Posted by Steph in
Head Wound, Home during Treatment, on Saturday, November 18. 2006 at
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
Posted by Steph in
Head Wound, Infection, Surgery, on Saturday, November 18. 2006 at
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....
Posted by Steph in
Head Wound, Home during Treatment, on Wednesday, November 15. 2006 at
Posted by Steph in
Chemotherapy, Head Wound, Surgery, on Tuesday, November 14. 2006 at
Posted by Steph in
Head Wound, Home during Treatment, Surgery, on Tuesday, November 14. 2006 at
Asher will go into the OR this coming Friday (11/17) and hopefully the plastic surgeon can do the skin graft then if the bone is completely covered with healed with healthy tissue. Wednesday's dressing change will just be in the PACU like it was today.
Today's dressing change was OK, but the anesthesiologist was 1.75 hours late so we had to sit there, but Asher didn't seem to mind. He played Game Boy and watched TV. After waiting 1.3 hours, Asher said it was time to get the nurses, he wanted to get into the bed, and it was time for me to walk along with him. He gets Versed before we even leave that pre-procedure room, but he sure knows everything that goes on. He even started calling, "NURSE! NURSE!" The procedure was fine. I got a photo that the wound specialist took, although it was taken so close to Asher's head the flash makes it difficult to see anything. So, I'm not sure what it really looks like. I do know there are some bloody areas again because the plastic surgeon did do quite a bit of debridement last Friday and the VAC sucked a bunch of bloody stuff out all weekend.
Asher woke up pretty mad from the anesthesia today, but I had them give him morphine and bundled him around two blankets and he fell asleep on the bed for 35 minutes more, when I then woke him up (ugh) he was the typical confused and irritated. Asher was more mad today than usual though, going home, and even pulled out his NG tube on the way home....he was pretty upset and confused and I just can't wait till Asher doesn't have to be put to sleep for these nasty dressing changes anymore. I try to smile through it and try to explain to the nurses that Asher doesn't know what he is doing or saying after he wakes up, but many of the nurses try to engage him in conversation, which makes him even more angry. It will all be over soon.
Asher is doing well at home, for the most part. He gets a bit frustrated that he can't get around too easily, but he makes the best of the situation and we try to help him. He has walked a little without his walker, but not far. He does tend to walk on his tiptoes, so I try to encourage him to walk "normal." Asher had thrown up two times yesterday and his tube came out and I put it back in right when Asher was going to bed and yes, he needs another new one today since he pulled it out, sigh....Asher continues to lose weight as he isn't eating and he isn't getting 100% of his calories from the formula via his NG tube because of the dressing changes three times a week. He only gets 1/3 his calories those three nights before the procedure. All of Asher's finger nails are about to shed off 1/3 of themselves....the tip....will have photos in his photo journal to show. As long as they don't tear or rip or break off too early, they aren't bleeding. Just have to protect them sometimes with a bandaide before they are ready to fall off. Asher is coughing more now and is still congested. I'm almost better so the kids will hopefully be better soon too....otherwise, we're all still sick. No fun, but not horrible.
It's hard to believe we are approaching the end of six months since Asher was first diagnosed with cancer. My baby girl, Aubree, turns six months old in 7 days. Scott's leave from work will be up that same day and life will take on some new challenges, for all of us. I continue to ask God to give me patience and guidance as I prioritize things and decide how I will manage all that will be on my shoulders through the rest of Asher's treatment(s)....
Posted by Steph in
Chemotherapy, Development, Head Wound, Home during Treatment, Surgery, on Saturday, November 11. 2006 at
Scott asked me before I left with Asher how I wanted today to go....you know, I started my day not wishing or hoping for anything. I have really changed, in that I no longer hope for anything in particular for each day. I just go with it....just live. Not sure that makes sense, but I find that I have a lot less things to get disappointed about if I don't assume things should go a certain way. With that said, I realized I was still quite stressed today, and in fact have had a much more difficult time sleeping the last two nights. I guess I'm worried about how Asher will be after the graft. The plastic surgeon has warned me, his buttock will hurt pretty bad, and bother him much more than his head. I'm also worried because he will go home after the graft and he's never gone home right after surgery, the same day, before.
I talked to the plastic surgeon before surgery. First she said Asher's entire oncology team confronted her to find out what was going on. They are so anxious for him to be healed up, as much as Scott and I! When we see his hair growing longer and longer each day, we wonder, "How much has his tumor grown?" Some days we try to forget he has cancer and sometimes for short moments it seems like we can forget because Asher seems fine, but we can't forget. We watch for symptoms, we worry he will fall and hit his head, we worry his tumor is growing or his cancer is spreading, we wonder and worry about his future treatment, we wonder when he will eat again, we want to ask for a MRI, and....it is always going to be like this, but knowing he didn't complete the protocol with six rounds of chemo is hard to live with. So....each day I go to the hospital with Asher is another day I hope and pray he is healed. Seeing the discouragement in the face of the plastic surgeon and the oncology team is difficult because I know I feel much worse inside than they do.
So, they got Asher into the OR a bit early today (12:35 instead of 1:00) because there was a cancellation so that was kinda nice, not having to wait around trying to keep Asher occupied. While waiting, one of the OR nurses came out part way through surgery to say they couldn't do the graft because it isn't ready, so the plastic surgeon was going to do debridement and then the dressing change. A bit later, one of the oncologists and Asher's weekend nurse practioner came by. They both sat down by me and gave me an encouraging word.
The thing I like about being at the hospital is that I run into someone I "know" every time now. So many nurses and other hospital staff know Asher and say, "Hi Asher" and take time to ask him what he is up to. Even when I'm alone, waiting, I can get support. There's so much to say about having a friendly face like that each time we go now. Even the recovery area nurses know us and the head dressing changes do seem to be easier since there are many shortcuts to each visit now since they realize I am there three times a week and don't have to answer the questions over and over each admission.
When she was done, the plastic surgeon came out to explain to me the benefits of waiting for a "complete" healing over the bone before the graft. She said it is slow to heal (remember the opening over the bone was only 2cm by 2cm) because he had chemo and was neuprofenic (spelling? ANC=0 for so long) he is slower to heal. The plastic surgeon said she has to poke and prod the tissue near the bone to make sure it is healed over the bone because it can appear as if it is, but then under a thin layer it can prove not to be 'healed.' I can't explain it real well, so I hope this makes sense. She did say that the scalp seemed looser today than last Friday when she said it was tight and wouldn't stretch/close any further. So, she said the wound may actually get a bit smaller yet before the graft since we have to wait for the tissue over the bone to heal. She doesn't know if she will take Asher into the OR on Wednesday or wait till Friday. It is a lot of work to take him into the OR versus just taking him into PACU so she doesn't want to do it twice that week and wants to really try to guess the best day to shoot for, without waiting too long....so she will talk to the wound specialist that will do the dressing change Monday and then I'll know what day she'll shoot for.
So....more days to wait....like one of the oncologists said to me today, "Hurry up and wait." It's hard not having a plan and it is hard being afraid. There's nothing easy about this stuff, but I'll tell you, it is really nice to see Asher smile and talk to the hospital staff. He is HAPPY to go to the appointments and today he woke up from anesthetic so well, he didn't whine AT ALL in the bed unless I tried to tell him it was time to go. (NOTE: Today's end of surgery cocktail was versed, clonodine, and morphine.) Asher knows Nicky the nurse who has been there for all the dressing changes except 2. Nicky offered another patient juice so Asher asked her for juice and said, "Thank you" to her when she brought it to him (Nicky was impressed with how polite he was). Nicky then offered the other patient (who had her tonsiles out) a popsicle so Asher asked her for a popsicle too.
I'll end with some things Asher said today after waking up from his debridement and dressing change:
"I want juice. Yellow juice."
"I want a popsicle. Red."
"I want to have an owie."
"I want to keep my jammies on." (meaning his hospital gown - it was the first time he wore one for a dressing change)
"I don't want my shirt on."
"I don't want to get out of the bed."
"I want to play games."
"I want to stay with the nurses."
"I don't want to go home."
"I don't want to go in the stroller."
"I want to see the doctor."
And things Asher said all the way home in the SUV:
"I want to go back to the hospital!"
"I don't want to go home!"
"I don't want my appointment over."
"I want to go back to the doctor."
"Turn around mommy!"
"I want to go to the store. I want to go to Target. I want to get pumpkins." (I can't convince him we already had Halloween and if I try to remind him it was a couple of weeks ago, he says, "I want more candy.")
(and all of that repeated over and over till we get home)
NOTE: Asher weighed 15.5kg today with t-shirt, jean shorts, diaper, socks and shoes on....he's losing weight since he doesn't get all his calories with his NG tube feeds with anesthesia 3 times a week.
Posted by Scott in
Head Wound, Surgery, on Friday, November 10. 2006 at
So, we'll hear early next week when the Graft is and then we'll go from there. All else is good.
(Steph may update this more later when she gets home)
Posted by Steph in
Head Wound, Home during Treatment, Surgery, on Thursday, November 9. 2006 at
A few days ago I had asked Asher if he wanted to go to the zoo to see the animals and he said no. I was bummed because I was looking forward to taking him to the zoo when he got out of the hospital. It was a high of 90 degrees yesterday (and today). Anyway, so yesterday, on our way to the tree place to select trees to replace ones that died this summer under warranty, Asher said he wanted to go to the zoo. So, for the next three hours both Asher and Alexa couldn't stop talking about it. Aubree was coughing nasty and she was tired, so Scott dropped her and I at home and took Asher and Alexa to Wildlife Zoo. We have an annual membership that expires in two months, so it was a great, free thing to do!! They had a great time!
After Scott called the home health people today, I found out that I am supposed to be reusing the NG tubes that Asher throws up. I just need to keep the guide wire and reinsert it and then put it back in Asher. They can be reused for up to a full month. I had been throwing them away; no one told me to keep them and reuse them. The home health people wouldn't send us any more, but we got Asher's oncologist's office to call and order 10 to be sent to us....so when Asher throws it up outside (like yesterday, at the zoo, when it came out and landed in the dirt) I don't have to reuse it.
Today's dressing change went okay....Asher slept pretty long before waking up and he was confused and irritable but not violet and angry. Woohoo. I don't have a photo today but the wound specialist said the bone is almost covered. We're not sure the graft will be done this Friday and won't know till after the plastic surgeon comes out of the OR after performing the procedure. I'll be signing a consent for it just in case the wound is ready for it. We were told he won't have to stay overnight at the hospital unless his pain level is high. I think this means if he needs morphine instead of methadone he has to be inpatient.
We didn't have to go to clinic today because they said his counts were really good last Wednesday and unless he gets a fever or ill or something out of the ordinary, he doesn't have to go to clinic for awhile.
Asher's weight was 15.8kg today with a t-shirt, jean shorts, and tennis shoes on. He's not eating but at least he is getting enough formula to keep his weight pretty stable.
Asher is coughing more today, as is Aubree, but the rest of us are getting better, so we're sure to be over our colds soon.
Oh, also, Asher's fingernails are starting to fall off at about mid-way up his finger tips/nails. Part of the nail is starting to separate and then the nail breaks away/falls off. The first one to do this is his right thumb, but I can tell all the rest will do the same thing. Maybe this is from the chemo??? Hm. Well, I put a bandaide over his thumb nail until it is ready to completely fall off as Asher is upset by it.
Posted by Steph in
Head Wound, Home during Treatment, Quotes / Inspiration, Surgery, on Tuesday, November 7. 2006 at
Another dressing change done today....Asher kicked, wailed, screamed, cried, flailed, everything you can imagine, all the way home for the 40 minute drive....demirol wasn't the problem Friday or today as he didn't get any today....I think it just comes down to the fact that he gets woke up from a sleep so fast and he hates it (even at home he hates that). I'm going to ask for a bigger dose of clonodine on Wednesday because the dose today was small so he wouldn't be too sleepy, but I think he needs to sleep a bit more....I'm not sure there are any clear solutions to all of this, but the good news is that Asher doesn't have any anxiety when going TO the appointments. Today Asher woke up around 7am yelling for me from his bed and when I got there he said, "Look, the sun came up." So I got him up and said time to get ready to go for our appointment. He grabbed his green dragon and two packs of water balloons and said he was ready to go (cept I had to get him dressed yet, so did that and then off we went)....then when we are there (which is 1 1/2-2 hours before the procedure even takes place), we have a routine, play games, watch cartoons, and then get Versed, and then get put to sleep. The wound specialist took a photo today so I'll post it here (check out all that hair on his head, although there isn't any on the back where they pull the tape off).
Other than the daily stuff, Asher is playing outside a bunch, playing inside some, riding his tricycle, drinking some but not eating, etc. He threw up his NG tube yesterday and had to get a new one before bed and it went okay (he's still not happy about getting it put in, but who can blame him). He sleeps through the night in his bed with NO problems, going to bed around 7pm-8pm and getting up around 7am-8am. He has his pole with his VAC hanging and tube attached to his head and he has the formula for NG tube feedings going at night too.
All of us are SICK SICK SICK....Alexa has a HORRIBLE cough and is extremely tired all the time....Asher is coughing a little but mostly a snotty nose that needs to be blown (and is hard with a NG tube in there)....Aubree sounds sick in her "voice" but is doing the best out of the three....I am about like Aubree, sound hoarse, sick but I'm blowing my nose a lot yet (don't have that real nasty cough that Alexa has)....Scott is the healthiest of the bunch, as always, but even he is tired and coughing just a bit....so....hopefully we can only get better from here on out.
I'll end with some quotes:
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."
"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity."
"You may have to fight a battle more than once to win it."
"There is only one happiness in life, to love and be loved."
Posted by Steph in
Head Wound, Home during Treatment, Surgery, on Saturday, November 4. 2006 at
Today Asher was taken into the OR so the plastic surgeon could change Asher's dressing on his head wound. She also did a little debridement/testing/looking-at the tissue to make sure it looked all healthy. The bone is still exposed. During the last dressing change, the "wound care specialist" put an extra piece of foam through the tissue opening down to the bone, as explained to me by the plastic surgeon. She told me that should not be inserted like that and will not allow the tissue to heal, so she is calling to talk to the nurses and wound specialists in charge of doing the Monday and Wednesday dressing changes to make sure they understand how she (the plastic surgeon) wants it done. The plastic surgeon is hoping for the tissue to go over the bone by next Friday and she has hopes/plans to do a skin graft to close the wound next Friday in the OR. She said if the bone is not covered by tissue by next Friday, she will want to drill holes through the bone flap (with permission from the neurosurgeon) to get good blood flow so the tissue will heal over the bone flap.
I think some of my anxiety from today came after asking the plastic surgeon to give me more information regarding the skin graft....she will take skin from a buttock and use that to close Asher's wound. Asher's butt would heal fine on its own (she says) and with the wound VAC Therapy System put back on his head after the skin graft is done, it would "heal" in ONE WEEK. If she didn't do the skin graft, she says it would take MONTHS for the scalp to heal. She said it was already very very tight today and stretched as much as it will with the VAC.
So....that's where we are at with the head wound healing.
No news on chemotherapy....no timeframe for resuming....no idea what protocol we will do/pick up/follow....no idea about that right now....still waiting to know when Asher is healed enough to start chemo again. We are already 6 weeks behind.
Also, I don't want to go on and on about how bad Asher reacted to the drugs that the anesthesiologist gave him today....I just want to say that I am still frustrated with the process....so much today that I was brought to tears twice as Asher screamed, hollared, kicked, and hit me in the hospital....it was another NEW anesthesiologist today, that doesn't know Asher, and didn't read the chart or listen to what I said....he gave Asher demirol in the IV and via IM (shot in the right arm muscle)....the shot is what did it....Asher doesn't react well to the "long lasting" demirol (as we learned from experience in the PICU one time)....arg....anyway, demirol is now on Asher's "allergy" list....I can not wait till Asher's head is healed and we will be done with all of these PACU/OR visits....pray for my patience with the process....
Posted by Steph in
Head Wound, Home during Treatment, Surgery, on Friday, November 3. 2006 at
For those wanting to follow along with the healing of Asher's head wound, here are the latest two photos (also in the "Hospitalization for Head Wound" photo journal):
Head Wound Dressing Change on 10/27/06
Head Wound Dressing Change on 11/1/06
Asher has developed a little dry cough as the day progressed today. Hoping he doesn't get too much sicker.
For those who like to see photos....I finally added more "Home in May" photos and "Home in July" photos. I think I may be caught up now.
I wanted to mention, too, that we love comments and guestbook entries! Sorry to have to "moderate" them but I get about 10-15 spam/junk entries per day.
Counts from noon on 11/1/06:
weight=16.0kg (diaper, shirt and jean shorts, but no shoes or socks)
Next update when there is more info to share.
Posted by Steph in
Development, Head Wound, Home during Treatment, on Thursday, November 2. 2006 at
The head dressing changes in PACU are going okay. Asher wakes up a bit irritable, but manageable. Monday he was mad all the way home saying, "I don't want to go home, I don't want __." That is very typical of Asher after anesthetic. No one else realizes it is, but that is his response, confusion and not knowing what he wants. Wednesday we had to go to clinic after the head dressing change and it was a long day. Asher was a bit upset we had to be in clinic, but again, some of it was just the after affects of the anesthetic...."I don't want Dr. Henry (he was convinced his doctor was Dr. Henry and I couldn't tell him it wasn't). I don't want Annie to come in." etc. He was quite thristy and the nutritionist was in the room at the time and got him water and he drank maybe 2tsp of it and then a few minutes later we were scrambling to find something for Asher to throw up in....a nurse practioner from the oncology floor had just poked her head in to visit and emptied a bag she had so Asher could throw up in the bag. Poor guy. After the social worker left the room, Asher fell asleep on me while I waited to get Asher's blood counts (they drew blood through his PICC Line). He was pretty happy when we left, helping me find the car. I saw on the news last night that we missed seeing the snow outside the hospital yesterday. I was bummed. They must have delivered it after we left at 1pm. That might have been fun for Asher.
Scott went to work for 1/2 a day Tuesday and the three kids were really good for me. I was even able to bathe Aubree and give Alexa a haircut. And, when Scott got home around 2pm I got a nap and all three kids fell asleep too!
Halloween was okay. Asher was pretty happy about going trick-or-treating, but after trying on his mask he decided he didn't want to wear the costume, just hold it. So I pushed him in the single kid stroller, with his backpack with NG feeds and his VAC sitting in the basket behind/under him. At first Asher didn't really get trick-or-treating, but then he would say, "Lets get more candy." We went to many houses, but Asher started to get cold (and tired) and so we went home and when I got him inside, he threw up as soon as I set him down. He enjoyed looking through his bag of candy and holding some of it, but didn't try to eat any. He also enjoyed watching Alexa look at all her candy and watching Aubree try to do a wiggle-worm crawl to get Alexa's candy (it was sure cute).
Asher has been walking well. His VAC hangs over the front of his walker in the carrying bag they gave us for it. It is small enough and light enough to hang there and allow him to get off the couch and walk around by himself, which he does. He's playing pretty well with Alexa, inside and outside. They have their normal fights.
I am sick with a horrible cold. Sore throat, headache, tired, and stuffed up really bad the last two days, this morning being the worst so far. I'm hoping Asher doesn't get it, but not sure how it could be avoided this time. In the past when I got sick (two times) Scott would stay with Asher at the hospital and I would stay home and stay away from Asher. Asher does have a little dry cough this morning, which is what my illness started with (and Scott said he had had a cough too although didn't get worse), so I'm just dreading the idea that Asher will be sick now. Alexa had a fever most of yesterday, over 102 before Tylenol. So, I think she is getting sick too. Not sure where we picked this up, but it is what it is and hopefully Asher won't get too ill from this.
Not too much else to update with....I'll slowly add photos to Asher's "Home in Oct." and "Home in Nov." photo journals.
Posted by Steph in
Head Wound, Home during Treatment, on Saturday, October 28. 2006 at
Posted by Steph in
Head Wound, Hospital Stay, Surgery, on Friday, October 27. 2006 at
Today Asher had his third VAC therapy dressing change on his head. They gave him a dose of versed upstairs, two more doses downstairs and then the anesthesiologist told me later it took three times the "normal" amount of propofol to get him fully asleep. My boy is one tough boy! He was groggy and out of it and they told me he was still putting his hands up to his head while they started to work on it.
Then the anesthesiologist gave him versed, zofran, clomodine (spelling?), and demirol. While he was out they did his PICC Line Dressing change too, more woohoo! He woke up slow slow slow, got brought up stairs and he slept on the way up, then woke up when I moved him to his bed and he ate a sugar cookie that my friend Barbara brought to him today and drank milk, and is now sleeping again while clutching a thing of cupcakes. Everyone that comes in just smiles big. (NOTE: Right now he only eats right after he wakes from anesthetic if he wakes in a good mood.)
So, the anesthesiologist said I could only stay till Asher was out and then I had to leave....BUMMER! BUT, a nurse came out to get me from the waiting room part way through and said the plastic surgeon and the neurosurgeon both wanted me to come see it. Yeah! I was glad I got to see it in person. It doesn't look as bad in person as it does on my camera (the nurse had taken a photo). They said it looks better than they thought it would. It is smaller. It isn't bleeding. The bone looks okay right now, but still exposed. They said he won't need antibiotics at home. They said they are feeling good about the VAC Therapy that is being used.
So, all good news. Oh, and for the dressing changes next week, they will NOT be done in the clinic. They will be done in the PACU just like today. The only thing is, they will be done outpatient so we have to check-in at admitting 1 1/2 hours before the procedure and have to stay till he is awake....for instance, next Friday we have to be at the hospital at 6:30am.
Now to pack up this room and take my boy home tomorrow morning or early afternoon!!!!!!! I'm just going to enjoy this time and not worry about his tumor, his cancer, his chemo, his future therapy, nothing, just enjoy having my kids under one roof again! Asher hasn't been home since the 2 days and 3 nights in September (9/5-9/7)!
Oh, and Asher's counts today:
anc 799 (dropping more and not sure why)
weight - 16.1 to 16.6 varying depending if he had shorts or shoes on
Posted by Steph in
Head Wound, Hospital Stay, on Friday, October 27. 2006 at
Asher was really happy when he woke today, although did complain his tummy hurt again. A bit later he pooped...he still seems to mix up his tummy pains and his bowel pains and it is the same every morning (and sometimes evening now too). This formula that is going through his NG tube, 18 hours a day, is making him poop several times a day, and more like diahrea. They had switched to the "fiber" one but I don't think it has made much of a difference. Anyway, he kept telling me, "Go take your shower, Mom," when I kept coming back because someone else was in the bathroom at that time. Then when I finally was showering, I guess he talked to people that came in by him. But a couple of hours later he didn't seem to feel too well and said he wanted to go to sleep so I gave him my down pillow and he fell right to sleep and slept a bit even after Scott and the girls arrived for a visit.
Asher has been having lots of mood swings the last two days so I talked to the "pain lady" and we have decided to go back to a dose of 2.5 with the methodone. We had dropped to 2.0 two days ago, I think. He doesn't complain about pain, he's just very irritable, so I think that is the pain talking. I agree with her, it was good we figured this out today so we could decide on a good dose for him to have at home. She also said this is a low does; she is surprised he hasn't needed more pain medicine. Oh, and she told me she got a good anesthesiologist for tomorrow that will give Asher something to wake him up slowly....crossing my fingers it goes well tomorrow.
We aren't exactly sure why, but the walker for home was delivered to the hospital today and the VAC and all the dressing change supplies were delivered here, too, tonight. I'm thinking tomorrow they plan to hook Asher up to the rental VAC for home (quite small compared to the hospital one) so I can get familiar with it and make sure it works. So maybe that is why it was delivered here. Since all dressing changes will be done Monday, Wednesday and Friday, at the clinic, I'm hoping I can bring the supplies there, but I need to check tomorrow. That's what they decided on for the dressing changes, to use a drug (that starts with a "C") in clinic, starting next week, instead of doing it like they did yesterday. The nurse practioner told me today she thinks that will be less traumatic for him. The nurse practioner said she has her discharge orders ready and all she needs to do is push a button on the computer after hearing what the plastic surgeon says tomorrow afternoon. If we are able to bring Asher home, we will be doing that around noon or 1pm on Saturday and the home nurse would come before the 5pm antibiotic needs to be hooked up.
Asher is asking for food lately. Tonight he asked for a cheeseburger, chicken nuggets, french fries, and cheptchup (ketchup). I'm sure he wanted McDonald's, but since I don't have a car here while I stay here, I had to order it from the cafeteria. He took a bite of a french fry dipped in ketchup, chewed it and said, "ICK" and spit it out. That was that. He does like to drink mountain dew though (maybe 2oz per day), which is interesting because he never liked it before chemo! He also sips whole milk (maybe 1oz total per day).
Today Asher walked holding on to ONE of my fingers with his left hand and pushing a toy vacuum with his right hand. He did GREAT! His balance is really good and he's so strong. He does still need his walker, though. The physical therapist said she feels very little resistence in his ankles/feet now. He runs at a pretty good speed with his walker. He is an amazing, AMAZING little boy. I am SO PROUD of my little boy's willpower and drive. He's really an inspiration!