Thank You for Your Prayers
April 19, 2004 by · Leave a Comment
I guess I’m a little late in letting you all know how Savanna is doing. She has been home for almost 2 weeks and is doing much better. She is still on the vent 24 hours/day and has required oxygen pretty much since we came home. I think we are finally getting to the point of not needing oxygen. She had a follow up appointment with her pulmonologist a week ago Friday and she said her right lung looked a little bit better. We go again this Thursday.
We are excited that her power chair will be here tomorrow. He brought it out Friday, but she couldn’t even sit in it because it needed to be adjusted and the screws were so tight, he had to take it back to the office to adjust it. We have been putting here in her manual chair, vent and all and walking around the neighborhood. She just LOVES going for walks. I can’t imagine how much more she will love it when she actually gets to drive.
We are so thrilled to have our Sunshine back home with us. I just can’t explain how lonely and sad this home is when she is not in it. You find comfort in the day to day noises like her videos and her ventilator, that it is just way too quiet without her. It’s so nice to hear her talk and giggle again. Something we hadn’t heard for a while. Unfortunately her scoliosis took an awful turn during this last illness. We decided it must have been from the fact that she was in so much pain from the strep pneumonia that she was trying to curl her body up. We see the orthopedic doctor at Scottish Rite on May 4.
I can’t even tell you how hard it is to see your child’s body cripple before your very eyes. It is amazing how quickly it can happen. I am sure that with the degree of curvature, it is affecting her breathing. I just hope there is something we can do to correct it that will not involve surgery. I feel like all I do is “put out fires” for her. I get one put out and then another one pops up. When I get sad about all the awful things this SMA does to her little body, the Lord reminds me to look with my faith, not with my eyes. That is what allows me to get out of bed every day and put out the fires all over again. That and seeing that precious smile that lights up a room. I am so amazed at what a sweet spirit God gave her. Through everything she goes thru, she still remains such a source of inspiration and joy.
She loves her purple room and loves getting to play and read her books. We bought her a baby doll right before she got sick after seeing her feed the baby with the speech therapist. Tonight as I cooked dinner, she sat in her wheelchair in the kitchen and played with her “dishes” on her tray. She felt like such a big girl doing her own cooking while I was cooking. I treasure her so much and love getting to spend time with her again in our own home.
Tim is still looking for a job. He does have an interview with FedEx this Wednesday for a courier/handler position. Although they only hire on a part-time basis, you eventually get to full-time and evidently you can pick up extra hours when you are part-time, so it could actually be full time. The main thing is that they offer benefits which we so desperately need. It would be such a blessing if he got this job because it is at the Mark IV Parkway hub which is only 6 miles from our home. We are praying that God gives us a “yes” for this job. We feel if he could just get his foot in the door with them, some wonderful opportunities could open up.
As always, we are so thankful of all the prayers. As I reflect back now over how sick Savanna was, I realize that she only made it because of the prayers. This sickness was so serious, that it really should have killed her. SMA children die from pneumonia. She had strep pneumonia with 2 pneumothoraxes (holes in her lung). It was surreal hearing them talk about her in rounds a few weeks ago after her episode the morning that Tim was with her. In Tim’s words, “she had a rough time this morning, but she ’s okay now. Her sats dropped and they had to do an emergency trach change.” When her doctor called to tell me what happened she mentioned about Savanna’s sats dropping to 15. 15! That is almost dead. Anything below 92 requires oxygen. They also said they were only seconds away from having to do chest compressions. I guess ignorance is bliss in some situations. She made it through and is doing sooo much better now.
I have a hard time when I reflect on the last 7 weeks and wonder why my Savanna goes thru so much more than most other SMA children; even ones that are so much weaker than her. I am reminded that God is always in control and He never fails to step in and save her. Seeing what she goes thru it not only to build my faith, but to build those of everyone that knows her. It is always about the lives that are changed because of her in some small way. I have to remind myself about that the Lord told me nearly 2 years ago, right after she was diagnosed with SMA. He said not to be moved by what the doctors tell me and by what I see; that her spirit is strong and she will make it thru things that they don’t believe she will. It just reminds us of the saying, “that which doesn’t kill us, only makes us stronger”. As always, I encourage you to really enjoy your children and learn from them.
Our prayer requests are that Tim would get hired with FedEx and healing for Savanna. Healing for her lungs, for her crippled and extremely tight little body; for complete healing. Please begin to pray for wisdom for the orthodpedic doctor and myself and Tim as we see what needs to be done for her scoliosis. We appreciate you all so much for the the abundant showers of love and blessings that we receive. I will try and send out an update after Savanna sees her pulmonologist this week and gets her hot pink power wheelchair!
Love and blessings for a great week,
Mindy
Savanna Is Coming Home!
April 7, 2004 by · Leave a Comment
Savanna is coming home today!!!!
Her doctor just called and said that her x-ray is better. The lung is not fully expanded and any other parents she would not discharge her, but she knows that we will take good care of her, also with the help of home health nursing.
She won’t be able to write the orders until about 11:00 so we won’t be home till this afternoon sometime. Meanwhile the Rushes are doing our “Sunshine is coming home happy dance”. It’s quite a site that I’m sure none of you would like to see. (kind of like Tim’s singing)
Please continue to pray for her full recovery as this could still take a while. We do feel that everything they have been doing in the hospital is exactly what we can do at home. Savanna will be more comfortable here and we can make her a little more mobile which also helps open up her lungs. I’ll keep you updated on her progress.
Thank you all so much for your continued prayers and support.
Love,
Mindy
Hopes Dashed
April 6, 2004 by · Leave a Comment
Well my hopes for Savanna coming home today were dashed after I saw her chest x-ray. Here I was loading some things in the van thinking she’s got to be going home today and then the nurse practitioner mentioned that she doubted we would go home because her right lung was worse. Bummer!!! So, Dr. Dambro said if Savanna’s chest x-ray is better tomorrow she will let us go home.
That means you all need to pray for a beautiful chest x-ray with both lungs being expanded. We already have an appointment scheduled for Friday to see Dr. Dambro (pulmonologist) and have another chest x-ray. She said that the lungs take 2-3 months to fully recover after a strep infection! She said if we could get her right lung opened up today and it looks good in the morning then she will let her go home tomorrow. Of course I was trying to nail her down on a time (morning or afternoon). I was working with Savanna today, sitting her up and doing her breathing treatments and CPT trying to open that lung up. Move over and let me take over. I’ll show you how to open up that lung! 
lol
So, Savanna seemed to be doing well when I left tonight. I will email everyone tomorrow and let you know what the news is. Still nothing on the job front for Tim either. We’ll continue to pray that Southwest Airlines will come thru for him.
I’ll be in touch.
Love,
Mindy
Still in Hospital
April 2, 2004 by · Leave a Comment
Savanna is still in the hospital. Our hopes of coming home this week were squashed Wednesday morning when she had a mucous plug that blocked off her airway. They did an emergency trach change and she was fine afterward, but beforehand her sats had dropped to 15. She is on less oxygen now, about 1 liter; she was on 3.5 liters earlier in the week. As of yesterday morning her chest x-ray was worse, so her doctor ordered a sonogram on her right lung to rule out any fluid being in there. It showed to have a little bit of fluid, but not enough for them to “go after it” with a bronchoscope. She acted like she felt better yesterday, even though the x-ray was worse. It just reminds me to see with my faith, not with my eyes. She continues to be on IV antibiotics and we are hopeful that she will come home early next week. It has now been 2 weeks of hospitalization.
As for Tim, we still have not heard a word from FedEx. We are getting discouraged since the training starts April 12. He is going for a group interview for Southwest Airlines next week. The toughest part of this is that he can only take a job with a big company that will have good benefits. It doesn’t do us much good for him to work for a small company because the insurance would not cover half the things that Savanna needs and we cannot keep COBRA insurance long-term. We can only continue that for 13 more months. So, we continue to pray in a great job with great benefits.
Savanna will be happy to see her new room when she gets home. We have taken on the project of painting nearly the entire house while she is in the hospital since we cannot paint when she is home. Her room is now purple, her favorite color. It looks like a little princess room, so we know she will LOVE it. We still need people to go sit and read with her if any of you are available. She really enjoys that.
We continue to ask for the following specific prayers:
- Savanna’s IV to continue to hold up.
- Savanna’s right lung to fully re-expand and for the infection to be gone.
- Savanna to be back on “room-air” and to be able to wean off the ventilator soon.
- A job for Tim with great benefits.
- Wisdom for all the doctors, nurses, therapists that are caring for Savanna.
- For strength, peace, and comfort for our family.
- For Savanna to come back HOME!
Thank you all for the love you have shown us. I hope to have some good news to share in the next few days.
Love,
Mindy