Olivia Grace & Scarlett Rose
...a miracle journey!!!
Tuesday, February 2, 2016
Catching up...
Wednesday, September 3, 2014
A great week with no IV's.
Tuesday, June 24, 2014
Things have been somewhat the same...
Wednesday, June 11, 2014
Still able to enjoy the stay at home.
Thursday, May 15, 2014
Updates...
Wednesday, May 7, 2014
The biopsy result.
Friday, May 2, 2014
The biopsy procedure.
Thursday, May 1, 2014
... need some love.
Wednesday, April 30, 2014
Home at last.
Tuesday, April 29, 2014
Still in the hospital...
Saturday, April 26, 2014
Admitted again.
Friday, April 25, 2014
Today's procedure.
Wednesday, April 16, 2014
Let HIS will be done....
Tuesday, April 15, 2014
Back in the hospital.
Saturday, April 12, 2014
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, April 7, 2014
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...
Sunday, April 6, 2014
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 :)
Saturday, April 5, 2014
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 :).
Friday, April 4, 2014
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.
Thursday, April 3, 2014
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.
Tuesday, April 1, 2014
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..."
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