Cantilina Chronicles: Craziness, Chaos, and Occasional Class: Safely in Philly with Lilly

Thursday, February 3, 2011

Safely in Philly with Lilly

It has been quite a day--travel days always are--but Lilly and I are safely in Philly, hanging out in the playroom of the Ronald McDonald House after a lovely Chinese New Year's dinner provided by volunteers here. I am so grateful for the RMcDH! Tom is still en route as I type, after his flight out of Atlanta was cancelled. Thankfully, he is able to make it in late tonight.

Tomorrow will be an early and full morning, and Lilly starts fasting as of 11pm tonight. Tomorrow begins with a consult in anesthesia, followed by a consult with Dr. Campbell, and then an MRI under general anesthesia. The caveat is Lilly's nasty lingering cough...they may opt to postpone the MRI if the are concerned about her cough and breathing. We shall see in the morning.

I have to mention that we have the most wonderful friends! Lilly has been showered with love, travel toys, snacks, cuddly plush toys, crayons, and so many other thoughtful and sweet tokens of love. We are truly blessed.

Meanwhile, Nana is caring for Anna whose tummy continues to ail her...hoping that both physically and emotionally she is feeling perky again soon. I suspect that, despite our efforts to keep life as normal as possible, she is anxious.

Nana managed to troubleshoot several tv and computer issues on her own today--GO NANA! That will be an even bigger challenge than illnesses I suspect.

Jared is rolling along just fine, happy as longas he still gets to see his friends and someone feeds him.

Thanks for all the prayers being offered for Lilly! And thanks for reading.

Jared appears

1 comment:

Billy MooreFebruary 3, 2011 at 5:57 PM
We are praying for you all!!

Love,
Mr. Billy and Mrs. Holly
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Lilly's Medical Care At A Glance

13 May, 2019: Hardware Removal Surgery (21st total sugery) at CHOP. Discharge 15 May 2019.
30 October, 2018: 15th Expansion Surgery, (20th total surgery) at CHOP. Discharge 31 October.
17 January, 2018: 14th Expansion Surgery (19th total surgery) at CHOP.
11 September 2017: 13th Expansion Surgery at CHOP. Discharge 12 September.
10 May 2017: Emergency wound debridement and muscle flap procedure to address an incision from her previous (January) surgery that had trouble healing and ultimately opened back up to expose her hardware.
25 January 2017: 12th expansion surgery. Revision of left rod. Discharge 26 January.
28 July, 2016: 11th Expansion Surgery at CHOP
6 January, 2016: 10th Expansion Surgery at CHOP, discharge 7 January
10 July, 2015: 9th Expansion Surgery at CHOP, discharge 11 July.
10 February, 2015: 8th Expansion Surgery at CHOP
1 September 2014: 7th Expansion Surgery at CHOP.
20 August 2014: Scheduled 7th Expansion Surgery at CHOP, rescheduled after emergencies flooded the OR.
18 March 2014: 6th Expansion Surgery at CHOP
15 October 2013: 5th Expansion Surgery at CHOP
14 May 2013: 4th Expansion surgery at CHOP, discharge on 15 May.
20 November 2012: 3rd expansion surgery at CHOP (second expansion since re-implantation).
19 November 2012: Pre-op consultations with Dr. Campbelll. Also, consult with hand surgeon Dr. Carrigan at CHOP to discuss the results of Lilly's EMG administered in October at Walter Reed.
14 August 2012: Second Expansion Surgery at CHOP (first expansion since new hardware inserted). One-night stay then discharged. Referral for EMG for right upper extremity weakness and lack of flexibility.
10 April 2012: Surgery to re-implant her rods on the left side. First time to have Isabel with us at CHOP.
25 January 2012: last dose of Cephalex. Praising God and praying she'll remain fever free.
27 December 2011: Surgery at CHOP to remove remaianing portions of left VEPTRs in the hopes of clearing any remaining bacteria. Staying on cephalex 4 more weeks. Discharged after 3 days.
17 November: blood work, chest x-rays...pointing toward bacterial infection...again. Back on cephalex.
12 November: Began fevers...yet again. Holding our breath, hoping and praying it's viral and will pass. Fevers up and down, high as 104.8, around the clock for the next 5+days.
7 November 2011: Finished last round of oral cephalex for the staphoreous infection.
24 September: discharged from CHOP on Cephalex, oral antibiotic, for 6 weeks.
21 September: surgery to address infection; lower portion of her left VEPTR device removed as suspicious site of bacteria. To be re-implanted in roughly 3 months after some weight gain.
19 September, 2011: Consult with Dr. Campbell at CHOP to review her radiology studies and discuss how to address the ongoing infection.
14 September, 2011: MRI and ultrasound at CHOP.
Early September 2011: second round of antibiotics finished, fevers returned.
17 July: first round of antibiotics finished, fevers returned. Resumed antibiotics.
15 June, 2011: Discharged for good on lenezolid (zyvox)--a potent oral antibiotic.
12 June, 2011: 6-hour discharge, then bounced right back in when oral antiibiotics weren't cutting it.
5 June, 2011: Lilly admitted to Eglin with serious post-op staph infection
17 May, 2011: 1st VEPTR Expansion Surgery at CHOP
16 May, 2011: Consult with Dr. Campbell.
8 February, 2011: Lilly's VEPTR "installation" surgery scheduled at CHOP with Dr. Campbell.
4 February, 2011: Pre-op consult with Dr. Campbell; Dynamic Lung MRI at CHOP
22 September, 2010: Spinal Cord Surgery to address Lilly's split and possibly tethered cord; preparation for her VEPTR surgery at a later day.
21 September, 2010: Scheduled CT Scan with General Anasthesia; pre-op consult with Dr. Oakes
8 September, 2010: urodynamics test and renal sonogram at Children's of Alabama
24 August, 2010: Consult with Dr. Oakes, pediatric neurosurgeon at Alabama Children's Hospital in Birmingham, to address a possible tethered spinal cord. We need to make sure it is safe to proceed with Lilly's VEPTR procedure to straighten her spin.
4 August, 2010: After more than 2 months of phone calls and e-mails to have CHOP send ALL of Lilly's medical documentation to Dr. Oakes in Birmingham, an e-mail from Tom finally was successful in getting Dr. Campbell's last note on Lilly explaining why he wants her to see the neurosurgeon.
31 May 2010: Followup phone call from Dr. Campbell regarding Lilly's radiology studies: he wants her to see a pediatric neurosurgeon prior to performing her VEPTR surgery to ensure her spine-straightening surgery doesn't harm her spinal cord. For more info on the VEPTR: www.veptr.com
March2010: MRI, CT studies, Pulmonary Functino Testing, CHOP
January, 2010: Consult with CHOP anaesthesiology and pulmonology
December 2009: Consult with CHOP General Surgery
December 2009: Initial consult with Dr. Campbell, Children's Hospital of Philadelphia (CHOP)
Fall 2009: Followup with Ortho in Pensacola
Spring 2009: Initial Consult with Dr. Stanton, pediatric orthopedist in Pensacola

Adoption Timeline to Isabel, 2011-2012

25 February: Depart Guangzhou, return home that evening, exhausted!
24 February: Receive Isabel's Immigrant Visa
23 February: CA
14 February: Adoption Finalized--she's really ours!
13 February: Receive Isabel Faith Huanya!
12 February: Depart for Zhengzhou, Henan
11 February: Arrive in Beijing, join our travel group.
10 February: Depart for Beijing
23 January 2012: TA (Happy Birthday to me and Happy Chinese New Year of the Dragon!)
27 December 2011: Article 5
12 December 2011: NVC Case # and Paperwork to Guangzhou
1 December 2011: I800 Provisional Approval
16 November 2011: I800 Paperwork Received at USCIS
16 November 2011: I800 Supplement 3 received at USCIS
14 November 2011: I800 Supplement 3 with Homestudy Update mailed to USCIS
1 November 2011: LOA! (happy national adoption month!)
19 September 2011: LID
9 September 2011: DTC
2 August: I-797 Received
2 July, 2011: Fingerprints taken at New Orleans
20 May, 2011: home study completed
18 April: application approved at CCAI
14 April, 2011: Letter of Intent to Adopt Isabel submtitted.