Number 15- The Aftermath

*Play song, "Keep Breathing" with this post- not the song I wanted, but the song that I deemed worthy to this week they did not have. If you're wondering what song that is, it's "Battle Cry" by Kyler England

I have come to realize that life just isn't right for the Peters unless there's drama.... itty-gritty, dirty drama. I just wish it didn't affect the littlest of us so often. 

My daughter is amazing. 

Again and again and again I watch her come on top of these things that would literally cause me to crawl in a hole and never come back. How did I get so blessed to be her mother, let alone just witness these miracles time and time again? 

Nothing is ever routine for her, nothing is ever ordinary.... yet, she is extraordinary. I just wish sometimes that I could do it for her, yet I know she takes it on much better than I could ever dream to if it were me. I just wish I could try.... even if it killed me, I would do it.

This wasn't the surgery... no that went perfectly and she is healing nicely. She went off narcotics while we were still in the hospital, around 5 days after her surgery. Don't think I could do that after a hip surgery! The drama of this week comes in something we've had to deal with on and on... and on again and still with no answers as to why. 

But I'll start off where I left on the last post, and like I said that first night went pretty well. The only thing was that Emarie woke frequently, not necessarily due to pain, but really I don't know.... if the girl ever felt pain from the surgery, she didn't show it. No, mostly she woke because she couldn't get comfortable. You see, when there's a very large foam block strapped between your legs, I can only imagine it makes it hard to move around. 

This was taken at 4:25 am, thank goodness for that iPhone! 

That morning (Thursday), daddy had to go to work, so Em and I both got what little more sleep we could and later that afternoon the physical therapist came in with a wheelchair and instructions for how often Emarie needed to sit up a day.

This is pretty much how it went that day.... don't get me wrong, she didn't complain and no, she's not asleep here. What she did was make a tent with her blanket and sort of put her head underneath to watch a movie on my iPod. I just think it was rather tiring for her, and unfortunately when we put her back in the bed, we'd discovered that she'd been bleeding from one of her incisions :( This was only about 20 minutes.

Next day (Friday) went much better and she stayed in the chair for over an hour!

Later that day the therapist brought in the chair that we would be taking home for about a month.

This is a picture I captured of Em taking a nap that day

She is sleeping with her eyes open.... she does this every once and awhile and it really creeps me out.... even though I love her to pieces!! 

Steve and I both spend the night at the hospital when Emarie is here. Due to all the things that have gone "wrong" in times past, there just is no way we could sleep comfortably an hour away just in case. But, if I had a dollar for every time someone was  concerned (for lack of a better word) about the fact that we were both spending the night.... well, I'd have a lot of dollars ;) Just to give you a clue, here's a conversation I had with the tech the very first night:

Tech: As he's looking at me with the most confused look! "You... you're both sleeping.... h-here?"

Me: "Yes we are"

Tech: "You know.... you know....y-you can only have one.... uh, bed... uh I mean sleeper, r-right?"

Me: "Yes we know that.... it's not our first time" ;)

Tech: "They.... they only fit one person-n"

Me: "Wanna bet??.... No, just kidding, settle down! We know how to do this, we take turns, one sleeps on the, uh, "bed" while the other takes the chair... until it's just too hard to bear it any longer... and then we switch! See everyone's happy!"

Tech: "Well.... I d-don't really know what to... to... do" and then after a very long and puzzled pause... "How many.... like how many blankets and uh... pillows should I bring?"

Me: "I promise this isn't that hard, there's only 2 of us. We'd both like 2 pillows and probably 3 blankets total will be enough"

Tech: "So 2 pillows?"

Me: "No, 4 pillows"using my fingers as well here

Tech: "Ok, I'll be back"

15 minutes later, he brings us 5 blankets, 2 sets of sheets and about 10 pillows.... I just smiled and said, "Thank you, that will be all for tonight"

See what we deal with?? Can't even tell you how many times people ask who's watching our other kids too! 

Anyway, so like I mentioned, Steve and I switched off in the pull-out bed, and he may be able to sleep somewhat in a chair... but for me it's absolute torture to even try! So I killed a lot of time facebooking, pinteresting and blogstalking ;).... and I guess making up words apparently! 

But Friday evening, I had to take a moment, a moment because I heard the unmistakable sounds of a life-flight helicopter landing, a helicopter that was unmistakably carrying a child because it was coming to Primary. I cannot tell you what it does to me to hear or see one of these. Same thing with an ambulance, or even someone wearing the "life-flight" insignia. I took that moment to pray for that child.... for their strength, for their courage and their comfort. I also prayed for this child's parents, because they need prayers just as much for all of these things. I cannot ignore how close I've come to sending my child in one of these. Cannot also ignore how close my sister came to riding in one of these over 17 years ago, but sadly they didn't get there in time. It's enough to make anyone's heart stop when they hear that sound. I also could not ignore taking time to be grateful in that moment. How lucky we are each time we take Emarie home from there. That hospital is filled with children fighting battles, the weight of which should not have to be carried on such young shoulders. My daughter I do include in this category, but I also know there are parents here that are constantly faced with terrible decisions. Decisions of ending life support... of hearing doctors tell them there's nothing else they can do for their child's cancer.... and then those tiny little babies that are born much, much too early. The staff at Primary are amazing, and we are constantly indebted to them. One of the best is making sure the time a child spends there is the best it can be.... even if that's all they have left to do.

Yes, I am blessed every time I take her home..... each and every time.

So, coming back. As you can imagine, switching off sleeping would have the tendency to make 2 poor parents very tired! So, sleeping during the day was pretty much a daily occurrence. On Saturday, at one such time of Steve being asleep, and Emarie was asleep as well... so, I got bored. This was also the day of pretty much the only snow storm Utah has seen. So what did I do? I took the camera and went all over Primary, U of U hospital and took some very random pictures... here's just a few

 Outside and it was still snowing!

 I can't believe I've never caught a picture of Em's favorite elevator here! This is on the outpatient side (she doesn't ride the one by the main entrance very often) and she gets so excited when this is the one who's doors open to her!

Yeah, this was just a nerdy attempt to capture her surgeons name plate.... yeah, don't ask!

After I got back from my photography excursion... the two sleeping beauties awoke and we got ready to put Em in her chair again to see if we could maybe get away with taking a walk... and without cords! She had no IV at this point (they had taken it out earlier that day since it was going bad), so the only thing left was her oxygen and well, this was getting on to be too long for her needing it after a surgery... but when we tried it off, it didn't go so well.... but we didn't let it stop us and we took Em out of her room for the first time that stay!

Fyi, she had to take her balloon with her everywhere she went!

This is also when we had our first and only (mostly due to the inclement weather) visitor! A friend that we subsequently met here almost a year ago. I talked about it in this post. Not sure why we didn't document her being here (meaning I don't have any pictures of her)... but she did take this picture for us!

 Unfortunately there were more people in the playroom than I'd ever seen! I'm sure this picture was very hard to take! But thanks for coming Kelly! And thanks for the picture! 

Little miss found her favorite thing at the moment! A piano!

 Really starting to think she might have some talent here too!

I took this picture after we got back to show how badly Emarie has been scratching herself! Just to paint an even bigger picture, she pulled out an IV, nearly pulled out her epidural and tore up and ripped off countless bandages on her incisions! 

Sadly enough, it actually got a lot worse than this... I really need to take another picture!

We had been told that day (Saturday) that we would likely go home the next day (Sunday).... though I'm never convinced until I see the discharge papers! But sadly that evening is when everything took a turn for the worst.

I had begun to notice Em's belly being swollen on Friday. Doctors assured me that it looked normal, but I still suggested maybe adding some meds that would help, Miralax (which she should have been getting everyday anyway) and eventually a suppository. But that evening (Saturday) I had a bad feeling I couldn't shake, and around 2 am, those worries were confirmed when Em threw up. I wish I had paid more attention to what was in the first round of vomit, but I do remember it didn't look "normal". But, we got her cleaned up and she was already falling asleep again, so we all went back to sleep after that. 4:26, she vomited again, and this time there was no mistaking, there was definitely blood in it. Also, this such instance with her swollen abdomen and the thrust of her heaving, it was enough to pop her g-tube out. Nurses informed the doctors and then after changing her diaper that only contained blood, they were notified again, and a KEB x-ray was ordered. Belly was measuring nearly 60 cm at this point, which is more than 3 inches bigger than her normal waist size... very alarming.

To really give you an idea of how much bigger this is, I'll share this picture again from right after her surgery

You can see how she clearly has a defined belly button here, above, not so much, and you can see her ribs. Also in this picture, you don't see her veins like the above picture.


Thus necessitating an x-ray

Labs as well had been ordered at this point, feeds were stopped, so IV's were reinserted (I say plural, because there were about 4 different ones put in to insure that they'd always have a working one with her tendency to loose them so easy). The blood draws were ridiculous, poor girl had 6 in 2 days.... like I said ridiculous! And most of them were really early in the morning ugh! 

I know that #4 was done at 4:30 am, and thankfully that was the earliest, but talk about yuck! I mean who orders blood work that early in the morning?? All of this is more than anyone should have to put up with.... but let alone someone that's recovering from a huge surgery and dealing with their intestines not functioning! I'm sure most would not be able to find the ability to even smile.... but not this girl.

This is after one such blood draw (on Sunday) and IV (they coupled these together a lot because it was easier). I had climbed in bed to help hold her when I noticed how hot she was and temp showed 103... and all I was thinking was what else is this poor girl going to have to put up with? So of course that was a reason for more labs... even though she didn't vomit after the 4:30 time, every diaper that day was still only filled with blood.

First round of labs showed that her hemoglobin levels were dangerously low, thus requiring a blood transfusion.

This picture was made in good fun.... but I don't think everyone appreciated the joke. Emarie was making faces because she was starting to feel better after the transfusion started... so really she was happy and these were taken in good spirits to lighten the mood. 


They gave her two units of blood slowly and she was finished up just after 10 pm.

 And she was feeling much better! And see no more oxygen! 

 But as soon as the transfusions were finished we had to head downstairs to get a chest x-ray to rule out respiratory infections for the "mess".

 Poor girl looks so tired! Can't say I blame her though!

X-ray looked normal for a child with asthma, but this wasn't a surprise since she didn't have any of the other tell-tale signs of a respiratory infection.


I guess blood is what Em really needed because she became a completely different kid afterward! O2 levels began to improve, fever went down considerably and the kid had enough energy to last for days! Stayed up until about 2 or 3 am laughing like crazy! 


The next morning (Monday), was when the doctors continued pouring in... but still with no answers. But, I still don't appreciate things like bone marrow disease... hemophilia.... cancer.... being casually thrown around. My heart dropped to the floor at the mere mention of these things, causing me to almost miss when one said that most of these things had been ruled out.... They were at least all in agreement that they didn't think the huge blood loss was from the surgery, or the blood discharge in her bodily fluids... they all believed that it's been happening over time.... yet not something that they necessarily want to explore. The labs that morning had showed that her hemoglobin levels had more than doubled and the GI doctors thought that if there was even the slightest decline in the labs the next day (Tuesday), that they would scope her then immediately. And of course I felt like an awful mom for hoping they would go down, because I really felt there is something going on that needs to be looked at.... but of course no such luck, those crit levels were even higher, so no scope *sigh


But Monday did warrant some more walks and visits to the playroom :)

This girl is getting to be a pro at rolling her eyes.... must be mine ;) Mom is still needing a lot of practice with the new camera!



Tuesday was when the resident pediatric surgeon came in because he had come across Em's chart, and he too was concerned. After receiving her history from me and assessing her himself, he thought that she should be scoped as well.... but of course the GI doctors were not as convinced. And they suggested we maybe see a blood specialist to rule out any blood disorders. But after asking the Ch18 community about this and since there's no family history, I didn't think it was necessary.... unless maybe nothing is really found related to GI, then I may revisit this claim. The surgeon also believes that she has been slowing loosing blood over time... and really that's not ok. Anyway, my stance is to not let it go, and I've been on the phone with different doctors since we've been home. I know her pediatrician will help, so we'll be seeing him soon... and her regular gastroenterologist we've already scheduled with for the 1st of February.... and trust me, this time I'm not letting it go. 


Other than the news from GI, Tuesday was the best day we spent at the hospital thus far.

After so many pictures, Em kept hiding her face.... so this was my sneaky attempt at getting her through a hole in the side-rail of her bed ;)


The two of us got to explore the hospital that day, and she joined me for lunch, which I had to admit was a first ever for when she's been admitted! 

Us at lunch, photo courtesy of Em's iPhone


Em joined both her daddy and me again for dinner that evening

Sadly he only got pictures of the two of us though!

And our funny little girl laughing at Sesame Street.... got to love modern technology! 


Wednesday was discharge day, which means that she spent 8 days in the hospital. Since she made such a turnaround from her transfusions and was looking great, they didn't see any need to keep her, and we agreed. No reason to stay in a hospital bed when the doctors haven't even agreed to see what's going on anyway.... *sigh


But we were happy to be going home... and so was one sweet little girl!

 Getting her hair done... looks thrilled, right? ;)

 All ready!

 Couldn't resist this! That hat was from her grandma Peters for Christmas and doesn't it go so well with the pj's and  gingerbread toy my grandma gave her??

 "So.... why aren't we leaving yet guys??... Seriously, put the camera down and let's blow this joint!" Note how red her lips look! Seriously, scroll up and see pictures from before and tell us what you think! Looks like that extra blood made a difference in a lot of areas! 

The iPhone photo I caught that I absolutely love!  :)

 Yeah this picture is too funny! Really does look like she's getting ready to go sky diving! This wonderful thing strapped to her is her replacement for a car seat until she recovers. Actually she proved to be quite a challenge to the car seat team with her wedge and all. This is the best they could come up with... much to my dismay :(most know what a fanatic I am when it comes to car safety!)

 "Seriously, do you really need to take pictures of this??"

And here's how she looks when all hooked in the car... we thought she might not like it, but we were wrong, she quite enjoyed it! All I can hope is that she doesn't get too use to it and won't put up a stink once she's able to ride in her car seat again! Needless to say, she won't be taking any unnecessary car trips in this!


So that's it! Sorry it was so long!!!

Number 15

*Play song, "Hero" with this post (I hate this song by the way, so I am still on the lookout for a better one!)

Well, number 15 was a doozy and I think we're going out with a bang. I say going out because, God willing this will probably be Emarie's last surgery for awhile.... what?! Life as we know it is going to be SOo different! She's not done completely by any means.... but as long as nothing crops up and surprises us (uhm like this surgery actually), then she should be done for a good 4-5 years! And of course there's probably still going to be the minor things like ear tube replacements (one pretty soon probably too), but those are not too big a deal.

This one was a doozy, because again we had some experiences that we've never had before. Not nearly as traumatic as number 12, but still scary to say the least. Complications that arose were before, during and after surgery. The before and during were mostly the hospital's oddities.... strange things on her charts like stating that she was allergic to plastic bags.... where did that come from?? And one of the nurses going over the procedure with us and adding in that Dr. Stotts would be doing some work on her right foot as well as her hips.... uhm, did we miss something?? Anyway, after talking to Dr. Stotts and having him reassure us that it was just the hips for today, we felt a lot better, and bid our girl goodbye in front of the purple doors. 

Now comes the complications during, and believe me as alarmed as you might be reading that, it was hard enough facing that there might be a problem.... relief when there wasn't actually a problem and annoyance that they still weren't getting things right! Let me explain... after we handed Em off to the anesthesiologist, we headed down the hallway to the surgery waiting area where we checked in with the desk attendant (an old friend, haha!) and then proceeded to take Em's stroller to the car and grab things like the computer, books and other things to keep ourselves occupied for what was supposed to be 4 hours. We were gone maybe 10 minutes tops, Steve headed back before me as I went to load myself up with some cold caffeine since I was working off of 2 hours of sleep from the night before. Well when I exited the elevator and saw Dr. Stotts in the hallway, I was a bit surprised which he could tell, and he reassured me that they just hadn't called him yet and he wasn't concerned since he was sure the anesthesiologist was still placing the epidural, and that he was heading there now. Then I entered back in the waiting room where I was stopped by the receptionist saying the OR had called for me while we were gone... yes panic, but I did keep my composure all the while thoughts were running through my head about breathing difficulties, difficulty with the epidural and a number of other things that could be going wrong! She gets them on the line and guess what it was.... 

A Question About Tape!!

Seriously??! 

Em is like me and has quite an intolerance to medical tape.... anything really causes both our skin to break down, but the worst is the plastic tape which causes swelling and rashing. But it's all over her records, and we go over this at least 3 times every time we come in for a surgery.... yet they're still asking me what's ok to use?? After I tell them tegaderm, mefix, any of the like, she says yes I saw those on here, but I just wanted to make sure! Ok thanks for freaking me out for nothing then!

And, that wasn't the only time they called either.... twice more about steri-strips. Wow! 

But anyway, after we got all of that out of the way, Dr. Stotts came in to see us a whole lot sooner than we expected! Surgery went great, he was really pleased with how the joints were looking, he did not need to fit her with a dreaded spica... and oh yeah he gave us these:

Those are the brackets and screws he took out from the last surgery. Infant sized, and I have to admit that they're a lot smaller than I expected. After seeing them in all of Em's x-rays it was a little weird! But anyway, she has all new hardware and he upgraded her to the toddler size ;) Whole surgery took only about 2 1/2 hours, so that was nice. Didn't have much of a wait for the surgery.... no, our real wait came in after....

So, it did seem like awhile after Dr. Stotts left before they were finally calling for "one parent of Emarie" and I made my way back to bed 11 in PACU.

 No cast, instead she has this wedge pillow strapped between her legs

Epidural site

Now, Em is not unaccustomed to having a long PACU stay, but usually it's due to O2 levels and pain control. We've never had a problem waking her before, and they were equally concerned over her low blood pressure. But the anesthesiologist wasn't worried, at first. But after 3 hours, he decided they may have to just turn the epidural off for awhile. They'd said that it's not uncommon for kids to have problems their first time on an epidural.... well, this isn't her first I assured them, it's her third.... yeah, my girl is four and has probably had more epidurals than most child-bearing aged women, she's beat her mom out at least! So, yes, they were all in agreement that they may need to back off the epidural. And at this point I was nearing a breakdown since I was worried over her not waking and now worried about what her pain was going to be like with them completely taking away the device that was numbing it all! They didn't remove the epidural though, just turned it off for a bit. But her nurse back there suggested that I switch places with Steve for a bit since accommodations back there are slim! So I went back to the waiting room to get Steve and show him where to go (I'm usually the one that goes to PACU and he meets us in recovery if it's same day or on our way to the floor if she's being admitted). And then I proceeded to the bathroom to have myself a good cry (sometimes you need it you know?!). When I had regained my composure and made myself presentable again, Judy (waiting room receptionist) was waiting for me outside the bathroom where she gave me the sweetest embrace and let me know how much she admires me, and what a strong and amazing mother I am... so much for gaining composure! She also ended with something to make me laugh, "And I better not see you guys for a long time!" Yeah, we're hoping too! Anyway, thanks to her and all my Facebook supporters, everything was made a bit easier.... so thank you to you all!

 Awake finally!

And not 20 or 30 minutes after I'd sat down, Steve was texting me letting me know Em was awake watching Sesame Street of course and they were getting ready to place her on the floor! And when I met up with them, it was a completely different girl than I had left in bed 11, and I'm so thankful! They had turned the epidural back on too, but at a lower dose this time. I think we got to the room by 5, which was more or less over 4 hours for her in the PACU.... longest yet!

On our way to our room!

Our great view from the room


Thankfully, the rest of the evening and night went as smoothly as we could have hoped. She has shown a little pain, but being such a valiant warrior. And the only moment of weakness I've felt since we've gotten to the room was in one such instance and she held her arms to me pleading with her eyes for her momma to pick her up and make it all better, and how awful it was when I had to tell her I couldn't hold her :( Cannot even describe how heart-wrenching this was... for both of us. You may wonder why I can't hold her.... well for one, she has no cast, which means there's only a bit of gauze and tape covering the places they just had opened up and slightest movements can cause her torments of pain. But also there is an absolute "no no" to hold her while her epidural is in.... which it will be in for at least a few days. So I will be counting down the hours when I can hold that sweet girl and make this all better :)

I know some have wondered why we count Emarie's surgeries. And I don't really feel the need to explain, because I don't think I should have to. But for one it is a good reference for me. I can't tell you how many times I've looked at this post when counting Em's history for procedures. Thanks to my counting, I know exactly when and exactly what was done for each. Also, I do it for her. I am not trying to brag or boast, because this is not something that should be bragged about. But I think she deserves some credit for all that she's been through. And that is why I count, and will continue to do so. 

We are not experts. That is simply impossible to achieve expertise when being faced with your child going through unimaginable pain. She is the hero in all of this... the warrior. She will forever be my hero and I will spend my life trying to be worthy to be her mother.