Good News
March 30, 2004 by · Leave a Comment
Well, I finally have some good news to share. Savanna did get her chest tube removed on Saturday. She is still in the hospital and will be there thru the week it looks like. Her pulmonologist told me that it was a “reasonable goal” that she might come home this week. They want to get her back on her home ventilator (she is on the hospital one right now) and see if she can go to the regular antibiotics, rather than IV. She is also still on oxygen. This strep infection has really done a number on her. She has been sick now for almost an entire month!
She does still have quite a bit of discomfort and requires pain medicine about every 4-6 hours. I am hoping that will dissipate over the next few days as well. They told me that even though the chest tube has been removed, it still causes quite a bit of pain every time she breathes because there is inflammation in that area. I think she is just ready to come home and ready for everyone to leave her alone. I know she is tired of being poked and prodded all day and all night.
We continue to ask for prayers for her healing, as well as the IV to continue to hold up and ask that she get to come home this week. Still no news on the job front for Tim either. I will update you all on Savanna again in a few days.
As always, we appreciate you all so very much. I will be ecstatic when I get to send the “Savanna is home” email!
Love,
Mindy
Savanna Is Better
March 25, 2004 by · Leave a Comment
My husband has scolded me for not sending out an update 
Savanna is doing better. She still has the chest tube in and continues to be on IV antibiotics. They have not had to insert a 2nd chest tube and don’t believe they will have to. We are hopeful that she can come home early next week and continue antibiotics at home. She is still in quite a bit of pain, so they are giving her some pain meds thru her IV.
While the past 3 weeks have been extremely hard on us, a dear friend pointed out something to me. It seems during these times that I feel as though the Lord has forgotten about me. She reminded me that it’s when we feel Him the least that He is working the hardest. I have found great comfort in that. I also find comfort when I remember that when Savanna gets sick, it’s not about me. The Lord always so gently reminds me of that. She is in essence, his precious child; we just have the privilege of taking care of her and calling her our own. Every time she gets sick, she is introduced to a new nurse, doctor or therapist and she always seems to change lives thru her sweet spirit. A nurse that took care of her the past few days in the ICU brought tears to my eyes as she shared with me what my child had done not only for her, but how she had “changed the lives of so many nurses up there”. She told me that she had been suffering depression due to a failed relationship.
So much so, that she did not even want to come in to work each day. On the first day she had Savanna assigned to her, she said she just fell in love with her and that her life is not the same now. Savanna has brought her a sense of healing. She said she realizes how trivial her problems are in comparison to what Savanna goes thru and somehow Savanna always manages to have a great attitude. Even in the midst of pain and difficulty breathing, she will still light up the room with her smile and has a way to really connect with people. As I always say, she teaches me daily what life is all about. I forget how much of a blessing she is to so many other people’s lives as well.
We ask that you continue to pray for her healing and that her IV will continue to do well. Please pray for strength, comfort and peace for Savanna. Continue to pray for wisdom and guidance for the people that care for her. Also please continue to pray for that great job for Tim. We haven’t heard from FEDEX yet, but assume no news is good news since they have to do all the background checks, etc. I also have been in touch with another SMA family. Please pray for the Hernandez family. They are very young (20) with a 14 month old son with Type I. The mom does not have any support from her family or friends. I am planning on trying to meet with her tomorrow when she brings Benjamin in for his pulmonary visit. He has a trach and is ventilator dependent.
As always, we thank you all so much for the prayers and support. I will continue to update you over the weekend.
Love,
Mindy
Savanna Still in Hospital
March 22, 2004 by · Leave a Comment
Well, here we go again. Savanna seemed to be doing better yesterday morning, but that was short-lived. Her blood cultures came back and she has a Strep-A infection in her chest. That is what contributed to her “blowing her lung out”. We have now found out that she actually has 2 holes in her right lung. One in the upper lobe and one in the lower. She is on 2 different IV antibiotics to treat the infection. Her IV site failed her 4 times yesterday and one of them infiltrated which made her foot swell up pretty bad.
It seems that she will need to be on these antibiotics for 7-21 days. Quite a wide range. The chest tube continues to drain pus from her chest, so far over 250 cc’s. Her chest x-ray from this morning is worse than yesterday. They will continue to x-ray her each morning and check her blood gases. It is possible they will have to insert a second chest tube, but we obviously hope not.
While I am glad to know she is getting the best care possible, it still breaks my heart for her to be hospitalized. They have moved her to one of the “glass rooms” in ICU at my request to try and minimize her exposure. I realize that as sick as she is, there is no way we could take care of her at home. She needs to be seen by a doctor on a daily basis and needs a chest x-ray taken on a daily basis as well.
Here are my requests from all of you. Some of them you can probably help with, some you may not be able to.
1. Pray specifically that her IV site will hold up and not fail again. They will try to keep doing the regular IV but may have to go to a central line. Doing a central line increases her risk for infection.
2. Pray specifically that her lungs will heal and her chest wall as well. Also pray that the infection will respond well to the antibiotics and that she will NOT get any other infections and/or viruses.
3. Pray for wisdom for the doctors, therapists and nurses and for rest for Savanna. They had to sedate her last night and today to help her rest. I’m sure she is in a considerable amount of pain with all that is going on in her chest cavity.
4. Continue to pray for a great job for Tim (soon) and rest for us.
We are trying to schedule people to come and sit with Savanna and read her books and keep her company. Please let me know when and if you are available. We are trying to schedule 2 hour shifts to cover her. Just email me and let me know when you are available and I will pass it on to mom.
We have started a website for Savanna. I will work on that tomorrow. That will make it easier to communicate with everyone on a daily basis. We will do daily Savanna updates that you can check. I will email you with that information as well.
As always, thank you all. I’ll be in touch.
Love,
Mindy
Please Pray
March 19, 2004 by · Leave a Comment
I find myself here again asking for prayers for my beloved Savanna. We took her in to see her pulmonologist this morning since she still is not getting better. The chest x-ray showed that Savanna has a pneumothorax, which means she has blown a hole in her lung. She had to be admitted immediately to the PICU for insertion of a chest tube. The good news is, the hole in her right lung is very small since we caught it early. We believe it happened some time yesterday afternoon due to the pain she was experiencing and some other symptoms. The bad news is that this is a critical thing and she is in the PICU.
Upon insertion of the chest tube, they immediately drew out 30 cc’s of air that was trapped between her right lung and the chest cavity. What essentially happens with a pneumothorax, if untreated, is that the lung will collapse because it cannot inflate with the air pushing all around it. They also drew out a considerable amount of pus which seems be quite concerning as well. That means there is obviously some type of secondary infection in her chest. The chest tube will most likely stay in a for a few days, at least. They have sent the pus off for cultures and I’m not sure how long that will take. Savanna is sedated right now and resting comfortably.
I knew something had gone terribly wrong yesterday. She appeared to be doing better on Wednesday, but then yesterday afternoon her head was sweating profusely and she seemed to be in quite a bit of pain and had a panic stricken look on her face. We believe the cough assist machine, which has been so helpful in treating her in the past, is what caused her to blow her lung out. Luckily we did not use it last night or today at all, as that would have made the hole much bigger and would have severely compromised her.
There’s not much anyone can do right now other than pray for her fully and speedy recovery. Her pulmonologist did say that these things do not normally cause any long-term damage. The lung normally fully heals after the chest tube is taken out. We don’t know how long we are expecting to be there at this point, at least until next week sometime.
As always, we appreciate your prayers and support. I will try to keep you all updated as much as possible. We won’t be able to be reached by phone, but you can try to leave messages on my cell phone or email.
Love,
Mindy
Article in Family Circle
March 17, 2004 by · Leave a Comment
Just wanted to let you all know there is a great 2 page article about Families of SMA in the April issue of Family Circle. Chris, this might be helpful for your marketing stuff with Dental Boot Kamp.
Mindy
Lift Her Up in Prayer
March 16, 2004 by · Leave a Comment
Well I wish I had better news to report. Savanna seemed to be doing a little better yesterday. Did not have fever, yet she continues to have diarrhea and continues to require oxygen. I had to call Cooks Home Health and demand a nurse be sent for the day, otherwise I was calling to file a complaint with the Department of Human Services (which I still may do).
Thank the Lord they did get us a night nurse as well. I was so happy that I could look forward to a full night’s sleep. But, the nurse woke me up at 2:00 am because Savanna was not doing well. She was extremely pale and was not holding her oxygen levels, even with bagging her with the ambu oxygen. It escalated to an ambulance ride to the ER. We did get to bring her home and she is resting now.
According to her doctor, this is typical of this virus that she has that everyone else seems to have had. It lingers for 2-3 weeks for healthy people. The fact that she is not running fever is a good sign. If she had pneumonia she would spike a high fever. Her chest x-ray in the ER this morning did show moderate improvement in the right lung.
The Home Health agency has agreed to let us have additional nursing for the next 2 weeks since they had a conference call with the insurance company and were told the claims should be cleared up in about 2 weeks. How generous of them to finally agree to give my daughter some care.
It has been a very rough 10 days. We just continue to lift her up in prayer and try to realize this virus is just taking longer for her to shake than normal. As always, we appreciate everyone’s prayers and support. We’ll be in touch.
Love,
Mindy
We Need Your Prayers
March 12, 2004 by · Leave a Comment
We are in need of many prayers. First of all, Savanna is still at home. She has had a little bit of improvement, but she is still very sick. We now find ourselves in the middle of an insurance battle with our home health agency.
Our home health agency has outstanding claims from the last year for Savanna’s private duty nursing. We are approved for 84 hours a week on a “normal” week, however we only use 24. When Savanna is sick, we increase our nursing hours as need to help care for her and keep her out of the hospital.
I received a call this morning that we will not be sent any additional nursing hours until the home health agency receives something from our insurance company stating the outstanding claims will be paid. They total about $70,000 at this point. I knew they were having problems getting paid, but I was told not to worry about it as they had their legal department working on it. We are approved for the nursing hours. The problem is when the claims are submitted the insurance company’s computer does not recognize the code and rejects the claim.
They now wait until my child is seriously ill to tell me they will not send any additional nursing. We have a nurse until 4:00 today and no one else until Tuesday. They know how sick Savanna is, but they refuse to incur any more expenses.
I have spoken with the director of home health nursing to tell him I feel this is highly unethical to put my child in the middle of this and his response was that the insurance company is highly unethical for not paying the claims in a timely manner. I agree with that, but at the same time, it only costs about $2000 to send nurses for the weekend. Not really that much compared to the expense of her being hospitalized and the risk of her getting secondary infections such as RSV or pneumonia.
This issue has upset me so deeply that I can hardly talk. I tried to lay down and rest since we didn’t have a nurse last night, but cannot even rest since I am so angry. The likelihood of them getting anything in writing from the insurance company at 5:00 on a Friday is next to impossible. So now we are faced with a weekend of no nursing and a sick child.
I don’t understand why we are being put thru this fire. My level of anxiety is always so high when Savanna gets this sick. I don’t need the added stress of not having additional help to care for her. Please pray that these issues will be resolved.
I will keep you updated as the weekend progresses. We welcome any ideas or suggestions anyone might have. It seems like there should be some sort of “watchdog” attorney’s group or medical ethics board or something I can file a complaint with. If anyone has any ideas, please let me know.
Thank you for your prayers.
Mindy
Savanna Crisis
March 11, 2004 by · Leave a Comment
Okay, I just realized that you probably have not received any of my emails. I am still learning our new email system. If you did not already know, Savanna has been sick for a week. Here is what I sent out today.
As many of you know, we had a crisis yesterday morning with Savanna and had to take her to the ER. When I was trying to drain the water from her ventilator tubing, the water chamber got knocked over which sent a lot of water up thru her ventilator tubing and dumped it into her trach, which, of course, goes directly into her lungs. Her oxygen saturation level started to plummet but we did get her stabilized so we could drive her to the hospital and she was wheezing in her lungs.
They took a chest x-ray and said her right lung is “significantly worse” than it was 1 month ago. They did let us bring her home and we have started her on antibiotics for 10 days with continued breathing treatments around the clock and she remains on oxygen.
She did pretty well thru the night, but has a fever again this morning and is requiring more oxygen.
At this point it is very up and down, so we continue to ask for your prayers for her little body to fight this off and regain some energy. She has been on a clear liquid diet since Saturday so she is very weak. We are trying her on a very diluted formula this morning to see if she will tolerate it just to get her some calories. Unfortunately, the antibiotics make her stomach worse and cause her diarrhea. It’s not a fun place to be.
As always, thank you for your prayers and support. I know God will bring her thru this, as He has done so many other times. I will keep you all updated.
Love,
Mindy