Day +105

In 1/2 an hour Asher will be leaving for his hearing test (7am) and his Broviac removal surgery (9:30am).

The anesthesiologist called us at home last night at 7pm to discuss anesthesia and pain meds. I don't ever remember them doing that.

All should go well today.

Update #1 (7:50am): Hearing Test
High frequency hearing is within normal range now. Dramatic improvement in left ear normal ranges. No hearing aid necessary. (I'm not Scott got the correct info - read more here.)

Update #2 (12:05pm): Surgery & Home
Asher went into surgery about 9:40am, and after my OB appointment, I met Asher and Scott at the hospital entrance around 10:35am to take Asher home. Quite the fast in and out just like we thought it would be. When I called them to see if they were done, Asher wanted to talk to me and he was crying a little and said, "Mommy, my catheter is gone." I think it was a bit emotional for him. He was very protective of it. Always helped me take good care of it. I know he won't miss it, but he is a lot like his mommy in that he is emotional about change. He had that particular central line since January 2, 2007. I guess Asher can actually go swimming in 5-7 days. Right now, though, Asher is asking to go swimming NOW and he says he is already healed. So, hopefully the 7 days go by fast. I can't wait. He used to love to swim. At the lunch table he said, "Lexa, the nurse took my catheter out." He already doesn't seem to mind that it is gone. Asher had slept all the way home, and I even drove a little further west than I had to to give him a chance to sleep a bit longer. They had given him a little demirol for pain; we have oxycodone at home if he needs it.

Update #3:
Scott told me when he was waiting to be called in for pre-procedure, a nurse came out, looked around and left. Then 10 minutes later she came back out again, and called, "Asher." When Scott and Asher went in she said she was sorry, she had been looking for "Mom." Then he said while they were waiting inside at pre-procedure, all the nurses kept poking in looking for "Mom" and asking, "Are you Dad?" and "How's Mom?" and asking how Asher was doing and how his head was. This brought a huge smile to my face! I think I had met almost all the nurses there when I was taking Asher 3 times a week for his head dressing changes for his head wound last fall. I seriously think their smiles and friendly hellos got me through those visits! I'm so greatful to all of them for caring for Asher, and our family!

The surgery to put in the BROVIAC and the spinal tap happened on time and were done by 10am. Asher slept off the anesthetic till 11am and then yelled and screamed and kicked for 2 hours. "I want to go home." "Daddy carry me." "I want to be free." (He also unhooked his fluids and took off the other cap on his BROVIAC.) "I don't like Mommy anymore." He was spitting, wiping snot all over his face (wouldn't let me use a kleenex), and trying to hurt himself. We got lucky last Friday with him waking up so well and he made up for it today. It was hard. After Bendryl and then Versed and then eating a few bites of banana, teddy grahams, and scooby snacks, he finally took an hour nap. Now we have his DVD player (gift when he was in the hospital last time) and other items in his suitcase (Kenzie Kase) here for him to occupy his time. Maybe soon we'll have a room. Almost 5 hours of just sitting in PACU. I could use a nap. At least he's kinda happy. I reminded him that we packed our bags last night together to stay and we'll be going up to the 2nd floor soon. I think we'll even be in the same larger room we had in round 3, but on the non-window side.

Clinic Visits and head dressing changes (VAC Therapy System) in PACU or OR - Monday, Wednesday, and Friday after discharge from hospital on 10/28/06.

10/30/06 10:20am PACU




11/1/06 9am PACU and 11:30am CLINIC
Wound Photo

Gameboy in admitting before getting checked by nurse in PACU


In Clinic, Asher wanted to leave, so he took the umbrella stroller and started walking out of the room and down the hall....he yelled and cried when I picked him up to go back into the room....


Asher fell asleep on me in clinic after several people came to talk to me and check him, after he threw up, and while we were waiting for his blood counts:


11/3/06 10:30am OR
pre-op after getting Versed drug through his NG tube


11/6/06
playing a video game

listening to music

helping to put in the medicine in his PICC Line to put him to sleep

click to see head wound & hair growth

11/8/06 PACU
5th floor of parking garage with a helicopter parked at the top

before waking up in 'recovery area' in PACU


11/10/06 OR
2nd floor parking garage waiting for elevator

Waiting in admitting...

Right before going into the OR after getting IV Versed in his PICC Line (holding the stickers up that the anesthesiologist gave him)


11/13/06 PACU
In admitting:

Before procedure:

Sleeping in recovery after morphine:

Upset in the SUV on the way home - he pulled out his NG tube too and was mad then that the tape was still on....


11/15/06 PACU

(no photos from this day - forgot my camera)

11/17/06 OR
Waiting to go into the OR (they were an hour late)


11/18/06 - HOME DRESSING CHANGE #1

Day 43 Post Wound Surgery #1

Scott snapped some photos this morning when I did Asher's dressing change. The bone is definitely still visible. Asher sat pretty still for me. He said, "Ow, ow, ow, ow." I did it pretty fast and then he was back to his games and he's in a good mood this morning.

Wound Photo 1
Wound Photo 1 - closeup
Wound Photo 2

11/19/06 - HOME DRESSING CHANGE #4



Wound 11/19/06 PM

11/20/06 - Plastic Surgeon Clinic Appointment



11/20/06 - HOME DRESSING CHANGE #5 - Day 45 Post Wound Surgery #1

Wound 11/20/06 PM

12-2-06 = Day 57 Post Wound Surgery #1

Wound 12/2/06

12-5-06 - Day 60 Post Wound Surgery #1

Wound 12/5/06 AM

12-7-06 - Day 62 - Skin Graft

12-13-06 - going into OR



Skin Graft didn't take....it was removed....
Head Wound 6:30pm
& a Closeup

1/1/07 - day before admit for Chemo Round 4
Click to see the back of Asher's head from this morning.

Day 6 Post Skin Graft & Day 68 Post Wound Surgery #1

The skin graft didn't take.....no real reason why, says the plastic surgeon. {Well, it was also said that it could be one of three reasons (1) leak in yellow bolster dressing - but there wasn't, (2) excess fluid behind the skin - but there wasn't, or (3) just rejection / bacteria present.} She said it is smaller though and will heal on its own now in the next 10-14 days. Or, I mean, it is supposed to heal in that time....maybe I could ask you all to pray for healing....please.

So, she took the skin from the graft off his head and part had grown out past the scalp, so she cut it off and used silver nitrate on that area. Then he has a dressing with bacitracin and telfa/gauze that I will have to change one time a day. He still has his 'hat' on to keep the dressing in place.

Head Wound 6:30pm Today & a Closeup

Anyway, all of his butt wound is healed except a small part. We're supposed to let him go diaper-less for about an hour to let it dry up. Not sure how long it will take for the scab to make it heal and then the scab to fall off. A week or two, maybe? Also....took his diaper off and it pulled off some of the scab and it bled a lot.

He will go back to the plastic surgeon's clinic on Wednesday for a checkup.

The plastic surgeon is calling the oncologist and letting him know probably can't restart chemo now till first week of January 2007 instead of last week of December 2006.

Scott and Asher left already for his 10:30am dressing change this morning. We agreed to go to the plastic surgeon's main hospital outpatient clinic for the dressing change today since she was having office hours there and wouldn't be able to drive to PCH in time. Asher will be put out....needs anesthetic because the plastic surgeon said he has to be very still while she removes the sutures on his head and she's sure he wouldn't be if he wasn't put out. I didn't go with Asher because I am sick with some nasty cold/flu/something. I thought I was getting better but yesterday I got worse. I'm having trouble breathing and this cough is nagging. Alexa was only sick a couple of days last week and Scott and the other two kids are fine. The kids all got the flu shot on 12/1, so maybe that's why they are being spared this cold. At least I hope they are and I wasn't the first or second to get it. I'd like to see Asher skip this cold right now. He doesn't need that. Maybe Scott will post when he gets home to let us all know how it went today. It feels weird to not be the one going with him this time.

Also, Scott and I are meeting with Asher's oncologist next Tuesday to discuss restarting chemotherapy....it is going to be soon....12/28 maybe?

Day 2 Post Skin Graft

We were warned ahead of time, and told it was okay if his butt owie leaked. It did. All the blood leaked out the bottom of the tegaderm today. We were told we don't have to add more tegaderm or do anything special. (I'm getting a major break this week as far as dressing changes - only have to do the PICC Line dressing change tomorrow.) Anyway, now it just looks like a raw owie. One that you could imagine if you went down one of those high wavey slides, while sitting on a burlap sac, and your finger hung over the edge and rubbed against the plastic/metal slide and you burned the top layer of skin off....I did that as a child and that's what it reminds me of. Asher has not complained one time about the pain. Yesterday, 1 day post skin graft, I gave him oxycodone at 12:30pm because he seemed a bit more fussy, otherwise, he has only had his methadone, 2.5ml, every 12 hours as well as his oral antibiotic. He runs, sits, scootches on his butt, and more. It doesn't seem to phase him.

Day of Skin Graft

Asher peed in his pull-up tonight (after hours and hours of not going)....so I had to take it off and either put a new one on, put a diaper on, or put underwear on him and risk a leak (from pee or the owie). Well, once the pull-up was off (which didn't come without tears, Asher didn't want me to take it off and held on tight to both sides), he felt the tegaderm (clear plastic tape over the graft donor site on his left buttock) with his hand. He cried out, "What happened to my butt?!" "Oh, I don't want an owie on my butt!!" he cries. Awe, I felt so bad for him. I didn't know what to say....at all....so I said, "You have an owie there to fix your owie on your head." Umm....geez....after I said it I thought that sounded dumb probably, although it was true, how could that make sense to a 3-year-old?! Ugh. I felt so bad for him. He was quite upset and would NOT let me put a new diaper or pull-up on him. Scott wanted me to insist, but I said just let him be. So, he went around naked for a bit. Wrapped him in a blanket if he wanted to sit down. Finally he was okay with underwear on. An hour or so later I wanted to put a diaper on him (for one, we were warned his owie could leak, and for two, last time he went to bed with underwear on he wet his bed)....he didn't fight me, but, about 10 minutes later he took all his clothes off and his diaper. Scott said he peed on the toilet then and insisted on George (curious george) underwear. So....I guess we'll just wash what needs to be washed if something leaks, and, let him grow up a bit.

Day 62 Post Wound Surgery #1

Got home an hour ago. Asher had his skin graft today. His surgery was just over 1 1/2 hours. He continued sleeping off the anesthetic (under demirol, morphine, versed, and clonodine) for another 1 1/2 hours....he still didn't wake up well....thankfully I had Scott meet us at the hospital around 11am so he could help with getting Asher out of the hospital and into his car seat. Also, I was thankful to see how warm it was outside today because Asher wouldn't let me put his shirt on and he fought me putting his pants on, so he rode home with no shirt on cuz I gave up and didn't want to hurt his head. Also, it is hard to know where to hold him, grab him, as the graft donor site is his left buttock.

He will be on an oral antibiotic for 7 days (every 12 hours) and continue on methadone (2.5ml every 12 hours) and will also get oxycodone for pain. He's eating a cheeseburger, slowly, right now....with short intervals of sleep. Asher is in pain....I found him in one of the playrooms (carpeted) on all 4's banging his forehead against the floor. When I picked him up, he said, "I want an owie on my head. Right there. I WANT TO HURT MY HEAD!" This was about 10 minutes after the oxycodone dose (2.5ml). He cried himself to sleep on me but only slept 20 minutes and is now working on the cheeseburger again.

Aubree was very good at the hospital. Everyone called her a "mini-Asher" because she looks a lot like him. Alexa had a slumber party at Grandma Val's last night and will probably have one more overnight tonight.

Thanks for the well wishes. Gotta get back to the kids.

I'm about to go wake Asher up, change his head dressing, and then off to battle traffic. His surgery is at 10am, hopefully! I'm bringing baby-A with us. Scott is going to try to be there when Asher wakes up so he can carry him to the car and get him in the car seat; I just physically can't handle Asher when he wakes up from anesthesia anymore and with his graft, his butt will be owie....send good thoughts. Thanks!

Finally got doctors to call us by 9:30am and let us know that the neurosurgeon and the plastic surgeon both said the MRI looked "good." I guess they all looked at it last Thursday and Friday, so I'm still wondering why they didn't call and the message relayed from the oncologist was "possible infection in the bone flap"....it had me worried all weekend. Sigh. Oh well; more good news!! Oh, and this morning we found out the neurosurgeon no longer has an office at PCH, as of this past Friday. Not sure what that might mean for us in the future.

So, got the girls dropped off at my mom's and got to the hospital at 11:50am. Got Asher's weight checked. It was 15.0 and 15.1kg and the nutritionist was pleasantly surprised. She now thinks last week's 13.7kg was just a mistake. I told her it was always 15-16kg at PACU/pre-OR the last month.

Then got to admitting for Asher's surgery and they finally called us in at 1:40pm. At 2:05pm the anesthesiologist came in and said, "I see he got into potato chips at 10am (I had told the RN that Asher got a potato chip before I saw him and stopped him), so he can't have surgery until 4pm, and unfortunately the plastic surgeon isn't available then." Then the plastic surgeon came in and they chatted in front of me. I thought it was interesting when the plastic surgeon said she had to be somewhere at 4:30pm that the anesthesiologist then said, "Well, we can do it at 3:30pm. Does that work for you." I don't get how she was trying to make everything safe for Asher (so he didn't aspirate a potato chip during surgery) but she could all of a sudden move it to 3:30pm when the plastic surgeon had a conflict. Also, the surgery would take an hour, so that wasn't going to work. She also told me Asher could have eaten at 8am (after I said he hadn't eaten in 16 hours) when everyone has always told me he could not eat for 8 hours before surgery (that would have been 6am). I get so frustrated with all the different things they tell me. I don't get it. Shouldn't their "rules" be the same for all anesthesiologists, especially since they are all in the same group? During the chatting, Asher is screaming, "I want a cheeseburger." The anesthesiologist then said, "Do you want me to give him some drugs in his IV to calm him down?" She said that in the same breath as, "I have taken care of Asher before." I'm thinking, then why are you offering him drugs, you must know they make him worse or don't help. Anyway, I was even frustrated when the plastic surgeon said to me, "There is a lot that goes into scheduling. We do the best job we can to occomodate you." Umm....I'm trying to think....nope....they have never asked me what the best time for surgery is for me or for Asher or the rest of our family. They have always scheduled surgeries/doctors/surgeons/anesthesiologists/etc for what works for PCH and Scott and I have always shown up on time, or a few minutes late. And, honestly, I do think the plastic surgeon would have done the surgery last Friday, but she had several surgeries in the afternoon at a different hospital and said we probably should do it at PCH since all his files are there and she couldn't drive back n forth in time. For the most part, I had to just keep my mouth shut during this 5 minutes of conversation because I was getting steaming mad inside....oh, and Scott's mad....said I shouldn't have even told them about the potato chip....

Lesson learned: Next time Asher gets into the pantry before I can stop him, don't waste 5 1/2 hours of driving and waiting around, just call the hospital and tell them to reschedule.

So, I vented. I could have just posted this: NO surgery today and it isn't rescheduled yet. (It has been rescheduled to Thursday now.)

It really is amazing, how good the wound looks tonight. It probably would have been okay to graft Friday, but I'll accept Monday as the best day. It is scheduled for 2pm at PCH OR. Not a real good time; for 6 hours I'll have to tell Asher he can't eat. He's going to cry. Anyway....here's the wound photos from tonight.

Wound 11/29/06
Wound 11/29/06
Wound 11/29/06 - closeup

There was a cancellation in radiology, so Asher's MRI (head and spine) is tomorrow at 10am. Sounds like we may hear the results Friday.

The plastic surgeon said Asher's head is healing nicely. Not ready to graft yet and she is thinking Monday is a better day than Friday. There isn't as much tissue over the bone as she would like, yet. So, someone will call us before Monday with Monday's OR time. The surgery will be an hour long. She will have a large yellow dressing/bolster? sutured to his scalp, just like he had when the Integra was put on back in early October. She will then have to take him back to OR 5-7 days after the graft to remove the sutures/bolster since he shouldn't move when it is removed and she is too afraid to try it without putting him out (good idea). She said Asher's graft sight (butt) will heal in 5 days and she will show me how to take care of it. Asher will need pain meds, but he is already on them. She said usually patients take Tylenol with codine but we have oxycodone to take the edge off, so we'll probably just use that as well as the methadone every 12 hours. She said 2-3 weeks, closer to 3 weeks, before Asher can have chemo after the graft.

When we got to the other hospital, at the oncology clinic, the waiting room was packed. Not one chair open to sit. The last roommate Asher had when he was inpatient was there. It was nice to see familiar/friendly faces when we got there. It made me think about finding a "moms of cancer kids" support group in Phoenix....again....have thought about it in the past but have never made it a priority (yet). I'd like to just get together with other moms, just to talk, share, give support, a friendly face and smile, and maybe even a hug....

Asher had a good checkup at the oncology clinic. Asher has lost quite a bit of weight. He's down to 13.6kg (30.1lb). So, he has lost 5lbs in one month. Yikes. The nutritionist backs me up with not putting the NG tube back in, for now. I told her he just started eating a "full meal" two days ago. She saw him eat a banana while he was there. She told me to be careful how much milk (whole milk) he drinks, as it could fill him up too much and he won't eat foods as much. She asked that I bring Asher in for a weight check (on their scale) before surgery on Monday.

Asher and I went through the McDonald's drivethru for lunch and he ate a cheeseburger. About 15% of the bun and 95% of the meat. He also had 6 french fries. It is the first McDonald's cheeseburger he has eaten in months. To see my little boy eat....there are no words to describe the feeling of seeing him eat. It has been one of the most challenging parts of Asher's illness/treatment for me, personally.

I'll be able to take the girls (and Asher) to the pediatrician's Friday at 3pm, instead of rescheduling, for Aubree's 6 month checkup and Alexa's owie checkup. On Saturday Alexa fell and hit her head on Asher's bed (that's what she said, we didn't see it even though Scott was only 10 feet behind her), so she had to go to the ER and get durabond on her forehead (no stitches). The ER doc says the pediatrician should check it too. I think the pediatrician will enjoy seeing Asher.

Lots of driving around this week. We stay busy.

Asher will go to the plastic surgeon's clinic Wednesday at 10am (at a different hospital) and then following that I'll take him to the oncologist's clinic at PCH so the oncologist and nutritionist and social worker can all come talk to us. Not confirmed, but Asher might go into the OR Friday (to close his head wound or skin graft) and they are trying to get Asher into radiology for a MRI for Friday too, hoping he can just have one day with anesthetic. Now that Asher is eating again, it is difficult to tell him he can't eat or have milk before surgery or MRIs.

Not with Asher, but me. I can't sleep. I wish I would stop dreaming too. I get so nervous before each time I take Asher to the doctor, especially if I don't know the plan or what is really going to happen that day. I am sure that is why I was up at 4:30, just laying there, physically tired but my mind racing. I got up and watched TV.

Yesterday Asher went with Daddy on an errand, to pick up my Rx med and exchange a gift at Walmart. Before he left he said, "I gotta go get Mommy. [running to me in the other room] Come on Mommy. Let's go. We gotta go to the hospital." He said it with a smile, even some excitement. How could my little boy be happy about going to the hospital....even when he didn't have to go?

Asher played outside again yesterday afternoon (photos of Saturday's playing outside are in the photo journal). When he came in at 6pm it was pretty dark already and he said, "The sun went down. I can't play anymore." So, before he got settled in to playing inside I did his PICC Line dressing change and then his head dressing change. The PICC Line dressing change was a bit challenging. The last three weeks it was always done by someone at the hospital when Asher was still out from profonal. So, this was my first one done at home. He kept waving his arm in the air while I tried to get the tape off. It wasn't even really that stuck anymore and the adhesive remover did a good job too, but he HATES the tape. He yelled and cried a bucket full of tears. Then he sat perfectly still while I washed the Line and put the new tape on. And, he sat so well for his head dressing change, with his chin down to his chest and everything. The most difficult part of taking the gauze off is the top part, it seems to dry the fastest, I suppose gravity is the reason for that.

So, off to clinic here soon. They open at 9am and I go without an appointment (just going to be "fit" in).

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....