A great weekend!

Lily had a great weekend!!  We are still in the ICE room (intermediate care environment).   Which means there is a greater nurse to patient ratio.  The downside is that she isn't able to just get up and go as she pleases, so we can't go out for walks to the healing garden or the beach.   Tonight we did get her up for a short walk which the nurse had to come on, we walked to get a popsicle! mmmm she was pretty excited to get up for that walk.  Hopefully monday we can leave this room so she can get back to taking her walks and playing at the beach.

Laughing at Toopy and Beenu? I don't know how you spell those names!

On saturday I went out and got some supplies for her to make Justin a special Father's day craft.  She spent probably two hours working on it, it was so cute!  And today Justin proudly wore it around the hospital and to church, he even got a shout out from the pulpit recognizing the handiwork ;)

These girls are too cute! They sure love their daddy!! 

On friday I was finally able to wash Lily's hair!  It was gross! It had not been washed since June 21! HAHA I'm dying.. that is sooo gross but for a good two weeks we weren't allowed.. and then once we were allowed to she threw such fits I thought it wasn't worth the fight and getting her so upset when she has so much else to deal with.  I would just spray it all over with yummy detangler and then do her hair.   It was sooo nice to get it clean and put them in some fresh pig tails! She even let me wash it again today!  We had to get creative to figure out a way to get it washed without getting any dressings wet.  This is what we came up with... I had a bucket under her head.. worked great!

I don't think Lily shared the excitement that I felt...

I'm amazed how well Lily does getting her dressing changed considering what a large open wound it is.  I imagine it must be immensely painful for her but, she handles it so much better than a 2 year old!!  She likes to take off my mask for me when we're done.  

Working on some more crafts! 

I have a new respect for the term "security blanket"  after the surgery a few weeks ago she liked to have a blanket up to her neck most of the times but didn't freak out if I took it off to change her diaper etc... she would just say she was cold which was code for I want my blanket back on me covering my chest. However, after this last surgery she doesn't ever want the blanket off her!  I tried to change her bum and she was freaking out, so I said I would get something for her and got her a pillow case to cover her chest.  Once I give it to her she says "thank you, thank you mom, thank you so much" and lets out a big sigh of relief.

Her spirits have been so high all weekend long it's like the old Lily is back!!! I'm really amazed actually.  Just tells me that infection was really making her feel awful for so long!!!! But she had just had a major surgery so we all thought that's just how she was recovering! I thought she had had good days before, but these are fantastic days of giggling, smiling, playing, joking and laughing!  (Until it's time to do a dressing change or get a needle)

I even was able to get a few good cuddles and naps in with Hannah this weekend which was really nice! She is such a good natured baby!!! Love my two sweeties!

The wound...

It is remarkable what one day will do.  Lily is doing so well!  She seems so much more herself today than she has in a long time, smiling and laughing and most importantly eating, and eating well at that.  I  haven't seen her eat this well since the first day she ate after her last surgery!  Hopefully this appetite keeps up, then we can get her off her blood thinner shots and go to something oral! 

I see how good she is looking and can't even begin to imagine how awful that infection was making her feel!  She has a morphine infusion again and they will probably start to ween it tomorrow.  It just sucks that this wasn't picked up before.  Unfortunately there were always reasons to be sore and uncomfortable and for different things to be showing up in bloodwork.  There was no reason to suspect there was an infection under there because her incision had healed soo nicely.

Today I was present for her dressing change and had been warned by my mother in law what to expect, as she was the one with her last night when it was done.  They did not close up the incision, instead they left it open and have two sutures placed about an inch and a half apart just to keep her skin somewhat closed.  So we are left with three 1-1.5inch openings and at some points look .5cm deep. At the moment they pack it with saline soaked sterile gauze twice a day.  I couldn't believe how well she did while they changed it. It obviously hurt and she whimpered but did not at all need to be restrained while it was done.  It was awful to see.  It is deep and well, just gross to be honest.  They are going to set her up with a wound vac on Monday.  That is basically a vacuum sealed dressing that sucks out any grossness with a suction it has a little canister that she can clip onto her pants.  They say it heals quicker that way.

This area will close from the bottom surface of tissue up to the top so will obviously not leave her with the nice scar line like she had before.  And here I was a little bummed that they had not followed the same incision as her last surgery so she had two lines.  This scar will heal and look really bad, the dr.s said in a few years you can get cosmetic surgery to fix it.  I absolutely will not put her through that.  I plan on raising her to be proud of those scars, all of them, and if she wants to do something about it when she is old enough to make that decision for herself, then that is fine.  I never try and cover up her scars because I don't want her to ever think that she should have to, or ever feel embarrassed of them.  

Hopefully we have an uneventful weekend!

Back to square one...

On Tuesday I noticed that Lily's incision looked like it was starting to get a little red, I brought this to their attention and they said they would look at it again the next day to see if it got any worse.  Later in the day I felt it looked worse and told the nurse, who reassured me they'd be looking at it the next day blah blah blah so I had to start being persistent because I didn't feel it was ok that it was getting worse and it seemed Ike no one thought it was an issue.  In the afternoon her incision started to bleed a bit and later some CV doctors came to have a look and when they opened the dressing the scab came off and pus was coming out. (gross i know)  I had her call in a dr to come and look at it.  One of the cardiologists came and agreed we should get her on some anti biotics which took hours to come up!

Yesterday I felt it was getting worse even on the antibiotics and again the CV drs came to look a couple times and tried to milk it to see if they could get any more out of it which they did.  I can't imagine how painful that would've been for her, I had a hard time just watching.  I  think Lily did extremely well. Over the last couple of days she had become very protective of that area.  By late afternoon the top area of her incision and the tissue around it was starting to swell and we were told she might have to go into the OR to have it surgically debrided.  They started her NPO just in case she went in last night but then took off the order and said if they do it, it would be in the morning.  She later had a bit of a fever and the CV dr came by yet again to look and then talked to the surgeon.  He wanted to do it wednesday night but she had eaten so he felt it would be safer to wait until the morning.

I had Justin come up wednesday after work incase she went into the OR.  So glad to have my partner back with me.  It's been hard to be away from him, don't get me wrong we have had wonderful support but its just not the same as your spouse.  Lily was sooo happy Justin was there.  She was saying the cutest things and the faces she was making were priceless and melted my heart!

Lily went in first thing this morning 7am.  We went for a stretcher ride and I got dressed up again to take her in.  They were able to initially sedate her with the PIC line as I held her tight and told her how much I loved her and that I would see her when she wakes up.  I've said it before its so hard taking her in those rooms because she remembers and gets scared.

The plan was to open up the incision and clean it out hoping that it was just superficial and not into the bone, they were also hoping they wouldn't have to take out the wire that was holding the sternum closed.

I am writing this as we wait for her to come out of the OR.  Her surgeon just came out and told us that they cleaned it out, it had started to get into the bone so they did have to open up the breastbone again.  He finds it very unusual that an infection would flare up like this so far post op.  I am just heart broken for her that she has had to go through this again and have the pain levels right back where they used to be after surgery the first time.

She is now awake and sipping water, she will hopefully come out of the PICU later today.  Hopefully with this infection out she will start to feel better really soon!  

I'm tired!

I think the only thing I'm not tired of is not having to make dinner! :) Thank you Ronald McDonald house! On the few days we didn't have a home for dinner meal provided, I had a freezer meal that was given to me from friends at church!

Really, it's just been the same old, same old... lots of visits from lots of doctors, pokes, meds, blood work, x-rays, echos, ecg's... walk to the healing garden 30 times a day... go see the fish 5 times a day go to the beach 2 or 3 times a day... repeat, repeat, repeat...

Sunday was my limit.. I was just worn out.  And my emotions were quickly rising to the surface... they still are to be honest.  I'm feeling a bit better today and will continue to try and relax and refocus etc... I've started reading a book maybe that will help take my mind off things.  As time goes on here it becomes  harder to watch Lily have to go through everything.  And with a toddler every little thing is a big deal.  Even if you're just going to change a bandage.  To her after being through this she doesn't want anyone coming anywhere near her if you look like you might be doing something to her! So it's difficult to continue to have to get echo's and ecg's done and I'm usually the one trying to help her through it.  Any parent knows how hard it is to see their little one sad for any reason.  I just can't even imagine if I feel like this how she must be feeling actually going through it all without really understanding why she has to.. :(   I'm trying to just remind myself that there are a lot of other people in way worse situations than ours.  That helps me snap out of my moods at least for a little while..

I usually only post happy pics of Lily because then it seems like she's doing well, but the reality is there are lots of sad times too :( 

Yesterday she went down for a chest x-ray which is usually done in "the tube" while we were waiting to go in she was crying and I was trying to talk to her and just explain things again and ask how she's feeling etc... and she said she was scared.. and it just made me cry.  I just cried and cried and tried to compose myself by the time the x-ray tech came out to get us which I just barely did.  Luckily we were able to get her chest x-ray done sitting on a stool!! I was soo glad she was calm "enough" to get it done that way instead of the tube.  made it a lot quicker and less traumatic.  She continues to amaze me.  She had an echo done which she hates more than anything.. I don't really know what it is about it that scares her so much and gets her so upset because they don't hurt you just have to hold still.   She did soo much better than the last one! and they were able to finish it in about 10 minutes! record time for her!

The drainage has been minimal to nothing over the last few days and today they pulled them out.  The doctor didn't like the looks of the right one and he said to be honest they might end up needing to go back in, but I want this one out regardless.. So hopefully they dont' need to go back in!   They will keep close watch to look for any accumulation of fluids.  They have her on 2 different diuretics to keep her "dry" dehydrated basically so that she doesn't have excess fluids to drain into those places.   She will also be on a very low fat (less than 1 gm of fat per serving) diet for about 6 weeks to help prevent fluid buildup in those spaces.   Her one drain had a pus pocket (I know gross) by it that they need to monitor and now her stenotomy scar is reddening in the middle.  So they will keep close watch on those over the next few days.

Rapunzel came to the beach today.  I had just told Lily that we needed to go back to the room to get the tubes out and she was very upset.  She didn't want to get anywhere near Rapunzel :( she just kept trying to get away from me.  This was the best picture I could get with the two of them before I had to scoop her up and carry her out of there kicking and crying.

We call her Edmonton Rapunzel... not quite Disney... She did have the long hair though!

Today she also came off her IV TPN so essentially she is "unplugged!" will make it much easier for her to get around and hopefully much more comfortable without those tubes in!  They will keep her pic line in for the time being which is just fine with me! she can have blood work done through it and then it's there if we end up needing to go back on IV fluids etc...

One thing I love so much about lily is her ability to bounce back.  She quickly returns to her happy self after any procedure.  A few hours after her tubes came out I said  "you get beads for having your tubes out" and she was so happy to get some beads! she loves to talk about what she's done and you know she's proud of herself she says " ya I get some beads cause my tubes are out!  I cried but I don't cry no more! and now I get some beads!" and then she laughs..  I love this little girl SOOO much!!!

Getting her coins out of her pocket to make some wishes

Haha really enjoying that popsicle!

The doctors all love my shoes!

So yesterday my mom left :( She was out here helping me for 3 weeks!! I would joke that she was Hannah's new mom because I was never around.  She needed to get back for my two sisters who are having babies very soon!!  I'm so grateful for her help, and making it possible to never leave Lily alone in the hospital!  Justin's mom is up helping us again! Thank goodness for moms right!!?  So now Hannah has another new mom! haha

Poor Hannah has either a cold or she's teething, she woke up with a fever thursday morning :( Luckily I had packed some infant advil so I had something to give her.  She had quite the congested little nose :( that seemed to only last about 24 hours.  I'm sad that she isn't feeling 100% because now I only see her at night when I put her to bed and in the morning when I get her dressed.  I don't want her at the hospital just in case, so when I bring her in the morning to switch spots with grandma, she's gone for the day. :(

When Lily was sleeping yesterday Judy from child life came in and asked what size shoes Lily took.. Then hands me these cute sparkly sandals!  She said they were just donated and she had to give them to Lily because she's such a girlie girl.  When Lily woke up she said "oh I love them!" and had to put them on immediately for her walk!  As she went down the hall she had to show all the nurses and Doctors haha then tells me "mom all the Doctors love my shoes!" (She calls all medical professionals Doctors... nurses, ultrasound techs, radiology techs, social workers etc...) She also insisted on wearing them to bed that night!!

Lily was able to start eating yesterday too! She was pretty happy about that.  She mostly ate fruits and vegetables, her appetite is quite small right now.  She did still have some drainage but not a lot.  Today they have continued to let her eat even though there has been some drainage from the right side.  The left side has been stopped for days so hopefully after a few days of eating they can at least take out the left chest tube!

She continues to be very uncomfortable if meds aren't given around the clock every couple of hours.  Judy told me that older kids that have these tubes in say that they are the most painful part, and that once they come out they feel a million times better.  So it's no wonder she's still in a lot of pain :(

Lily has really gotten into doing puzzles.  She is really good at finding matching pieces, while at the beach she wanted to do a puzzle that obviously was too advanced for her (150 pieces) but we played with it anyways and she found pieces that fit together and we spent 30 minutes working on it and had fun until the beach closed!  I'm going to need to stock up on a few puzzles for her!

I'm full of ice chips and water!!!

So here's what's been going on the last few days....

 On monday and tuesday Lily's oxygen saturations were dropping into the eighties and during the night they would dip low enough that they put her on some oxygen.  (In my head I still have the mentality that whats' the big deal, her says were way lower than that when we came in!) Regardless they did give her some oxygen to keep them above 87% after a while I was starting to wonder why her sats were dropping almost 10% since her operation.  She had also started to require a lot more pain meds I believe it was over the weekend? ( every day just melts into the next I can't keep track anymore )  So those two things had me a little worried... I thought maybe she could have an infection that we aren't catching b/c she's given all this pain meds it'd mask a fever.  I had them do some blood cultures to check for anything and they also checked for a UTI.  Everything ended up coming back clear but her inflammatory response markers were elevated which they weren't concerned with.

One of her many art pieces! She did this all by herself!

Monday night she was having PVC's which is Pre Ventricular Contractions.  I dont' know much about them but from what I somewhat understand its' when the ventricles contract slightly earlier than they're supposed to.  Now obviously normal is 0 PVC's and I was noticing this number and alarm going on her machine with PVC 90 and above! So I got her nurse and asked what a PVC was and told her she had them.  I asked if it was something a pace maker would pace if she did have one (as she has the leads but no generator) She said it would pace her... Lily looked content and all her vitals were normal she made the charge nurse aware of it and said Lily was still in a normal heart rhythm so it wasn't anything to worry about.  I was starting to panic and almost had a meltdown I didn't think I'd sleep a wink that night and I'd just stare at the monitor all night long!   However, I did end up falling asleep and ended up getting a nice sleep at that!

Lily painted a rainbow! I love this picture!

On tuesday afternoon the blood work came back with a low hemoglobin level and they decided to give her a blood transfusion.  She had been looking seriously pale since the day before and they thought this would be the best option and might also be the reason for the drop in Oxygen sats.  So waiver was signed and blood went in.  (It makes me cringe the thought of someone else's blood going into her, I know it's tested etc. and I know she's had them before during surgeries but there's just something about it that I don't like.. but at the same time I'm grateful it is available for her b/c she does need it.. "it's in you to give. go give some blood if you can!")   Within minutes it looked like her color was already getting better.  Saturations did get a little bit better as well.

It's in you to give! ;)

Lily's fluid has continued to slow down while being NPO on Monday they started her on a steroid prednisone for 48 hours to help with the drainage.  Its another nasty tasting medicine but Lily is getting really good at taking them regardless.  I just tell her the truth "This doesn't taste good and you're not going to like it, but you can't spit it out.  When we're done you can have something to drink and i'll brush your teeth to get the taste out of your mouth" she's done amazingly!!! She barely puts up a fight anymore for her am and pm pokes! Again I just tell her like it is. You're getting your poke and it's going to hurt but it hasn't' happened yet so there's no need to be upset.  It'll be over really fast! and she doesn't even cry anymore! I have found through this that being totally honest with her about what's going to happen really helps calm her down.

I was talking to one of the cardiologists and he said sometimes these kids can drain fluid for like 2-3 months!! and some even go home witht he chest tubes in! eek I sooo do not want that to be us! Sometimes it just takes the body a bit more time to adjust to the new pressures as now her heart doesn't pump blood to her lungs he says so just moving around can get her circulation pumping so we're going to try and do more and more walking as much as she'll tolerate in hopes her heart will get used to it quicker and stop draining.   The left side drained almost nothing yesterday so hopefully that tube can come out soon. they're going to have her try eating on wednesday or thursday and see how the drainage  is going.  

So yesterday morning her nurse said there was some gunk in her chest tube, you could see it looked like some clotted blood and fatty substance stuck in it so she kind of pinched it to try and get it moving down to the bulb.  We just left it to worry about a bit later they were going to clean it out.  In the meantime we went downstairs for an ultrasound of her neck to check for clots before they change her blood thinner.  We went down in a mini wheelchair Lily loved it! Once we got in the room she put up an enormous fight b/c she hates echos and it's the same room.  Then I noticed the bulb totally full of fluid! It hadn't been that full in like a week! I got really serious with Lily and had to get loud and in charge of her because the clip had come undone from her pj's which holds it up so it doesn't put weight on itself and get ripped out.  They called down a nurse to drain it and she stayed to help while we did the ultrasound.  She had to empty it again about 5 minutes later!!!!! Sooo this big long 4 inch plug had come out of the chest tubing and fluid was basically pouring out of her pleural cavity. Awesome. :(  When we got back upstairs it again had to be emptied!!!! in about 15 mins they had drained 225 mL of fluid and about an hour later another 50 mL! That explains why the pain and the drop in her sats, as her right lung wouldn't have been able to expand properly! Instantly the saturations started to rise and they now are back up to over 95%! The blockage would have happened after her last chest x-ray because all looked clear at that time.   It's apparent that it must have been blocked in the tubing for days but high enough in the tubing that it wasn't showing in the part that is out of her body.  So now we are left wondering if the right side really has stopped draining or not.

Again sporting some crazy rat nest hair! 

The doctors say she will be able to start eating on thursday to challenge the drains again.  The left drain hasn't been outputting in days so hopefully no new drainage and they can at least get rid of that one!?

Wednesday night was bingo night at the beach and Lily had fun playing! She took all of our chips and she had to put them on the pictures.  I was surprised she could follow along with what she was supposed to do.  There were disney characters assigned to each number and she found them and put on her buttons/chips.  I got a bingo so she got to pick out a prize.  She stood on her chair so she could see all the barbies on top.  There were a bunch of princesses and then I said and there's a doctor Barbie and she screamed "Doctor barbie!!!!" I had to laugh she's so cute.  (she still likes drs?!)  Once she got her prize she said I'm done now picked her up and started marching out. haha she got right down to business, got her prize and was on her way!

She still loves the healing garden and the water that is there.  We blow bubbles and sing songs and throw money into the pool.  She makes me pick out the money over and over and over again so she can throw it in hundreds of times!

If grandma comes with her then she gives her new coins to throw in, instead of picking out the old ones! haha

My sister was visiting and Lily was being silly, Rachel said you're full of beans!!! Lily's reply was "no I'm not, I'm full of ice chips and water!" ;) that kid is too smart!

This is a bit of a rant...

On friday she went to the OR to have a PIC line put in.  Because she was being put under general anesthesia she was not allowed to have anything to drink for 3 hours prior to going in.  They stopped any fluid at 2am, as they weren't sure what time she was going in.  She ended up not going in until about 3:30.  I was totally annoyed with alot of things that happend that day, the fact that they waited that long and didn't bother telling us so she could at least have a drink was one of them.   I understand that they're fitting her in but even a ball park so she didn't have to go without for all that time would have been appreciated.  Sometimes I wonder if they realize they're working with a 2 year old and not an adult that understands why they can't have anything.  So she didn't have a sip until about 5 oclock pm.

After a long wait she deserved a popsicle!

Another thing that ticked me off was that while she was in the OR they didn't take out her other IV lines (once she has the PIC she doesn't need the others)  I asked the nurse and dr. that came in to take out her subclavian line about this and their response was "they don't like to" wow. they don't like to? So instead lets try and have a little kiddo sit still while screaming her head off while they cut out the sutures holding in this iv at the base of her neck.. that's a lot better for her...?! and then switching the iv fluids over to the pic line although it's not actually touching her Lily is still freaking out becasue nurses have gloves on close to her and are doing something.. it's all the same to her and she screams about all of it.  That all would have taken a minute or two to do while she was under and caused lily no stress.

 Another thing that bugged me was they sent us downstairs and we waited for 40 mins (they told us they wouldn't' call us down until they had the room all set up for Lily to go in) we waited there while countless patients on beds rolled by and OR doors were open and Lily could see in (which she DID NOT like).  the OR she went into was still being occupied and once that girl left obviously they had to clean it up and get it ready for Lily.. I felt so bad she was so thirsty and tired, if they had have called us down when they actually needed us she could have stayed comfortably in her room.  End of rant.

Walking her into the OR was AWFUL! She obviously can still vividly remember what happened the last time that happened and the fear of what was going to happen was very apparent, that broke my heart.  She obviously didn't know it was just for a special type of IV. :( Luckily she already had an iv so as I held her tight they put the meds in to knock her out.  I lost my composure once I left her:(  It took almost an hour for her to wake up which is long.  I was starting to get a little panicked!

So over the last few days Lily continues to be NPO (no food by mouth) they have allowed her to have 200mls of clear fluid a day so around 3/4 cup she thoroughly enjoys any moisture she gets in her mouth.. usually she asks for ice chips or water.  She has yet to ask me for food or tell me she's hungry.. I'm calling this an answer to prayer! So grateful she's not feeling starved!

She is still in a lot of pain.  Likely due to the chest tubes still being present after all this time.  So we really need to stay on top of her pain meds.   They stopped automatically giving them to her around the clock within a week of surgery.  A few times in the past couple days she has gone to the beach and within minutes she is asking to leave, she just has a sad tired look on her face which lets me know she's in pain.  Whenever I ask her if she has an owie the answer is usually no, when clearly it does hurt.  Within a half hour of her meds she is back to all smiles and laughing which brightens my day.  I hate to see her sad or in pain and not even wanting to play.

Lily wanted to get out of bed to wash her hands... She then proceeds to wash the sink haha! Just like at home, she is a wonderful helper! 

Happy Hannah and Grandma!

I was soooo looking forward to Justin coming back this weekend!  I was able to get a nice break with my mom, we went out to Olive garden for lunch and then did some shopping.  I desperately needed to get some new sandals and I walked away with 4 new pairs!  And of course it was so great being able to spend time together as a family!

Lily and Daddy adding to her "treasure life beads"

Lily's drainage has slowed down dramatically by being NPO, they will likely have her go the full week before trying a low fat or non fat diet again.  I know when she was 6 months they kept her NPO for a full 2 weeks before introducing food and part of me just wants to go the full 2 weeks in hopes that it will more likely be gone.  Obviously I'm not the professional and have no idea what is best in these situations so I have to go by what the Dr.'s reccomend.  I just pray that it has had enough time to heal!  (the thorasic duct)  If again she gets fluid drainage they will try different meds/steroids to try and help stop it.

Today we walked to the"healing garden"  It's an indoor garden on the same floor with lots of plants and  water features.  Lily liked sitting on the side and dipping her foot into the water.  We went again later in the afternoon and she was making wishes with coins justin fished out of the water for her! haha When we asked her what she was wishing for she said "for happily ever after"!! seriously you're too cute! I think she got that line from Enchanted! haha Lily is a sponge! She remembers EVERYTHING!  She was  making wishes for everyone that was there :)

On our walk back to the room Lily got the urge to play ring around the rosie.  I was slightly panicked because I didn't want her jumping to the ground! But she just jumped down onto her knees like it was nothing it was so fun to see her so happy!  It's amazing what some pain meds can do for a mood!

Another cute thing she did today was when we went to play with a barrel of monkeys she says "first I need to read the instructions!  "One day, you pick up a monkey with one hand, the end" haha  she said that every time we got them out to play!

I tried washing Lily's hair today with a shampoo cap thing.. it looks like a shower cap but it's wet inside with some sort of fleece material.  You just stick it on their head and massage it like you would in the shower and that is all you do.. It didn't go over well, Lily freaked out and all it really did was get her hair wet.. This kid needs her hair washed!!!! It's been like 2 weeks!! They won't let me get close to water yet because of the lines that were in her neck.. hopefully in a few more days they'll allow it and I can lie her down on the bathroom counter and wash her hair in the sink!

Lily is officially a spoiled kid.  Tonight when grandma came in her room she says "what did you bring me?" haha I laughed because it really was funny... Hopefully she doesn't get used to being spoiled like this!!! Another reason we need out of this place! I can't help but give her things because I feel so bad she's stuck in here feeling bad :(

Hanging out with some toys..