Hello to all Leon Family fans! We have been so busy the past few months and I have alot of updating to do! In advance I have to warn all readers that I dont have my laptop with me and I am blogging on my touch screen tablet and there may be lots of misspelled words!
Last time I blogged I posted info about the Ryan House Community Breakfast at the AZ Biltmore. It was a great turnout and I adm glad I was able to attend and glad to share William's story and show our community how important and how very dear Ryan House is to our family. Check out www.ryanhouse.org for information on the wonderful Ryan House.
February 2011-
William and I stayed at Ryan House Feb 22-25 so I could attend a 3 day Initiative for Pediatric Palliative Care Retreat- IPPC organization www.ippcweb.org. This was a learning retreat for all diciplines caring for children with life limiting conditions. It was an experience that I am so lucky to have been involved in. Learning together with parents of fragile children and clinicians ranging from physicians to nurses to social workers to child life specialists to chaplains. We all got together and learned from eachother- learned how we can BETTER serve and care for children and families caring for children living with life threatening medical conditions. I was invited to go by the Staff of Ryan House. I was able to meet some really great mothers going though similar medical issues with thier children. It was great bonding with other mothers who I could relate to.
March 2011-
•We had an ok and very busy month of March. William had trouble with his allergies and asthma starting on the 1st of March. He had to start lung steroids and pnemonia previnitive antiobiotics on the 10th after seeing Dr. Drewek with pulmonology. On the 16th we consulted with Dr. Leigh McGill to touch base on Willie's hypospadious repair reccomendations. Dr. McGill informed me that he is no longer doing difficult hypospadious repairs and gave me the information to the PCH Urology group and I have chosen to consult with Dr. Michael Ritchie. (we have not seen Dr. Ritchie yet!)
•On March 22 william and I checked into PCH at 8:30am for a Cardiac Catheterization. William was intubated at 11am, cardiac cath procedure from 11am-12pm, and extubated in the cath lab at 12pm (we expected William would need to stay on the vent a few hours and have to come off the vent in the PICU.), went to PACU for post procedure recovery where we thought we would be admitting into the PICU from there for a 23 hour post procedure monitoring since William is so fragile. In the PACU recovering unit, Willie was doing so well that after 6 hours of observation he was doing so well we were able to discharge that evening at 7pm after William's site of the cath was completly clotted off. I was so happy! My boy was doing so well and has gotten so strong and was able to recover from the procedure and anesthesia so much quicker than expected. What a Fighter Man!
•On March 25th we met with CardioThoracic Surgeon Dr. Jefrey Pearl for Isabell and her vascular ring. We made a surgical plan for her Vascular Ring repair and scheduled cardiac surgery for April 18, 2011.
•On March 31st Isabell had a sedated hearing test called a Sedated ABR and we confirmed that she has mild to moderate hearing loss and she is a candidate for hearing aids.
After the sedated ABR I was so sad for my Isabell because it was at that point we confirmed she wasnt hearing well. I just hated hearing the news that my sweet little girl wasnt hearing well and on top of that my husband and I were preparing ourselves for her cardiac surgery. This was a very stressful and fragile time for us and having my husband working out of state was incredibly trying and difficult for us as parents of 2 very fragile and special kiddos. We hate being apart from eachother especially when our kids are sick and needing so much medical attention. But are so proud of ourselves because we know we are great parents to our amazing kiddos and we provide the very best for them. I am incredibly proud of my husband for being the sole provider for us and I am amazed how he is such a great husband, father, provider and backbone of our little family. I couldnt do this without him. Although he has been working out of state for over a year he IS very much my children and I's strongest support system backed by the rest of our wonderful family who have been so amazing to us during lifes trying and fragile times. Times that we need support our wonderful family step up to the plate without asking and HELP.
April 2011
•On the 6th Isabell had a routiene teeth cleaning at the dentist and she did great! She was such a big girl.
•On the 11th we had our first meeting with MGA home healthcare and was admitted onto service ...for the first time ever we will have a home health nurse in our home for 32 hours a week to help care for William!! Also on this day Willie was still having allergy and asthma problems and we had to increase his lung steroid dosage... We were trying to ween him off :(
•On the 12th I had a meeting with Isabells phychologist, teacher and therapists for a kindergarten transition meeting!! I have enrolled her into the Tempe Elementary SMILES program which is a special kindergarten program we all think Isabell will benefit from especially with her hearing impairment and overall devolepmental delays.
•On the 13th We went to PCH audiology dept to order hearing aids and make ear molds for Isabell! Also on this day William and I followed up with his plastic surgeon to talk about cleft pallet repair. We decided to hold off on repair until William has full head control possibly summer 2012 since William is progressing so well. It is a huge airway risk to do repair now.
•On the 14th both kiddos seen Dr. Cassidy, opthomologist for the first time. Isabell is nearsighted -1.25 in her right eye and -.75 in the left and her left eye is completly out of focus so she wears glasses full time now. William is terribly nearsighted at -10.25 in each eye and his left eye wonders and he has 2 clogged tear ducts. He wears glasses full time now and will have an eye procudure for the clogged tear ducts at PCH on June 3.
•On the 15 I had to take Isabell tp PCH for a 2 hour pre-op appointment for labs, & X-Rays and we also took our first ever official tour of PCH.
Richie came home on the 15th to be home for the week of our Isabells cardiac surgery.
•On Sunday the 17th we took William to Ryan House for the week so he could be cared for by the BEST and spoiled rotten!
•On the 18th SURGERY DAY FOR ISABELL! We had to be to PCH at 5:30am. We woke her up and left her jammies at 5am we grabbed a blankie and Richie had the Tahoe loaded with our stuff for our week at PCH. Richie and I were feeling nervous and anxious for the day to get over with already! When we got to PCH we checked in and waited for 7:30 am to roll around so she could go to the OR. In order to help Isabell relax and not have any intence seperation anxiety from mommy to the nursing staff we gave her a dose of Atavan to slightly sedate and relax her. It was funny to see her so silly from the Atavan. She was laughing and slurring her words and was very relaxed. When we wheeled her down the hallway to the OR she was such a big brave girl and didnt cry! Richie and I were so nervous to let her go into the OR for her cardiac surgery!
After the surgery which took about 2 hours the surgeon met with us in the PICU family center to give us an update that everything went very well in the OR, The anestheologist had already extubated her and it would just be a little longer while they got isabell set up in her ICU bed and we could finially see her. We waited for a little while and I walked over to the ICU doors and the nursing staff let us in. I immediatly had tears flowing- Isabell was doing very well but was hooked up to lots of stuff and was very sedated. She had a right side IntraJugular IV line, an Arterial IV line in her right arm and 2 regular IV's one in her left hand and one in her foot. She was hooked up to cardiac monitoring, a pulse oxcimiter, and had a chest tube to drain lymphatic drainage from her left lung which was deflated and moved out of the way for the surgery then re-inflated after proceudre. It is very common to have a chest tube or tubes after cardiac surgery.
The rest of the week went well and Isabell had super human healing powers and recovered so well. She was walking around Tuesday, the day after surgery and eating and playing. We also ended up having a very stressful series of events occur that evening. Unexpectedly that day we were told that Isabell was being transfered out of the PICU and to the monitoring unit here at PCH. A nurse or a staff member of the cardiac ICU was supposed to transport Isabell to the 4th floor at 3:30pm. Her nurse was assigned to another patient and she rushed into Isabells PICU room, unhooked all of her cardiac monitoring and quickly rushed away to her new patient. At 6pm I recieved a phone call from my husband stating that they were still sitting in the PICU and nobody had even checked on them or transported Izzy to the 4th floor. I was at Ryan House with William trying to prepare dinner for us to take back to PCH and play with Willie. So I called the PICU charge nurse by the name of Lauren, CS for PCH PICU Pod E. I explaimed the situation and I was very disturbed that isabell had gone so long without care, monitoring etc in the PICU so I was demanding an explaination from Lauren as to why my daughter was just left alone in the ICU going on several hours. She proceded to undermine my husband and rudely asked me why he didnt push the call light for the nurse to check on her and notify someone she was there. I was so pissed off and I told her its not his freaking job to do.that and that my daughter was in the Pediatric Intensive Care Unit at PCH and that a half way decent charge nurse would have kept track of her patients better and to go in the room and explain to my husband what in the hell is going on. So Lauren sent a PICU PCT into Isabells room to promptly transport Izzy to fourth floor without offering my husband an explaination as to what was going on. I was even more pissed off then! So I called Lauren back at 7pm to ask her what and why she didnt talk to my husband. She rudely asked Me what my concern was And I very aggressivly explained to her that my freaking concern is that my daughter had been un-cared for in the PICU for over 2 hours and she just had cardiac surgery and that things like that Do Not happen in the PICU and charge nurses Do Not loose track of their patients etc etc etc and I told her she was a terrible charge nurse and that I was embarrased for PCH to have such a nurse in charge of the cardiac ICU and I did not approove of nor appreciate the way she handled this case and I told her im taking her actions to the administration of PCH. And I did. I filled out a 5 page incident report, and had a meeting with Laurens boss. That night when isabell was trying to get settled into her new room on the fourth floor her pain spiked and she became distressed and her oxygen levels dropped to 85-88% & she needed oxygen for a little while and needed a coctail of morphine, atavan and tylenol for her pain and discomfort. I strongly believe that she would have not become distressed if she had been properly cared for and monitored in the PICU. When the distress happened we had to play catch up and get her stabalized. She ended up having a good night. The third day after surgery Izzy was playing in the playroom at PCH and roaming the halls-chest tube, monitors and all! Then at around 3:30pm on that Wednesday afternoon Dr. Pearls NP came in and removed Izzys chest tube and then she was a free woman except for the monitor she was still hooked up to and 1 IV line incase we needed IV access. She did so well, Richie and I were so proud of how brave she was during her entire hospitalization. She never cried once, with the exception of whining a little bit when she was scared or in pain.
We picked up William from Ryan House on Thursday the 21st after Isabell was discharged and he had a GREAT week. It was great to get home! We had a long four days at PCH.
May 2011
•On May 3rd our little William reached his 18 month birthday! What an amazing little guy!
•On May 5th Isabell got her Pink Hearing Aids!!! What a world of difference I seen in her the very second we put the hearing aids on her. She can hear now!
•On Saturday the 7th William woke up at 2am vomiting and had a fever of 105°. We immediatly went to the PCH ED and we were of course admitted. Willie was dehydrated. His labs showed that his sodium was very low and his pottassium was very high. With Williams complexity, this dehydration really has him down and is taking him a while to recover.
•On Tuesday the 10th was the Ryan House Community Breakfast event and Shannon Rummel my mom and I attended along with over 600 attendees! What a great breakfast event. Again, learn about Ryan House at www.ryanhouse.org
• On the 12th Isabell had a follow up with her cardiologist and he gave her two thumbs up! Dr. Ellsworth will see her once more in six months then he vb plans on sighning off! She is fine from.a cardiac standpoint now. She will always have a heart defect but it has successfully been surgically repaired! So exciting!
•Today is the 20th and we are still at PCH with our William still recieving much needed treatment and being closly monitored. His brain, pituatary gland, kidney and adrenals have suffered from a couple things-being on lung steroids for 2 months straight and the dehydration. So we had to call in another specialist to be a part of our medical team... We now have an Endocrinologist on our team to monitor Willie's adrenals. Nephrology, pulmonology, endocrinology, G.I. And our pediatric surgeon have been active particapants during this hospitalization. We have 16 physicians following Willies medical case for all of his complexity. He is a special one!!!
Well I started writing this blog at 8am. It is now 6pm and im finially finished. Its been a busy day and I only have little bits of time to blog. If I had my laptop it would have been easier!!
I will try and update again sooner than later!
No comments:
Post a Comment