We have slowly been adding more straw-sippy cup feeds into Averi's daily regimen (thank you Tang, you are my hero). The goal is to have her drink four 4oz. cups a day, along with the baby food that she eats orally.
Guess what? Yesterday, it finally happened! She drank all 4 cups!!! I swear, I thought this day would never come!
She was still short a few calories so we had to push an ounce of formula through her G-tube with a syringe, but we didn't have to hook up her pump at all for the entire day! (I hope the !!! are relaying to you how big a deal this is!!!) I am SO proud of her! Maybe one day we won't even need that dumb G-tube...one day.
Our neighbor's brother has a farm and we went to see his lambs today before they grow up and aren't lambs any more. I know Averi looks pretty frightened in this picture, but she's really somewhere between intense excitement, extreme hesitation, and stimulus overload.
I was a mean mom and wouldn't let her touch any of the animals (lambs, cows, chickens, kittens) and I was sanitizing everything in site. Do you think I'll ever back off on the sanitizer? Anyways, being out and about really wore Miss Averi out because she fell asleep mid-color on the way home.
Funny note: We stopped for lunch at a pizza buffet and the owner made a comment about "where's all her hair." When I absentmindedly responded that "the chemo took care of it" he first laughed because he thought I was joking and then started apologizing profusely and explaining that some babies her age still don't have hair. I guess MDS is such a part of our lives that I forget it's startling to see a baby with cancer. :)
After resting up, we headed over to the annual Down Syndrome Zoo Day. It was super hot, even though it was in the evening, but my girls were ready.
We walked around for a while looking at all the animals and then headed over to the party. Averi wanted to make sure that I pointed out that she and Kaili got their faces painted.
It might seem silly, but sometimes it's refreshing to realize that there are so many other people in a similar boat as you. It's always so much fun to hang out with other families affected by DS and not have to worry about explaining anything, but rather share your stories with a sense of understanding.
After eating, we headed over to the carousal. Things started out fine with Dan sitting on a stationary bench with Averi while Kaili and I rode the horses. Then Dan got adventurous and sat Averi on one of the horses. Of course she immediately grabbed on to the pole - probably the most germ infested item in the entire zoo. Since she'd already touched it and she was having so much fun I let her finish the ride, but once it was done I immediately ran to the stroller and doused her in sanitizer. Yah, that's probably not going to stop any time soon, huh?
She loved riding the horse and kept shaking the pole after the ride stopped, trying to get it to start going again.
To finish off the germ fest - I mean, fun time at the zoo, the zookeepers brought out some animals for us to pet. Averi really liked the albino snake and decided to pet it for a while. Don't worry, there was sanitizer for that too. :)
I know it keep saying this, but it was SO nice to be out in the fresh air doing things together as a family again - even if there were germs involved!
It's been a week since Averi had her central line taken out and we have been given the go ahead to take off her band-aids and give her a BATH!
On a side note, we were all making jokes about how much Averi would miss the dressing on her chest but we forgot to take into consideration the band-aids that would replace it for a while. She keeps picking at the band-aids and pulling them off. This scares me because I don't want the site to get infected while it is healing. When the port is taken out the surgeon doesn't even stitch the hole closed so that if the site isn't completely sterile he doesn't close any germs in. Luckily, the site is looking great and the scab is already getting smaller - just in time for a BATH! (If you can't tell, I'm pretty excited about the BATH!)
When Averi's port got infected and they had to remove it (note the matching scar on the other side of her chest) there was a break of a little over a week and we were able to give her a bath the night before the new port was placed. That was over 8 months ago.
I have really been looking forward to the day that we could actually wash off all the hospital/vomit/stuff instead of just rubbing it around with a wet disposable cloth that smells like men's aftershave - and the day finally came. We didn't know how Averi would respond though, seeing as she hasn't even touched water for so long...
She had a BLAST!!! She LOVED it!!! It was so nice watching her enjoy herself while she splashed water all over the entire bathroom (and for once I didn't care).
We took a video of me putting her in the water for the very first time but forgot to take nudity into consideration :) so you'll have to settle for this very cute video of her splashing after warming up to the water for a couple of minutes.
Of course we like to keep things exciting in our house, so after about 10 minutes we saw brown mush floating up from behind Averi. Let's just say that adding water to poop that already has colace and milk of magnesia added to it twice a day is super yummy. After yanking her out of the tub, cleaning up the mess, and spraying the tub down with bleach, we put Averi back in the tub (with a little more water this time since she was having so much fun) and scrubbed her down. I'm not gunna lie, I washed her several times over. ;)
I have to admit, there isn't much that's cuter than a clean baby wrapped up in a towel - and she finally got to use her hooded towel that's been hanging in the bathroom for months now. I can't wait to give her another bath tomorrow! :)
I don't know if you know this, but being stuck at home all day everyday can wear on you after a while. I've had a couple of errands on my to do list for a while now and haven't been able to actually go do them because for some reason I can't leave Averi at home by herself. :) Since everything went so well last night, I decided to give it a try today. Yikes!
I'm not quite ready to take her on a full blown grocery shopping trip but I thought a few quick stops at a couple of stores would be fine. My first mistake was forgetting the baby wrap. With nowhere to put Averi (I was definitely NOT putting her in a grocery cart) I had to carry her the entire time. I also couldn't push a cart and hold Averi at the same time so Kaili had to walk, while I tried to keep track of her, and I had to carry a basket.
When my arm started to get tired from holding so much I asked Kaili if she could carry the basket for a little while. While she did put a valiant effort into it for about 30 seconds, it just wasn't going to happen. Just as I thought it couldn't get any worse - Averi fell asleep. So I had dead-weight sleeping baby in one arm, an awkward basket in the other, and no hand left to hold onto Kaili.
You should have seen me trying to pay for my 4 items at the checkout. :) I think I'll be complaining less about my 10:00 at night shopping trips from now on, and I don't think I'll be taking Averi shopping again any time soon!
Tonight was the annual cardiac celebration at the hospital. Once a year the children's hospital puts on a huge party for all of their cardiac patients. It is an awesome way to celebrate the second chance at life that many of them have been given through open heart surgery (like Averi) or any kind of heart care. It's also a wonderful opportunity to see the doctors who performed the surgeries and thank them by showing them the fruit of their labors.
We went for the first time last year and had a blast! When we got our invitation this year we only had one hesitation - taking Averi into a crowded room of germy people. Since her port is officially out and her ANC is over 1000, we decided that only 'normal' life is ahead us and we ventured out of the house.
I'm not gunna lie, I was a hot mess the entire night, but I still managed to have fun. We just held Averi the entire time and didn't let anyone touch her. Depending on whether she gets sick some time soon maybe we'll start going out a little more. ;)
We bought a new spoon and it is making a world of difference. The short handle and pointy end make Averi hold the spoon correctly. Now if we could only get her to stop flipping the spoon upside down when she gets it to her mouth. :)
We have also finally transitioned from the honey bear straw to a real big girl sippy cup with a straw. I have been looking for months now for a sippy cup with a straw, handles, and no valve (the thickened liquid can't get through the valve). So of course, Dan came home the other day with not one but 2 of these cups that he got for the price of one.
Averi has been really hesitant about using it because the straw is more squishy than the honey bear and she doesn't like the different feeling. I decided that she was going to overcome that today and did some tricky maneuvering I'd let her drink out of the honey bear for a while and then when she wasn't looking I'd sneak in the cup. She'd take a sip or two and then give up so I'd switch back to the honey bear. After doing this many many times, each time getting longer and longer, she finally finished her milk using the sippy cup.
I think I can officially say that we are done with the honey bear - and the weird looks it solicits. :)
Since a lot of things have been changing with Averi's eating skills lately, I decided to tinker with her feeding schedule as well. Pretty much for forever she has been getting feeds at 8, 12, 4, and 8. This is all fine and dandy when she gets everything through her G-tube, but she is becoming more aware of when we eat and she is eating more orally as well.
I decided to give her more of a toddler's schedule and decided to feed her 3 meals when we eat them and then a snack of milk after her nap and right before bed. We'll see how it turns out, but I'm hoping it will help encourage her if she eats when she sees us eating.
I really feel like she's making a turn for the better, eating wise, and I'm getting excited!
The End has finally arrived. Averi had her central line port taken out today!
We woke up early today for what should be her last trip to the OR for a very long time. It's funny, but we know one of the OR Nurse Practitioners by name and she always comes in to say hello and check up on Averi when she has a procedure done. She was SO glad to hear that we were finalizing the last step in being done with chemo.
I can't say that I'm going to miss this thing even a little bit. It has been more hassle than necessary and I am so glad to be rid of it and the worry of infection that goes with it.
Averi, on the other hand, is really going to miss having something to play with all the time. She is a 'taggie' kind of girl and loves that the dressing is always attached to her so it is easy to find and fiddle with. We've been joking about what she will do once it's gone.
Our wait ended up being a little longer than expected, so we enjoyed some cuddle time. Of course Averi was asleep by the time the nurse showed up to take her away.
Thankfully the procedure didn't take very long and the anesthesiologist was able to mask her instead of intubating (I always push for that now because she does SO much better with recovery when she hasn't had a tube shoved down her already wimpy airway).
The only big concern I had about today was the fact that they would have to start an IV and I remember all too well the time she came back from the OR with 14 holes. When I brought it up with the anesthesiologist he said they would try a few times and then possibly put one in her head. I told him I was totally fine with that and understood that even though they look horrid, they are easier to place and just as effective (and they wouldn't even have to shave a spot). Well guess what? After a few pokes they put it right on the side of her noggin. :)
I am so thankful to be done with the last 9 months of chemotherapy! Now everyone can congratulate us and I won't have to hesitate and point out that there is still something to take care of - because WE ARE DONE!
We went in for more blood work today and to make sure that everything is ready to go for having Averi's central line taken out soon. Her ANC is up to 1140. I love that her body is recovering so nicely!
I had the nurse thoroughly examine my 'back seat dressing' and she said that it actually looked really good. I told her I wouldn't be offended if they had to redo it but she insisted that it looked fine.
After leaving the clinic, we headed over to the floor to say hello to our 'family'. Averi enjoyed seeing everybody again, but especially her boyfriend Nurse Tim.
She just lights up when she sees him. I've threatened to tell his wife about the little love affair he's having with Averi, but he insists she already knows. :)
I've been avoiding this post because I don't quite know how to word it...here goes.
I finally got 'the phone call' today. It only took them an entire week to get back with us, but at least now we have the final results and we can be done with it (in reality I'm bummed we didn't hear the preliminary results last week but I'm trying to stay positive).
The oncologist said the biopsy looked fine. I felt a wave of relief wash over me...and then he kept talking. He said the pathologist made a note that one of the cells looked a bit off. They don't know what's making it look different and they aren't at all concerned about it. As far as chemo is concerned, she doesn't need any more treatments at this time. And then Mr. No-bedside-manner topped off the conversation by reminding me that there is always a chance that the cancer will one day return.
I hung up the phone and just sat there, confused about how I should feel. If there's nothing to be concerned about then why couldn't he have just said that everything looked fine and left it at that? Why remind an already over stressed mom that her daughter's cancer could return? I know that; I watched it happen to the little boy down the hall.
I'm thrilled that we're done with chemo but my overconfidence that everything was going to be super fantastic was just smashed. I suppose it's a time for celebration but now there will always be a small part of me that will always worry (and in truth it would have been there anyways).
Regardless of the small worries, we are done with this phase of our lives and ready to move on to getting Averi's port out and returning to 'normal' life!
I'm just guessing here, but I think a few people may be a little frustrated with the lack of posting lately (I use the term 'lately' loosely here). The truth is, I tried really hard to be up to date before we left for a very well deserved month long vacation, and it just didn't happen. Once we returned, the amount of stuff to write about was overwhelming and I found myself finding things to do to occupy my time so I wouldn't be able to post. I have since repented and am ready to update you on the amazing journey Averi continues to have. :) Thanx for sticking around (and for caring enough to be mad at me)!
I know, I know...I have avoided the blog for far too long. Don't worry, I have a super awesome excuse. We took a month long family vacation, away from hospitals, central lines, vomiting, pain, and upside down lives. It was amazing!!! (and now that we're home blog posts are sure to be coming soon :) )
So, here's the deal. While we were gone the Buddy Walk was looming closer and I was too busy enjoying the lack of responsibility (as much as I can have) too spend time asking for donations. So this is my call for support:
I'm not a big fan of asking people for money but the Down Syndrome Buddy Walk is one of the few things I believe in. Donating to the Buddy Walk helps support people just like Averi and the families that love and care for them. It supports the Down Syndrome Association of Central Ohio, which funds support groups like the one that we attend every month (that group is my second family), research, information for new parents who have just learned that their lives are following a new (and amazingly wonderful) path, and much more.
In order to get our team name (Can't Keep Me DOWN) printed on the back of our shirts we have to raise at least $1,500 by August 28th. Please, if you read this blog and Averi has touched your life in any way, help us reach our goal by donating.
If just 72 people (I think I have at least that many friends) will join our team for $21, we can reach our goal and each member will also receive a Buddy Walk shirt with "Can't Keep Me DOWN" printed on the back (you're not stylish unless you have one :) ). Plus, who can say no to this face?
I am so grateful for all of you who love, support, and pray for Averi. Each of you have helped our family in more ways than you can imagine. http://www.columbusbuddywalk.org/
*Make sure your contribution goes to Team Can't Keep Me DOWN*
Now that we have been home for a little while, we are starting to get a tiny bit adventurous and actually leave the house to enter the big bad world of germs.Today we went to play putt-putt as a family, figuring it was safe to take Averi outside and strapped in a stroller.
As I stuck my head in the car to unbuckle Averi I noticed that she was once again playing with the top of her central line dressing. She loves to comfort herself by fiddling with things and more times than not she pulls down the front of her shirt and picks at her conveniently placed dressing. Lately we have been wondering what she will do once the line is removed.
So...not only had she been fiddling with her dressing while we were driving, but she had pulled it off all the way down to the site. If she pulls it off a little we can always tape it back down until her next dressing change, but once the actual site is exposed and no longer sterile you are in trouble.
So I buckled her back in, drove back home, got a dressing change kit, and drove back to meet Dan and Kaili. Now I don't know if you're aware of this but the parking lot of a putt-putt facility is not on the top ten list of sterile locations. Given that knowledge, we pulled both car seats out of the back seat, closed the doors, and turned our back seat into a 'sterile' field.
Oh, and did I mention that this was my first dressing change to ever perform by myself? I'll admit that it didn't look half bad when I was done, but I will definitely have the nurses look it over the next time we go in to the clinic. If that's not an adventure, I don't know what is!
Sometimes Averi does things out of the blue that totally surprise me. I have a typical child, so I know all kids get to a point where things just start to click for them, but as you may or may not know, anything new that Averi does takes a ton more time and effort - and seems to mean more too.
Today she was chilling on the couch with me and decided to pull up onto her knees all by herself. Once she started getting a reaction and laughing about it, it turned into a game and she repeated it enough times to get on camera.
I love her little personality. She cracks me up, even when she's working her butt off to do it. I think we may have just stopped the world's turning for a brief moment when we found a way to make PT fun. :)
Keeping Averi in the infant carrier has been very convenient. Not only does she weigh in at 19 pounds making it easy to still carry her around but I love that during the few weeks we're home between cycles I can put her carrier in the stroller and completely cover her with both visors (keeping the germs at bay).
I've always said that we would convert her to forward facing when she turned 2, but it seemed silly since she didn't even get a car for several days after her birthday. Now that she's done with chemo, there are no more excuses.
I can't believe how old she looks. Kaili loves having her sister facing the same way so they can play together and Averi loves being able to see everything. I can tell riding in the car is going to be lot more fun now.
In case you're wondering, we still haven't gotten the results from Averi's biopsy and yes, it's a 3 day weekend. After not hearing anything on Thursday I called yesterday and left a message with the nurse hoping to at least hear the preliminary results even though we couldn't get the port out. I never heard anything back. By the time Tuesday rolls around and the clinic is open again we should have the final results. Oh well.
Averi's bone marrow biopsy and aspiration went very smoothly today. Thankfully it is a very short procedure and the anesthesiologist was able to just put a mask on her instead of having to intubate. That makes the recovery so much easier and faster since her throat is so flimsy to begin with and irritating it makes it really hard for her to breathe. By the time she was brought back from recovery she was sitting up and acting like nothing had happened.
Now for the waiting. The final results take a whole week to come back but the preliminary results take 2 days and if they look clean then we can go ahead and schedule a time for her central line to be taken out. That means that if everything runs smoothly she could get her line out on Friday. I know it's a long shot but it would be really nice to enjoy fourth of July weekend with a lot less worries.
The doctor called on Friday to let us know that Averi's bone marrow biopsy is scheduled for tomorrow. The only stipulation is that we need to have her blood work done today to make sure her hemoglobin is over 10. If not, then she needs to have a transfusion of red blood cells tonight before going to the OR in the morning.
(Enjoying some much needed sunshine! She's pretty excited...)
After Friday's call I immediately called our home health nurse and asked her to come over in the morning to draw Averi's blood so that there would be enough time to have it processed and get a transfusion if needed. She said she'd be here at 8:00.
By 10:00 I called to find out where she was and she said she never got the orders that I had faxed over...riiight. Then she had to go see another patient. Long story short, she showed up at 1:00 and left by 1:30 to drive 30 minutes to the lab that would then process it and send the results to our doctor who would then call us. I guess she thought that left plenty of time for us to get a 2-3 hour transfusion if need be.
I've been left a little frustrated. The good news is that Averi's hemoglobin came back at 10.2 so there was no need for a transfusion and we are good to go for tomorrow. Why does everything have to be so dramatic?
Her ANC was 954, which means her marrow is continuing to improve and recover. Hopefully everything goes well tomorrow and there are no more blasts. For some reason I was super nervous about her last biopsy but since that one came back clear of any leukemic cells I don't really have any doubts about this one. After two more rounds of chemo it can't have gotten any worse.
Today was the big day, the first day with no antibiotics.I was a hot mess!
Let me give you a refresher on what happened the last time we finished giving IV antibiotics at home.The last dose was given on Thursday or Friday.On Saturday afternoon we flushed her lines with saline and heparin to keep them from clotting.Within an hour she was mottled, cold, had a fever, and projectile vomiting.
I did not want a repeat!We decided to flush her line in the morning so that we could keep a close eye on her for a while before putting her in bed.After a few hours I started feeling a little better, until I remembered that when she got poop in her caps the first time she didn’t show symptoms of being sick until a few days later.Needless to say, I watched her like a hawk.
She was fine all day until right before bed.Dan told me that she felt a little warm as he was laying her down and he decided to take her temperature.It was 99.8.Not quite a fever but not normal either.Then he told me that he almost didn’t say anything because he didn’t want to worry me (good thing he rethought that one).
Now I can’t sleep and I have been checking her temperature every 30 minutes.It has gone down a little and she is acting fine so I think I might try to get some sleep.We’ll see how it goes…
Now that Averi is feeling a little better and we are keeping her drugged up on zofran, she is eating orally. This is a big deal since she has been nauseous for so long and was on IV fluids up until the day she was discharged.
I decided to give her a spoon and a bowl today to see what she would do. I was VERY impressed!
She refused to hold the spoon any other way but at least the food was making it to her mouth. Maybe this whole self feeding thing is going to be easier than I thought.
Today was our first visit back to the Clinic since coming home. I was actually pretty glad because I had some concerns to voice to the doctor and I was curious how her blood work was doing. Thankfully her ANC was in the 800's, so it is on it's way to recovery.
(Watching PBS while waiting on blood work. Kaili was making sure Averi didn't fall off the chair.)
This morning was Averi's last dose of Flagyl, the antibiotic to treat her C. diff. However, her IV antibiotics go until Saturday. Remember how I told you that she got the C. diff in the first place because she was on antibiotics? I told the doctor that it made no sense to me to stop treating the C. diff when she was still on other antibiotics that could just encourage her to get it again (once you have C. diff, your chances of getting it again go way up). Thankfully she had no problem extending the Flagyl until the day after the IVs are done.
My other concern is the fact that one of the bacterias growing in Averi's blood is the exact same one that set up shop in her broviac line after doing IV antibiotics at home and ultimately led to her PICU stay. The next steps for Averi are having a bone marrow biopsy and (if it's clear) getting her broviac out, hopefully sometime soon. So I asked if we could extend her antibiotics until she had her broviac out so that there wouldn't be any chance of infection in the line. She said no.
While she does understand my concerns, she said that we wouldn't do that if Averi was going to get another round of chemo and we just have to trust that the antibiotics are doing their job. That didn't do much to make me feel better. She did buffer my fears a little by scheduling more blood cultures to be taken when we come back next week, but the truth is that if Averi's going to get sick it's going to happen before we come back.
She's going to schedule the biopsy as soon as possible since Averi's ANC is closing in on 1,000 and then we can get the port out and be done with the sepsis worrying forever.
I’m starting to wonder if coming home was such a great idea (which is only said in jest because being home is always the best option!).Averi has quite the medication regimen and we are missing the night nurses who used to noisily come in the room and give the meds for us. :)
Yesterday when we got home, the home nurse came and oriented us on giving Averi her IV antibiotics.She was late, there were lots of silly papers to sign, and we already knew how to do it so it was a fun visit.
After she left I had to sit down and write out a med schedule so that we knew when all the ‘every 6 hours’ and ‘every 8 hours’ medicines were due.That’s when I realized that Dan and I were going to have to take turns getting up all through the night in order to stay on track.One of stayed up till 1:00 while the other one got up at 3:00.Judging by how tired I am today, it’s going to be a long next few days.
Luckily the IV antibiotics don’t take quite as long to administer as the ones did back in October.This is because one of them is in a vacuum bottle that slowly administers itself.It is the coolest thing ever!
(You hook up the one on the left and the balloon slowly deflates over 30 minutes until it looks like the one on the right.)
Don’t worry, we only have to do this for another week.After that there will be plenty of time for catching up on lost sleep.
Averi woke up with an ANC of 264 and negative blood cultures, and that meant we got to go HOME!!! I can't believe the day has finally arrived. Every day for almost the last month I have looked at this sign on our door and known that one day it would actually be meaningful.
Today was the day we got to take that sign down, pack it up, and go home hopefully never to return.
There is a special tradition on the Hem/Onc floor that patients get to ring a bell announcing their final departure. Dan took off work so that we could all be there as a family to declare our happy news. It was a group effort to ring the bell, but then again so was the journey.
Ringing the bell was much more emotional for me than I thought it would be. Living at the hospital has become our life and I teared up in sorrow for the friendships we are leaving behind just as much as I did for the joy of putting this all behind us.
So many people at the hospital have touched our lives during this journey and they all came to celebrate with us as the bell sang out our victory. To say it was joyous doesn't even come close.
After ringing the bell, Averi took a short nap while I took out our cart load for the last time. Then the moment finally came where I picked her up in my arms and carried her off the floor and out of the hospital like it was no big deal. As we walked through the halls, the only visible signs of our time spent there were the mask on her face and her shiny bald head.
We are SO excited about being a family again. There are still several steps left to take before this part of our lives is truly over, but at least we are one step closer to the finish line.
I decided a few months ago that I was no longer going to be upset that Averi isn't crawling because it makes living in the hospital a little bit easier. She stays on the play mat and doesn't try to wander off onto the dirty floor. So of course she would pick today, her final day in the hospital, to decide to learn how to crawl.
It may not be pretty to the untrained eye but to me it is absolutely beautiful! She is getting on and off of her tummy correctly, alternating her arms and legs, and getting from point A to point B without crying.
This truly marks the beginning of a new and more exciting chapter in our lives. The best part is that every single one of her therapists came at the same time to say goodbye today and they were all able to witness her success. It was very rewarding. Little Averi has come such a long way and we are so proud of her!
We finally found the answer to Averi's puking woes - Flagyl. The oral antibiotic that she's on to treat the C. diff can apparently cause nausea. So why is it that no one has told us this until now?
The nurse today said that she had C. diff once and the flagyl made her extremely sick. She didn't want to eat anything and really couldn't because everything (and then some) came right back up. This explains a lot, like maybe why Averi puked another 2 times today and doesn't seem to be doing any better even with antibiotics on board. Now we can stop worrying about what's causing her to be sick and stop trying to feed her so much until she's done with the Flagyl (which isn't any time soon).
The nurses have been very helpful today. The night nurse came in with an even better solution for keeping Averi's central line caps clean. She used a velcro-like sticker that is normally used to hold catheter lines on your leg. It's wonderful! Why someone didn't come up with this idea like say 8 months ago is beyond me.
Averi's just excited that she has one more thing stuck to her that she can pick at.
Her anc dropped a little, down to 230, but it is still above the 200 mark. This means that if her cultures come back negative tomorrow and her counts don't drop at all...she'll be able to go home tomorrow. I'm trying really hard not to get my hopes up and jinx it.
It wasn't a contaminate. Monday's cultures came back growing E.coli and another gram negative bacteria. Hmmm, I wonder how E. coli could have found it's way into Averi's blood. Oh, maybe it was from when she got C. diff poo all over her central line caps. I dunno.
I tried giving Averi a half volume tube feed this morning, since she was doing better eating last night, but it just all came back up. I can't figure out what's causing it. It's too late to be from the chemo or the 24 hour stomach bug we all had and the C.diff should pretty much be under control. Who knows?
Surprisingly Averi's ANC is up to 312 and even though she is nowhere near feeling great the doctors said she can go home when her blood cultures start coming back negative (showing that the antibiotics are working). This is great news since we are coming up on our three and a half week mark and I am pretty much done with all this drama.
Averi's ANC only stayed at 0 for one day and is on it's way back up at a whopping 144 today. While I'm glad that she's making a recovery I can only wonder how long they will keep her here since she has so many other things going on.
Fortunately the antibiotics are starting to kick in and by this evening her appetite was slowly coming back. She even ate some baby food and freeze dried fruit pieces.
As it turns out, her blood cultures came back positive for gram negative rods. Of course they did. It's not like she has enough going on right now. So they added yet another antibiotic to her regimen, making it a total of 4. I really hope this is just a contaminant that was on the edge of her line after she pooped on it and it didn't really get into her blood.
I had a sad realization today. I found out that if her ANC gets high enough Averi can be discharged while she is being treated for C. diff (which is a total of 10 days). While this could be sooner than later depending on what her blood cultures say, it also means that she won't be allowed out of her room anymore while we are here.
This is her last treatment and she can't even roam the halls having her last hoorah and saying her goodbyes. This is not how it's supposed to end. It's supposed to be more glorious and happy and carefree.
The good news is that Averi's ANC finally reached 0 today!!! This is the last time she ever has to go that low. Now all she can do is go back up.
The bad news is that she is refusing to eat anything and has a fever of 103. This means drawing more blood cultures and starting her on more antibiotics. This seems silly to me given the fact that she has C. diff because of being on antibiotics but the doctors assure me that it will not affect the C. diff treatment. Hopefully the fever is just from the C. diff and not another infection.
Averi seemed to be doing a little better today so Dan fed her some baby food. By the time he left at the end of the day and I tried to feed her she puked all over.
Of course she had just gotten her oral medication to treat the C.diff so the nurse had to give it to her again. I don't quite understand why they are giving her an oral med when they know she's nauseous and she has a central line. I've been told that the oral works better since it is actually going through her GI tract instead of just into her blood, but if it's not staying in her system long enough to go through then what's the point?
On top of that, the C. diff isn't just a stinky, watery poo. It's causing severe abdominal cramping, fever, and loss of appetite. Trust me when I say it makes for one very unhappy baby.
Then, while hanging out as a family tonight, I watched in slow motion as Averi fell over backwards out of the recliner (while snuggling with big sister) and hit her head on the bottom of the IV pole. She cried for a while and has a dent on the back of her head that is sure to be an awesome bruise tomorrow.
By the time I put her to bed she was acting completely normal but the doctors insist that she have a neurological exam every 4 hours. This consists of waking my sick, pathetic baby to shine a light in her eyes - every 4 hours all night long. Who knows when she'll ever be allowed a good night's sleep.
I often wish that Averi could talk, sometimes it's because she's 2 years old and hasn't even said her first word yet, but mostly I wish that she could tell me what hurts and how she's feeling during all this chemo crap.
The puking has not subsided. In fact it has spread from Kaili to Dan and to me. Fortunately I set up for a constant to sit with Averi yesterday so I could stay home with Kaili because I woke up running for the toilet and immediately left. Averi puked after PT and laid around for most of the day.
It has continued through today and we've had to stop her feeds altogether again. Just when I thought we were going to get rid of her IV fluids we are back to square one. I wish she could tell me if she is feeling chemo nauseous or stomach bug sick. I wish she could tell me if her stomach hurts from intestinal cramping or just a lack of appetite.
As she has continued to pour fluids out of both ends, Dan came up with a better solution than my mega diaper:
He wrapped her caps in plastic bags and taped them shut. This works quite well, except when the poor nurse has to access the lines to draw blood or give meds. :)
Just as today was drawing to a close, the nurse came in to inform us that the C. diff tests came back positive. Super! Now she has been put on an oral antibiotic. The ironic thing is that Averi most likely got C. diff because the broad spectrum antibiotics she was on to treat her previous line infection also killed off the healthy bacteria in her GI tract, allowing the C. diff to take over. One thing just seems to lead to the next.
This morning the doctors decided to order a sample of Averi's poop to be tested for C. difficile, a bacteria that lives in the intestines and can cause stinky diarrhea. It is a nasty bug that is highly contagious so until the test results come back Averi has been put on restrictions that she cannot leave the room and everyone who comes in must wear a gown and gloves.
I kindly informed them that since they now wanted her to poop she wasn't going to. And I was right...for a little while.
Ever since she started throwing up last week we have slowly been increasing Averi's feeds. She has been tolerating them quite nicely and today was her first time back on full volume feeds. She did wonderfully all morning.
After putting her down for a nap I went to get lunch and returned to find her sitting up in her bed. Annoyed that she was awake after such a late night last night, I walked closer to find that she was covered in vomit and diarrhea. I instantly changed from annoyed to panicked.
The good news is that we were able to get her stool sample. The bad news is that we have to cut back on her feeds again.
As the day progressed, Averi continued to get more irritable and fussy. She would be perfectly fine and then start crying out in agony, unable to be consoled. The doctor came in to look at her and said that irritable bowels can contract at uncoordinated times causing sudden spurts of cramping. She ordered some IBS medication for Averi and surprisingly some Tylenol.
Then to top it off, right after the doctor left Kaili threw up all over the floor in the bathroom. Yes, there was germy puke all over my immunodeficient daughter's room with no way to open windows or doors to air it out. I have literally cleaned up smelly bodily fluids all day long! (and you guys ask why I don't want to be a nurse when this is all said and done) Dan wasn't feeling well either so I sent them all home and put Averi to bed as soon as the Tylenol kicked in.
Apparently we can't quite find the right balance of Colace and Milk of Magnesia to give Averi. The poor thing is either screaming to get rabbit pellets out or finger painting. Tonight it was the latter, again. It's kind of like deja vu from when Dan was here last weekend.
Right after everyone left to go home Averi had a massive explosion. I changed her clothes and the bed and wiped down her tubes. Just as I was finishing up and getting ready to put her to sleep it happened again. To save you all the gory details, let's just say that she went through 4 outfits in less than 2 hours.
It was everywhere! Of course it wasn't exciting enough to just get poop on some things, oh no, she had to get it under her central line caps again. This time the nurse had the pleasure of changing her poopie caps and then drawing more cultures to make sure that nothing got into her blood stream.
By the time we were done with all that Averi was exhausted and past ready for bed. Worried that she would explode again during the night I came up with an awesome solution:
It consists of one size 3 diaper covered by one size 6 diaper wrapped in two washcloths. Oh, and did I mention that the only pajamas left for her to wear are the ones that don't have snaps down the legs? It's gunna be a lot of fun getting into that hot mess tonight for diaper changes.
Averi gets several therapies several times a week. Most of them require work and may not be deemed as 'fun.' Therapeutic Recreation is the exception. I'm still not completely sure why it's considered a therapy but it's a lot of fun and Averi usually enjoys it, especially with the person on our floor, Mary.
The last time Mary did something messy with us it involved finger paints and Averi wasn't too thrilled about having the slimy goo on her hands. We gave her a paint brush and the problem was solved. I think between me being such a neat person and Averi not being able to take baths or touch anything that might get on her dressing/caps, she's not too fond of messes.
Today we tried something less slimy - shaving cream. We didn't know how Averi would respond so we started out slow...
She LOVED it!
By the end she was covered in it.
The best part was that it just washed right off with a wet washcloth. We will definitely be doing this again.
Last cycle, Averi only needed one transfusion each of platelets and red blood cells. Well today she doubled that.
Last night I mentioned to Dan that she was looking pale and that she might need some red blood soon. When we got up this morning I was informed that her hemoglobin was low and she would be receiving some red blood. Is it sad that I can read the signs of needing a blood transfusion?
I was actually kind of glad that she needed some more blood because great grandma has donated blood twice for Averi and last time she didn't end up using it and this time the blood hadn't been processed when Averi needed it last week. After all that trouble I was grateful that Averi finally got to use great grandma's precious gift (and so was Averi)!
This afternoon great grandma and grandpa offered to hang out with Averi while I took Kaili out for some fun. Unfortunately, they had to experience Averi's worst dressing change EVER.
I don't know if I've ever explained it, but there is a sterile dressing that covers the area where Averi's central line enters her chest. It has to remain sterile to prevent any infections from entering her blood stream and is changed at least every 7 days. Changing it requires everyone wearing masks, gowns, and gloves. The old dressing is removed, the site is thoroughly cleaned and allowed to dry, the area is covered with a skin protector that also has to dry, the line is taped down in a loop to prevent it from being pulled out if there is any tension on the line, and finally a new sterile dressing is placed over the site.
All of this has to be done without anything touching the site or contaminating it. Try doing that to a 2 year old and you will understand why it is a two person job and why we have to pin Averi down to the crib to prevent her from pulling off her mask or touching her chest. Fortunately, it usually only takes about 5 minutes.
Today's particular dressing change did't go quite as smoothly as it normally does. Just as the nurse was getting ready to put the new dressing on, Averi, who was already not cooperating as much as usual because she didn't feel well, pulled her arm loose and brushed it across her chest. She then had to be held down while the nurse went and got a new dressing change kit and redid the entire process.
Averi screamed the entire time (I don't know if it was more traumatic for Averi or my poor grandparents). When I got back this afternoon I noticed that Averi had petechiae (red dots of broken blood vessels) all over her face and head. We finally decided it was from the intense amount of screaming and straining she did during the dressing change.
Petechiae are due to low platelet counts but because that was the symptom that led us to having her blood checked and ultimately finding out that she had cancer it just sends up a red flag for me. I had the doctor come in and requested that she have some more platelets. He said that even though she just had some yesterday she was getting low again (obviously) and they were going to wait until tomorrow to give her some more but that they could do it tonight if I wanted. I made sure she got the platelets tonight.
Averi started puking last night and it has continued throughout the day. The ironic thing is that we finally know how to best help her when she's nauseous and this is the last time it will matter.
Treating her went surprisingly well today. I told the nurse I was going to stop all feeds (especially tube feeds since it is incredibly mean to pump someone's stomach full of food when they are sick) and that we needed to start some IV fluids. She was doubtful but asked the doctor anyways. Apparently the resident asked her if that's what the parents wanted, and if so then she should do it. I had to laugh when I heard that. I guess we have finally earned some degree of respect around here.
(A few days ago, during happier times.)
We also had them start her on the zofran and phenergan. And guess what - she's over 2 now so they finally gave her her the okay to use IV phenergan. You know, the one that actually does something because it doesn't immediately get puked back up. It has been working like a charm and she has been sleeping really well.
She did need platelets today, which is just another sign that her body is responding to the chemo. Hopefully the yucks don't last too long so that we can go back outside again soon.
I feel like we are sitting in the calm before the storm. Usually Averi is nauseous by now and the up-all-nights have started. She has been great all week. Other than finishing her antibiotics today, nothing much really happened. I'm not complaining, but the anticipation is killing me.
(My two favorite baldies! Great grandma and grandpa have been here helping us out.)
I spoke to Averi's PT this week and let her know that I'd rather not just skip crawling altogether. She has been working on standing and pulling-to-stand, since it is more age appropriate, but I really feel that there are certain connections that happen in your brain when you learn to alternate your arms and legs when crawling. She said she had no problem with that and had OT come in with her today so that they could work on crawling.
It went surprisingly well. She is still doing more of an inchworm motion, but she was getting from one side of the play mat to the other repeatedly...without complaint. The fact that she wasn't crying the whole time was the true miracle. If she's tolerating it then we are definitely moving in the right direction.
Averi's morning play times are becoming something of a habit. Luckily, there hasn't been any more poop involved since we decided to keep her in onesies, but it's still really early. Yesterday I decided that something needed to be done about our east facing window with broken blinds - so I taped a blanket over the window. Of course I was retaping it at 4:00 this morning, but it seemed to help. :)
Now that Averi isn't attached to any chemo and she doesn't have a fever and she's not feeling nauseous, we decided to be adventurous today. We went outside!
There is a playground on the roof of the third floor that patients are allowed to use (if they meet the above criteria) and for the first time since starting chemo in October, Averi was able to use it. Of course it was too cold to use during the winter, and the few times the playground wasn't covered in snow there was some other reason Averi couldn't go.
She loved it! We took a blanket to sit on and toys to play with (since everything out there was way too germy) and just soaked up the sun. We only lasted 15 minutes before her pale and fragile skin started to turn red, but the fresh air was SO worth it!
Today was momentous - the nurse took down Averi's last bag of chemo! Of course we still have to stick around until her counts do their thing, but there will be no more pumping poison into my baby's heart.
(Yes, we did take a picture of the bag coming down, special blue gloves and all.)
Averi seems to be doing well so far. She did need a blood transfusion yesterday, which always makes her happier and more energetic. Unfortunately, my grandma donated blood last week and it hasn't gotten to the hospital yet so Averi had to get someone else's blood. Either way, it means that her body is doing what it's supposed to after receiving chemo and we are on the right track.
This past weekend began pretty mundane, which in this family we relish. I packed my bags and began my weekend shift taking care of Averi at Nationwide Children’s – giving Tiffany some relief from being in the hospital 24/5. Due to it being Memorial Day weekend, I was looking forward to spending an extra day with my little angel.
Friday night rolled by relatively quietly without any issues. What a relief. This was going to be a nice relaxing weekend. I would get to spend some quality time with Averi and unwind from the day-to-day stresses of work. She was feeling much better due to the antibiotics and her temperature had dissipated so we could leave the room and go on walks or go to the kids’ room and play with the toys.
My relaxing weekend with Averi was shattered Saturday night. A rash showed up on her lower torso. Averi wasn’t too bothered by it at first, but by nightfall she was tugging at her hospital gown trying to scratch. The rash had spread up her stomach and back, all the way under her central line dressing on her chest. The physicians became concerned and order some Benadryl to help with the itching. This helped calm Averi down a bit so she could at least sleep through the night.
Sunday returned to relative normalcy. Though Averi was still a little agitated by the rash, it had diminished enough where we could play on the floor mat and the distractions would make her forget about the itchiness. We were having a good time playing when I stepped out to use the restroom. When I returned I saw a naked bum sticking out from under the hospital gown. Upon further investigation I found that Averi had scooted out of her diaper. Luckily, there wasn’t a mess to clean up.
What a cute little bum!
This morning I heard Averi start making noises just before 7am. I was not ready to get up and start my day off from work just yet so I tried to ignore her babbling and blowing raspberries. I dug my face into my pillow to block out the light. I went unconscious for what seemed like another hour or so, but when I looked at the clock it was only 15 minutes. Averi could now see me stirring and began to make her loud calls for attention. It was hopeless going back to sleep now.
I rolled out of bed and made my way over to Averi’s crib. I stopped in horror – no shock. Averi looked up at me with the biggest grin seemingly saying, “Good morning to you dad!” She was sitting in her bed completely naked playing in brown goo. She had wiggled her way out of her hospital gown and stripped off her diaper. Afterwards – and I say afterwards because her diaper was still clean – she decided to poop all over the bed and spread the good cheer. Averi had used the brown spread and was redecorating her bland, all-white crib.
Poop was all over the bars, the sheets, her hands, her central line caps, her head…. you get the picture. To top it all off, Averi had completely removed her central line dressing thus leaving the site exposed. This is a HUGE no-no, especially with an inordinate amount of bacteria-laced feces in the vicinity. Needless to say, my Memorial Day ended up being more of a Labor Day as I spent the rest of the morning cleaning EVERYTHING, especially Averi.
After all was said and done, my rational mind told me I should have taken a picture before cleaning everything up, but the worried father in me just wanted to get his daughter who has a compromised immune system cleaned up as soon as possible to avoid any infections or contamination. I hope I wasn’t too late. They took some cultures and we’ll have to watch her closely to make sure she didn’t contract any infections.
Needless to say, Averi is no longer allowed to sleep in just her hospital gown. We now keep her in a onesie as much as possible to avoid any similar situations. What a day to remember!! ~ Dan
We've met many wonderful and amazing people while living on J5 (the Hematology/Oncology floor) but some of them touch you more than others. One family we've grown close to has a 1 yr old son with leukemia.
Our journeys have been very similar. Just like Averi, R has to stay after each chemo treatment until his counts recover, so they are stuck here for weeks at a time. His mom stays with him overnight like I do with Averi, they have another son who is 10, and his parents always have smiles on their faces.
His mom and I often visit in the halls during nap time and exchange our frustrations and changes in life. R and Averi often had 'dates' in the hall that involved waving at eachother from a distance and not touching anything. :)
Last time we were in the hospital, R finished his last chemo and had his central line taken out. I was sad to see our friends go, and a little jealous since they had started chemo after us, but mostly excited that they were finally done.
Yesterday, R was admitted back on the floor. In just over a month his leukemia has come back. The options they were given for treating him this time were even more brutal and have extremely low chances of success. He was moved to the hospice room at the end of the hall today.
My heart is breaking in so many ways. It's just too close to home. I can't even imagine what his parents are going through - and yet all I can do is realize that that could be us in just a month or two. His biopsies were clean just a month ago and now he's living in the hospice room. His parents only had 7 short months with their healthy baby boy.
I have no idea what to do for them, because really there's nothing I can do, and I'm a mess. I feel so helpless. I hate cancer and I hate the void that it is going to leave in R's family. I want them to know that they will be able to see their son again. That, yes this sucks, but families are forever. I want them to realize how blessed they are to have R and experience the joy he gives them, even when it comes with trials. I want them to be happy.
Why do I always speak too soon? Last night as I was laying Averi down in her bed for the night, I thought her head felt a bit warm. The nurse had just taken her temperature with a tempadot (disposable thermometer) and it was normal. I decided to pull out our speedy digital thermometer and take an oral temperature. Sure enough, she had a fever.
Fevers for an oncology patient are totally different. As always, it meant drawing more blood cultures, starting IV antibiotics, and constantly checking vitals. As the night progressed, her blood pressure dropped low enough that they had to give her a large saline bolus in hopes of adding some volume to her blood. That only lasted a little while before she dropped and needed another bolus.
By this morning, the nurse practitioner came in and told me that if she needed another bolus, Averi was going to be transported to the PICU. The nurse continued to do vitals every 30 minutes for the entire day. Poor Averi is such a trooper and put up with it even though she felt horrible.
When the doctors came to do rounds, they informed me that the cultures taken on Tuesday had grown gram negative cells and they added a third antibiotic. We all know what that means - the nerve raking cap change I did at home didn't help. The poop got into her blood anyways and now she's sick. Ahhhhh!
Thankfully her blood pressures have stayed level today and she hasn't had to go down to the PICU. Hopefully the antibiotics start to kick in soon and she feels better tomorrow
It finally happened! Today they hung the first bag for Averi's last round of chemotherapy!!!
I'm finally starting to let myself get excited. I know we still have to be at the hospital for another month or so, but this is the last time. It's the last time I have to haul my cart load of stuff into the room and unpack. It's the last time we have to sit and wait patiently for Averi's blood counts to hover, drop, hover, drop, bottom out, and finally come back up. It's the last time our family has to be separated so much. It's the last time Averi has to be nauseous and puke simply because her body is being pumped full of poison. This is the last time!!!
Today was the fastest we have ever gotten out of day hospital and into a room. The doctor liked her blood counts from yesterday so the nurse didn't have to redraw them today and then wait for results. The floor is also really full and they were trying to put someone else in our room so the nurse went ahead and moved us in before the chemo was even started. It was really nice.
My only complaint (coming from my "this is the last time and has to be perfect" thought) is that we are in the corner room, so we have to share an anteroom with the room next door. It just makes me nervous because it's easier for other people's germs to get into Averi's room - especially when our neighbor has a sign on his door requiring everyone to wear gowns, masks, and gloves to enter.
After telling the doctors about Averi's little mishap with the poop getting under her central line caps, they decided to draw blood cultures just in case. That way if Averi starts to get a fever, we already have something growing instead of having to wait 48 hours for the cultures to grow. At least they didn't start her on antibiotics (normal protocol when they draw cultures) since it happened a few days ago and she isn't showing any signs of being sick.
I may or may not be 5 weeks behind on posting. =P In my defense, this last cycle has been a bit busy, in true Averi fashion. It hasn't been all bad, but it certainly didn't go as smoothly as my naive brain wanted. So, sit back and enjoy the ride (hopefully in fast forward) ...
Averi's counts have finally reached a suitable level to start the last cycle of chemo - 2747 to be exact. As always, it took a little longer than we had hoped, but that's how Averi likes it.
She is scheduled to start the last round tomorrow, but to be honest I'm not letting myself get excited until that last bag of chemo has been hung and started. Luckily, her counts are high enough that the chance of them dropping down below 1000 in one day is really slim. We are so close, hopefully everything goes well tomorrow and this will all be over soon!
When my dad went to pick Averi up this morning and announced that, "we might have a problem," I came sprinting. You never know what that means with Averi, but this time it meant POOP. Luckily she had scooted herself into the kitchen because 'the problem' was in piles all over the floor.
It took 2 people to strip her down and keep her hands out of the mess. I might have said this before, but it is really hard to thoroughly clean a person without being able to put them in water. As I wiped her down over and over again with wipes, I realized that 'the problem' had just gotten scary. Her central line ports were covered in poop as well.
I was able to clean one of them off but the poop had gotten pushed way under the cap on the other line and I couldn't get it out. The only solution was to change the caps on the lines and clean underneath them. I have seen this done many many times (every three days when inpatient) but actually doing it myself was totally different.
I got out all my sterile supplies, put on my sterile gloves, and got to work while my mom handed me many many alcohol wipes. Normally no one cleans the end of the port when the cap is off because the risk of wiping something into the port is too high, but I didn't have that option, this port needed to be cleaned...and fast.
It took what seemed like forever and I was dripping sweat by the end of it, but I got those ports cleaned and those caps changed. Thankfully, Averi is used to all these medical shenanigans by now and does an awesome job holding still.
Now, the only thing left to do is wait and make sure she doesn't get sick...no pressure.
I have been trying really hard to still get some PT and OT in while we are at home. I discovered that an upside down plastic shoe box makes a great bench for Averi to sit on and the couch with no cushions makes a great place to work on kneeling.
Averi has been tolerating her orthodics really well (I was a little worried since she's never really had shoes on her tiny feet before) and is even standing on her own for 10-15 seconds when propped up against the coffee table. I know that sounds like a really silly accomplishment to a typical parent but it is amazing compared to before when she wouldn't even bear weight on her feet at all. She is moving in the right direction and we are so proud.
P.S. Dan took a video of her standing but she is very grumpy while doing it and it looks more like child torture so I will wait until another time. :)
After visiting the clinic on Monday, Averi's ANC was 774. Since it was on it's way up again, they scheduled us to go back today. Of course my hopes were smashed by a measly 874. I really thought she'd be admitted again by the end of the week since tomorrow will be 2 weeks that she has been home. She will get there eventually, just on her own schedule as always.
After dropping down to zero on her birthday, Averi's ANC doubled from 44 to 91 to 182. On top of that, she hasn't needed oxygen for the last two nights. Yesterday the doctors decided that if her counts continued to go up today and she didn't need oxygen, she could go home.
I woke up excited this morning since she hadn't needed any oxygen and went to find the nurse so she could tell me Averi's ANC. I had great plans of packing and being ready to go when the doctors made their rounds so we could be out before nap time. Of course it had gone down to 169.
By the time they made to our room at 11:30, I had already admitted defeat and was still in my pj's. Out of the blue they announced that Averi's counts have been trending upwards and they trusted us to bring Averi in if any problems should arise. Seriously, we can go home?
It was a total surprise and the perfect Mother's Day gift! I started packing in a hurry and then sat and waited for the discharge papers (the doctors couldn't be too nice and let us get out at a decent time). As always, Averi fell asleep 10 minutes before we were allowed to leave. Another nap time lost but another weekend as a family gained.
Just in case you were wondering, here is what moving out of the hospital looks like after 3 1/2 weeks.
And yes, moving in looks exactly the same. Babies come with baggage you know. (P.S. I will continue to call her my baby - regardless of the fact that she is now 2 - until she is walking and defined as a toddler by default.)