Emergency Surgery

LIFE SAVING SURGERY #2

Harmonee just had an emergency surgery to drain her tummy. Within a half hour of telling me what needed to happen and getting my signature for consent they were wheeling the stuff into Harmonee's room to begin the surgery.

The surgery was to drain the stomach fluid and hopefully stop the infection. They would open up her Kasai scare to put a big black sponge into her tummy to keep it drained. The doctor said that if a complication came during surgery and she passed, he would still think it was the right thing to do. If the surgery did not take place... she would pass away no question.


As me Liz Lulu and my bishop waited for Brandon and his mom to show up the tension built. We talked about the possible out come that she would not make it. Harmonee would want to be a donor. So that would be the best gift, and to give back to all of those like her. We thought about the possible organs she could donate. Though it would not be many, but lives would still be saved and it Harmonee's spirit would live on watching over her little transplanties.



Dr Scaife came in. Mine, Brandons, Liz's, Bishops, and his moms hearts dropped to our stomachs as he walked up nonchalantly. "She's fine." I gripped Brandon's and Liz's hands as a huge sigh of relief came over us all! She still has fight in her! Our hope is for them not to close her up... but to close her after a liver has her name on it!


Love you my dear precious babe, I can't wait to hold you, see you smile, watch you play, run, walk, and be HEALTHY! Love, Mommy!

Day 4

Still hooked up to all of the machines, but the doctors said they have had a few positive changes. She is now off of her blood pressure medicine, and it is staying stable!

 Her ventilator (machine breathing for her) has been taken down a notch so she isn't breathing as fast, but still dependent on it. They took a chest x-ray of her lungs which showed a little distress, this they think is being caused by her tummy which has gone up from 56 to a 57 over night. A tummy ultrasound showed that there is still not a lot of fluid gathering, making it still good and bad. Not enough fluid to drain and relieve her, but this means NO infections in her GI!

She has stopped bleeding out of her rectum, so they think the rectal meds have started to work and they are treating one infection. She is no longer bleeding out of her nose only a drop or so every once in a while, and still only stomach acid coming from her "tummy suction" tube.

The dialysis is still going to help her kidneys along, hopefully preventing them from getting to the point where she will have to have a new one.

Yesterday they tried to put a femeral PICC line in (one going in at her hip up to her heart). With the right hip being a failed attempt they tried the other hip, another failed attempt. Then they tried putting one down through her neck... failed attempt. They are going to try to put another PICC in her other arm in order to be able to take out her old PICC because they think that it may be the cause of the infections.

Tonight they are going to re-start her TPN. With the extra nutrition and energy her body may be able to fight the infections easier. Once they have the old PICC gone, and the TPN started her body will be able to fight the infections faster.

Harmonee is still happy and stubborn, even through all of this. She is fighting as hard as she can, it is slow progress, she IS positively progressing! Molly (her Doc, Dr. Books partner) said she is very encouraged at the progress she has made, it has ruled out some of the infections they were scared she had.

PELD score: 1B
Pics coming as soon as I get my hook ups. No worries.

Days 2 and 3

Harm still wasn't very stable yesterday. Her nose had started to bleed a few more times along with another bloody diaper, blood from her lungs and more blood from the tube that goes down her nose to her tummy to drain it. Today there is only stomach acid content in her tube (so far), no blood from her lungs and she is FINALLY stable for her condition.

Yesterday they took another ultrasound on her tummy to see if any fluid had accumulated over night from Monday. Little fluid was found, but still more then the day before. The doctors said this could be a good and bad thing. The good thing; it would rule out most of the infections they were starting to think she might have had, since her tummy was swelling with fluid, not her intestines. But the bad thing; this added worry that maybe her rectum was torn and the fluid was blood. This made them a little more interested in testing a few different things since this could also be why her stool is bloody.


She is still on dialysis which the doctors aren't planning on taking her off of for a while. Since she is in multiple organ failure (liver, lungs and kidneys) with her heart bouncing back! A machine is still breathing for her, so to let this machine 'work its magic' she is still heavily sedated to keep her from trying to breath over it, or pulling it out. Her blood pressure is finally stable, getting her out the of the septic shock zone! The doctors are going to look into decreasing her blood pressure meds.


She has been under a heat lamp off and all today and yesterday. The nurse said that with a baby this sick, they don't actually spike a temp until she is getting better. Interesting to know. She has been getting plasma through IV to help her internal bleeding, that they still aren't sure what is causing it. She still has her 3 infections and the doctors still aren't sure what they are. They are thinking about taking her PICC line out of her arm and putting one in her leg, so that the infections in her PICC will be gone.


As of now she has 6 IVs running, still with limited access, rectal medications, 9 IV anti biotic meds, dialysis, on a oscillatory ventilator (breaths for her side to side, instead of in and out), under heat lamps, labs every hour, a tube draining her tummy, a catheter (with a thermometer attached to measure internal temps). Pain killers, and meds to paralyze, and more coming soon.

LOTS and LOTS going on. But she is stable and doing much better. I can't wait to be able to hold my baby again and to see her smile and her big blue... and yellow... eyes! I even missed the yellow in her skin that has finally decided to make and appearance today.


Chelsea came to visit. Her son Jordan just had his Kasai and is doing amazing! I hope he never gets to this point of BA. He is such a cute little boy, and no baby should ever go through what Harm and so many other liver babes have! I also met Lydias parents today. They are staying in the room next to us with Lydia, her mom is so brave and was able to donate part of her liver to Lydia. I am jealous of her. :).


My brother, sister in law, parents and Brandon's parents came to visit today as well! Along with nurses from the infant unit that I can't wait to be able to get back up to... hopefully soon! They came and talked to Harmonee, and I am sure Harmonee was happy to hear their familiar voices! The nurses here at PC are amazing people, only the best!

Today is a better day after having a wonderful movie, good conversation making me feel less insane, sleep, and breakfast. I felt like I was "normal" for a night! Liz, James, and Julia are some amazing people and if you haven't met them, you really should! Or you can always check out Liz's blog with her sweet beautiful baby London (lulu) and her pretty pink new liver. http://liverforlulu.blogspot.com/

PELD score is FIRST PRIORITY! Come on Harm! Kick these infections and lets get you a NEW HEALTHY PINK liver!!

**Sorry... I will try to keep you updated daily from now on so your not reading a novel when seeing Harm's updates. I will have the hubs bring up my phone hook up too so you can see more pics!

End of day reflections...

There is nothing like friends to keep you going at a time like this. Dani came up and sat with me watching Harmonee, thinking of questions my brain wasn't fast enough to ask, having a laugh and just knowing that people care. Nikole, has been sending gifts (good thoughts) from Hawaii, and the girls from Brigham have all pulled together to let me know just how much they care. They are all great aunties. Days like today really make me thankful for such best friends/sisters, liver moms who have turned to family, and nurses who are like 2nd Mommy's to Harm. Is there any way I can ever express how truly thankful I am to each of them??

A trip to the ICU

I was looking forward to telling you that we were able to stay home one more week from PCMC that Harmonee was great and that's all their was to it. My thinking started to change last night when she started to sound congested. I tried unplugging her nose... it didn't help, just started to bleed. So I left well enough alone and let her fall asleep. At 2:30 I was woke up to coughing and gagging. I stared at the first sight of bloody vomit.

This wasn't that big of a surprise since, she does this quite often. So once again, I left well enough alone and let her fall asleep. Layla had woken up early to go take a sneak peak at baby sis, making sure she was still home I guess. This time... I woke up to murderous screams. I jumped up and ran to the girls room!

Harmonee was covered in blood, head to toe! It was oozing out her nose, the corner of her mouth and up and out of her diaper! I went to change her to see what was going on. Nothing was left clean of her diaper. There was blood stained on her skin, down her leg and puddled in the diaper! Of course... first reaction... DR BOOK!!!

Little did I know at the same time I called to get ahold of who ever I could, they were actually calling me to tell me they had admitted her because of low sodium. I went on to tell them her bloody story. We got here to our first room, the nurses immeadiatly put her on oxygen. Triscia walked into the room, first things first, down to the PICU we went.

16 doctors and nurses piled in her room, set her up to things to breath for her, to suck her tummy, and IV on each foot, extra had and even in her wrist under her PICC line.

Her belly is at 55 cm, but not of fluid, of air. Her heart was strained due to low blood flow, and her kidneys labs have yet again doubled. The tube in her tummy has pulled about 4 ounces of blood out since we got to ICU. She is starting dialisis tonight for her kidneys, and the cardiologists are watching her heart as careful as possible hoping that the lack of blood flow didn't do permanent damage.

On the upside... her PELD score went up to 38!! But once we got to the ICU she went to 1B on the list which helped her bypass a few other on the list that now, she is qualified at "more sick" then they are. Her spot at 1B is to be tested again next Tuesday. If she is taken off she will go back to a PELD of 38.

Since I had absolutely no time to eat with all of the news, Liz, my life saver came to visit me with donuts, sandwich, string cheese, a drink and chips... ect! I was calm. Not crying... anymore... until I heard Liz singing "every little thing.... is going to be alright... every little thing... is going to be alright" to Harmonee. Which took me a second to catch myself from crying even more. Chelsea has been keeping tabs on me all day, caring, worrying and everything else. Liver moms know just how each other feels. Its a strange bond that will never be broken!

P.S... pics coming soon :)

Week 1... GOING HOME

Bye! Bye! Alicia and Kat! See you soon!! 

Maybe Next week, but hopefully not until the week after!

Me and my new PT. This was pretty fun getting out and played with on a mat... 

Moving in ways I didn't know my body could? Thats another story...

Finally asleep after playing with my toy awesome toy all day! But... 

maybe I will wake up in a little while to watch it some more. 

Don't want to miss a minute of this thing!

DO YOU SEE THAT!!

THIS is the awesome new toy I was telling you about in the past few posts.

I got to go outside and look at Salt Lake and feel the breeze. 

But the mom made me wear this silly duck mask.

Daddy, Mommy, and sis came to see me on Sunday! Sis got up and helped my nurse do my vitals. COOL!

The doctors came in this morning to look at Harm. No intention of letting her go home, but to really just let another resident doctor meet her who would be on the rest of the day and night. With out expecting the outcome that I got, I asked if Harm could just go home for the weekend, since I would be leaving Thursday for a friends funeral, Layla's birthday Friday, and birthday party Saturday. The doctors looked at each other for a minute asking, "is there anything we need her here for?", after all the doctors shook their heads he asked the nurses, "do you need her here for anything?". The nurses, shocked at the question shook their heads. The GI doctor thought for a minute, and said, "I don't no why we are keeping her here then." This was rather entertaining, shocking, and exciting. Harm gets to be at sis's birthday. Even though she will probably we readmitted on Monday. Some times I feel like Harm is the one in the Army. She gets to go home on leave, then has to be back on a certain day. Hmmm...

Her PT came in today to help get her sitting up and rolling around like other kids her age. She had her roll this way and that, then sit up and lay down, twist and turn, stretch and fold, stand and bounce. By the time they were done Harm was so exhausted her PT laid her down just in time for her to fall fast asleep. After being so use to laying in a hospital bed, this was a MAJOR work out.

Day 6...

Today has been another "keep nothing down" day. But still better then yesterday. The doctors still did not have anything to say about her other then to watch her for a few more days. They did not to her ultra sound today to check for anything in her tummy, so I am think that may be a good thing. They also started her continuous feeds again through her NG. Which is also good because Liz and London gave her a lot of bags for her feeds a few days before they took her off. Now every hour she get 7 cc of formula, to hopefully get her out of the rut of fluctuating weight, and even it out to just gaining.

The nurses brought in a really big toy for Harmonee to see and play with. It stands taller then me, with a projector on the top that makes designs on the ceilings, with lights, strings, balls, bubbles and everything a baby at Harmonee's age could ever dream about! (I forgot my hook up for my phone at home again, so pictures coming soon, again). We made a trip out side today as well. Harmonee fell asleep in the breeze, after a lot of play looking out at salt lake and at the yellow flowers that are coming up in the patches of garden.

Day 5...

I came back up to the hospital today with sis and Brandon. Harmonee was so excited to see everyone. She kept her eyes open even though they were bright red and rolling back. She smiled and was giggling so happy that she could see everyone!

She is doing good after her blood transfusion yesterday. Her energy is back up and she is a little more "pink" if you can call it that. The doctors tested for swelling in her tummy today. The tests showed that there was some, but with the access fluid in her tummy this is expected. The nurses have been pulling blood out of her NG tube lately but today it is a little more pink, so tomorrow will be an ultrasound on her tummy to see if she has any abscesses. She has had one of those days that she throws up everything though. Hopefully tomorrow will be the start of a better week! With some luck of a call maybe...

Day 4

I came home yesterday to be with Layla since I haven't been able to be with her much lately. I miss Harmonee though. It is hard to leave her at the hospital alone while waiting for Brandon to be able to go up and be with her. I don't want her to feel lonely or scared. But I made sure that she had nurses that she knows and loves, that know and love her as well and I know that I can trust.

Not much has changed since I left yesterday. Her weight has dropped once again, the doctors say that is more then likely from her tap, not being able to eat and wtih taking even what little fluid they did. This morning her blood count came back low, so tonight they are giving her a blood transfusion in order to help protect her liver. She slept good last night, for the first time in a few days, and has had a good day with the nurses today!

Hurry up and wait. I hear that a lot. I haven't really had much time to think about Brandon leaving for deployment until the past few days. Brandon will be leaving in just a few months, starting the 18 months he will have to stay away with A.T, training, and deployment. But of course this is another ''maybe''. Orders keep changing. They are going, they aren't, they are.


I began to wonder last night, what happened to the predicatable lifestyle everyone use to fall into. You knew where your kids were, what you would be doing that weekend. With your babies living up to the normal expectations that you always had of them, crawling, walking... living. To know your husband would be home this week (end), month, or even this year. Planning around maybe's and making plans with the knowledge of quick change at any moment, gets old after a while.

Of course I am not complaining, just wondering really. I do love my life. My girls, my husband, my friends, liver moms, and the nurses that take care of Harmonee. And I wouldn't change anything about it. Of course, as all parents would, I would take Harmonee's pain away and give her a new soft pink liver, and bring her home to be a happy healthy little girl. But I cant, and the hope that soon the call will come doesn't die. This is just how it is suppose to be right now. What ever her story is, however it ends, whatever her story will tell or the lessons it will bring, it will be worth it. We just have to hurry up and wait.

I can normally deal with my husband being overseas, fighting for his country and what he believes for a year. But with the thought that he might miss Harmonee's transplant haunts us constantly. Once he is gone, the only way to get him home for her transplant when he is overseas or at A.T is to call the Red Cross, who will call a life flight to go get him, and bring him home. This could take a week or more, and he will miss her transplant. I can't imagine how he must feel knowing he will miss his baby girls transplant if the call does not come while he is home. We just have to hurry up and wait to see what happens.

Of course while he is gone we will have sweet Layla. She fits in perfectly to this whole crazy combo I call "my life". She is my relaxation, my sigh of relief each day in her healthy little body, with the way she looks at Harmonee with understanding. She knows that my place right now is to be with Harmonee even though it means being away from her. When we are home she doesn't miss a beat being filled with hugs, kisses and cuddles when Harmonee isn't feeling her best. Each week she "hurry up and waits" for us to come home.

So I guess it is true. You just have to hurry up and wait. Weather it is Harmonee hurrying to gain the weight and grow so she will be a better candidate for a liver. Layla being ready for us to come home and be a family, and then leave again at any time to another long stay at the hospital. Or Brandon hurrying to get things done so he can be home or at the hospital as much as possible before he officially leaves so if the call does come he can be there give his little angel to the surgeons, and to hold Layla during the long wait. Hurry up and wait? I can hurry... but do I have to wait?

I have to keep reminding myself of the patience I have learned the past few months. It is the hardest thing in the world to have patience with such things, and some days it feels almost impossible. But I can't tell you how thankful I am to my friends, family, other liver moms, and nurses that help me through all of this. There is an end. I just have to have patience to hurry up and wait.

Day 3

Done getting her tummy drained

Tutu love...

Changed her PICC dressing today
too. What a day!

Just hanging out with her monkey!

Harmonee had another bad night, this time because of a fever that has come and gone for the past 24 hours. The doctors came in this morning worried about something a bacterial infection in her bile ducts, or her new bile duct. Her tummy was still small but they decided to drain some of the fluid off her tummy still in order to check for this. Usually Harm's tummy gets to 55 or more cm before they decide to do this, today her tummy is only 48.5 cm.

Again, Harmonee wasn't allowed to eat, and of course she picked up on it when she cried for a bottle and we could give her nothing. By the time they were ready to do the procedure Harmonee was pretty upset, and as always she fought the medication that would relax her. After a long struggle to get both needles in they finally did, moving on to get what ever fluid they could. Harmonee at this point was still upset, wiggling, screaming, and wanting her bananas. With all the effort to get the needle in, the doctor was only able to drain 5cc. Barely enough to test for the bacterial infection. As a reward Harmonee ate her bananas and fell asleep finally.

Last night I came home to see Layla, and to baby sit her this morning. Brandon got out of the last part of his drill and is going up tonight to be with Harmonee. She will be surprised to see him and very excited being the daddy's girl she is! All in all Harmonee is still stable, and pushing up to get her transplant!

Day 2...

I just like her bracelet...

Today's nurses... Harmonee is
so bright it drowns
everything else out!

Mom. I am trying to sleep.
No pictures.

Harmonee has slept all day after a night full of pain and tummy growls. The doctors couldn't give her anything for pain because of her dehydration, and didn't want her to eat very much for one more night. This morning when the doctors came into see Harmonee he said that her labs hadn't changed yet but no news about going home or a new PELD score just yet.

The GI doctors volunteered Harmonee to a small class from the University, who would come to see her and learn about her disease. When they asked if they could come I was hesitant but willing as long as they were fully gowned, gloved and masked. Before telling what disease she had the doctor had the students try to diagnose her starting from the outside in. They started with her TPN, moved to her heart monitor to see her oxygen and what not. On to her NG tube, and skin color. The students of course saw the jaundiced color and commented on the greenish tint to it. I never had noticed the "greenish" tint to her before this.

They also felt her liver and since her tummy is perfect size right now it was easy to find and to feel. The doctor taught them what was which, liver or rib. Her liver is just as hard, so it is a little difficult to determine, but rubbing your finger over it, you can feel the bumps that the cirrhosis has made. Her poor liver needs to go and let a new soft pink one take its place. I am sure poor Harm thinks so too.

When she got her bath today we were hoping for some weight gain, "think big" we told her. She is back up to about 13.5 pounds! Then it was down to the test. See if it was bad of good weight. Bad weight would be her tummy growing which ment the weight was fluid in her tummy. Good weight would be her tummy shrinking losing some of the access fluid in it. They put the measuring tape around her tummy and we told her, "think small Harmonee..."! I guess this room is the good luck charm as everyone says because Harmonees tummy was down 1.5 cm from this morning! She is doing great on her part!

New room...

Its funny the affects that a few familiar faces and a little bit louder unit, can make a grumpy little girl happier and fall asleep faster. We are both glad to be back where we should be, where the nurses know Harmonee, and Harmonee is happy to see the nurses and I think the nurses are happy to see Harmonee too! Not to mention the room has a shower, and is a lot bigger then the past few rooms we have had. Sadly... NOW, we are home... away from home.

Day 1...

First things first, time to work out!
She was actually jumping along to the
music while I did my Pilate's yesterday!
I love this picture!

She fell asleep while playing
with sis! I think that was the plan though,
then Layla took her turn at falling asleep
on the couch.

Talking to the nurses, telling them
her days commands.

Good morning everyone!

Here we are, back at PCMC. Room 3062, for now. We are waiting to be moved to a another room where we can have our primary nurses. I'll let you know the rm #. Harmonee's bibrubin had tripled and her other counts doubled, with her kidney counts rising. They took a few blood labs last night to see if they could find anything that was wrong. As of now they have found nothing, but natural progress of her disease. Now they are testing for some sort of infection in her tummy around her liver.

She has lost a pound since Monday at liver clinic, but they are thinking that that maybe just because of how dehydrated she is. Nothing has come up to lead them to think differently yet today, and hopefully wont.

The doctor put Harmonee on a strict eating diet, she is only allowed to eat 1o cc every 3 hours or 20 cc every 6 hours. Last night was not a good night. By morning she was getting use to the new diet but until then she didn't like being limited and was fussing and screaming all night with tummy growls. I think she thought she was gradually getting starved to do another procedure. Her natural reaction now when entering the hospital is to eat as much as she can before doctors come. I don't blame her.

The doctor this morning had not a lot to say about her other then she looks better then last hospital stay, or last week. If it weren't for her labs he wouldn't even be able to tell anything was wrong with her. He was pleased with how small her tummy still is, but wasn't happy to see it had grown 4 cm since we got here last night.

Liz and her sister Julia came to see us last night. I wish I would have thought to get a few pictures. But as always it was good to talk to Liz and to meet Julia. They brought me the most addicting Great Harvest bread, with butter and honey that I have been munching on all day! Julia is letting me use her netflix account, which has already come into use! It is so good to know their story and to see their ups and downs, and now... the final product, a brand new London. I am jealous of their close relationship, it makes me wish I had a sister! I love them both already!

Readmitted

Dr. Book just called. Harmonee's labs that her home care nurse took yesterday came back that her liver counts are to high and if we keep her home we will run into trouble. We are heading back to PCMC tonight while Triscia finds us a new room. She predicted that we could be here a few weeks again, but also said that they were hoping that this hospital stay would be ''the one'' that Harmonee gets her liver. Dr. Book said she was going to pull for it. I hope she gets it!

I Know... there are A LOT of pictures, but there is updates after them all!

FINALLY HOME! Both slept amazing! Harmonee
loving being back in her own bed was snoring,
giggling and talking in her sleep. Layla slept
great knowing that sis was just feet away! They
both slept in the next morning! THANK YOU!

Daddy, trying to get Harm to fall asleep,
another day, another NPO order, another
delay, another UPSET baby!

Not wanting to give his little angel up
after she had finally gotten to sleep!

Layla was showing me how to play with
this fun little toy while waiting for Harmonee
"Look mommy," she would say, "Like this."

Passing more time, it seemed like hours.
Daddy and Layla coloring pictures.

After Harmonee went back to get her PICC,
Layla decided to pretend she was Harmonee
by putting her binki in her mouth and
sitting in her place. Silly.

Our new nightly routine... take a few... add a lot!

Our full nightly routine!

Waiting for Dr. Book to come tell us we can go home!

Talking to London and Liz! Look at those cheeks!

Home at last! Time to sleep!

This was a picture that Liz gave me.
Christ is in the surgery room helping the surgeons.
I loved it!

We didn't get admitted! By the looks of her you wouldn't be surprised that we didn't. She looks good with her tiny tummy, even her yellow skin looks somewhat good today! While walking up to liver clinic a lady commented on how bright her eyes were. Thinking she was meaning the blue AND yellow, I agreed. After a minute or so of looking at her walking and talking she commented, "she has a great tan, its so pretty. Was she born with it?" A little surprised that she would think it was a tan, especially how white I am, I just smiled and nodded.

I also got to see Liz and London. Talking to Liz is always a great help, especially how open she is and how willing to help she is when talking about the ups and downs of waiting for a liver. I could talk to her for hours. I watched London walk around while waiting for the doctors to come see us both, I could only imagine Harmonee doing that in a few months. London looks great, happy and healthy one year old! Everything that I want Harmonee to be in October.

We got Harmonee's PICC fixed on Saturday and since then we have been getting use to doing it ourselves. We need a little practice, but we aren't half bad if I do say so myself. Of course we are a little more... maybe a lot more, paranoid then we were with her NG tube, but with it being a sterile procedure and it being a little more risky if you mess up, it only obvious why.

Harmonee's stool is also so green it is almost black. The nurse told me her son had biliary atresia when he was born as well. We both thought it funny how little things like dark stool color catches our eye. All in all Harm is doing great! Still stable, still waiting for a liver, and still gaining the weight!