Home at last.

Olivia was finally discharged today around 5:00 pm. In order to keep her away from the hospital we have to make sure she intakes at least 2400. ML ( almost 2&1/2 L) a day. We also are to follow up for labs everyday for the rest of this week and if her numbers don't improve they will do the biopsy early next week to find out if there is any rejection. Please pray that her body heals soon & the numbers improve so she doesn't have to go through another procedure. Soooo happy to be home...

Still in the hospital...

. I'm sorry I haven't updated the blog in a couple of days. Things have been up and down with labs. The creatinine level is having a hard time dropping to the normal range so if it continues to drop with the same pace they are planning to do a biopsy of her new kidney and check if there is any rejection at this point since her new kidney has not yet shows it's full potential. The hospital environment is getting to us and yes you can say we're kind of " loosing our mind" all cooped in one room, running out of " fun" things to do. Olivia has discovered that she can use her IV pol as her scooter for around the room... It's super cute to see how this little girl will find anything to entertain herself and most of the time she has kept an amazing positive attitude giving the fact that she hasn't been able to leave the room since last Friday. As of today, we're still waiting for Livi's lab results drawn this morning and hoping that we get good numbers back. If Olivia start drinking & eating more by mouth and slows down on her outputs than the dr. Will consider her discharge since at that point we'll know that she can be managed at home without drying out her new kidney.

Admitted again.

Unfortunately Olivia was admitted again yesterday. Her body is outputting more than it can take in so to prevent damage to her new kidney she has to be hydrated with IV's 24 hrs a day. Also because her numbers have been high for a couple weeks now the dr. wants to closely monitor her so they don't miss a possible kidney rejection ( again the highest possibility of rejection happens within the first 6 months). I know they want to keep her here for a few days. We have brought plenty of crafts to do and are keeping a positive attitude through it all. ( mama has told her that this is a vacation home that we get to have sleepovers together so that has helped a lot mentally). First day went well and her labs are slowly progressing. I'll try to update it again once we hear more from her doctor.

Today's procedure.

The stent removal today was successful.Olivia was in and out of the operation room within 20 minutes. She handled the anesthesia great and we were able to come home by 11:00 am. As soon as we got home Olivia started developing high bladder discomfort and burning sensation from the earlier procedure. The pain and discomfort has increased a lot to where she is afraid to even use the bathroom due to the spasms and burning sensation that she's experiencing. After a dose of muscle relaxer,Tylenol and Benadryl she finally fell asleep but we're worried right now that she hasn't discharged her output for more than four hours. Very anxious about her labs tomorrow since they already haven't been the greatest this week ( creatinine is up to 0.83)... Peter said he wouldn't be surprised if she get admitted to the hospital again tomorrow. As of for now she is finally sleeping and I'm hoping we all can get some rest since we've been up since 3:00a.m last night.

Let HIS will be done....

After 3 days being connected to IV fluids & followed very closely by the docs, Olivia's labs and body was able to recover today. Around 11:00 am they told us that we can go home as long as the immunosuppressant level came back within the accepted range. All three of us, within minutes put our coats on, packed everything and started waiting, anxiously staring at that room until 3:00 pm when they confirmed the good news. At that moment you just want to run, never turn your head back like you're being chased and don't want to be caught because you might be "punished" again haha. I know it is a silly analogy but I feel like that sometimes... Run when you can, especially if it is to go home :). Once we got home Olivia ran around the living room maybe 15 times yelling and screaming:" I'm freeeee...I Looooove beeeing hoooommmmeee... Than she would roll on the carpet & kiss the floor like she had been gone for centuries. She sure is a character and her happy spirit is very inspiring to us. She has challenged Peter and I to be better people and think of positive outcomes instead of being angry at our situation. She has shown to us that you shouldn't take anything for granted and to make sure we enjoy today because tomorrow is unknown. She has shown us that waking up angry doesn't resolve issues but saying " I Love You" with a big smile can make somebody's day. We know that GOD has given Olivia to us for a bigger purpose because we have seen how many lives she has already touched in her 5 short years. It is amazing to hear from people that don't even know us that just by talking to Olivia and seeing that happy glow in her eyes puts them in a happy mood... Today was another one of those days to where GOD had used Olivia's life for a bigger purpose. We were told that after the med. incident on Monday, her doctors had requested an urgent meeting with the VP of the hospital. After two long meetings, the children's hospital has finally a new system that will no longer override the doctors orders to the pharmacy. They said that because of Olivia they have saved so many children & families having to go through our same problem that the hospital has been dealing with for a long time. Hearing those words at that moment just brought tears to my eyes. All the pain and heartache that we went through just evaporated from my soul and all I could think is..." Let His will be done". No matter how much it hurts to see Olivia deal with all that she has been since she was conceived we know that GOD has His arms around her & HE will always and Forever protect her. ( all I could think after that conversation was the pain we felt inside seeing Olivia in the hospital, even tho she was being treated like a little princess & getting the best care we could've asked for... But yet we couldn't bear seeing her there... Can you imagine at what GOD felt when HE saw HIS only SON, treated like a criminal and being hung on that cross............................We are all humans and if GOD could forgive us after killing our only Salvation than we need at least to try to follow his example...)

Back in the hospital.

After somewhat a "better" couple of days we noticed this weekend that Olivia didn't seem like herself. She was showing a lot of discomfort, pain & tiredness mostly Saturday and Sunday during the day. Monday morning we went to the hospital as usual to get her labs and as we're waiting for the results I decided to call the pharmacy to refill her immunosuppressant med since it was increased drastically this past Friday. After I got to speak to the RX I was confused at the dose that they were quoting to what I was told to give her this weekend. Like a loud thunder the idea of something being wrong with this prescription hit me. You know when u see a lightening and you start counting to see how close the thunder will hit to further find out what the damages are going to be.... I start panicking, hung up on the representative and start running around the hallway asking the nurses to see Livi's doctor. She came right away and yes, my fear was real... The counting went like this: 1-2-3, than another lightening...1-2,and than...ONE. For the past four days,Olivia was prescribed the wrong dose because the pharmacy had sent us a different concentration to what the dr. had prescribed. She had been taking, double the dose, on double the concentration of this very toxic medicine. I couldn't even breath from the panic. Peter being the calmer one tried to ease my mind by saying that at least we caught it sooner than later but my panic couldn't allow my thoughts to calm down nor my body to stop shaking... After a couple of hours we got the lab results with the phone call of having to re-admit Olivia in the hospital,again. The kidney function had decreased so being so close to the transplant they had to treat this case as an " acute kidney failure". She has been on IV fluids since yesterday and that is slowly helping on bringing that function back but not fast enough for us to go home yet. It's really frustrating and hurtful to see Livi take these steps back after all those nights we've spent to make her more comfortable with the new routine :(. She doesn't seem to have much thirst today at all. We don't know if it's nausea or a bad aftertaste in her mouth due to the new meds. Either way she needs to start drinking or accepting more fluids put in her belly without trying to throw-up for the hospital to even consider discharging her. So for now, we sit in one of our old rooms, waiting... I will try to update the blog tomorrow and as always all the prayers are much needed and appreciated.

First week.

This has been a long week with a lot of sleepless nights. Olivia is having a hard time adjusting to the new meds and the fluid volume given to her by the feeding pomp at night. The lab. results have been up & down and so has been the dose increase on her meds which it's not helping her discomfort & pain throughout the night. Seeing her curled up all night crying from belly ache & begging me to stop the feeds because she is full...it has been heartbreaking. Unfortunately we can't stop the fluids because the new kidney needs that volume per day to survive the high output that her body produces. Every day I am trying to adjust her feeds and rearrange the way I give certain meds to her but it hasn't been successful until yesterday that she was finally able to sleep more comfortably from 2:00-6:30am ( the most she has slept all week). During the day she is really happy & doesn't appear to be in any pain. Her appetite has increased even tho she gets fuller with 1/4th of what she use to eat which might have to do with the space that the new kidney is taking in her abdomen/belly. It is 10:00 pm right now and she hasn't woken up and cried yet since 9:00pm so I'm praying & hoping for a restful, comfortable night for my little girl that has gone thru so much in the past couple of weeks... We are emotionally & physically drained and I personally can't take another day seeing her cry in helpless discomfort. I know GOD is looking down on us & HE has a plan & a solution. I know that HE has chosen a great nephrologist that is also working day & night to help make her life easier, I know HE has chosen amazing people in our lives to help us go thru this journey,especially Olivia. I know our GOD is amazing & HE will pick us up...

Monday updates. (10:15 pm)

At 7:30 this morning we headed to the hospital to get Olivia's labs for the first time since we brought her home on Friday. Thankfully the experience wasn't very traumatizing because she has an implanted port now above her heart and they can access it anytime for up to two years. Waiting for the lab results was nerve racking. I found myself pacing around the house and checking my phone every 2 minutes. I finally got a call back around 1:00 pm. The nurse said that most of the labs looked stable. The anti-rejection number was a little concerning to them because it had dropped from 12.0 to 5.0. (Right now they're trying to keep Olivia's numbers high in order to suppress her immune system so her body doesn't recognize the new kidney and tries to attack it ). So they want us to go up on the med. dose which will hopefully help with that. Also drawing labs every other day I feel like it can prevent an acute failure as long as it's med. related since they're adjusting everything according to the lab results. Another detail that made me nervous yesterday was the blood residue on her urine output The U.A did came back with high blood trace in it so they're sending it for more testing to another facility. As a precaution I also called the urology surgeon's office since they've put a stent in her kidney & bladder & Peter thinks it may play a role in the bleeding part. The office did confirm that if the child is very active that can move/rub & cause some bleeding. The surgery for the stent removal is scheduled on the 24-th so let's hope she won't get any infection until than. On a positive note, Olivia seems very happy during the day aside from a couple episodes of discomfort & nausea here and there. She has been able to get back on most of her daily routines & she's also getting more comfortable with the new ones ( including wearing a mask which was very challenging at first). Tomorrow is another day so I'm taking today as a great blessing & achievement to successfully do all her care at home. Soooo happy you're home baby girl. Mommy & daddy loves you...

Overwhelmed by your love...

This is only half of what she has gotten so far. Olivia has been really busy playing with all of her presents & munching on all of the snacks ( and so have we haha). I'm really anxious about tomorrow as it will be the first lab result (@8:30am) since we left the hospital on Friday. Praying for good results so she continues to be home with us and her toys :)

Home sweet home.

The first night/day back home felt great. Olivia finally got a full night of sleep. Having an all new med list & routine was a bit challenging at times but I believe we were able to get everything done as directed by her doctor. Also her body is not adjusted to the change & to the new meds. side effects ( nausea,headache & loose stool) so eating & drinking has been hard for her which makes it even harder for us to push her to eat & drink all day :(. She has to drink over 1 Liter of liquids during the day & almost 1L overnight ( thank goodness for her feeding tube because it has been a life saver). I just put her to bed right now & I'm praying for another quiet & relaxing night :).

Waiting to be discharged.

Friday. 6:00 p.m Today we've been anticipating going home & the time can't come fast enough. We're ready to start our new life. Olivia has been wearing her coat for the past 2 hrs & is really anxious to finally sleep in her own room & play with her toys. Our discharge nurse should be here within the next hour.

Special people...

These are some special people that made Olivia's stay at the hospital better... Her amazing nephrologist that has always been an advocate for her, and stayed right next to Livi during her whole surgical procedure. She is the best dr. that God could've chosen for her. Dr.Steinke always treated & cared for Olivia like she was her own child... This little girl got spoiled everyday... ( pic 2, is Kelly from Child Life which also requested to be by Olivia's side during her surgery. At the end of the procedure she shared with us that because of Olivia she now knows how to better help these kids cope with procedures & understand what they go through ... So touching.) Also I can't thank enough all the medical staff at the DeVos Children's hospital & the amazing surgeons that really change these kids life Forever

Great news.

Yesterday dr.Steinke started a going home test by substituting IV fluids with pediasure & pedialite and still manage a good kidney function... So far everything has gone as planned & the change has been successful which means... Home Tomorrow :) We're in disbelief right now, feeling so humbled & blessed by the love of our GOD to finally see the light at the end of this tunnel. The kidney toxins ( creatinine) right now is at 0.65 ( 0.3-0.5 is where they want her to be at) so we're very close in seeing the new kidney at 100% function. So for now instead of staying here & waiting for all these changes the doctors feel very confident at us taking her home & still doing every 4 hrs Vidals( blood pressure, temp, calculation of intake & output fluid amount). Also we need to bring her at the hospital everyday by 8:30 so they can make the necessary daily med changes depending from the lab results. Also as of yesterday Olivia has been walking on her own ( even tho still weak) so I believe we no longer have to take her to MaryFreeBed which most likely will be confirmed once we meet physical therapy at 2:00 pm today. Again, thank you all for everything you have done for us, especially the constant prayers that have shown over & over the power of all the believers coming together to confirm how Amazing our GOD is and how much HE loves us... Unconditionally.

Long day...

A better rest of the day.

Things started changing around 2:00pm. Olivia's output was stable enough that her nephrologist was comfortable at removing the catheter finally by 3:00 pm...Phew... She was also able to take a 2 hr nap that seemed to energize her enough to want to take 2 steps & take a ride around the floor :). That was a huge progress. Another good change was the med situation. To help with her nausea they broke the meds that were causing nausea to 4 X day instead of 2x a day. She was able to have some milk, chocolate, a couple bites of chicken & the much needed water :). Ready for bed, praying she gets some rest tonight.

Restless night...

Last night was a little rough on Olivia. She developed pain & discomfort by her catheter. It was very intense to where she couldn't even rest or lay in one position. I tried everything, from patting her clean to rinsing multiple times until 4:00am. I got scared cuz we also found blood residue on her diaper but we couldn't determine where it was coming from ( front or back). She tried to sleep from 4:30 to 6:00 until they started the morning assessment and woke her up to stand on the scale which is so challenging right now cuz she has lost the strength on her legs ( they're talking about sending her to MaryFreeBed for PT) I'm hoping she can get some rest today to make up for the night. There's nothing worse than having to tell your child:" I'm sorry honey, there is nothing mama can do to help you..."