Savanna Is Home!
September 19, 2005 by · Leave a Comment
Well you won’t believe this one. Savanna has done so wonderful that she is already home! She got to come home today, a few days early. Each day we saw more signs of healing and as of yesterday, she had no pain medication (including even Tylenol) until 10:30 last night and I think that was more to help her rest. She informed me that she was ready to come home yesterday, only 3 days after a major surgery. Now I remember from my days of working in surgery that the 3rd day is the peak day for pain and swelling. You would have never known that with Savanna! She told me, “Savanna go home.” I told her she needed to tell her doctor that this morning.
I know you will all join me in giving thanks to our Father for how wonderful she has done. She has continued to amaze us all with her strength and her unbelievable recovery. I thought that sitting in her wheelchair for the first time and riding in it in the van would have been painful, but she did not complain one time. This surgery involved making an incision all the way down her spine, from the top of her back to her tailbone. They then had to pull everything away from the bone, including the muscle, insert 2 titanium rods down either side, place 3 screws in her pelvic bones and attach the rods with some type of wire all along her spine, and yet she is not complaining whatsover. She is just in her room watching TV, singing and as happy as can be. What a miracle child she is!!! I think the scoliosis had gotten so uncomfortable itself, that she is in relief now. All I know is it is an answer to prayer. She was such a blessing to the staff at the hospital as well.
So, I hope none of you have gone to the hospital only to find an empty bed. She is resting right now, but I know she will love to have visitors. If you want to come and visit, please just call first so I can let you know if she is napping. We did come home with some pain medication, but I doubt she will even need it. She hasn’t had anything since 10:00 this morning and that was only because Dr. Gray felt we should medicate her before the ride home. We have continually asked if she is okay, is she hurting, does she need pain medicine. Her answers are always, fine and no I don’t need anything. Such a little trooper.
As always, we REALLY appreciate all of your prayers for our precious Savanna and our family. We will continue to pray for a full and speedy recovery.
Love,
Mindy
24 Hours Post Surgery
September 16, 2005 by · Leave a Comment
Hello everyone. I hope this email finds you all doing well. We are almost 24 hours post surgery and Savanna is doing very well. Her face is still swollen; I would say she no longer has the Goldie Hawn lips, but definitely Angelina Jolie lips. That could be a good thing! She seems to manage the pain pretty well, with the help of Fentanyl. I’m glad they were able to give something other than morpheine since I had heard that could make her sick to her stomach. Her x-ray this morning showed her lungs looked good. There is a concern when you have surgery like this and are lying on your back that pneumonia could settle in. In addition to praying that away, we are trying to stay on top of the breathing treatments, cough assist and suctioning. They did elevate her bed just a little today to try and help that as well.
Today is also her birthday. I never imagined she would be spending her 4th birthday in the hospital, but God showed me a long time ago that sometimes the holidays are more about what you are celebrating and less about the actual day that you celebrate it. I’m thrilled to see her doing so well and even more thrilled to look at her trunk and see a significant improvement and to know that she will no longer collapse while sitting in her chair. The doctor was commenting on how small and thin her pelvic bones are today and I was telling him that she had really gotten uncomfortable sitting in her chair the last few months. He said he was not surprised. Evidently all the weight of the body and her trunk collapsing supported by such small weak bones in the pelvic/hip area would be quite painful.
She has been in and out of sleep, but Nosy Nelly won’t really sleep with all the action going on around her. She’s afraid she might miss something! I swear she sleeps with 1 eye open; that way she can make sure I don’t leave her bedside for even a bathroom break. Yesterday the doctor wanted to show me the x-ray and she did not want me leaving. I told her to count how long I was gone and luckily her Daddy got there as she had just counted to 30, so I got a reprieve. Her anesthesiologist came by today to see how she was doing. I don’t think that’s typical for them to come by the next day, but who knows? They all gave her a birthday balloon and signed it. He signed it, “To the sweetest girl in the world.” Now who could argue with that!
As always, she amazes and inspires me with her strength, will and most of all peace. She can’t speak too clearly right now, I guess because of the sedation and the swelling. She kept asking me for something this morning and I couldn’t quite figure it out. She finally got thru to me. “Mama pray.” I asked her, “You want Mama to pray for you right now.” She said “Uh-huh.” I asked if she wanted to pray with me, “No.” So I put my face right next to hers and prayed for her. As I prayed her whimpering stopped and I could immediately sense the peace coming over her again. Such a simple, yet sweet request. I obviously needed a kleenex after that.
Yesterday while she was in pre-op, it was as if nothing was going on. She was her usual happy, chipper self, even at 5:30 in the morning. She was just talking and acting silly. As we laid there on the bed, I asked her if her angel was with her. She said yes. I asked her how many she had today and she counted, One, Two. I asked her what color they were wearing and she said white. She always looks up at them so that I can have an idea as to where they are. Then they came and wheeled her off to surgery and she was just talking the whole time. Every time I asked her if she was scared she would tell me no. If we could all have the same faith that she has.
As most of you know, this has been a tough week for us. On Monday we had to put our beloved Sadie to sleep. She was our “baby” before we had Savanna since we got her as a puppy 2 weeks after we were married. On Tuesday Tim found out that he has a hernia and will need surgery in the next month. That will be a very minor procedure; it’s just that he will be on light duty at work for 2-4 weeks, so we are praying that God will provide for us during that time. Luckily he caught it early so it is very small and not painful at all.
Savanna should remain in ICU for about a week and then she will go home from ICU. They will have her sitting up in her chair in a few days. She is still losing a small bit of blood from the surgery, but they do not feel they will have to do another transfusion at this point and they will continue to monitor it. I had been praying specifically all week that Dr. Davis woud be the staff ICU doc on Thursday and that Elaine would be the nurse practitioner on shift for Thursday. I was thrilled when we got to ICU yesterday and God had answered those prayers as well. We are so blessed to be surrounded by such wonderful staff at Cook Children’s.
As far as we know, there is not much we need right now. I know a lot of you have asked what you can do. I guess a few meals would help. I’m trying to find little ways to let people help, because as I am reading in the book, “90 Minutes in Heaven”, we steal people’s joy when we do not allow them to help us. I would imagine that Savanna can have visitors at this point, though she is in and out of sleep. It might be better to give her another day before she has too many visitors. The ICU is closed from 6:30-8 am and pm for shift changes.
Thank you all for your continued prayers for healing and comfort for her. I know she will continue to do great and look forward to when she is completely recovered, which is probably about 4 weeks away.
You can also leave a message in the PICU waiting area, but I do not know what that number is.
I’ll try to send another update in a few days.
Love and Blessings to all of you!
Mindy
Fundraiser Success
September 2, 2005 by · Leave a Comment
I want to thank all of you that came out to Savanna’s fundraiser. We had a big crowd; we estimate about 600 people and I think everyone had a great time. We actually had 7 SMA kids there this year. That was wonderful. I know that you all see Savanna, but I think it’s great when you can see other kids that have SMA and see how happy they all are as well. It also makes you realize how severe the different types can be as you look at Lanie, who is a strong Type 2 and Savanna who is a strong Type 1. There is a world of difference between them in their strength. I’ve had to learn to not compare Savanna with the other children and realize that God just gave her strengths in other areas.
As for the big total. I still don’t have concrete numbers because I am waiting on invoices to come in. Some of the things we are billed for after the event, so I am just estimating. I figure we made about $43,000 before expenses. We had about $4500 available for Savanna for her direct expenses and about $35,500 or $36,000 to go to FSMA.
Our expenses were quite a bit higher this year because of the new place, but we feel it was well worth it. Each year we learn some things that we could do differently.
We appreciate so much all of the donations that you all made to FSMA or to Savanna directly. After we pay some medical expenses of hers, we are planning on paying about $2000 down on the wheelchair van so that the payments will be more in our budget.
As for you blood donors, now is the time to make your way over to Carter Blood Centers. Most of you will be donating as replacement credits for Savanna. When you go in to donate, just tell them that you are donating as a replacement credit. Her surgery is scheduled for Sept 15th at Cook Children’s. They want the blood between 5 and 14 days of surgery. I was told they only wanted 3 to 4 people as directed donors and I have sent emails to those people. We are still not sure which surgery she will have. I have left a message for the doctor and I understand that he was meeting with the sales rep yesterday regarding the type of rod to use with Savanna. Please continue to pray that he will have the correct instrumentation and wisdom and knowledge to do the growing rods. I should know which way we are heading next week.
I hope to go ahead and schedule next year’s fundraiser in the next few weeks. We plan on pushing the date back to mid-August. If any of you would like to help, we certainly need more committee members. We are a pretty small committee and all have like 100 jobs each! As I have told many of you before, I had never organized a fundraiser before in my life until we started Savanna’s fundraiser. It was just a step of faith and I must say the Lord never lets me down. Anytime I am willing to step out in faith with something, whether big or small, he always blesses it. I will tell you that we spend a lot of hours and hard work doing what we do, but the reward is so worth it. We are all on such a high the night of the event and then we all crash for like a week afterward. If you are interested in helping with next year’s event, please contact me. We would love to have you.
Thank you again for all your prayers, work and donations on behalf of our Sunshine. I will email everyone after her surgery to let you all know how she is doing. Please continue to lift her up in your prayers for the surgery to be a complete success with no complications or infections and a quick and full recovery.
By the way, Savanna loves watching her video of herself. She wants to watch it over and over again. I understand that is typical for children her age. I’m so glad when she does things that are typical for her age!
Love,
Mindy