Open Heart Surgery !

Welcome Readers to the Richardson Family News ! This is also the same post on our blog.

Our trip home was the longest ever. We tried to save time by taking the 101 south and highway 152 (which is normally a 1-2 hour drive). It took us SEVEN, yes 7, hours to get just from the 101 to the 5 freeway. It was absolutely awful. A route which we have decided to never take again for lack of any gas stations or restaurants along the way. We considered ourselves fortunate to not run out of gas, which some cars we saw pulled off to the side apparently did. To break the monotony of the drive at 0.0001 miles per hour with a million other drivers, we started photographing everyone pulled off to the side. The apparent cause was a truck fire which cal trans was cleaning up from and blocking one of the two lanes. We passed out diapers to the kids for temporary potties, and used up all our snacks and drinks in the car. We were all thrilled to finally make it across, make it to a bathroom, make it to a gas station and keep our sense of humor in it all. Oh well, so much for the time saver. After leaving at about 2 in the afternoon on Friday, we got in finally at 5:40 am this morning (Saturday), and we are doing much better after showers and everyone sleeping in until rather late.

Joseph had his first "surgery" Thursday, the MRI of his heart and brain were done under general anesthesia. He came out fine, and did not even have one episode of nausea or vomitting. The decision for him to undergo open heart surgery was made official yesterday, all the doctors caring for him agree that it gives him the best chance. Surgery is scheduled for October 2nd. Preop testing and admission will be on Wednesday October 1st. We have to leave on Monday September 29th. He will have his pulmonary banding done and receive an epicardial pacemaker at the same time. The second surgery will be 6 months after that (assuming he responds well the first surgery) will be for the first tightening of the pulmonary band. He may need a 3rd surgery for a second tightening of the pulmonary band which would be 6 months after the second. The final surgery will be the arterial switch and will be one year after the last surgery. He is looking at 4 surgeries over the next 2 to 3 years. Each surgery will be dependent on the success of the last. As long as his heart muscle is responding, getting stronger and growing, then they will continue with the next surgery. The risk is that for some reason not all children's heart muscles respond; some just do not grow. Joseph's right ventricle is atrophied and thin, as expected, from not having to pump under the normal high pressure to the body; it has only had to pump to his lungs all of this time. Unfortunately, each of the 4 surgeries will have to be done as open heart procedures. I am fortunate that my job will be protected under FMLA. Unfortunately, this last week off was unpaid, and the time off in October will also be unpaid. We know he will be in the hospital for at least one week, in ICU for about 3 days and will be intubated the first couple of days postoperative. I anticipate needing 4 weeks off for that surgery and his recovery. The survival rate for the banding surgeries has been 100 percent, so we expect him to come out find with all of those. The survival rate for the children who have the arterial switch operation is 2/3. By the time Joseph gets to the final surgery, he will be 9 or 10 years old. The alternative is putting him on a heart transplant list. We know we will be driving for many many reasons including cost and avoiding the need for a rental but mainly to ensure that Joseph's comfort level on the way home is at the best. He will be able to stretch out a bit more, rest more or get out and walk as needed, and recline in the special seat we have for him on the ride. If anything comes up, I will be able to take care of it much more immediately. Our total trip mileage for the week was 1,395 miles. Needless to say, we were always glad to see gas prices under 4 bucks.

Joseph had an impressive 10 procedures/ appointments this week in the time we were in Northern California: an echocardiogram, 12 lead EKG, consult with electrophysiology, MRI of the heart, MRI of the brain, Holter monitor, consult with the cardiac surgeon, EKG prior to the stress test, the stress test, and a pulmonary function test. He was a trooper and handled all of this with flying colors. The difference in his lifespan is 5 years without it to possibly 60 years with a successful arterial switch based on the best information they have available to date. The doctors and staff were very thorough and took an impressive 2000 images for both MRI's, which are very important because once he has the pacemaker he cannot have any MRI's. He will carry a card (or rather we will for him) for the airport etc.

We also found out that Joseph may be deaf, to what degree we don't know. We hope it is just partial and temporary, and can be fixed. They found problems with his eardrums looking abnormal so they referred him for evaluation and a hearing test. I will make an appointment with an ENT and audiologist for these. They said it may explain why he is so extremely visual and takes such a long time to respond.

We hope to qualify for help with lodging through Ronald McDonald Charities, but we still have regular bills, lost wages, travel with gas and food to cover. Also, in order to minimize the amount of time the children will lose in school with the upcoming surgery, we are raising money to buy a laptop to take on the road with us. A laptop will greatly help with schoolwork while we are traveling. Our goal is one laptop for each of the kids, but we need at least one by October. If you would like to donate towards this, please go to our blog and click on donate. Our blog is www.richardsonstudios.blogspot.com

We picked Gabriela up from Camp Opehay (pronounced O pay hey). She had a fabulous marvelous time. She even got up on stage in front of the whole camp and their families at the closing transition program and shared "I learned that I am not the only one with Bipolar Disorder and ADHD." She says her favorite activities were swimming because she learned how to do the breast stroke and art where she got to do tie-dye shirts and socks and make jewelry. I was honored to receive her gift of earrings that she made for me. Each of the kids also got a sunvisor that she made. She says she met a lot of kids that learned how to behave, and she wasn't the only one who struggled with controlling her anger. She says if they can do it, then so can she.

As her parents, we were also blessed to meet the doctors who are the medical directors of the camp and received a lot of great information. We also met parents who understood what it is like to have a child with Bipolar Disorder and the struggle each of them have had with their child's anger, aggression, cycling moods and learning disabilities common to Bipolar Disorder with or without ADHD. We experienced that we are not the only parents either. We found the camp extremely well organized, the medical needs well controlled, and the staff knowledgeable and attentive to each of the kids. Each of the kids got an identification bracelet with their name just like the ones in the hospital to eliminate any medication errors. They are the only camp of its kind in the nation, and we tip our hats off to them. Well done !! We are praying for a scholarship to perhaps Gabriela can go back again next year. We believe it was the one of the most valuable experiences for her this year

It was interesting to learn that in clinical studies children with Bipolar Disorder and children with Autism have trouble in similar parts of the brain. Also, in children with Bipolar, regardless of whether they had ADHD or not, the area of the brain that affects the Bipolar and the area of the brain that affects reading and language are the same. Across the board, children with Bipolar seem to have difficulty with reading and language. That was eye-opening since Gabriela does as well. We received a lot of great resources and ideas on how to help her. Nothing the public school could ever have provided her. It was a huge gift for all of us. She also received a lot of goodies, very healthy snacks 3 times a day to be sure hunger was never an issue for behavior problems, and a minimal amount of sugar limited usually to an ice cream or gatorade. A win-win. I was also pleased that Gabriela took pictures with the camera provided to her by the camp, and made a lot of new friends which she had sign in her camp journal.

Blessings to You In Christ,
From the Very Glad to be Home Richardsons

Please support our ministry for special needs children, Richardson Studios, where all proceeds support special needs children.
Our website is: www.richardsonstudios.com
Please consider a donation. Every dollar supports Joseph's upcoming open heart surgery, medical needs and expenses. Our online store is: www.shop.richardsonstudios.com
Check out our store, we have new items this month. Jennifer's original artwork and reproductions support special needs.
Our support group for parents of special needs children is:http://groups.yahoo.com/group/everychildmatters/?v=1&t=search&ch=web&pub=groups&sec=group&slk=1Or you can go to www.groups.yahoo.com and type in the search box: everychildmattersThen of course we always have our blog and our personal story at: www.richardsonstudios.blogspot.comCome and check us out ! We look forward to seeing you there.

Blessings in Christ our Lord who has helped us endure, given us patience and faith, and shown us the joy in raising FIVE very special children who I am sure will make their mark and change the world for the better.

May Christ Our Savior Bless Your Journey,
Jennifer Richardson
richardsonstudios@charter.net
www.richardsonstudios.blogspot.com
www.richardsonstudios.com
www.shop.richardsonstudios.com
www.groups.yahoo.com/everychildmatters
For any parent with a special needs child, adopted, biological or caretaker, you are welcome to apply to join our yahoo group. Just go to www.groups.yahoo.com and type in everychildmatters. We are a support system for parents and loved ones of these wonderful kids.