Richardson News: Happy Easter ! 04-12-2009

Dear Friends:

We are praising God and waiting on Him at the same time.

Joseph’s 4th open heart surgery was cancelled by Dr Frank Hanley’s office (the surgeon) without a single reason given to us as to why. The myriad of problems we have had with the surgeon, his staff and the hospital at Lucile Packard Children’s Hospital over the past 3 months has been nothing less than frightening. We had communication problems, errors in scheduling, great lack of communication, refusal of the surgeon’s staff to page him for us, and many unreturned phone calls to say the least. We finally had to resort to calling patient relations and the social worker over and over and over again with our complaints. We had questions regarding our son’s care, questions regarding two procedures scheduled under anesthesia less than 24 hours apart with a third under anesthesia only a week later, and never received one call from the surgeon once we got home in October 2008. Even when we asked to have him paged, regardless of whether he was in or not that day, they still refused. After no written confirmation of anything, we left messages with patient relations and resorted to emails notifying the surgeon and hospital that we wanted to verify that all tests and procedures were cancelled. We did not want to find out later that we were charged for not showing up to something. We would not be rescheduling any of them nor rescheduling any surgical procedure with Dr Frank Hanley or Lucile Packard Children’s Hospital. It has been a very angering and frustrating journey. Two weeks before we were to leave, we were called and told all the dates were changed which then required us to change all of our travel dates. We were informed that we now had to leave in a week, and after 3 months of trying to get written confirmations, we still had nothing in writing. The hospital also kept telling us that nothing was in the computer. We told the hospital, Dr and office, which phone to call us on. Except for patient relations and the social worker, no one called us on the correct phone.
The sad thing is when Joseph was in the hospital itself for his surgery in October, we had no complaints in the ICU or step-down unit as far as the nurses were concerned for the most part. It’s just the ancillary services, clinics, hospital scheduling and primarily the staff at Dr Hanley’s office was so bad in our opinion that we felt it unsafe to proceed. Even after the social worker asked Dr Hanley’s office to page him, we never once received a phone call or message from him. It has become my personal opinion that the communication is so bad with Dr Frank Hanley’s office in particular that it would put our son in danger and possibly endanger his life further if we continued. I myself will never recommend Dr Frank Hanley or Lucile Packard Children’s Hospital for any services based on my own personal experience. Medical care should be better. Our concerns for his medical care were never addressed.

In our deepened concern for our son Joseph, who we know needs several more open heart surgeries in the next year or so and then every 5 years or so for life, I started researching in earnest to find a well-qualified cardiothoracic surgeon who had previously and successfully performed the double switch procedure and banding procedures. We were disappointed that Loma Linda near us did not have one. We were relieved, however, to learn that Dr Vaugh Starns (the chief of cardiothoracic surgery) at Children’s Hospital of Los Angeles is well qualified, and has successfully done this procedure a number of times before. Dr Starns was willing to consult with us and take Joseph’s case. We called on a Friday, and he rearranged his schedule to meet with us on the following Monday. We are proceeding with Dr Starns, and Joseph will be having testing before any surgery to see how his heart is doing today and what exactly will need to be done in surgery. He will be having an echocardiogram again as well as an EKG, and probably a heart cath and possibly CT scan of his heart. Our next appointment is Monday 04-13-2009. We expect the surgery may be scheduled in the next 2 to 3 weeks, but it depends on the results of the testing first.

Until all this happened, we had never heard of Dr Starns. When we had asked our current cardiologists office more than two times if there was anyone closer than Dr Hanley or LPCH, we were told not on the West Coast. Again, it was very frustrating. We were told by Dr. Starns, who agreed, that there were not too many surgeons who can do this particular surgery. We just didn’t know he was an option, but I am so glad we know now. We are also glad to not have to worry about where to stay in hotels or how to pay for it. Joseph overall does get tired with heavier activity, and has to pause a while before getting back into it. Overall though, he is doing okay. He does have pain at the site of his pacemaker and occasional heart pain, so those are always concerning. The testing will tell us more and show if there possibly is scarring at the site of his pacemaker from the original surgery, which could cause its own problems. As for school, Joseph is making progress with his letters and remembers 9 to 11 of them now. He has also learned same and different. We were also very pleased to see him engaging in group imaginative play with his brothers and sisters. Most of you know, Joseph is delayed, so this is an excellent sign of progress. Joseph enjoys playing house and horses with the Little People house, barn, people and animals.

Michael has been holding his own as well with not too many new bruises, is very careful in the sun, and careful to use the SPF 70 prescribed and take all his medication. Michael has become very faithful at his exercises for his Cerebral Palsy, which we are very excited to say. He has been promoted to the next grade in four of his classes as well.

Gabriela is growing into such a tall slender young lady, so much so that now many of her shorts and pants are too big around the waist and to short in the legs as she continues to get taller. She has had to start wearing belts regularly to keep her pants up. Turning 11 this year, I have no doubt that Gabriela will soon be taller than myself. She is already just past my nose. Gabriela is making really good progress with her reading as well and has not needed quite so much medication for her Bipolar and ADHD this year.

Joshua loves building and wants to be an engineer when he grows up to build cars, machines, and mechanical things. I would not be surprised in the slightest if he invented a new flying vehicle or spaceship of some sort. Joshua is our best eater and can match even my husband’s appetite, though he is so slender you would never guess it.

Shawna’s favorite games are playing house, playing doctor, and playing kitchen and party. She has decided she wants to get married and be a mommy when she is all grown up. She says that she will have long hair as a mommy. She doesn’t want her bangs cut, so we have her wearing headbands as much as we can as it grows long like the rest of her hair. She is also enjoying playing with her dollies. Shawna learned how to open the front door with two hands, something that was until today just too bit of a challenge. Our front door takes an extra tug to get open. I loved the most her blowing me kisses as she went outside to play with the rest of the kids in the backyard.

The adoption has been approved FINALLY !!! We anxiously wait for a court date to be scheduled, hopefully soon, hopefully before Joseph’s next re-scheduled surgery. We were disappointed that the attorney mailed the papers into the court instead of walking them in to court, which would have sped up receiving a court date. Now, we have to wait to receive the court date in the mail hopefully in the next 2 to 4 weeks.

We have officially opened our school Academy of the Possible. Please check out our website at www.academyofthepossible.com and take a look. We are always open to comments and critiques to help us grow. We are praying towards incorporating and choosing officers for our school. Please join us in prayer that the Lord leads us to the right people. We are looking for partners in our vision, and waiting for God’s provision and blessings for resources to grow. We expect to be able to add daycare services, CPR and First Aid classes this year to our list of courses. I also recently completed CA Child Care CPR and First Aid certification. Growing a business is often about celebrating the small victories, so we celebrated having our business cards this month.

We are continuing to pray for God’s financial favor to help us keep going. It has been a struggle.

Please consider a donation !

My dearest sister Kathy and their family was so kind. We were excited to receive Easter gifts in the mail for the kids. We also received brand new beanie babies for each of the kids from a nice lady in our community. It made for a wonderful Easter. I had fun making up the baskets with the gifts we received, and the candy we were able to buy. Each of the kids also got to hunt for Easter eggs and were all delighted to find pennies in them.

Dear Lord, we pray that you pour out your financial favor on our friends and their families and their loved ones. We praise you and thank you for leading us to a capable surgeon here in Southern California for our son. We praise you for the approval of the adoption, and that you allow us Lord to be instruments and care for all five of these delightful children. We praise you for your provision this Easter. We praise you Lord for helping us. We trust you Lord with all our lives and ask that you help us to see you more clearly, follow you nearly and never depart from your ways. In Jesus name, we pray that you touch our world. Amen.

Have a very Happy Easter ! Praise God for Christ is Risen !

We love you all,
The Richardson’s
Scott, Jennifer, Michael, Gabriela, Joseph, Joshua, and Shawna