Almost there....

It has been a while since I have had time to update. I figured I better since I cant keep up with the texts and phone calls anymore haha. Not that I mind them, I very thankful for all of the support you all give to Harmonee.

The past couple months have been rough. In December, the prednisolone had broken down her skin to the point she got absesses. They started having us put bandages and packing them with silver and mesh to keep them from getting infected. By the first of January there was zero change. The plastic surgeon took her in to see if she needed skin grafs. There was talk of an ostomy bag if they didnt start to heal. Not ideal, but if we had to we would do it if it was in Harms best interest. Thankfully, we didnt have too. The plastic surgeon came up with another way of treating her abssesses and luckily they have started to heal. Along with weekly visits to the wound clinic at Primarys for measurments of healing. The weekend before last Harmonee was admitted for a blood transfusion and IV antibiotics for a blood infection. Honestly over the past week, I havent seen Harmonee act so much like herself since she first went into rejection! Its been nice to see her up and playing with Layla rather then laying on the couch, sick and tired, and crying because her wounds hurt. The blood transfusion did wonders for her wounds as well, they have shrunk a bit since then and have started to heal faster then they have been!

We also found out a possible reason for rejection at this hospital stay. Long story short, at one of the hospital stays we had in January, we purchased her Prograf (immunosuppressant drug) at PCMC. During that "bottle" her liver numbers gradually got better. When we got her refill at the pharmacy we normally go to her liver numbers immediatly got worse. Her transplant coordinator called the second pharmacy to see why this could have happened. Come to find out the pharmacy had used a couple different recipes to make the prograf rather then using the recipe transplant clinic had sent along with the prescription. FRUSTRATING!!! Her wonderful doctor had a lovely chat with the pharmacist who had messed up the medication, and to little amazment, the PCMC prograf has since been making her liver better once again.

Harmonee is on the road to recovery. Her wounds are healing considerably now, and her liver numbers are getting better with weekly labs. I think she is finally in the clear, hopefully she will get a chance to be a "normal" 2 year old soon!!

Harmonee and Layla

Rollarcoasters of rejection....

Harmonee's new morning and night routine

Its been a long couple of months. There has been lots happening with Harmonee's body. But we will do the long story short version to keep things simple :). First, starting in September, Harmonee was in moderate rejection. They did a biopsy, some IV steroids and then she was released with better liver labs. Once they started to tapper her steroids her liver labs immedately got worse. Dr. Book decided on another biopsy, which showed less rejection, but her labs continued to get worse. With no improvement Dr. Book decided to take special lab that tested her and the donor to see if Harmonee was making antibodies against her donor. The test came back positive.

Her new condition is controllerable, it could eventually hurt her liver and she could end up on number 2. But as of now, that is not the case! She was given another medicine called cellcept, which will help out her prograf. Because of her condition she will never get off of the cellcept it will always be a helper to her prograf. It is another immunosuppressant to help prevent her body from making any more antibodies against her liver, prolonging and preventing number 2. Things have been insane, but thankfully, now we know what is going on and how to treat it! I couldnt believe at the first of September her labs were perfect with just a tempramental prograf level, and a week later, she is in the hospital with moderate rejection. But for the first time in 2 months, Harmonee's liver labs look pretty good!

HAPPY BIRTHDAY HARM!

On a brighter note, Harmonee turned 2! This is her at her birthday party! She partied so hard she fell asleep half way threw! I am so proud of her for getting this far, and pretty excited to see how much her fun personality grows in the next year!

Oh, Harmonee

This update is not one of the sorts that I like to update about. Of course, I am horrible at updating anyways. Harmonee is not doing very well. Friday morning she woke up with a bloody diaper, and VERY bad labs. I called down to Dr. Books office and they told us to come down on Tuesday. Here we are on Wednesday.

Yesteray was a crazy day. It started out with lab work, then up to Dr. Books office. When we got to Dr. Books office everything was going fine until they looked up her most recent labs. They did NOT get a very good response. They were almost to the point of before transplant. Harmonee was admitted by Amber while Dr. Book set up ultra sounds, and an OR time for her biopsy. Harmonee was put on NPO status (Nothing by mouth) and was being prepped for surgery.

Her ultrasound was bad, as usual. Her portal vein is so much bigger in a part of her liver that the blood is actually swirling, and causing her vein to clot. Her biopsy of course came back to show rejection. After her biopsy we got word that Dr. Book went to the red cross and called daddy home. Who is now on his way.

As of now, Harmonee is on a Large dose of steroids, giving her MAJOR tantrums and excessive energy, which dont go well together if I might add.

Her Prograf level (immunosuppressive) is super low no matter what the dose. This is one of the options as to why she is rejecting. But going further into that she may have an underlying infection that could be making her reject. But that is to be determined.

Belated Updates

I realized I haven't posted anything in months! But thankfully there isn't anything health related to report... for once :). Harmonee has been doing awesome! Her labs are that of a "normal" liver and her liver is doing wonders making itself a new portal vein, bypassing the scar tissue. We have been attempting to ween her of the binkie, but it seems a worse habit then ever! She now has to have 3 binkies when entering the hospital. One in her mouth and one in each hand. Silly girl. I decided in the end though, that I'll let her keep them a while longer. I can't believe she will be two in just a couple months! We have a very special present coming for her birthday... Daddy will be coming home just a few days before!!

Poor Harmonee thinks daddy is the lap top, and each night gives it kisses before she goes to bed. She runs to the computer and shouts "Night daddy! Lub you!" Layla always tells her that its not daddy but she doesn't care, for now it is. Both girls are ready for daddy to be home and I am too!
Layla is starting to take the absence hard, and with all of the holidays she just can't understand why her daddy doesn't come home from work. One the 4th of July she told me "I just want my daddy here. Layla needs him too." It broke my heart and a there has been nights she'll wake up in the middle of the night and start crying for him. She begs to talk to him on skype, or to call him. She just doesn't understand. Just a few more weeks! Just a few more weeks!!

On the bright side... we got family pictures taken while daddy was home on R and R in April :)

Latest Liver Clinic News

Unfortunetly last liver clinic wasn't exactly the best we have ever had. It was at first! We went early for ultra sounds which turned out pretty good. Meaning NO SURGERY!! For now at least. The timing has to be perfect. If they do it now they have a chance of tearing her portal vein again which could be fatal, and since her portal vein isn't that much worse then Decembers ultra sound, we still have some time. Of course, if we wait to long it could also be fatal, but it has definite warning signs such as bloated belly and enlarged spleen. In other words... 'the pre transplant look'. So that was good news. We go back this coming monday, but only so quick because of the happenings in April :). And Endocrinolgy clinic again in May.

The 'other' part of liver clinic wasn't so great as no surgery. Harmonee has some pretty bloody stools, meaning her tummy is bleeding from such a high dose of stress steroids. Funnnnn.... After a couple of days of absolutely NO sleep, the meds started to kick in and make her tummy feel better so she could sleep. Her new med schedule, 8 a.m. - Prograf, hydro and zantac, test blood sugar 10 a.m. carafate (which can NOT be given anyway closer then two hours of prograf) 4 p.m. zantac, hydro, test blood sugar 8 p.m. Prograf 12 p.m. hydro, dapsone, asprin, carafate, zantac, test blood sugar. Its not a very fun schedule, but it seems to be working with miss Harmonee.

Lots to Tell

I have been HORRIBLE at updating everyone. After the past few days of everyone asking me whats going on, I figure I'll update on the many things that have happened the past couple months.

Liver:
Liver labs, are still not good. Of course that has turned into the norm for Harmonee. There are many theorys as to why her labs are bad. The first is her clogged portal vein. This is the most voted for through out the doctors. They think that because the scar tissue it clotting her portal vein that her liver is not getting enough blood. Therefore, no rejection, but bad labs. The second theory is her low blood sugar.

Blood Sugar:
We have been checking her bloodsugar at least 3 times a day and if she is acting funny. So far, so good. We put cornstartch in her formula to help boost it up, along with a new set of stress steroids called hydrocortosone, instead of the usual prednisolone. She takes the Hydo every 8 hours so that her sugar doesn't have much of a chance to drop.

There are also a few theorys on why her blood sugar is funny. The least anxiety packed theory is that her adrenal glands have failed. During her ICU stay last year before transplant the doctors had to pick and choose organs, (this happens a lot with Harmonee). Luckily the doctors picked the heart and lungs and kidneys to focus on, unfortunetly in the decision Harmonee's glands were let go.  The second theory is a horrible theory. They have recently looked into her donors health history and found a disease that causes high blood sugar, and heart problems. So far her heart is good. But her blood sugars are struggling to stay up. One of the opinons is that Harmonee's body is fighting the donors disease and is over reacting making her blood sugars low. During her every other weeks labs there is a new test taken to show a certain hormone that goes a long wtih the donors disease. So far, the blood sugar is the only indicator that anything is going wrong with it.

Everything with blood sugar and liver are mostly just theory for now. She goes into surgery March 24 to unclott her portal vein. After the surgery endocrinology is going to start looking more into her odd sugars and liver clinic is hopefully going to confirm their liver theory and start working on her low blood sugars.

Physical:
HARMONEE IS WALKING!!! She NEVER stops now. She is still at the woddle stage that I love! Her and sister have races across the living room pushing their doll strollers, Layla, being the great big sister she is lets her win more times then not. Harmonee starts screaming when she wins "YAY!!!" She is talking so much. I attempted to email her daddy all the words she said and it came out to about 50! 0-3 has graduated Harmonee saying "she is up to date with a normal 17 month old baby!" Thats always good news. Of course, we still have speach therapy come visit. Her mouth trauma has gotten better but not by much. She still wont drink out of a sippy cup, and wont let anyone put food in her mouth except herself. She wont use a spoon or anything near her mouth, but she is getting better and has sipped out of a big girl cup!

I'll try not to take so long in updating next time!

Just Another Weekend at PC

Our weekend went something like this...

Friday: Woke up way late with Harmonee still asleep (not like her to sleep past 8 a.m.). I woke her up, and with in minutes she had fallen back to sleep on my lap, and this time... didn't wake up. I called GI clinic and Amy told me to take her blood sugar which turned out to be 38. After giving her her emergency stress steroids and some pancake syrup, Amy told us we had two options, I could take her to the ER myself, or have an ambulance come get her to take her to the ER. Either way, from the ER she would be transported to PC.

We got to the ER not even 20 minutes later and her blood sugar had dropped to 29. They gave her an injection of hydrocortozone and started a sugary IV drip. Oxygen was then their next priorty since she was only stating at a 70 and was working pretty hard to breath. Labs, coultures and xrays were taken. Her lungs seemed pretty foggy, and an ear infection was found.

By this time an ambulance was there getting ready to load Harmonee and take her to Primary Childrens. More tests were taken at PC, and Harmonee came back positive for RSV.

Saturday: We had a rough morning with lots of suctioning, coughing and throwing up. But by noon she wasn't doing any of this, and was up giving the nurses a run for their money before long. Endocrinology also came and decided to start taking test monday to see why her sugar keeps dropping.

Sunday: RSV hitting hard. Oxygen was turned up, suctioning has been every hour, and coughing almost non stop. Unfortunetly the doctors say she is going to get a lot worse before she gets better. She is still pretty dehydrated and its not helping her lungs break up the gunk they need to in order clear themselves.

Disaster Strikes in the OR

(Harmonee having fun in the rocking chair moving her bum and making herself rock throwing her hands in the air and squealing! Best part about a hosptial stay?: the rocking chair...)

On Wednesday night Harmonee's labs came back worse then before. Making everything move to a week earlier. Thursday morning Harmonee went into surgery.

It would be a quick procedure. They put a needle into her portal vein in radiology and push a catheter down to the narrowing in her portal vein. Then they will blow up a small balloon to help widen the narrowing and hopefully stretch out the scar tissue to keep it from closing. Its a fairly easy surgery that only takes about an hour and a half to two hours. With general anethesia and no risk except for accidentally tareing the portal vein, which is only about a 1% chance.

Surgery went to normal time when the surgean came to talk to me in the waiting room he asked me to go into the small room where they take you if they need to talk serious.

The surgeon said that Harmonee was okay but there was a complication so that they were not actually able to do the surgery. Disaster struck as soon as they put the needle into her liver. Because of the low blood flow her liver is getting chirosis and becoming hard. This made it twist funny when the needle was pushed into the vein, taring the portal vein.

They did an ultra sound and took labs to make sure that it wasn't leaking any blood and she was sent to the recovery room without a fixed portal vein.

Doctor Book and the surgeon decided that they would try this same procedure one more time. If this happens again Harmonee will have to cut open her scar for the 4th time and fix the portal vein this way.

As of now things are good. Her liver is hanging in there and even though she looks pretty tattered from the asprin dose, she is still happy go lucky!

Surprise! Its Surgery!

After getting out of the hospital last weekend and thinking everything was okay Harmonee's liver labs jumped again! Doctor Book called on Thursday to set up plans to go in to have a CT scan (cat scan) on Friday.

This scan was to figure out what is truly wrong with Harmonee's liver. Biopsy came back good, with out any rejection... then why high liver labs?

After Harmonee's cat scan recovery or in other words, 'sobering' her up from the sedation we went up to talk to Dr. Book about the results.

Apparently, Harmonee's portal vein looks like someone has tied it off with a rubber band. This causeing low blood flow, but not necisarily high liver labs. But first thing first, fix the problem that we DO no is wrong. On Tuesaday Harmonee is going in to dialate her portal vein. This is a very serious problem, but not a very serious surgery. This part of the surgery is done by a radiologist. Unfortunetly... and we are hoping this does NOT happen, if the radiologist cannot fix the problem, they will have to do a major surgery to get inside of her liver. Also, if her labs continue to rise... we will be starting from scratch to figure out what is making everything go off the records. But again... lets hope that doesn't happen either.

Biopsy Results

 Talking to Daddy through her IV. When the nurses came in she would hold up one hand to hold them away, put her IV to her ear and start talking to Daddy (Sad that this is what she knows is "daddy" I know.) Harmonee: "Hi Dad. Yeah. Uh huh. Uh uh. Yeah. Dad. Yeah. Yeah. Uh huh. No. Yeah. Bye Dad"... Daddy was there in spirit!

 

On Friday Doctor Book called wtih concerning news that Harmonee's liver labs had yet to go done, but up! We were admitted with a full schedule, that night she would have an ultra sound and in the morning a biopsy.

Ultra Sound:
The ultra sound came back not so good. Harmonee's portal vein has a spot of scar tissue that has made the vein narrow, not letting blood go through it easily. This happens with most liver transplants they said. It can make the liver act funny by making it swell. This is fixed by surgery.

Biopsy:
The biopsy came back PERFECT! No rejection! YAY! But... there was some swelling found, but only caused by a small cold. The doctors said that her liver must have taken the hit, and then the cold finally hit Harmonee this morning.

Ending Results:
We were sent home today, with everything the same as it was. You cant be to careful with high liver labs. Fortunetly we now know about her portal vein, and will be able to watch it and quickly fix it before it does anything dangerous.

That was our weekend scare. I was a little nervous about it being like last december, but it wasn't and I hope this will be our last hospital stay this winter!

Lab Trade Up

If its not liver its kidneys, if its not kidneys its liver. UGH. HARMONEE LYNN!! Harmonees labs last week came back with a touch of CMV, but her kidney labs were looking better. Dr. Book ordered another set of labs on monday. This was not a good day. For starters, the weather was to bad to get to labs that morning. So... that night when we made it out, Harmonee ended up grabbing and taring out 4 separate pokes, blood going EVERYWHERE, burises and cuts and so much more, until the 5th time three people had her pinned down. Literally.

Tuesday morning came and we got a very worried phone call. Harmonee's liver labs are now showing VERY high. This could mean rejection. Fortunetly, Dr. Book is hoping that this increase is due to the medicine being used to treat her CMV. On Friday she has more labs. Depending on what they show, and hopefully they will look much better then Mondays, but if they dont, she will go in for a biopsy this weekend. Lets hope this doesn't happen. But I guess if it does, at least there are things that can reverse it right!?

Next up... Kidney Failure?

Over the past couple weeks Harmonee has been in and out of the hospital for dehydration. I figured this was just because she had been sick. The second time she went in for fluids I was a little sad since I thought the minimum amount of fluid intake might not have been enough to suffice the winter colds and illnesses. Along with a very low blood count, and finding this blood in her stool I was getting a little nervous as to what this could mean. Not to mention the constant flash back of before transplant the day she was admitted to the ICU.

Verdict:
Stool samples and urine culture's were taken both coming back with a positive for ecoli. Of all things. Like I said before... if you can get it, Harmonee will. How did she get this?... Believe me, I  am still trying to figure that one out myself. What are the side affects?... Possible Kidney failure! Awesome. How do you get rid of it?... By taking all antibiotics away.

Dont worry I was a little confused myself.

Time for Action:
For starters. Ecoli causes kidney failure. This is especially vital to Harmonee since her kidneys have already taken the mother of all beatings. But also vital to ALL transplantees because of our best friend... Prograf. Prograf is a tricky medicine. If it becomes to high, your kidneys fail, but too low too soon, your liver (in Harm's case) with reject. Therefore it is time to pick and choose organs... doctor book is decreasing the prograf to give Harmonee's kidneys a much needed break.

Unfortunetly we just have to wait this out. There are NO antibiotics that will take it away. Oddly enough, antibiotics make ecoli worse. Go figure. So all antibiotics were discontinued. Including the antibiotics she was on for the prograf in case if she got sick.

Where are we at now?:
The ecoli is already starting to affect her kidneys, so we are keeping close eye on them. I keep a log of urine and bowl output. Colors, frequency, and amount. We are doing labs every other day. Todays labs came back to show that ther kidneys have declined even more.

The optimistic approuch:
If her kidneys don't take to much of a hit, they will bounce back faster then if they are hit harder then hoped. I am also hoping that in the long run her kidneys will bounce back with out having a liver repeat. On a brighter note... Liver is doing AWESOME!

Bored of being in the ER.

Never lets it get her down!

Liver Clinics Milestone!

I thought I would NEVER see the day that Harmonee's NG tube would be taken out. It seemed most unlikely since she had yet to start eating. Gagging if anything even brazed her lips. Oddly enough, we gave her bacon... Whala! Harmonee is eating anything and everything that can fit in her mouth that is edible! Bacon and chicken, soup and salad, bread and cookies. You name it. But still no bottle. Until one day... being the the overly excited mom I am, filled her to full of real food until she got sick over tubing her formula. This made her exceptionally thirsty. Who knew that just making her a little more thirsty would actually make her drink her bottle! Since then... its been quick progress to saying "see you later NG."

Excited I went to show doctor B at liver clinic that my baby was actually a tubeless baby. She chugged her bottle right in the middle of everyone. Not until after she made a mess of things first though. (see pictures). Doctor book was impressed and headed out to make arrangements so that Harmonee wouldn't have to ever put that NG tube in again.

Therefore, we came home from the hosptial with a glucometer since her blood sugar isn't staying up very well, and a scoop of cornstarch in her formula to add more sugar to her blood.

Here we are. Harmonee is tubeless, and straight on her way to walking! Early intervention is even planning Harmonee's graduation party since she is progressing so quickly on her own with having no Speach therapy, PT or OT since July.

Reading Dr. Suess in liver clinic!

I don't abuse her! I swear it! Its just a VERY large dose of apsrin and a baby who is learning to walk I promise.

Some how she got wrapped up in the paper, she drooled so much it tore right off while she was rolling around.

Birthday Picture

 

Happy Birthday Harmonee

There were times this past year that I never thought we would make it this far! I was almost certain that Harmonee's 7 month birthday could, and would be the last one we celebrate with her in person. This past year has been one for the making. Its been crazy and hectic, chaotic, organized, messy, EMOTIONAL, eventful, scary and at times a little much to bear. In ways I am excited that we have hit the one year mark, it gives me the freedom to say "This year WILL be different." But in other ways I am sad to see this year end. It is sad to think that Harm is already 1 yr old, it seems as though I have just brought a 'new born' baby home from the hospital (for a second time). This time to stay home, and for me to actually be the mommy (not the nurses) and raise her! Brandon asked Harmonee one day while she was sitting on her rocking horse rocking as hard as she could and laughing at the feeling, "who gave you the permission to grow up?" Unfortunetly we came to the conclusion that she missed the memo while stuck in the hospital.

This year has definitly taught us some things that we would have NEVER learned without going through this ourselves. Things that I was oblivious to and selfish enough to not think about them. We are a better, stronger family because of it, and a better person in and of itself. It has been hard, but then again... it brings whole new meaning to the phrase, "NOTHING IS IMPOSSIBLE"

OCT 8, 2009 - OCT 8, 2010

Oct 09- Harmonee was born, 7 lbs 9 oz, healthy and perfect, but full of trouble!

Nov 09- First signs of white stool and Jaundice

Dec 09- Diagnosis of BA, and first surgery "Kasai procedure"

Jan 10- Determination of failed Kasai

Feb 10- Work up for Transplant list

Mar 10- NG placement, Official placement on Liver Transplant Waiting List

Apr 10- ICU, heart, lung, kidney, and liver failure. DNR, on-off transplant list, observations from 'the giving side' of organ donation.

(Monday April 26)

(Tuesday April 27)

May 10- Liver Transplant

(May 18, after transplant)

June 10- Release from 2 month stay at PCMC, POST TRANSPLANT

July 10- Bye-bye oxygen, NJ and Daddy for training

Aug 10- Bye-bye Broviac, Hello rolling, and sitting up (ALL BY MYSELF)

Sept 10- Hello first tastes of baby food, CRAWLING, working on pulling up, early intervention, and DADDY from training

Oct 10- Hello 1 year Birthday, BACON and other meats! Standing, and preparation for walking. Bye-bye Daddy again. 

 

So you see... this past year has been INSANE beyond belief! This next year I hope wont have so many medical milestones! 

Apples and Bananas!

Harmonee is EATING by MOUTH! The FIRST time since MARCH!!

NO force, NO syringes, NO gagging, NO mess! All by herself!

Miss Paige... and More Great News!

Not all news is great news. And as we all know from personal experience, or by our liver babes stories, Liver babies come with either extremely wonderful news or absolutely horrible news!

For Harmonee, her news became absolutely horrible, before becoming extremely wonderful! My biggest fear is to have Harmonee's absolutely horrible news become the reality of other liver parents. Even though, I cannot to anything about it but to be there for the parents with an understanding.

I have recently gotten to know another very amazing liver mom! Along with all of the rest of the amazing liver parents. Unfortunetly I met Amy during Harmonee's PICU stay before transplant. If that isn't bad enough, her daughter was diagnosed and in the PICU just after her Kasai when we met, scaring poor Amy to death. But today Paiges news came. There is a HEALTHY second chance liver waiting for Paige right now. Paige will soon be a healthy post transplanted pink baby! YAY!

In other news, I am a bit slow. But the story is still there. Harmonee was in the Deseret News on Sunday with a really great story! Check it out!

http://www.deseretnews.com/article/700061126/Utah-baby-gets-a-new-lease-on-life-with-a-liver-transplant.html

Heading Home

Harmonee was able to come home today. The question still remains as to why Harm wasn't urinating. It was a quick and easy hospital stay with half as many cords as she has always had. Of course, her first IV was quickly pulled out and another one was placed just hours before leaving. But all in all it wasn't such a bad stay.

3 Months Post Transplant

Here we go AGAIN.

I have never been one to be superstitious. Nor to look at Friday the 13th and think of how much "bad luck" that day may bring. Or the number '7' and think something good/bad will come of it. But things change when you are a hospital mom. Weather its different symptoms, color of stool, urine, skin, a bump or even down to the smallest detail at clinic, a doctor not being there, or even something out of place. ANYTHING of the sorts that can happen. And in Harmonees case, if it CAN happen, it WILL happen.

Yesterday at liver clinic I had a strange feeling. Maybe it was just that Harm has been out of the hospital two months now! I started thinking about this while waiting to go back to see the doctors. Harmonee was two months old when she was diagnosed. As was it two months after her Kasai that she was put on the transplant list, and two months after being put on the transplant list that her body sent her into the downwards spiral of multiple organ failure. It was also two months from time of admittance to the time of discharge post transplant. And NOW two months prior to all of that and NOTHING major has hit us.

We were called back into the doctors waiting rooms. We walked into our room, and I realized immediately that this was the room we had clinic in the day before Harmonee was admitted into the PICU. Of course I was told the week before that Dr. Book wouldn't be here, but neither was she there that day; the day before the crash, before the PICU, the DNR, the multiple organ failure, and the bloody days that followed. I then realized that Harmonee was wearing the same purple bow as that day. When I sat her on the exam table I got that strange eerie feeling that you get when you feel like something bad is going to happen. Or perhaps that just being paranoid because of the symbolism's. My mind kept flashing back to that day though. Harmonee laying there on the table, pale, limp, breathing a bit to hard, fussy, and having thrown up all over the table fell into that deep sleep she didn't wake up from for a month after.

The nurses, and the PA came to look at Harmonee. Of course a few questions raised as to if she was feeling well or not. But all checked out alright, perfect liver labs, proteins, vitamins, so on and so forth, and we were on our way home.

Today we woke up to a not so happy Harmonee. Not a Harmonee laying on the living room floor with blood soaking out of her diaper, mouth, nose, covering the ground around her. Not a lifeless Harmonee, but most certainly a sick Harmonee. This I didn't thing much of. Kids get sick, and yes, especially prograf using kids. Since there was no fever, I figured a day of rest would do Harmonee some good. Of course at liver clinic the day before, the subject of Harmonee not urinating had come up. Harmonee had no wet diaper. The day went by, and no urine. So, as most mothers would do, I did what I had to, I called the Queens office....

Here we go AGAIN.

Of course this time around NOT for her liver. But for her KIDNEYS. She has stopped urinating. The nurses gave her a straight cath for a urine specimen, making Harmonee urinate all of the urine that was storing in her poor little, overly explanded bladder. Minutes later, Harmonee is asleep. But not without leaving everyone running for their money... as usual. And the horrifying  thought in my mind... I am a LIVER mom... NOT a KIDNEY mom, and personally, I really, REALLY, don't want to be both.

Pulling the NJ

Last Tuesday, Harmonee did her swallow study to see if she was able to swallow with out aspirating. She passed with flying colors! Dr. Book then gave the okay to pull the NJ and replace it with an NG. Meaning; Harmonee is now allowed to eat like a normal baby girl! She took to eating with the bottle pretty fast after her NG was placed. After a few days that is all she would take and we didn't have to give her any formula through her syringe. Yesterday at liver clinic they upped her eating, and so far so good! We were also told that if her labs come back good on Monday she will go down to once a week labs and her broviac will be pulled. This is great news! This also means that tonight is her last night of IV medication for her CMV! 

The P.T comes once a week to work with Harm. She is up to about 6 months developmentally from newborn getting home. She scoots she sits she rolls, next step is standing! Of course her legs are strong enough, just need a little more balance with her tummy.

Brandon left on Wednesday. We had to explain to Layla that daddy is going to work, but wont be coming home for a little while. At first, Layla kept asking, "Daddy go to hospital too?" Brandon kept telling her no, the army was taking him for a little "vacation". After a minute of trying to process this, Layla walked to Harmonee, "Harmonee no hospital, daddy no hospital. Where are you going?" So Brandon explained as much as he could. After a little while of getting use to the idea, Layla told Brandon, "You can't go with Army." It's been hard on Layla, after just getting our family back together someone is leaving again. But this morning she told me, "I miss daddy. But daddy safe, and come home soon." 

Hayden Cullimore

Hayden Cullimore

Hayden is 5 years old. He has Biliary Atresia and Dr. Book is getting him ready to have a liver transplant with in the next few months. He and his wonderful family need our prayers and support. We can make a difference in Hayden's life. The same difference we have all hoped for for our own children with these awful diseases. Hayden has been in and out of PCMC for BA and several other complications that have been created from his sick liver. I have recently met his mother Tessa and sweet Hayden. They are a wonderful family, and insurance isn't helping them the way it should.

The liver transplant and related medical procedures (as everyone already can guess from their own children) will be very expensive. A fund has been established at Wells Fargo Bank. Please send domations to "Hayden Cullimore's Donation account." There is no income tax deduction available for any donation or purchase to this cause or fund.

Haydens Benefits

A 5K run, titled "Help Hayden Heal", will be held July 17 in Pleasant View, Utah. You can mail in your pre-registration forms to: Help Hayden Heal, P.O. Box 13407, Ogden, UT 84412-3407. The runners will pick up their packets and any pre-registration stuff will be done that morning from 7am - 7:45. Then the run will begin at 8am, following the run will also be a silent auction.

The registration donation is $30 per person, however you can register in advance for only $20. A registration form can be downloaded from Hayden's web page - http://www.familyforever.com/Hayden

Benefit Concert and Auction

Monday, July 19, 2010 at 6:00pm
The Layton Amphitheatre, Layton, UT

 

The concert will feature Dallyn Vail Bayles, Mercy River, Paul Cardall & Jessie Clark Funk.

In the auction we have some rare, unique and collectible Utah Jazz Memorabilia including autographed shoes from Kyle Korver and Andrei Kirilenko. There will be many unique and affordable gifts from local boutiques, and local University apparel.

Doors open at 6:00 for the Silent Auction and the show starts at 7:00 PM.

You can guarantee yourself a seat by purchasing your tickets in advance at the following link:

http://www.familyforever.com/hayden