Post-op

4/18/12
God is amazing! Bella is up tonight and eating saltine crackers and chicken noodle soup. Our baby girl has been through so much in the past 13 days! We thank God, Dr. Loudon, P.A: Albert and all of the doctors, nurses, assistants and prayer warriors who helped make Bella's surgery a success! Dr. Loudon and Dr. Albert came to visit us in PICU tonight and gave such great news. To everyones surprise, There was no tumor to biopsy! We are sooooo excited and thankful! There was a new finding that was resected for biopsy which was quite a surprise to all in the OR. When she was opened up it looked like snow had sprinkled her brain. Dr. Loudon scraped off about 30 pieces of "snow". (there was so much more). It appears that the snow could be calcium deposits. We aren't sure why its there and what is causing it. This is being sent to the Mayo clinic and we hope to receive the results in a week.

Some additional information about Bella and the surgery is when Bella opened her eyes in recovery, her good eye was obviously affected from the surgery. Her lid only opens maybe halfway and the pupil is extremely dilated. When we hold fingers up. She can see but she doesn't appear to have much muscle control of this eye. Today her eyes were not moving together. Of course we are hoping and praying this is temporary. Time will tell. We ask if you could continue to keep us in your prayers for Bella's recovery of her brain biopsy as well as her eyes! As additional information comes forth, we will continue to update you all. On Wednesday we will probably limit her visitors. If you are interested in visiting, please FB message me or text me. We want to see how she is feeling but most importantly, she needs the rest to recover. Blessings to you all!

Pre-Op info

Today has been a whirlwind! Bella was so much better today! Her spirits were better, she was smiling and wanting to do her arts and crafts. She had a visit from the beautiful Dr. Ruth who gave her one of her wonderful foot messages to tackle any nausea and anxiety! We sat and painted with acrylic paints while watching the movie Soul Surfer! It was our first time to see this movie! Bella was hooked immediately and after only watching (or actually hearing my narration of what was going on since our tv is so far away. Bella immediately said we had to buy the movie. I think she could definitely relate to Bethany the Surfer who lost her arm. we were able to meet with Dr. Loudon to ask any last minute questions prior to Bella's surgery. Bella will get a biopsy in the morning of the new area that is showing up on her MRI. If Dr. Loudon can take any additional tumor, he will, if he can do it safely otherwise, we will deal with the tumor after the biopsy comes back ( possibly with gamma knife radiation). Tonight we had another MRI (the contrast hurt a lot tonight. The contrast was put into her arm I.V. After the I.v., Bella had to have her port changed out, her arm I.V. Taken out and a blood transfusion. We are now waiting for two bags of platelets and there is an extra bag of platelets that will be in the O.R. For an emergency. Bella will be transported down to the O.R at 6:30 a.m. Tonight has been difficult with all that is going on with Bella but also what has been going on next door to us. A poor family lost their daughter tonight. All day long the friends and family have been hanging around the halls. Probably 30-40 people just waiting for their loved one to take her last breath. To see all the tears and he's all the screams and cries has been absolutely gut wrenching. Praying for their family tonight. The young girl passed away about an hour ago. they is still so much activity going on and I suspect it could be like this through the night.

I have received so many calls, texts, emails, messages etc. I will try to get to them soon. Thank you so much for all the support and wonderful prayers. Please pray for us tonight and tomorrow for Bella's surgery! A surgery is so scary especially when it's with your child, especially when it's with your child's brain. We pray for guidance for Dr. Louden and his team, we pray for no seizures, hemorrhaging, or strokes and of course we hope Bella doesn't lose any of her abilities with the surgery. Thank your! We will try to update when we hear anything.  (~Val aka Mommy)

Looking up!

Today things started looking up! Bella hasn't had a fever at all today! The doctor came in today and let us know about Bella's bladder issues. It is just swelling in the lining of her bladder from infection. I honestly am so confused right now from complete lack of sleep but her pain is not near as bad as it was last night. She is on a self administering pain machine. As soon as she feels pain, she presses a button and boom - some medicine goes into her line. Since she is a kid, and buttons are soooooo much fun to press, it is limited to one button press once an hour. The doctor said her lungs don't appear to be as bad as it was initially. She is quite sure she had a viral infection in her lungs. She still coughs which creates lots of pain for her raw little throat. Also her oxygen is a little low at times therefore she is on oxygen at times at night and in the day. Isabella improved quite a bit today! We hope to make more great strides tomorrow! She perked up with our dear friend Irene's visit today. Our first visit in a few days. Bella can't really laugh since it causes her to cough. The pain is severe enough to immediately send her into tears. So the visit was very quiet and low key. Bella had a surprise visit today from her favorite therapy dog, the gorgeous Nellie!!!! :) Sam took pictures with his phone so I have to make sure the picture gets on here! I am at home tonight with my sweet little boy tonight! I better get some sleep! We didn't have time to get through all the messages today. So many doctors, nurses constantly in the room. Hopefully tomorrow we can spend more time viewing everything!

Made it through all the procedures!

Hi all, Bella got through her day of procedures. More to possibly come. Although she wasn't her normal crazy, perky self, her spirits did improve today. Her anxiety wasn't as bad today either. Results have come back from the CT scan of her abdomen area. I think we have explained in previous posts that last night she started feeling severe discomfort when urinating as well as blood in her urine. She was negative for UTI therefore she had the CT scan today. We haven't actually spoken to a doctor yet since we just received the results within the last hour so we (with the help of our wonderful night nurse) are trying to figure out the crazy medical language on the report we received. It appears that she has thickening in her bladder lining as well as one of the following: cystitis, a hematoma, or a abscess in her bladder wall. More details to come when the doctor reviews the results in tomorrow. I am sure this means she will be getting an MRI tomorrow or Friday as well. Tonight she was put on TPA which is a self administering pain medication. She gets to press a button when she feels that she needs medication. Hopefully this helps with the pain she is getting when voiding. Thank you for all of the prayers and FB Love!! Bella's mommy -Val

Bronchoscopy & CT scans today

4/11/12


Update#1
Bella just went under. Should be now 15-20 minutes for the bronchoscopy followed by about 2 hours of recovery in PICU. Thank you for your ongoing prayers. Bella is in much discomfort in her throat and when she pees. From this procedure, we understand her throat will hurt more and will be coughing more. Please pray for her comfort and healing! Thank you all so much. Results from the bronchoscopy come in about 1 day and additional results from more expansive panels in 3 days or so...oops, she's ready! That's fast!


Update #2
Bella had another CT scan tonight. This one was for her bladder and kidneys. She had to Drink contrast (not fun). She is in quite a bit of pain when voiding and her back is hurting her too. We should find out results on the CT scan sometime tonight. Please pray! She has been through so much. Depending on results tonight, she may have to go under once again for an MRI of her kidneys. Tonight her spirits are slowly lifting. We are hoping for doggie therapy tomorrow! She desperately misses her cats at home. Her temperature was down today! Continued thank your to everyone that has involved themselves in our lives. We can't thank you enough

It's a fungus!

Good morning all.  Thank you again for your ongoing prayers and love...it is what sustains us and helps us persevere to NEGU.

As you may have gathered, yesterday was another rough day.  Nearly any change, new med or procedure stresses Bella out.  Last time I spoke with Mommy, Bella finally was getting some sound sleep which I'm hoping lasted through the night.

Tests for the flu came back negative. A CT Scan of the chest area was ordered based upon the x-rays taken a couple days ago.  The CT Scan revealed some nodules of a fungus growing in Bella's lungs.  The good news is that she's been on an anti-fungal medicine since Sunday.

Today, Bella will be moved up to PICU (Pediatric Intensive Care Unit) for a brief, 15 minute procedure.  An anesthesiologist will put her under for the procedure.  The fungus is a modestly serious situation as it can spread...uh, like a fungus (sorry, not trying to be funny but it just works there).  While Bella's under, the surgeon will send tools via a tube down Bella's throat to extract a sample of one of the nodules for analysis.  Based upon that analysis, they'll be able to more directly treat the fungus.

More good news: Bella's numbers are coming back up so she will be able to fight this infection (and others) more effectively with her body's natural immunities.  Nurses have told us that this is the absolute best way and they say, based upon their observations of other kids, it looks like a miracle when it happens!  We can't wait for that moment!

Daddy's taking work off this morning to be there through the procedure and for a family visit with CHOC's psych guy...Dr. DiPinto...we like him - he's funny, compassionate and skilled with his craft.

That's the update for today.  We can't thank you enough for your ongoing support through prayers to our Lord and savior and for the vibes of love you're sending through Bella's blog and Facebook page.

I'm sorry to say that we're still saying no to visitors at this point and likely will through the weekend.

with many thanks and blessings to you,
~Sam (Dad)

Tuesday April 10 morning update

Good morning everyone. Bella & Mommy have had a rough night. Bella's fighting something tough that comes with a very violent cough and a yo-yoing temperature and chills.  We'll be in isolation until they rule out the flu. Since she's just exhausted, we're asking that we take a break from visitors until further notice. We all miss you and are also so grateful for the visits we've had so far. We're so blessed with so many kind and loving and giving friends and family! Please continue to keep us in your prayers, especially our precious princess! With many thanks and blessings, ~ Sam