for sorrow that teaches you pity; for pain that teaches you courage - and give exceeding thanks for the mystery which remains a mystery still - the veil that hides you from the infinite, which makes it possible for you to believe in what you cannot see."
Robert Nathan

Lots to be thankful for, this year, each day. I could write a book on what I am thankful for, but I won't. Not here.

I do want to say I am thankful to the hospital staff for making Asher's Wednesday MRI go soooo smoothly. Very happy with the care they gave him. We, of course, are still waiting the results, and most likely will get them at clinic mid-December.

I'm also thankful for my mom and her wonderful cooking. It was nice to relax and enjoy and I know she was tired, hot and feet hurt from cooking and I appreciate her so much! We all were stuffed from Thanksgiving lunch.

I'm also thankful for my sister and her husband for making the 13 hour drive down to visit us. I could never image the chaos of getting ready to travel with 4 young kids or even actually doing it. I miss them and love seeing her 1-2 times a year.

I'm thankful for my hubby, for sooooo much, but this past weekend, for letting me sleep in two days and for taking care of all the kids, alone, Friday so I could have an adult day at my mom's house.

I'm also thankful for those of you still coming here to check up on my boy, Asher. He's my world, and knowing he's a small part of your world means so much to me!!

Asher is doing well! However, he has started a low grade fever, yesterday, (100), and just could not hear us the last two days. He only complained about a little pain in an ear, but asked which one, he couldn't say. He never needed medicine for the pain or low grade fever. I am sure he has a double ear infection, or at least in one ear, so off to the doctor tomorrow. He still has a runny nose and is coughing, and this just seems on-going, and on-going. He has DIBELS testing, at school, starting tomorrow (Dec 1-3 I think)....so....not sure....but I don't think I'm sending him to school tomorrow until we see the doctor.

We have some Christmas lights up, outside, but not the tree yet.

update 5:30pm....no sooner than I finished posting this did a fever spike....102.7 right now....and his left ear is hurting where he's in tears....so....he got ear drops and motrin....trying to decide if we'll go to a nearby walk-in clinic, which we think closes at 8pm, or wait till 8am to go to the pediatrician's....he fell asleep on the couch

update 4pm Monday....went to the pediatrician this morning and Asher has a double ear infection....starting Cefdinir tonight

Transplant: Day 19
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!

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Counts 3am
wbc 14.5
rbc 3.42
hemoglobin 10.8
hematocrit 29.9
platelets 66
ANC 11455

PTT Time 14.3
APTT 32.4
Fibrinogen 631
Thrombin Time 15.3
D-Dimer 5373

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

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Update 11:00

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!

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Update 17:00

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).

Transplant: Day 18
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
wbc 6.5
rbc 3.62
hemoglobin 11.1
platelets 22
ANC 4680

I think I may actually go back to sleep here, see if I can get some more rest.

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Update 9:30

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.

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11:00 37.4
13:00 37.1
15:30 37.9
16:30 38.4 - took Tylenol

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Update 18:30

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.

Transplant: Day 17
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.

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Update 9:30

Asher has 14 little baby cells. That means his bone marrow is working and that is why his ANC is going up. Woohoo!

Counts
wbc 1.7
rbc 3.68
hemoglobin 11.6
hematocrit 31.4
platelets 41
neutrophils 3
band neutrophil 14
ANC 289

PT Time 18.4
APTT 39.9
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.

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Update 16:30

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.

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Update 19:30

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)

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Update 22:30

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.

Transplant: Day 16
Day 6 post stem cell infusion

1:00 - 1:30: Asher threw up on his pillow and himself. I didn't even hear him cough let alone vomit, neither did the nurse. I woke up to go to the bathroom and noticed his diahrea and changed his diaper and he said, "Mom, change my pillow." He also needed new wrap/gauze around his dressing then too. His temp was up to 39.1 but by the time all the bedding was changed, I had cooled him with water on a wash cloth, and another bolus finished, he was down to 38.7. He took more Tylenol like a trooper.

He's actually had a few pee only diapers in the past few hours due to the boluses. Hopefully he feels a bit better too. I remember around midnight, or so, he sat up to throw up but nothing came up so he laid back down.

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Update 5:00

4:30 - 5:00: Asher threw up and, of course, more diahrea. The night nurse was by his side and taking care of him. After he throws up now he says, "I all better. I all better, Mommy." Boy does that bring back memories. He used to say that when he had all those morning vomitting episodes prior to his diagnosis.

Then he says, "I want to sleep."

His fever is up to 39.6 (103.2) and he is receiving platelets right now. The nurse tried to give him Tylenol and he said, "I want mommy to do it." Sure thing, buddy. I wish I could do more than that.

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Update 9:15

Counts 7:20
wbc 0.4
rbc 2.71
hemoglobin 8.4
platelets 86
ANC 8

Asher has had more of what he's been having and sleeping the rest of the time.

He did have growth on yesterday's red lumen culture and they are testing it again now to see if it is still positive and adding another antibiotic (vancomycin). They should know tomorrow exactly what bacteria is in his blood.

Asher's skin graft site on his buttock is irritated, red, and I noticed it changing a few days ago when he had all the skin issues.

Asher's pulse is keeping around 140-150. His blood pressure is around 90/53.

Asher had another dose of Tylenol at 9:10.

That's about all I know this morning. Just hoping a doctor does rounds this morning and doesn't wait till afternoon to check on Asher. Asher has so much stuff hanging from his IV pole, going into his tubes, going into his Broviac, it is a bit overwhelming to see it, to think about it, and to trust the doctors. I don't like Asher having different doctors each week....at least the same NP is here during the week

17.0kg this morning at 6am

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Update 10:15

The doctor and NP were in and said Asher looks good and we just have to ride this out. He will get blood today (hemoglobin is 8.6). They are adding vancomycin and keeping everything else they are doing as well.

Asher can barely open his eyes or mouth....he tried to watch some Goofy this morning but is now asleep again. When he talks it is difficult to hear and understand him. Even with that said, whenever I say, "I love you Asher," he ALWAYS says, "I love you" back to me.

10:15 temp 39.6 (103.2)

Platelets down to 51 by 9:00; guess when he has a fever it eats them up and they are from the transfusion, so they are temporary anyway.

It's very quiet in here right now, guess I'll find something to do on my computer now. Anyone want a Hershey's kiss filled with caramel?

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Update 12:20

Asher threw up around 11:30 - lots of green liquid - yuck - but he was good about doing mouth care (biotene and nystatin, even swallowing that one) afterwards to clean out his mouth.

11:30 Temp 38.6 (101.5)
12:20 Temp 39.4 (103) - Asher has the shakes/chills pretty bad

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Update 14:00

Asher had more diahrea (contained to diaper) around 13:30. His temp is still staying high, but not going into the 40's. His pulse is a little better at 135-145 now.

After he had the diahrea and I changed his diaper and chuck (pad for the bed) he laid down and said, "I better now mommy." He's sleeping and snoring, again.

The transplant NP came in to talk to me and she had a lot to say, so let me see if I can remember it all.

They do say Asher is septic.

They gave him blood thinking it would help circulation and cold feet. This morning his perfusion (when you push on the skin and let go and see how long it takes for the color to come back) was 4-5 seconds and now it is more like 3 seconds, so that's good.

Asher has DIC (disseminated intravascular coagulation)... described as little bleeds and little clots. His PT Time at 9am was 16.6 (norm is 10.1-13.8 seconds) (really bad would be 35). His APTT was 45.1 (norm is 22.2-39.5 seconds) (really bad would be 80). Fibrinogen was 462 (norm is 200-420 mg/dL). Vitamin K can help so they are adding that to the TPN tonight and probably the next two nights and will keep an eye on it. If Asher still seems to need more assistance with his pulse / blood pressure, they will go to FFP (fresh frozen plasma).

If Asher's C.diff diahrea doesn't let up, they may go to an oral med, but at this point they know it would be very difficult to have him swallow it, and his diahrea is slowing and not as explosive. So, crossing fingers the Flagyl works on its own.

That's all I can remember right now

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Update 16:30

15:30 Temp 38.2 (woohoo)

Asher gets his second dose of vanco.

So about 3:00 pm the nurse brought in a bag that has a blanket and a "Sam I Am" doll in it. It is from the Jaydie Lynn King Foundation. About 15 mintues later I asked Asher if he wanted to see a gift and he shook his head yes and when I showed him Sam I Am he said, "I have a Game Boy game with him in it." So he wanted to play. He played "Cat in the Hat" Game Boy game for a bit and is now playing Donkey Kong Game Boy game. It was sooooo good to see him playing. He played for 1/2 hour and then wanted to go to sleep....and he started shaking/shivering again.

The NP came in and saw him doing that. About 3 hours after the Tylenol that is what seems to happen. She said Asher will seem septic again when they give the 2nd dose of vanco tonight sometime (guess she didn't know he had just finished getting it). The antibiotic attacks the bacteria and toxins do things to Asher's body. They think one more night of watching him closely and then the future vanco doses won't be so bad.

Platelet count is now 38.

-----

Update 19:00

17:00 40.3 (104.5), highest temp yet, took a dose of Tylenol

17:45 another gal on the transplant team (I think doctor's assistant) came to check on Asher....she said he might be septic after the third dose of vanco tonight too, each time should get better as it attacks the bacteria, which will be less each time, hopefully. She said Asher will have a chest xray in his bed tomorrow morning (when they give lots of fluids they like to check the lungs to make sure the fluid doesn't go there).

18:15 38.1 Temp, 16.2kg Weight (they said he was peeing well), I gave him a shower, then he got a dressing change

I had made Asher walk to and from the shower; only walking he did today. I forgot, PT did come earlier, just as Asher finished playing Game Boy and she said she could stretch him or no and when she asked Asher he shook his head yes.

His Broviac site is quite red. I have been asked the last few times it was changed and as of last night I didn't notice it that much more red, but tonight it was quite red. The nurse put bacitracin on it. She noticed his nose was running after he sat up from the dressing change and asked if it has been running all day. I said no. The only time he was blowing his nose was when he was throwing up it got up in his nose cuz he put his head too far down into his bowl. Anyway....wouldn't be suprised if they swab his nose tomorrow....


18:30 Asher is sitting next to Daddy (who came to visit) watching him play playstation. He's about to fall asleep now, though, already. He is playing Chicken Little. Now Asher is playing too. A little bit ago he was holding 'Sam I Am' and said, "I love Sam I Am."

18:50 Pulse is 135 and blood pressure is looking much better too (96/81 last one).

-----

20:30

Temp 37.7, just changed another yucky diaper, this time lots of that green crap that he was throwing up has now come out the other end. His skin graft site (left buttock) had an area that looked raw....put bacitracin on it and put gauze over it, but having it in the diaper area where he pees a ton and had diahrea just isn't that great. After I got done, he said, "Thanks for fixing my butt." I swear, I have the sweetest son ever. Asher is talking a lot more and not quite as sleepy, but hopefully will go to sleep for the night now because I'm beyond tired.

Transplant: Day 15
Day 5 post stem cell infusion

Counts 3:00
wbc 0.2
rbc 3.17
hemoglobin 10.0
hematocrit 28.0
platelets 44
ANC 0

Wow, it is two weeks since we admitted Asher for his last round of chemo and stem cell transplant! I keep thinking the days go so slow here, but I guess they are moving along pretty well. To think, we could be halfway there. Maybe in two weeks we'll be at home!

Asher woke at 2:45 and vomitted and the nurse was changing his yucky diaper. About 1-2 hours prior to this, Asher was mumbling in his sleep and moving around in his bed a lot, so I'll bet he was in pain/discomfort from this nasty C.diff. That's about all I know happened last night. Asher's still sleeping right now.

weight at 6:45 16.2kg

-----

Update 10:30

10:00 - More mumbling in his sleep, then more vomitting, then more diahrea, then a shower, clean sheets, and back in bed, just feeling blah! Has the TV on now, vomitted again, and got his neupogen shot (he barely cringed).

-----

Update 15:00

14:15 - transplant doctor stopped in and said Asher has some cells in the background - Asher's skin coloring is looking much better - skin owie is looking really good (she said there would be signs of healing before we'd see cells) - Asher got a couple of boluses to try to replace all the lost fluid with this C.diff (Clostridium Difficile) - she really wants to stop the vomitting and has increased the ativan to 1.0 and eventually will replace the zofran with the ativan because he seems to get a 2 hour window of play-time in after he gets the ativan....seems to be more effective than the zofran at this point, however she doesn't want to 'take away' from Asher at this point, so the three will all rotate every 2 hours as they started last night - she also wants to try Narcan (if I understood her right) to try to nip the nausea in the butt, she thinks the morphine can also bother the tummy - she said all the drugs are making him sleepy - she is off now for two weeks so we'll have another doctor

14:30 - More diahrea but no vomitting, did dressing change

-----

Update 19:15

15:00 - more vomitting, green again
16:30 - fever is back 38.5 - do cultures
17:30 - give Tylenol (Asher took it while sleeping, barely waking up)
18:00 - weight and change diaper (diahrea contained within diaper)
18:45 - another diaper (diahrea contained within diaper again)
19:00 - 38.9 (102) temp
19:05 - Asher was stirring in bed and picked his head up enough to look out the window and said, "It's dark out." I said, "Yes, the sun went down. It is okay if you sleep."

Asher is very sleepy. I think he has been up a max. of 3 hours today and that's laying in bed, or short shower. One point I got him almost sitting up with pillows behind him and we played a few things in bed (the fun little things from TRU that I picked up yesterday). He just wants to lay or sleep or have TV on mostly. Doesn't surprise me since his fever is back; he's always like this with a fever.

I had to have the night nurse do another dressing change because the one from earlier was falling completely off.

-----

Updates 22:30-23:00

Asher's night nurse called to talk to the transplant doctor and she called and asked for the hospital pediatrician on-call to come take a look at Asher. I have met her before, last fall. They are worried about dehydration, loss of electrolytes, his high pulse, and low blood pressure. So far I know he will get some potassium over 4 hours and more boluses/saline/fluids (1 right away and then they are going to start adding up what he loses in diahrea in 4 hours and give it back to him), and they are waiting for the CBC to come back from the blood they drew about 45 minutes ago. If he vomits any amount of blood (he has had two bits of blood come up) he will get platelets whether they are below 20 or not. Right now Asher is stable and they are just keeping a close eye on him.

21:00 vomit, diahrea, did mouth care (salt water very fast, then good swish and spit with biotene, and swish and swallow with nystatin)
21:15 vomit then went to sleep
21:30 tylenol while laying down and still sleeping
22:30 38.6 temp
23:00 vomit

Counts 22:00
wbc 0.3
hemoglobin 9.x
platelets 25

Transplant: Day 14
Day 4 post stem cell infusion

It has been a busy morning to begin. Just before 2am I woke to Asher wanting to vomit, again, it was green and he had to work really hard to get the little bit out that came out. All diapers were just urine and looked fine. Then at 6am I woke again to Asher vomitting. Same thing, green, and he was just working so hard to get it out. Then I went to take my shower and get breakfast and the moment I walked back in the door he pointed to his mouth, wanting to vomit. Again, same thing, same amount, green....and when he was done he said, "I want the nurse to change my diaper." It was about 7am by this point and I called her in to ask for a little ativan....just do something to stop his vomitting. And then I told her, "Ready for your stool sample?" It was pure liquid and all over the chuck (thick padding we put right under his butt for when diapers leak like that) and his legs and even feet.... The transplant doctor wanted to make sure he doesn't have rotovirus (oh geez, there's that word again) or something like that. I'm beginning to think he just might have rotovirus again because of the awful odor and the vomitting, but I don't know. I'll be asking the doc if the antibiotics can cause this green bile since it started the day his antibiotics started (yesterday).

So, I took him into the shower to clean him off, with a little unwillingness on Asher's part. His skin still really hurts and now this morning he keeps saying, "I'm red!"

Asher's temp was 38.2 at 6am. The last Tylenol dose was at 8:30pm or so last night. He slept pretty well except for the interruptions to vomit.

He just did his mouth care, two of them, biotene (swish and spit) and nystatin (swish and swallow) without much complaint. He even asked for vaseline instead of being upset I was putting it on his lips. He's still awake, too, and watching TV. Maybe he can get in some playing today.

-----

Counts 4:00
wbc 0.1 (4-12)
rbc 3.03 (4-5.3)
hemoglobin 9.1 (11.5-14.5)
hematocrit 25.7 (33-43)
platelets 54 (140-450)
rotavirus antigen negative
ANC 0
8:30 temp = 37.8

-----

Update 13:35

Asher was up from 6:00 until about noon today! Playing with balloons in bed and Sims2 with me and watching TV. He's been sleeping for about an hour.

Childlife brought paint and he's going to paints his window later today.

12:00 temp = 37.6
12:45 another explosion in his diaper, going to finally try to give him Immodium when he wakes up
13:25 wake from sleep to vomit, but not green anymore, normal bile/flem color

Transplant doctor in to see Asher and she said he looks a lot better today than yesterday. Skin is looking better and his mouth looks really good (I thought so too), still some sores there along the gums, but he is using less morphine today than yesterday and talking more. She expects his mouth to look even better closer to Monday. Nothing has grown in the cultures, but continuing the antibiotics for now.

Scott is coming to see Asher in a bit

-----

Update 19:30

Asher vomitted again shortly after Scott got here, around 2:30pm and then again at 3:30pm, it was yellow bile and flem. Poor guy. I held off on the Immodium and will try it before bed.

Asher handled his dressing change pretty well; again, no tape.

Scott and Asher had a good visit....at first Asher didn't want to get up out of bed but around 5pm he got up and Scott and he played and I went out for a drive. The thermometer on the SUV said it was 98-100 degrees outside between 5pm-6pm. I hadn't even realized it was that warm out. Was nice to get out, even for two hours. I went to Toys R Us and spent $14 on three activities for Asher and me to do the next few days.

When I got back I found painting on the window in the room. Asher said, "Daddy wrote my name."

I'm hoping to get Asher to take his Immodium here and then do mouth care and then bed soon.

-----

Update 20:55

Asher threw up just as I finished typing my last entry and since I thought he was done I thought I might as well give the Immodium....but he threw that up too, and after that he pulled his sheet back and said, "I already went, see?" That was in response to my telling him we had to stop his diahrea! I think this may have been the biggest explosion of them all. Guess I'm getting good at cleaing the mess up. Sure does wear me out. As I was washing Asher, as he lay in bed, he looked at me with a big smile and said, "I love you, Mom." Awe, he knew I was getting frustrated with all his throwing up and pooping because I was hoping by now we could have gotten it under control or even stopped. Before that he actually said, "Sorry," and then I got tears in my eyes. I told him it wasn't his fault. I know I am just very tired and then more moody because of it. Out of the last five nights, I got one good night of sleep (Thursday night). It was amazing though, afterwards, how spirited and happy and silly Asher was being. I can tell he feels so much better once it is out. I have to say I was a bit bummed he didn't give Scott at least one mess to clean up....when talking to Scott about it this afternoon he just said to me, "I rarely change a diaper; the nurses just did it." I, at least, have stopped getting up during the night to change Asher's diapers....I used to do it but I see the night nurses are just used to doing it and now Asher lets them too. He used to cry for me to do it (back in October when I was with him a lot).

Asher did his mouth care and I have stuck to my approval (and the transplant doctor understanding) that I would only 'force' Asher to do the Biotene and Nystatin and since he does both, properly, even swallowing the Nystatin, I agree not to do the two yucky ones and tonight he even said that after swallowing the yellow one (nystatin)...."Not the two yucky ones." Nope, just the two you do okay with buddy.

Anyway....at least I can go to sleep tonight knowing Asher has been without fevers all day today. After yesterday I thought for sure they were going to hang around for awhile, but looks like I was wrong, so far. Asher's already asleep for the night.

-----

Update 22:00

I successfully woke Asher up so he could take his Immodium, but he threw up first. Then I gave him a choice, either I use a little syringe to squirt the medicine into his mouth or he could drink it from a medicine cup....he chose to sit back up and drink it from the medicine cup....I told him deep breath and lay back down....so he did....and so far so good.

Asher's night nurse (same as last night) just got off the phone with the transplant doctor and she wants to make sure Asher has an antinausea med every 2 hours....so he will get zofran q6, ativan (0.5 dose) q6, and hydroxyzine q6, so he'll get at least one every 2 hours. I hope this works.

I'm going to sleep now.

-----

Update 22:30

The nurse just ran in here 10 minutes ago....the stool sample sent this morning that was negative for rotavirus antigen came back positive for C.diff. So, too bad he just kept down that Immodium; he can't have that with C.diff. They will start a new medicine: metronidazole (Flagyl). She said it will cause nausea....at least he will be getting an antinausea med every 2 hours.

Transplant: Day 13
Day 3 post stem cell infusion

00:00 37.8 (100)
03:00 38.1 (100.5)

They start cultures at 38.3 (100.9) for transplant kids.

Prior to this morning his temps have not even reached 37; they were usually 36.8.

And, to mention, because I have forgotten, Asher has a little cough. And I mean little. He coughs for about 2 seconds about 5-7 times a day, but the nurse just asked me about it. It started about 2 days ago I think and I seem to notice it more when he is laying down. At first last night I thought he was going to throw up so I would jump up and then realized it was just a little cough.

-----

Counts from 6:00
wbc 0.1
rbc 3.47
hemoglobin 10.8
hematocrit 29.3
platelets 21
ANC = 0

-----

Update 8:20

Asher's temp is holding steady between 37.8-37.9 since 5am. His blood pressure has been on the low side. He was talking in his sleep some and sat up around 3:30am and told me there was a loud noise in his ear. Weight at 6:30am 16.2kg. He had another explosion in his diaper. He's watching Seaseme Street right now.

-----

Update 11:00

Asher did his mouth care this morning, but threw up while we were trying to do it. Bile and flem came up.

Temp = 38.1 at 10:30

Asher got his third neupogen shot at 10:30 and asked that the cotton ball be kept under the bandaide this time.

The nutritionist stopped in and said he will be at 100% TPN with tonight's bag.

Transplant team said Asher is doing well for 'day 3.' The doctor said his mouth looks worse today than it did yesterday. She said you can tell he is trying to do his mouth care and it is helping. She said to expect healing to start next week. She said the fevers, since they aren't spiking, might be from the skin rash and underlying layer (or something like that). Parts of him are very red and hot. If it goes away in the next day or two she said that would most likely mean it was the Paliferim that did it. Also, they expect to see some peeling of his skin, especially at the arm pit and groin, as effects from the Thiotepa chemo. I have to watch to make sure the diaper doesn't irritate the groin area. Asher continues to have diahrea in the morning and she said that is normal and is from the chemo and the morphine probably won't help enough and they will give something else to get it to stop. She said they will send a sample to check for rotovirus (oh, not again) and just be sure there's nothing there. I confirmed again with the transplant doctor that the neupogen is supposed to be given subcutaneously, and she said most definitely. It is more effective this way. She is not afraid of infection through the shot site(s). She said they would go to IV if Asher didn't handle the shots well, but the dose would be doubled then. He is handling them quite well so we'll just keep doing them the most effective way. The transplant doctor also said if Asher's flem gets too thick and he starts to want to spit versus swallow (like he did in chemo round 3) that they have a little thing that can suck it out and that 4-year-olds do know how to use them....she said sometimes it can actually irritate the stomach if he does continue to swallow it and then he'll vomit....so I'll watch for that. She said his cough is probably just from irritation from the mucositis in the throat and they didn't hear any fluid in his lungs.

Asher has pushed his PCA button three times already this morning. The pain lady was just in and increased the continuous dose (0.2 per hour now) and the button dose is now 0.4. Asher just pushed his PCA button and turned over in bed and went to sleep (he's watching TV too). That's all he wants to do.

-----

Update 20:15

12:00 Temp = 38.4 (101.1)
12:30 cultures taken
12:40 antibiotics given (Tobramycin & Piperacil/Tazobactam (also called Zosyn))
12:50 oral Tylenol given (Asher fought it but then finally took it and it has stayed down so far)
Temp = 38.9 (102) at 13:15
Temp = 39.1 (102.4) at 13:40
Temp = 38.8 ( 101.8 ) at 15:00
16:30 oral Tylenol (good boy Asher!)
16:30-17:30 platelet infusion
17:00 38.6 (101.5)
17:30 chest xray done (due to cough)
18:00 urine sample taken (due to cringing in pain when he last peed in his urinal)
18:00 sponge bath in bed
18:15 37.8 (100) and blood pressure up 101/64 (been low around 80/34 most of the day)
18:30 16.8kg weight
18:30 chest xray: there is a little dark area behind his heart and the doctor said no pnemonia, but like a mucus plug and he needs to work on respiratory efforts (i.e. blowing on the thing (don't know the name) that he got the day he was admitted to transplant, blowing bubbles, blowing up balloons, etc.)
20:15 38.8

-----

Update 21:30

Asher has had the urge to vomit twice this evening. The most recent time was around 8:30pm when he was asleep and all of a sudden he started throwing up and it was green icky. Not sure why. Wonder if the antibiotics made it that color. It wasn't that color when he threw up around 7pm. After he threw up, he did his mouth care, just two, biotene (swish and spit) and nystatin (swish and swallow and he DID swallow). Then it was time for Tylenol and he took it for me just fine and then I put vaseline on his lips and back to sleep he went. I let him cuddle under his favorite blanket and then once asleep I take it off so he can try to cool off.

The transplant doctor did say that having the fever that Asher has isn't harmful, just uncomfortable. So, we'll try to do what we have to do to keep him comfy, cooling his head, giving Tylenol, etc.

Scott came to see Asher today and Asher tried to stay awake for him as much as he could. His mouth hurts so he doesn't smile or talk much at all, if at all, but I knew he was glad his daddy came to see him.

Asher is asleep right now and snoring. He rarely snores. He has slept so much today, beginning around noon or shortly before I think. And, it bothers me. I know he has to go through these down days before he can get better, but it is scarey and lonely, that's the best way to describe it.

Day 42 Post Wound Surgery #1 &
Day 29 (FINAL day) with VAC Therapy

Today Asher wanted to eat, right before we had to leave for his OR appt. with the plastic surgeon. Most of the way to the appointment, in the SUV, he said, "I'm hungry mom! I want cheese!" He fell asleep eventually, but I had to wake him when we got there (it is a 40-50 minute drive one way) and he was a bit crabby, especially waiting so long. A nice nurse came in and played with Asher (playdoh) and even pushed him in his bed in the hallways of the pre-procedure area (Asher was the last surgery today and there were no other kids there). So we got there at 12:35pm and they took Asher in for the procedure around 2:55pm.

And....as I suspected from Wednesday, NO skin graft today.

There was a lot of concern Wednesday, I guess, that there was SO MUCH coming out of the wound from the VAC since last Friday. The plastic surgeon was shocked when the wound nurse told her how much since she said she didn't do that much debridement. The plastic surgeon said last Friday the wound was so close to being ready for the graft and now the wound is "ill." That's the best way to describe it. When the plastic surgeon took Asher into the OR today (an hour late) and took the tape off, she immediately smelled "yeast." She said that was the best way to describe it. She said she can still see the bone and she even had the neurosurgeon come into the OR to take a look.

So....he doesn't have the VAC anymore....he has a gauze dressing, one wet with a 'medicine' and one dry and then his "hat" that he had before. No tape. This dressing change I can do at home. I have to do it one time a day and if Asher tolerates it, two times a day. Better if I do it twice because if the gauze dries out it could be painful for it to be removed from his wound.

Asher was in the OR for two hours because it took the pharmacy a long time to mix up the solution that the plastic surgeon wanted. We didn't get home till 7pm tonight. Long long day and Asher is tired and crabby and confused, but doing okay. He realizes he is free of his VAC and got up and walked and RAN on his own, but he's dizzy from the anesthetic so he's not happy we are trying to stop him from walking around. He also immediately crawled up the stairs when I opened the baby gate to go up.

Oh, and, the wound nurse swabbed Asher's wound Wednesday, I believe, (just found out today) and there is bacteria present. Asher doesn't have any fever and the plastic surgeon said this bacteria is common on the skin and it is something she would expect to see in an open wound. I am a bit concerned, as I fear all bacteria with Asher these days, and he's not on any antibiotics. So, I'm going to call the oncology clinic Monday to see if I can come in and get a blood draw done to check for bacteria in his blood. The plastic surgeon said she didn't see a need to check his blood or PICC Line....maybe I'm overreacting, but at this point I don't care. I want to be cautious, especially since Asher has acted so much more tired this past week and was rubbing his wound and was crabby and complaining his head hurt. So many worries, all the time, that I just want to make sure I react to what I see and not overreact to what might be, if that makes sense.

I do have to bring Asher into the plastic surgeon's clinic Monday morning so she can check his wound.

I was thinking, today, that Asher's 4th birthday is two months away. Wow! I had hoped we would have been done with his treatments by then, but, we won't.

That's all for now....we need to keep praying for healing....heal wound heal....

October 2006 - November 2006

Head Wound Photos from an infection during/at the end of chemo round 3 (end of September and beginning of October) - I am not going to post the photos as images, just links, so if you are not wanting to see the images of how bad the back of Asher's head has gotten, you don't have to click on the links.
Asher's Head 9/24/06 - went to PICU with 105 temps and unstable blood pressure and oxygen levels
Asher's Head 10/1/06
Asher's Head 10/2/06
Asher's Head 10/3/06
Asher's Head 10/4/06 am
Asher's Head 10/4/06 am bandage
Asher's Head 10/4/06 pm
Asher's Head 10/5/06 am
Asher's Head 10/6/06 when the neurosurgeon looked at it and said TIME FOR SURGERY

10-6-06
First Surgery to remove dead tissue
from head wound area

Before surgery - after the neurosurgeon
was in looking at the wound and decided
it was time for debridement



10-7-06
Morning - needed oxygen


Tummy still enlarged:


Drinking ice water:


Playing Game Boy Advance before surgery:




A sucker and a Game boy....




A smile - hadn't seen one in awhile now!


Holding finger puppets that I got him:


Second Debridement - before going into surgery


taking photos with his camera


10-8-06
Swelling in face/eyelids this morning


Large belly this morning:


Third Surgery for Head Wound
from gram negative rod bacteria
which showed positive today
from Friday's tissue culture

In the OR - this is the bandage over the Integra:


After surgery - back in 2nd floor room:




10-10-06
Girls visit - first time in several weeks since Asher's counts were so low for so long




10-10-06
Aubree started trying to eat a sheet of Asher's stickers and he got upset at her for doing that



10-12-06
Asher's feet still hurt when he walks or pushes his bike, but he is willing to try when I make him do it....the more he does it the more loose he will get.



Girls came to visit again:




10-12-06
These two photos are of the hole in Asher's head which has Integra on it (this is 4 days after the Integra was put on):
photo 1 - click here
photo 2 - click here

Dressing change over Integra (just gauze now, yellow part is gone):


Prize that Asher picked from the box for being good in the treatment room:


10-14-06 - smiling, giggling, and laughing again
Asher's face is still pretty swollen:




10-16-06
We were playing in his bed and the nurse took our photo:

Afternoon nap:

Talking to daddy on the phone:


10-17-06
Asher has lost most of his eyebrows now, especially the right eyebrow (has maybe 5 hairs left) and the left one is on its way to that. He is smiling, giggling, playing catch, and today he started taking steps on his own. Today was his first day off of morphine in several weeks! Also, Daddy and the girls came to see Asher today and since he is still on droplet precautions (isolation) he is stuck in his room but they had a good time there. Asher's nurse even let him be pole free for several hours in the early afternoon.

Walked about 4-5 feet on his own:

Playing catch with a big balloon ball with mom (and pretending it was a pillow):


10-18-06
The physical therapist brought Asher a walker today. At first he didn't think much of it. Then Alexa went walking with it and then he wanted it back and walked and walked. He even went out of his room and got upset when I made him come back because he is still on restrictions (been 6 days now) for his runny nose (which isn't running much anymore). Asher played with his sisters again today. He has been telling daddy what Halloween costumes to get him and the girls (he wants to be a ghost and Aubree should be a pig (or a pumpkin) and Alexa should be a kitty cat).



10-20-06
Surgery #4 this month
After initially waking up from surgery in the recovery room - sleeping on mom

Eating pretzels and drinking mountain dew!

Vac Therapy System


10-21-06
Sleeping in all his tubes:

Lots of smiles and joy today:


First day in playroom in weeks!


First thing Asher said when he woke this morning is he wanted his sisters to come. Several hours with family today - daddy's 33rd birthday:


10-22-06
Just Asher and me today....
Asher's NG tube got yucky from surgery on Friday so I pulled it out and put in a new one today.

He had a great day of walking, biking, painting and playing. Asher's pump VAC fits on the front of his walker, but is really too heavy for Asher to walk with it like that so I carry it.




10-23-06
The speech therapist working with Asher by "reading" a book together (more like talking about the pictures in the book)


10-27-06
Silly and Cute Boy


Head Dressing Change:
head wound
Eating a cookie still kind of asleep after anesthetic for head dressing change....then sleeping holding cupcakes....he slept until after 6pm from the 2pm procedure:


Playing with Aubree...."floating" a butterfly in the air for Aubree:


Walking with Daddy holding a finger....but he also took 4 steps all on his own!


10-28-06
Discharged from hospital to go home to allow the head wound to heal more:

Day 40 of Chemo Round 3 & Day 12 post 1st Wound Surgery

The physical therapist brought Asher a walker today. At first he didn't think much of it. Then Alexa went walking with it and then he wanted it back and walked and walked. He even went out of his room and got upset when I made him come back because he is still on restrictions (been 6 days now) for his runny nose (which isn't running much anymore).



He has been telling daddy what Halloween costumes to get him and the girls (he wants to be a ghost and Aubree should be a pig (or a pumpkin) and Alexa should be a kitty cat). I hope we can have him home for Halloween.

I'm so bummed we can't take Asher home at the end of this week as thought. On Monday, the plastic surgeon looked right at Asher and said, "Do you want to go home?" He shook his head YES and his eyes glowed. So, when I got done with the dressing change on Monday he started picking things up off his bed and putting them in his arms and lap saying, "This goes home, this goes home...." I then had the fun job of telling him, "We're not going home just yet, honey. Maybe soon." He cried and cried. Each day since he has talked about it. If only I could have caught the plastic surgeon from saying what she did. I have talked about the bad 4 letter word (HOME) in front of Asher, but never directly at or to him. Today when Scott and the girls left he said, "I want to go home too." My poor little boy....

I did his head dressing change a bit earlier today and then put him down for a nap. Last night's nurse woke Asher up (thus me too) too much....I hope we get Jaclyn again soon....(added note: we had Heather tonight and she's AWESOME....not one thing beeped that I heard all night....Asher and I slept great)

4am counts:
wbc 2.2
rbc 3.37
hemoglobin 9.8
platelets 87
neutrophils 53
anc 1166

9-8-06

home, clinic, hospital stay
to start chemo round 3
headed out to the car



car ride to clinic
- typical sibling spats



being silly at clinic

doc checking leg strength



9-11-06 -
playing his Game Boy



9-12-06 -
playroom volunteer reading a dinosaur book to Asher



9-15-06 -
Playroom volunteer took Asher and Mama's picture!



Nurse listening to Asher's heart.



The social worker brought a donated Kenzie Kase
to Asher!

Here he is drawing on his mini-doodle pro.



He held it up and said, "It says HI!"  (Mama
had just written Hi and showed it to him and then erased
it....so he was copying me!)



He really enjoyed playing with the mini
Incredible figures...



...especially the "Baby" one as he called it.



The book got a few seconds attention 

Gift from 2nd cousin
Danielle who is in college
in Milwaukee:

9-16-06 -
Molly visiting Asher



9-18-06 -
sleeping



9-19-06 -
Holding these two toys while he got his NG tube for his CT scan
of GI



9-24-06 -
Fevers &
mouth
and head sores

9-25-06 in PICU

10-2-06 - getting his PICC Line



10-5-06-just not too happy today

10-5-06 - always says his arms hurts
from the PICC line and the tubes tugging

sweating off his fever(s)

10-6-06 - Asher's "boots"




Cuddling in bed with mom:


10-6-06 - Before Surgery

Those were his exact words, the neurosurgeon, after surgery....11pm...."It is safe to assume right now that this could be life threatening...."

That was said after the plastic surgeon told me, "That is a very bad wound...."

The surgery was about 1 hour 15 minutes long.

I don't know a whole lot more right now....or I can't think or type right now.

They went down an inch, to the bone, exposing the bone, along that entire area, cut it out, till it bled a bit and he didn't bleed a lot, which they were worried about because his platelets were so low.

Asher may have surgery again tomorrow....the bone may have to come out....the last protection to his brain....

They will do a lumbar puncture to check for infection in the spinal fluid (brain)....

It was also said that it is at least a "full season off of chemo" in order to heal....

Asher will be coming back up to the oncology floor as long as his blood pressure and oxygen is okay tonight. I am waiting for him to come up here right now. I'm holding one of his bears. I'm crying. A nurse came in and put her hand on my shoulder to show she cared. I know I won't sleep; I'll be by his side all night....

Day 28 of Chemo Round 3

Wish this didn't have to happen....wish I could take all this pain away from my little boy....his counts are up, at least, and he is getting platelets within the hour....around 10pm-11pm he goes into surgery for a debridement. (Thanks for the link Kathleen.) His head got so bad in a day (I refuse to post the photo, it is that bad) that most of the tissue is now dead and has to be scraped out, cut to good tissue and then constant dressing changes....poor guy will have to lay on his belly. Then starts the really really slow healing process....

He's going to CT scan....gotta go....more later

please pray for Asher....pray that the bone from the craniotomies didn't get infected so it doesn't have to be cut out too....pray

7:15pm - OK, CT scan is over, he did SOOOO well!! He's so brave. I sang twinkle twinkle little star during it and he liked that.

So the neurosurgeon (the one that has done Asher's craniotomies and shunt surgeries) and a plastic surgeon will be doing the surgery later tonight.

5:30am counts
WBC 1.5
ANC 1170
Hemoglobin 8.9
Platelets 26

Day 27 of Chemo Round 3

Asher has slept a lot this afternoon. He doesn't really play or want to do anything, except he did want to watch me play Loco Roco today. He continues to have fevers, sweats, huge belly, pain, and doesn't want people to talk to him or touch him. His lips have some sores and dryness. Almost all his eyelashes are now gone. He needed more platelets. After the physical therapist worked on his feet and legs at 2pm, I got him up walking today (even though he said he couldn't because he was sick). While holding both of my hands, he walked from his bed, out of his room, into the hall about 12 feet and then back half of that till I picked him up. He said his toes hurt and he was slow and unsteady, but did great! They redressed the back of his head with something new today....don't think that one will last too long either. If bacteria grows again the PICC line will have to come out and Asher will have to have an IV for his meds and then TPN will stop, etc....so hopefully, crossing everything we have, things stop growing! Asher needs to heal; come on antibiotics, work your magic! Oh....and we won't be starting round four chemo on time because his head has to be healed and that will be "a while" (whatever that means)....today's 5am counts:
WBC=0.8
hemoglobin=9.3
platelet=19,000
anc=560