Happy Thanksgiving!!!!!
We have a lot to be Thankful this year. God has been very good to us! Our precious baby is doing much better, we are back home with Katie and my parents, we have families that have been tremendously supportive and helpful and we have realized how many wonderful people there really are in the world. Each day Amanda seems to be getting brighter eyed, more active, more vocal, and more full of smiles. Each day Katie gets more used to having her parents back home.
We are thankful for so many things today, Thanksgiving 2005, but we especially want to thank our families. We are so grateful that we have wonderful families that have supported us in so many ways throughout this experience. My parents did a wonderful job with Katie while we were away. Words cannot adequately express the depth of our gratitude to our families. Thanks to my parents Roger and Dianne for all that they did while we were away (taking great care of Katie, caring for a sick dog, closing on our new house, taking care of our mail, providing love & support daily, etc etc). Thanks to my brother Dana and his wife Heather too for the Blog, for Dana flying out to UCLA for Amanda’s first surgery, and all of their support. Thanks to Dan’s parents and family for their support – Grandpa Jack was a big help on both of his visits to UCLA and both Jack and Pegi have been very generous and kind with their support, as have Jill and David. Thanks to our extended families for all the prayers, words of encouragement, thoughtful cards & gifts etc. Each day we have more time to reflect on God’s goodness and on the wonderful family and friends we have in our lives. We sincerely appreciate all of your prayers, kind thoughts and support over the past 8 weeks. God certainly heard your prayers and we felt them. During some of the toughest times, an amazing calm (the peace which surpasses all understanding) would come over us and we knew it was because our Lord’s strength was being infused into Amanda and us as you held us up in prayer. THANK YOU!!!
For my own future recollection and for those of you who have an interest, I have summarized some of the events of the last few months below.
Summer 2005 –
Amanda had ups and downs while on the ketogenic diet as a treatment for her seizures. She became seizure free for a while but the infantile spasms came back with a lot of intensity when one of her medicines was reduced in mid-August.
September 2005 –
Subsequent to the drug wean, Amanda’s seizures had become more severe than anything we had ever seen, despite increases in medicines. We learned about the surgery successes at UCLA and contacted Sue Yudovin at UCLA who promptly got us started on the path for a surgical consult (Thanks Sue!). The preliminary evaluation of Amanda’s records by the UCLA team indicated she was a likely surgical candidate so we set up a detailed appointment scheduled for early October.
Getting to UCLA –
Because Amanda was immune compromised due to one of her medicines, it was not in her best interest to fly to UCLA commercially. We were blessed to receive assistance through Corporate Angel Network, who booked us on a flight to Santa Monica through Wachovia Bank (thank you to Corporate Angel Network and to Wachovia!) The flight would get us out to UCLA a little over a week prior to our appointment so we planned to hang out at our hotel until her admission date. Unfortunately, despite being on 5 anti-seizure meds at beyond therapeutic levels, Amanda was having 150+ seizures per day on average.
The First Admission to UCLA –
Amanda and I were out in LA and she was having increasing seizures to the point where I was having to dose her with Diastat daily and sometimes twice daily to get some control of her seizures. When a family friend (nearly a relative), Patty Fiorello learned of our situation, she contacted a friend of hers, Tony Coehlo, who heads the Epilepsy Foundation and has strong ties to UCLA. To make a long story shorter, Tony contacted the doctor holding the endowed Chair that Tony had set up and our admission got moved up (thank you Tony!). Being admitted early allowed the UCLA team to get Amanda’s seizures under a little better control with some medicine changes (thank you Dr Van Hirtum – Das!) and also allowed the team to perform and evaluate her EEG, PET scan, and MRI earlier (thanks to all the wonderful neurologists and neurosurgeons at UCLA!). The net result was that the team felt Amanda needed surgery ASAP. While the immune compromise caused certain increased risks in surgery, the risk of waiting was more significant and surgery was scheduled for Oct 14.
First Release –
Amanda got stable enough that they allowed us to go back to the Tiverton House (a UCLA hotel across the street from the hospital) for several days prior to surgery. It was so nice to have some quiet time with Amanda and Dan and later with Grandpa Jack prior to the surgery. We walked around Westwood and enjoyed every minute we had with Amanda. Her seizures were a little better and she was having around 40 on good days and around 100-150 on worse ones. In traditional Amanda fashion, she was happy as can be and smiled at everyone. During this time, the UCLA team continued to refine their analysis of Amanda. The final meeting on Amanda was held the Wednesday before surgery and all the pediatric and adult neurologists, neurosurgeons, epileptologists, and endocrinologists discussed her case. While there were some reservations on surgery due to various factors, the bottom line was that the team as a whole still thought surgery was the best option for her and was the only thing that would give her a chance at a quality life.
Admit #2 – Surgery
On Oct 13, we were readmitted to the hospital. We met with all the different doctors and signed a myriad of forms. Amanda slept well, I did not. I spent a long time on Oct 13 reading my bible and praying and thinking about what would happen the next day. On Oct 14, they came for Amanda earlier than first planned and Dan and Grandpa Jack ran over from the hotel to see her before surgery. The hardest thing I have ever done in my life was hand her over to the doctors on Friday Oct 14. We knew it was her best chance and we knew God had led us to UCLA but it was still hard. The surgery was to last anywhere from 6 – 16 hours with the average being about 12. Our doctor, Gary Mathern (thank you Dr Mathern!) kept us informed at each step of the surgery by having the OR nurse call up to the waiting area. Amanda’s surgery lasted only 8 hours and later Dr Mathern would tell us that it went so smoothly that it was easier than a typical day at the office. Praise God!!
Recovery –
We first got to see Amanda in recovery where she looked like a little angel with her head bandaged in gauze. She did well in recovery and then went to ICU. After she was in ICU for a few hours, they told us she was doing too well to stay in the big ICU so they sent us to a smaller, less crowded ICU. Over the next several days, she continued to improve but she had to remain in ICU as long as she had an external drain in her head. The first night they tried to clamp it, her pressure went up and the spinal fluid leaked out around the drain, so the neurosurgery team stitched her head up more and called it a night. The next night, the same thing happened and she received more stitches but then they clamped again and her pressure seemed fine. The next day we went to a normal room on the floor where she slept 23 of 24 hours. Over the next few days, she became progressively more alert but she would throw up on occasion and was very sensitive to physical movement. Overall, her progress was good so we were released.
Back to Tiverton for 2.5 days –
We went back to Tiverton House (the hotel) for a few days but Amanda seemed to be getting increasingly agitated. She would scream and grab at her head if we moved her at all. Next, she spiked a fever so back to UCLA we went, this time to the ER. After 10 hours in the ER, they figured it was probably another urinary tract infection combined with soreness from the surgery so they sent her back to Tiverton with instructions to come back if she started vomiting. The next day, she started vomiting, so after 12 more hours in the ER, she was readmitted to the hospital to be treated for a suspected case of spinal menengitis.
Admission # 3
Back in the hospital, Amanda was started on mega-antibiotics that were so strong that she had to get Tylenol and Benedryl prior to each dose just to tolerate them. At first, she seemed to be doing better, but then the vomiting increased to the point where she was throwing up 20 times per day, then 20 times per day with blood in it, then later with coffee grounds in it. Then we had a night were Amanda scared everyone with a significant change in mental status along with possible seizure activity from 8 pm until 4:30 am. In the meantime, we finally received the GI consult and did an upper GI and a stomach emptying study, as well as CT #6 and started her on intraveneous feedings as her weight dropped from 10 kilos to 8.4 kilos (1 kilo = 2.2 pounds). While she was in the stomach emptying study, the neurosurgeon came down and told us that the latest CT revealed some signs of pressure in her brain and that he was recommending shunt surgery. So 2 days later, Amanda received her shunt. The surgeon said that she had so much pressure in her head that the spinal fluid came spraying out as a “geyser” when he made the hole in her skull for the shunt. Thanks to Dr Mathern, Dr Shields, Dr Changizi, Dr Extrand, and all the others who helped us get through this admission and reach the point where Amanda was doing well again. Thanks to Dr Sheilds for managing a sticky situation and turning it around for us.
Recovery Again
The shunt surgery lasted 2 hours and then we spent 5 hours in recovery before heading to ICU (she was fine but there were no beds available in ICU). In ICU, we started to see glimpses of the happier, more active Amanda. She was out of ICU the next day, on the floor for a few more days to ensure all was going well and then back to Tiverton. Within a few days of shunt surgery, Amanda was grabbing everyone’s glasses, playing actively with toys, and becoming much more vocal (Thank you Jesus!). This time, she really enjoyed her time at Tiverton House, and so did we.
Home at Last
On Sunday, November 20, we returned home via another Corporate Angel Network flight (Thank you Corporate Angel Network and GlaxoSmithKline!). We rolled into Wilmington between 9 & 10 pm that night and were welcomed by a very happy Katie, Nana & Papa. Immediately, Amanda seemed to relax and realize that she was home. Tuesday, she got her stitches out. Today, she gets to have her first real bath. Next week she resumes therapy. Katie has really enjoyed having everyone back and loves to help feed her baby sister. At dinner each night, Katie wants Amanda to sit next to her. It is great to be home!
A few of the many lessons learned:
1. God is good and He does hear our prayers!
2. Amanda is 18 pounds of pure heart & spirit, both in terms of her will to live and her ability to be cheerful no matter what the circumstances. She smiled almost every day that she was in the hospital (except for about 4 days after the first surgery).
3. We are very blessed to have such wonderful families. Thank you so much for everything!!!!!!!
4. You meet wonderful people in the hospital that greatly touch and enrich your life. For instance, Eddie’s parents who asked to pray for Amanda at a time when they were nursing one son back from two heart transplants and sepsis, and another son back from a car accident in which he suffered significant brain damage and had to learn to walk and talk over again. Another example is Pat and Phil who shared a room with us (after their son had a kidney removed) and helped us in every way imaginable when Amanda was throwing up 20 times per day. Also, all the wonderful doctors, nurses, & care partners who took a special interest in Amanda.
5. You meet wonderful people outside of the hospital that do the same. Such as …. all the people posting to the BLOG and praying for Amanda, friends who fly out and give blood, colleagues who cover your classes when you need to be away, the photographer who cut his fee by 65% so that we could have pictures taken of Amanda before surgery (see the BLOG picture) and also offered to give blood, the guests at the Tiverton who covered us in prayer and gave us the “Power of a Praying Parent” books, all the wonderful people who sent cards, gifts, made phone calls etc; the people from the Corporate Angel Network and from the companies who flew us each way, and all the other wonderful people who touched our lives in so many ways.
6. Life is precious. Don’t sweat the small stuff but instead always look to find ways to enjoy every day to the fullest extent possible!
7. Focus on the person, not the condition. The spirits inside every one the kids we met at UCLA were absolutely fantastic! We are blessed to have met each and every one of them!
8. Nurses don’t get paid nearly enough for all they do. Thanks to all the nursing staff.
9. As good as the staff can be, you still have to be hyper-vigilant in the hospital to ensure your child gets proper care. No one will advocate for your child like you will so be vocal when necessary to make sure that your child gets the care they need. Also, don’t leave them alone in the hospital room for a minute and make sure you pay attention to everything that happens to ensure meds are correct & are in the right doses, etc.
10. Now is our time to pay back. Thanks to everyone for your love and support! Please let us know if we can ever be of service to you. We are so grateful for you and your friendship. God Bless you all!
Susan
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