Since my last post some things have changed. She is now a lot more responsive and alert. She is trying to read books and she is really staring at her visitors intently. You know that she wants to say something badly. The docotrs told us we could have a trach put in to help her longer but if her physical strength was not much better than she would not be doing too much more than now. We feel that as long as she is responsive and wanting to communicate with us and knows who we are it would be wrong to not put one in. We really feel like she still wants to be with us and can maybe bring more joy to others still.
I feel that maybe she can be a testimony to others about God and how powerful prayer really is. Although we know she is still terminal she has been really bad off several times in the past 9 weeks and thanks to prayer she has been bouncing back like she has more to do. Even thought the doctors said she would not probably not get any strength back yesterday she nodded her head several times when asked question and waved bye some. She purposefully raised her arm and hand a few times. She squeezed hands a little harder and even doctor said she seemed to be a little stronger. Even if it just means a few more months with her and gives us more time to prepare we are thankful for that and also thankful she still has oppotrunity to change some lives if possible.
Tuesday, February 24, 2009
Wednesday, February 18, 2009
Decisions
Savannah had her MRI yesterday. It basically showed what they were looking for - grey matter on the brain and some brain damage. They diagnosed her with Alpers syndrome which can affect brain and liver and can stem from a mito disorder. They basically gave us the decision to keep her on vent and prolong everything or take her off and let her go like that. There is a 50/50 chance of the other 2 getting it even though they show no signs. They wanted us to maybe wait until Monday so they talk to the doctor where we sent the muscle for testing for the mito to see if they need any additional tissue to test to try to still find answers for the mito so we know for the other children.
We will probably take her off the vent sometime next week after they do this. We would still have no certain idea of how long she would have after that- they said it could be days, weeks, or months but more than likely shorter. If anyone would like to come see her they are more than welcome. Thank you for the prayers that everyone has given the past 2 months. I know that they did help and had a lot to do with why she is still here now. Please pray for peace for the family. I worry especially about Jeff and how he will handle it. Anyone who knows him and has seen him with her knows that she was his world. From the time she was born she was always Daddy's girl. She practically slept on his chest the 1st year of her life and he did not know how to say no to her.
We will come away from this knowing that Savannah touched many lives. She loved everyone she met and had the ability to draw anyone in to love her just as much. She did not like anyone being upset or hurt and was very nurturing. She hated for anyone to be mad at her or anyone else. We know that she will be better off as she has gone through so much in her 9 years. She hardly ever complained about anything.
We will probably take her off the vent sometime next week after they do this. We would still have no certain idea of how long she would have after that- they said it could be days, weeks, or months but more than likely shorter. If anyone would like to come see her they are more than welcome. Thank you for the prayers that everyone has given the past 2 months. I know that they did help and had a lot to do with why she is still here now. Please pray for peace for the family. I worry especially about Jeff and how he will handle it. Anyone who knows him and has seen him with her knows that she was his world. From the time she was born she was always Daddy's girl. She practically slept on his chest the 1st year of her life and he did not know how to say no to her.
We will come away from this knowing that Savannah touched many lives. She loved everyone she met and had the ability to draw anyone in to love her just as much. She did not like anyone being upset or hurt and was very nurturing. She hated for anyone to be mad at her or anyone else. We know that she will be better off as she has gone through so much in her 9 years. She hardly ever complained about anything.
Tuesday, February 17, 2009
Turn For The Worse
After doing well after her surgery on Wednesday Savannah began having problems on Sat morning. She started having little seizure clusters- she had 11 2 min apart that morning- despite being on the Keppra for seizures 3 times a day. Around 1 pm Sat she began to run a 102 fever so they started testing blood and urine and nasal secretions. She had a yeast infection in her urinary tract again and pneumonia again - except this time a contagious sort. They tried to hold off on the tylenol due to her liver not functioning which from early tests on the liver biopsy show that it was an existing problem.They gave her ativan to stop the seizures on early sat and midday sat- neither dose helped keep them away completely. She has pretty much sleeping all weekend and today. We do not know if it from the infection, the seizure meds, or something else like problems with the brain.
All her vital signs were doing pretty well other than the heart rate being up from the fever and infection. Although her resp rate was ok her breathing pattern was not normal. And she had been totally out of it all weekend and still having the seizures so the neuro wanted to put her in ICU. They plan on doing a MRI and knew she would need to be sedated for that but were leery because of her breathing pattern. They also said we had 3 choices. Keep giving the seizure meds that knock her out and she may stop breathing. Do not give them to her and she would keep seizing. The 3rd option was to put a breathing tube in which would enable them to keep giving her the meds. So we did the breathing tube.
We already knew her liver was not functioning well and this past week her kidneys had problems probably due to one antibiotic that she was on for a while. Then of course her brain is having issues due to the seizures. We are hoping that once the pneumonia gets cleared some that she will improve her breathing and stuff. They have her sedated at least for a couple of days so she can do the MRI and rest while the breathing tube is in. Then they will try to let her wake up and see how responsive she is and how her breathing pattern is. The neuro doctor talked to me last night about the possibility of death. He did not give a time frame so I am unsure whether he was just preparing me for the road ahead with the evident mito problem or real soon. He just said what we pretty much already knew. The mito problems causes problems with a lot of the main organs and since her liver, kidney, stomach, and brain were sick right now it could lead to that. One thing is her stomach is tolerating the tube feeds still and pushing everything out as it should. We are thankful for that. The brain issue is that the one side where the seizures have been looks better but still not perfect and the other side the waves are slow. He did not say that she was brain dead or on the way to that - just that it was slow. He said when the organs do this with mito death usually followed but still no specifics. He said we will see what the MRI showed and what happens. Please keep her and us in your prayers. Thank you very much.
All her vital signs were doing pretty well other than the heart rate being up from the fever and infection. Although her resp rate was ok her breathing pattern was not normal. And she had been totally out of it all weekend and still having the seizures so the neuro wanted to put her in ICU. They plan on doing a MRI and knew she would need to be sedated for that but were leery because of her breathing pattern. They also said we had 3 choices. Keep giving the seizure meds that knock her out and she may stop breathing. Do not give them to her and she would keep seizing. The 3rd option was to put a breathing tube in which would enable them to keep giving her the meds. So we did the breathing tube.
We already knew her liver was not functioning well and this past week her kidneys had problems probably due to one antibiotic that she was on for a while. Then of course her brain is having issues due to the seizures. We are hoping that once the pneumonia gets cleared some that she will improve her breathing and stuff. They have her sedated at least for a couple of days so she can do the MRI and rest while the breathing tube is in. Then they will try to let her wake up and see how responsive she is and how her breathing pattern is. The neuro doctor talked to me last night about the possibility of death. He did not give a time frame so I am unsure whether he was just preparing me for the road ahead with the evident mito problem or real soon. He just said what we pretty much already knew. The mito problems causes problems with a lot of the main organs and since her liver, kidney, stomach, and brain were sick right now it could lead to that. One thing is her stomach is tolerating the tube feeds still and pushing everything out as it should. We are thankful for that. The brain issue is that the one side where the seizures have been looks better but still not perfect and the other side the waves are slow. He did not say that she was brain dead or on the way to that - just that it was slow. He said when the organs do this with mito death usually followed but still no specifics. He said we will see what the MRI showed and what happens. Please keep her and us in your prayers. Thank you very much.
Saturday, February 7, 2009
Doing Well Waiting on the Big Plan
Savannah has thankfully been doing well with the tube feeds in her stomach!! She is up to the full amount of feeds with no stomach bloating. They still have her on the strong stomach antibiotics which they will take her off to see how stomach does then. If it bloats then I am assuming they will put it back on in a hurry. They started her on a soft diet of mashed potatoes today to see how she tolerates that- of course mommy was afraid to give her more than a few bites at each meal. Eventually they will decrease the # of hours they give tube feeds to stimulate hunger to see if she will eat enough on her own where they would only have to tube feed at night or even less during day.
She is still having issues from blood not clotting enough which is coming from her liver not producing enough. The big plan right now is to give her something wed morning to make blood clot long enough to do some cutting. They will do a muscle and skin biopsy for the mito, insert the feeding tube in her stomach, and do liver biopsy to look for the problem there. I am assuming that she will stay in the hospital while they find the liver problem and to make sure she continues to do well with the tube feeds. The therapists told the doctors she would need rehab when she goes home- she so wants to walk and ride the bike but after laying in bed for a month her muscles have gotten so much worse. She cannot even sit up by herself unless supported by the special chair they have her in. Yesterday when she worked with the therapists they sat her up and let go to see what she would do. She literally fell face first where her whole body was laying down kind of sitting on her legs. They got her special chair to sit in and asked her to sit up so she could get in it. She actually pushed up on her arms and hands kind of like a baby does when learning to push themselves up and almost got to the complete sitting but could only hold it for like 5 seconds. She will have a lot of work ahead of her but she is strong and a fighter so she will get through it. We praise God for all the progress she has made so far. He has brought her through many obstacles the past 7 weeks.
The test for the MNGIE mito disorder was negative so that is a good sign although it still leaves us to no answer yet. Her seizures seem to be under control. She is wrapping all the doctors and nurses around her finger which if you know her you know she is excellent at this. She just loves everyone and can make anyone fall in love with her. She is still begging her dad to take her home whenever she sees him. She is up to 41 pounds! She still enjoys all the visitors that come to see her and we thank everyone who comes to see her. We would also like to thank those who have brought her and the family things. We greatly appreciate it and we also thank you for your prayers. Please continue to pray especially during her sedation on wed with the blood clotting problem.
She is still having issues from blood not clotting enough which is coming from her liver not producing enough. The big plan right now is to give her something wed morning to make blood clot long enough to do some cutting. They will do a muscle and skin biopsy for the mito, insert the feeding tube in her stomach, and do liver biopsy to look for the problem there. I am assuming that she will stay in the hospital while they find the liver problem and to make sure she continues to do well with the tube feeds. The therapists told the doctors she would need rehab when she goes home- she so wants to walk and ride the bike but after laying in bed for a month her muscles have gotten so much worse. She cannot even sit up by herself unless supported by the special chair they have her in. Yesterday when she worked with the therapists they sat her up and let go to see what she would do. She literally fell face first where her whole body was laying down kind of sitting on her legs. They got her special chair to sit in and asked her to sit up so she could get in it. She actually pushed up on her arms and hands kind of like a baby does when learning to push themselves up and almost got to the complete sitting but could only hold it for like 5 seconds. She will have a lot of work ahead of her but she is strong and a fighter so she will get through it. We praise God for all the progress she has made so far. He has brought her through many obstacles the past 7 weeks.
The test for the MNGIE mito disorder was negative so that is a good sign although it still leaves us to no answer yet. Her seizures seem to be under control. She is wrapping all the doctors and nurses around her finger which if you know her you know she is excellent at this. She just loves everyone and can make anyone fall in love with her. She is still begging her dad to take her home whenever she sees him. She is up to 41 pounds! She still enjoys all the visitors that come to see her and we thank everyone who comes to see her. We would also like to thank those who have brought her and the family things. We greatly appreciate it and we also thank you for your prayers. Please continue to pray especially during her sedation on wed with the blood clotting problem.
Wednesday, February 4, 2009
Still Here
We are still here. So far she seems to be tolerating the tube feed to stomach while still on antibiotics. She has complained some of stomach hurting but it seems to be when she needs a bowel movement. Those are starting to come around also. Her liver is still producing but not high enough so that is making her blood not clot so they are still holding off on the muscle biopsy. They started her seizure meds 3 x day yesterday since she had begun still having seizures. She had about 4 that lasted 25 seconds each in a length of 4 hours. They finally gave her ativan to stop them yesterday around 1 and she was out most of the day yesterday. Still no word on the mito tests that are out. They also did the 24 hour urine test for the wilsons disease that has something to do with liver. That will probably take a week or two also. Thank you for your prayers.
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