Remembering Savannah

It has been a while since I have written anything on here. Everyone is here doing okay. This time of year is especially hard for us as this was the time of year when Savannah started going downhill really fast. It feels so weird and wrong not to have her here with us. There are times when we still do not believe that she is really gone. For those of you who were unable to come to the funeral, let me say that she looked so peaceful and beautiful. My sister fixed her hair and did so well on it. She was dressed all in purple ( her favorite color) and Hannah Montana clothes along with the frog socks her favorite teacher ever gave her. Preston and Aimee stuck a note in the casket telling her how much they loved her along with a sucker : ) We were saddened to have her gone but we also know she went through a lot especially the last 4 months of her life.

There are times when I think I could have done more although deep down I know that is not true. I often thought to myself that I could have sucked her trache out more or spent more time with her. There are times when I wonder if she really knew how much I loved her especially when I think about the times when she was healthier and I would fuss at her for doing something wrong. I know that is not the case. A thought I had the other day is that children are helpless. They expect you to take care of them and they depend completely on you.

Aimee and Preston talk about Savannah often. They will tell you she is in Heaven and that she is an angel. I am doing okay most of the time. I still tear up every time the main song that I picked for the funeral is played "With Hope" by Steven Curtis Chapman. And there are times when I really let myself think and then I get emotional. We all miss hearing her talk although we never ever thought we would say that when she was here talking our ears off. Aimee is starting to have a little Savannah come out in her. She is in Savannah;s room. All of a sudden she wants to stay up late like Savannah did, talks a lot more like Savannah, just different thing that remind you of Savannah. We swear sometimes that Savannah is whispering in her ear. There are times when you swear she is in the room with you like doors closing and her picture falling down.

Savannah Rose Darrough

Savannah passed away this morning around 8:30 am. I found her this morning around 7 am and she had been throwing up a lot and her stomach was really bloated more than I had seen in a long time. I saw that she looked real pale and blue so I called EMS. When I did her oxygen level was 52 - when EMS came the monitor was not registering so I guess she was starting to have trouble with her heart. Before we even left the yard her heart stopped. They worked on her on the way to the hospital and about 10 min at the hospital. Although we will miss her a lot, we know she is better off. We know that she is walking, talking, and playing like she has not been able to do for a long time. We know she is happy and in no pain. I believe that she held on a little longer to come home and spend time with Preston and Aimee and the rest of her family. She did get to do that for 20 days and I know she enjoyed that. She interacted with them and talked some to us. It was a blessing to have her the extra time. There were several times when we thought she would pass during her hospital stay but she fought and held on. Thank you everyone for the prayers and please continue to pray for peace and acceptance for our family and friends. We come out of this knowing how many lives Savannah touched and that she loved many. She drew many people in to love her as well. She had a lot of strength and fight for a 9 year old girl.

Savannah is Home

Most of you already know this but Savannah came home on Friday. She is doing okay with no problems. She is actually talking more. She is reading out loud again with a little help with turning pages and sometimes holding book depending on the size. I believe she is enjoying being home hearing and seeing Preston and Aimee. We are still waiting to hear on private nursing so right now it is mainly mommy doing the care. Thanks to everyone for the prayers and support the past 3 1/2 moths. Her teacher and I talked today about how much of a fighter she is and that she surprised everyone. In fact today when her teacher came to visit she was being Savannah and repeating the same thing over and over asking for a game. Her teacher said she would bring one next time and Savannah said I cant wait. It was so Savannah.

Getting Ready

We are all in the process of setting up and getting ready to have Savannah brought home. We are doing the training to care for the trache and medicines and other things. Last Friday we had a lot of people from a school group and church help unpack the house. We are very thankful for that. I have done a lot of my training - still need to change the trache a couple more times. My parents still have quite a bit of training to do. We are also waiting on the equipment to come in and trying to figure out a way to have everyone in car at same time. They said the special needs car seat will be so big and wide that 3 car seats probably will not all fit in back seat and that we may have to put hers in front seat which is really not the safest option. We are guessing to go to church we will have to ride in groups or something. We have not figured that out yet.

Thank you everyone for the continued prayers. She is really enjoying herself and her visitors. She is able to color a little with the assistance of a hair bow holding the marker for her and putting her finger and thumb in between it. Other than her medical issues and her weakness she is much like her old self smiling at everyone that walks in the room. Her daddy spent a couple of times up here for long periods and I was able to go to house and work some. They really enjoyed the time together and he got her making her silly faces. It was good to see that.

More Setbacks

It seems like every time we get close to going home something else happens. She had stopped running a fever with this yeast in the bloodstream and was doing a little better. Yesterday she started running low grade fever off and on. The results of the ultrasound showed the fungus did go into balls and hide in her kidney. So now instead obeing treated for 7 days she will be treated longer. So I guess we will be at least 2 more weeks. Sometimes I wonder if we will ever go home. I am wondering if they will change at least 1 antibiotic since she is still having fever.

Revelations 3:8

When God leads you to the edge of the cliff, trust Him fully and let go. Only one of two things will happen -- either He'll catch you when you fall, or He'll teach you how to fly!
God is going to shift things around for you today and let things work in your favor. God closes doors no man can open, and He opens doors no man can close.

A Little Better

Savannah has been doing a little better this week although still has some complications. She no longer has the fever and bp is back up although she is having swelling problems from the extra fluids again and her temp was a little low today. She is still being treated for the yeast in blood. After the treatment for it they will do more cultures to see if it cleared up. While it is being treated the yeast goes into balls apparently and hides so they did an ultrasound today to look at the organs to see if it was hiding there. We have not got the results yet. She is trying her best to talk and we are going to have to learn to read lips until she can do it well. There are many things that we will have to get used to that will be hard but we will adjust as extra time is something we did not think we would have a few weeks ago. We thank God for all the answered prayers and that we will have some more time with her. We know that it is not a cure but it will give us some more needed time with her and to prepare as well. What is really hard is not having her usual motor mouth that we used to get tired of and for her not to be strong enough to hold her books or markers. Anyone that knows her knows those are 2 things she always wanted to do. Although we yearn for her to be able to do those things we are grateful with the condition she is in and able to be happy some and communicate.

She is still sitting in her therapy chair inside the wheelchair daily at least 4 hours a day watching movies and watching people. Even though she cannot talk well yet she does enjoy watching people. She went to a St Patricks Day party yesterday and could not really squeeze the playdough they gave her or color well without help but she did enjoy sitting there watching. We pray that maybe as time goes by that she will get at least strong enough to color and hold her books to read. If not that is ok too. We know that the treatment of her at home will be hard but it will be well worth it and we will continue to pray for her and be thankful to God for every day that we have with her. We are thankful for the joy she has brought to many lives.

There are some obstacles we will have to figure out. We are thinking somehow we will need a van not only for her wheelchair but because of the fact of 3 car seats trying to get squeezed in a small space in the car. There simply wont be enough room for all the kids and 2 or 3 adults. We will have to figure that one out and see if it would be something affordable for us. Another issue is the car seat they will order for herewill take 6 weeks to come in so in the meantime we will need a 5 point harness car seat without shield until that one comes in. We hate to buy one to use for 6 weeks but we may have to. If anyone knows of one that is not being used that has not been in accident that we can use until then please let us know. Thank you everyone for your prayers and assistance. Hopefully God will answer prayers again and show us a way to get all we need for her at home- it would be nice if somehow she can attend church some and go out and have a little of what she likes again back even just going to the park and watching people sitting in the sun. I think she would enjoy that as well. Thank you again for the prayers. We are confident she is here because of them and He has given her so much strength and fight for a little girl.

Savannah Protests

This week so far has been a better week for Savannah. She had her baptism and another EEG on Tuesday which showed no seizure activity which means the meds are working. She went to a trache collar that gave her oxygen and humidification. She is breathing on her own and now does not need the oxygen just the moisture. She is finally starting to talk above a whisper some and is totally being Savannah. She is protesting therapy a lot and protesting having to go to bathroom in diaper. We are so thankful for the turn around of her condition for now and to hear her talk and complain. The diagnosis has pretty much been confirmed although we are still waiting on the gene testing. Her muscle was depleted of mitochondria by 70 % and the liver by 75 %. We do not know yet the length of time she has just that she is truly a fighter and we will enjoy the time we have with her. We have begun the training for the trache. Mommy has changed the ties that hold it on twice and suctioned her several times. Nana and Papa have suctioned once each. The part Mommy dreads is the changing of the trache tube. I guess once I learn and do it a lot it will be a piece of cake. We have started talk with therapists and social worker about what equipment is needed. So far we know the trache and feeding things, bath chair, reclining wheel chair, therapy chair, and car seat. Thank you for the many prayers and assistance.

Savannah Smiles Again

Savannah is doing pretty good post trache but still using vent. Right now her small leak has gone to a bigger one and if it does not improve by a week post op which should be Wednesday or Thursday she may have to go back to OR to get bigger one put in. She is smiling a lot during the day especially when anyone else comes in. When getting a bath she was rolled on her side so her back could get done and I guess it was taking too long because she rolled back onto her back. She sat in her therapy chair again yesterday for about 2 hours. She started running a fever yesterday and the cultures showed it was an infection in the picc line. So they started her on antibiotic again. Thank you for the prayers

Trache

Savannah had the trache installed around 11 am this morning. Right now she has both the trache and the vent. There is a small leak but the surgeon said that should go away once the area heals some and seals in a few days. Her face looks better without the tube down her throat. She is still alert and wanting to watch whoever comes to visit. Thank you for the prayers for the past 3 months. We know this gives us a little more time with Savannah and are grateful for any time we have. We also pray that she continues to touch some more lives and maybe bring others closer to Christ through the evidence that prayer works. The doctor told us this morning having the trache in will make it easier to try to wean her off vent. We do not know . She may need vent still all the time, may not need it , or maybe just at night.

Pray for the family as we go through trache training soon and learn how to care for it. It will be a lot of work at home to care for Savannah but we will learn what we need to.

Our Decision Right Now

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.

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.

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.

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.

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.

Old Savannah

The past few days have not been too hard or active. On Wednesday she started having a few seizures - a total of 3. The dilantin for the seizures that had been way up had gone down enough and the Keppra that she will continue to be on was not a high enough dose. They increased that yesterday. She has been sitting in a therapy chair on the bed the past few days. On Wednesday night they started her on jello and clear liquids. They started tube feeds back tonight to the stomach doing all food slow. They are looking to see if she can tolerate feeds better while on the special stomach antibiotics. Then if she tolerates the feeds well and they stop the antibiotic then she gets worse then they know she needs the antibiotic. Hope that makes sense. If she does not tolerate to stomach before stopping antibiotics they will try to the intestine. Last night she started getting back to old Savannah. She started whining about stuff and she was awake until 2 am talking. Today she was real talkative also . She has really been protesting her therapy just because her legs are a lot weaker than before from not using them for over a month.

She wants to do stuff like walk and ride the bike until it actually comes down to it. Yesterday and today they started working on getting her to try to stand and that was a struggle. She can not stand well even with assistance. Please continue to pray

Moving Along

The past 2 days have been pretty quiet. She was awake most of the day yesterday and awake all day today. They put her in a therapy chair and strapped her in for a few hours yesterday and the same thing twice today. She seems to like it and it helps build her upper body strength which she needs badly especially in her head. She held her head a little better today than she did yesterday. She will probably stay on antibiotics for a total of 14 days. We are waiting to hear from gastro about whether they want her to always have a low dose of antibiotic to keep bacteria down which will help keep the gas down. They think the reason she got all the gas was that the bacteria built up from the stomach not moving things through well. The pediatric resident seemed to think they may try low dose of antibiotic with tube feeds to see if that allows her to tolerate the feeds. We are praying that is what happens. Otherwise they may never let her eat or tube feed again and only do the nutrition through veins. I hope that does not happen since that will be so hard on her to not be able to eat after 9 years of eating. They siad today nobody really knows what they will do yet though- basically day by day.

Quiet Day

Today was a pretty quiet day. Last night her central line that was to make it easier to get all her meds through fell out. They did not want to put another in for some reason - I am thinking because you can only have that type for a short period of time. The TPN nutrition that she gets through her veins is supposed to be 24 hours but now we will have to turn it off whenever she needs the meds. They increased the rate of it so when she is getting it that it will go in more. She was awake again today from 8-4. Jeff brought Preston and Aimee to see her today and she really enjoyed that. We will see this week how much therapists will do with her now that the swelling is down and that she is awake.

Since she will probably have a long road ahead of her according to the doctors and I am guessing a lot of blood work they are talking about putting a port in her which will be under skin in chest to give meds if needed and to draw blood. They will not do this until they know she is stable enough as it has to be done under sedation. Their hopes are that they can do that and the muscle biopsy at the same time.

Thank you for your prayers.

A Little Improvement

Her levels of the seizure meds that were only being given until the other got in her system went down a little over the past 2 days. She still does not have it all out of her system but it helped her stay awake a few hours Friday evening and awake for 8 hours Saturday. She is having a little leg twitching but nothing for a long period of time. We are unsure whether they are muscle twitches or if they are seizure activity. The neuro had said they did not want to give her ativan to stop seizures unless they last 10 seconds or more. We are unsure whether if maybe the Keppra seizure meds that she will stay on is a high enough dose now that the other is getting out of her system. We will have to keep eye out on it.

The fluid she has been retaining from the leaky vessels seemed to be improving some especially Saturday. Her face is just about normal now and her hands have finally gone down some. Friday night her hands were still puffy but not as tight. Yesterday they had gone down a lot so you can even see her knuckles. Her feet are still puffy today although not as tight. She seems to be slowly making progress although I hate to say that too loud.

When she saw both Jeff and my dad she asked both of them to take her home. Please continue to keep her and us in your prayers. We hope that this is just muscle twitching that she is still having or that the dose just needs to be adjusted. From what I understand this seizure medicine that she will be on at home is the best one in not making them tired. I think it can still be moved up some if needed.

Still In Need Of Prayer

Thank you so much for all the prayers and please continue. She is having more problems added to everything. They said her liver is not functioning properly. They did not say she needs a transplant or that it is totally not working. All I know is that the bilirubin is elevated some and that the enzymes the liver normally put out are elevated some. From what the neurologist told me this afternoon the enzymes are elevated but not so high that they are alarmed or are in a rush to do anything. She got the catheter taken out today since she had yeast infection in urine. She is going still though and that is a good thing. She has had several wet diapers and a couple of bm. We are not sure whether the liver issue is from the infection or if it was already starting to not function. Please pray that it will turn around for her. She has had a tough month and I believe that she will continue to be strong but will continue to need prayer. Please pray that Jeff will gain patience as he is getting frustrated that it has been a month and just does not understand that it takes time and that the doctors are doing what they can. I tried to explain it to him as best as I could. One good thing although I hate to say it out loud or to write since everytime we say something is going good it goes in the other direction- her white blood cell count went from 25 yesterday to 14 today. Normal they say is about 10. She did wake up for the therapists today and got mad at them so that is a good sign. They were working her legs and brought them up to stretch the hamstring. She cried out and said " You broke my foot" I guess that is what it felt like because of her feet being so swollen. She went back to sleep after that but has been awake some tonight. She has been talking and asked if she could eat now. Of course no doctors were in here to see it so they will not believe it. Her breathing is slower than normal and she has been running a lower temp. Hopefully that is from infection and it will improve.

Urgent Prayers Needed

Sorry for the late blog. I did not get a chance to write anything yesterday. A lot of things have gone on in the past few days and Savannah urgently needs prayers. She has a lot of fluid retention from the leaky blood vessels. She was weighed today and it said she went from 36 to 49 pounds. That is a lot of buildup. We would love for her to weigh that much but know it can not be possible. Her stomach is still distended. What is actually going on likely from an stomach infection of some sort is that her intestines are leaking bacteria into the abdomen which leaked gas into the liver. This is dangerous so they put her on 3 antibiotics that are for killing severe stomach issues. She was not urinating much yesterday caused by the leaky vessels not knowing where to send the fluids. It was a little better today but not like it should be. I think the most severe issues at hand are the fluid retention and the stomach leaking problem. Please pray urgently that the antibiotics will help with this and that she will recover.

Quiet Day

Today has been a pretty quiet day. They put an air mattress on her bed because of some sores on her tailbone and she had gotten a yeast infection on her back and under arms from the sweating she had been doing. Her belly is a little distended so I asked for a laxative. I would rather get it out that way instead of her throwing up. I do not think it is her totally not tolerating feeds. I think it may be her stomach still adjusting to anything that goes in. She is still sleepy from the too high levels of the one seizure medicine. They are hoping that they will not have to give that one to her anymore so please pray that the one seizure medicine that she is on will help her enough where she will not need that one. That is pretty much all I have today. Thank you for the prayers and assistance.

New Room

We are now in our 5th room since coming to the hospital in December. Hopefully we will not need ICU again. She is still real sleepy from the Dilantin, the one that goes in IV to prevent seizures. Her levels of that were too high because the protein in your blood helps it move through the body and her protein was low so it was staying in her brain. They stopped that one for now since her levels were so high. Hopefully once it goes down she will not need it and only need the one she takes by mouth and will take whenever she goes home. The nurses on this side were all happy to see her and came to see her. I am sure once word gets out some other nurses and doctors will come see her. She is as well loved here as she is at home and school. Those of you who really know her know that everyone grows to love her quickly and she does the same. Thank you for your continued prayers. Her room number is 5505.

No More BP Medicine

As of yesterday, she is off the BP medicine. She had the catheter taken out but was not urinating on her own yet so they put it back in. They said that it could be due to her not being awake enough to realize. We are hoping that it is all it is. They decided to take her off the antibiotics since she was not running a fever and white blood cell back down. Okay to explain the seizure medicines a little better. They gave her the ativan to stop the seizures the other day which knocks her out, one they put in IV that will prevent the seizures a little faster that she will eventually go off of, and one called Keppra that she takes by mouth that takes longer to get in system and start working since it is taken by mouth. The ativan was supposed to only be a one time thing and they stopped the fast working IV one also yesterday morning and about 2 pm yesterday she began mild leg twitching again. So they gave her another ativan and more of the fast working IV one until they are sure the other one is working good. They said she would be here long enough to stop the fast working IV one before she went home. That is basically everything from yesterday. I will give update in a little while after they make morning rounds. We are hoping she may be in regular room sometime this week since the main reason they kept her in here was the BP issue.

Confusion

Sorry about any confusion from the last blog. I meant to say that she will go home eventually with a anti seizure medicine that will not knock her out. She still has at least a few weeks left in here.

Mistake

I made a mistake in the last blog. I meant to say that she will go home with an anti seizure medicine that will not knock her out. Sorry about that.

Here For Few More Weeks

It appears that we will be here for a few more weeks. That is fine with me as long as we find out all that is wrong with her. We found out today that they were mild seizures after all. We do not know whether they come from infection or if they come from the possible mito. They are still weaning her on the bp medicine. They gave her some medicine to stop the seizure along with 2 others to prevent them. So she is pretty much knocked out. They plan on only giving the one to stop them that 1 time and then whenever she goes home she will only go home with one of the anti seizure meds that will knock her out. She did get a bath and her hair washed by the nurse this morning. She also got her hair in a ponytail and braided. She seemed to like that. She has gotten some back sores so we are turning her. The stomach medicine is still helping move things through and so far she seems to tolerate the feeds. She ate a little jello and ice cream at lunch but was knocked out at supper. Please continue to pray -it seems we are slowly getting answers.

The Latest

She did not get weaned off bp meds any more today. Please pray that her bp will cooperate so that they can wean her some more off of it. Please continue to pray that she will recover from all of this infection that she has been fighting. We are hoping that the muscle spasms that are over her whole body are from electrolyte and vitamin defs. They said it could be. From what I read there are several of them that can cause it. I know she probably has a mito problem and we will learn to deal with that but I really hate seeing her have to go through these so I hope they will cease and that she will begin to get stronger and get her upper body strength back. She still cannot support her head. She has gotten some blisters and chafing from laying on her one side. Therapists started work again yesterday but will be gone on weekend. Speech therapist came to make sure she did not have any swallowing problems. They did this by giving bites of ice cream and applesauce. They also gave her some water. They listened to her throat while she swallowed to make sure she did not aspirate. She passed the test. After they finished she asked for ice cream. This is either because she is hungry for real food or that her stomach is feeling some better than before we came. She always loved ice cream- what kid doesn't- but would not even eat that at home before we came. They said since tube is in intestine and stomach has shrunk to go slow because she may have nausea at first. Please pray that goes well.

Update

They plan on doing the muscle biopsy Mon or Tues. She is still having muscle spasms or reflex activity whichever it is. While I went down to eat, she pulled the feeding tube out again. They gave her albumin to help with blood pressure this morning. They also have started her on co enzyme Q10 from what I understand is what they give people with mito.

Worn Out

Savannah seems to be more tired but we are thinking these muscle spasm episode are wearing her out. They really jerk her whole body at times. It has to be scary for her and it is not easy to watch. They finally ran a vitamin panel after me asking them to for days. They want to do MRi but are waiting until off bp medicine. Her muscle spasms are not as bad when sleeping. I guess due to relaxing. She is up to 60 ml on tube feeds again. So far her stomach is measuring the same as before she started so hopefully that will mean her stomach will tolerate. Also they say the tube is far enough in the intestine this time. The doctor told me yesterday that he could test until God comes but he did not want to do that. He wants an answer. Therapists came and worked with her legs today and got her to sit up for a minute. She still cannot hold head up so I am pretty sure she would not be able to eat solids even if she felt like it. They are going to do swallow test. I bet right now she will not do good. I think once she gets stronger she will though.

A Little Better

She has been doing a little better through the night. All I know so far is what the nurse told me. I am not sure how much blood is still in urine but her blood is clotting a little better according to her. She also said that the white blood cell count is lower which should mean whatever mystery infection she had is getting better. Her lactic acids which had been really high are back down some also. Remember this is all coming from nurse but she got it from computer so I guess it is right. They have weaned her a little more from the bp meds and it seems to still be ok. They have her on 50 ml of tube feeds so hopefully this time around she will do ok. They said the tube is further in her intestine so it should be alright.

The Latest

I talked to the doctor tonight and this may be some good news. We do not know for sure though. She said that the neurologist briefly looked at the EEG Brain Waves when he came in here and said from what he saw quickly that it may not be seizures after all- maybe not even the one from Sunday. It may all be muscle related. I know that is not great news but I think it would be better than seizures. They said most of the time with seizures that you are not alert, awake, or able to talk. She has been all 3 today. She was asleep with them on Sunday but the reason they think it may not have been one is that the seizure medicine they gave her to stop them did not work at the first drop like it should but after they had given it to her. Since she has been awake with these today, they have been scaring her a little. Whenever she has these episodes her heart rate goes from 115 to about 138-200. However, if you hold her hand it does not seem to rise as much. She told the nurse tonight when she was having one "I'm shaking." She is asleep now and does not seem to be having them as much except for her leg. I would like to thank everyone for their prayers again especially those who do not even know her. It really means a lot to us. I also would like to thank those who have helped us or given the kids things.

Update

They gave her a plasma transfusion for the problem with blood not clotting well enough to help prevent internal bleeding. They noticed blood in urine right after they started it. They said it can take a while for it to get in her system and that it should help a lot including stopping the bleeding. She has been awake all day long talking a little. The nurse tried to take her temperature by mouth and Savannah took it out of her hand and held it in her mouth by herself. They plan on doing a muscle biopsy here to be frozen and sent to Columbia to test for mito. It is not always as accurate as going to Atlanta and doing a fresh biopsy. However, even if we could afford to go there she is not well enough to go right now. They restarted the tube feeds and are going up to 60 ml. We pray it will work this time. They started doing a 24 hour EEG to look for seizure activity now that she is not on medicine for that. Thank you again for the prayers and please continue.

Restful NIght

We both had a restful night other than when the nurse got bored and decided to clean the room at 5 am. They started the weaning of the blood pressure meds last night and so far so good. They only decreased it by one I think. This morning she started having movement on left side like she did the day she came to the ICU. It is only on her left leg right now so they are keeping an eye on it and it looks like a muscle twitch. We are hoping that it is all it is. Right now she still has no upper body strength and cannot support her head.

Little More Alert

Today was another busy and stressful day. After 3 weeks in the hospital her veins have decided they are not going to give anymore blood. They had to actually get blood out of an artery during the night. I did not get too much sleep mostly due to wanting to stay awake to keep eye on vitals. Her rates seemed to be good other than her breathing going down every now and then. Her breathing sounded really bad though and they thought there was an obstruction but it ended up being her holding too much carbon dioxide when she breathed. They gave her some sodium bicarbonate and that helped a lot. She became a little alert during night trying to talk but it was hard with her mouth so dry. Early this morning she was still trying to talk until they gave her the medicine to help prevent seizures and that knocked her out. The attending doctor today seemed really intent on finding the source of all her problems and is bringing in our genetic doctor to discuss the mito problem and see his thoughts. He put a central line for her meds and blood draws. They did a blood culture on her picc line in her arm to see if the infection was there. They started her on slow feeds. We pray it will work better this time and they go slower at increasing it and make sure that the tube stays in intestine rather than going back up to stomach which is what they think it did this past weekend. Earlier today they thought her heart was pumping too hard but an echo showed it was pumping normal. It pumps like the heart of a 3 year old which he said would be expected since she was about the size of a 3 year old weight wise I guess. They did the EEG to check for seizure activity. It did not show any although the seizure meds can sometimes alter it a little. The neurologist did not seem concerned though. Her brain wave signals were a little weak but that could be from her mental status right now, the seziures, the medicine, or the infection. Savannah really enjoys the visits even when she is only half alert. She remembers most of the time who has been her when she is only half alert and remembers everyone else the rest of the time. She is retaining fluid which is coming from leaking blood vessels which causes the body not know where to send all the water or something like that. I could have part of that wrong but not all of it. They said when whatever infection this is begins to clear it should go away. Please continue to pray.

Huge Step Backwards

I am sorry to say after looking like things were moving up that she had a lot of backtracking starting last night around 7. She began to really have tummy pains and throwing up. However, her muscle tone was down again and she could not hold her self up not even her neck. She threw up all through the night but even that was hard for her to do. She did it in her sleep some also. I was up most of the night trying to sit her up whenever I could to help avoid her doing it in her sleep and breathing in because I knew it might bring back pneumonia. The real scare was this morning when I woke up to her having a seizure on her left side. They gave her some anti-seizure medicine and that worked instantly. They took her temp and it was 102.5- now few hours later it is 101. They took her to get ct scan of head and that was normal. They were suctioning her stomach out again and it began to show some blood. The infectious disease doctor ordered a spinal tap to check for meningitis because of her having a fever again. They are checking to see how well her blood clots- it has been low. They are doing some other neurological labs with the blood work and with the spinal tap. Please continue to pray for Savannah and the doctors that we can find the answer. Hopefully it will be treatable and also pray that she has no more complications. She has had a very rough time these past 3 weeks and she was doing somewhat better and we were hopeful that she was turning around. Her body is evidently susceptible to picking up anything at this point. Hopefully she will not have any more seizures. That is a really scary thing - I am sure for her as much as for me. Thank you for your prayers and please continue.

Still Not There

The medicine is helping her to get stuff out but it is still swelling a little. It is not as bad as before and not hard. I mentioned it to nurse and doctors and they do not seem to think it is bad. Please continue to keep her in your thoughts and prayers. We are hoping that her stomach will get adjusted to the medicine and not swell at all eventually. I am sure that it feels weird to have a stomach contract like it should after it not being able to do that. Thank you everyone for your prayers.

So Far So Good

She did well for the rest of the day yesterday. She weighed 37 which is not much but an improvement. Mid afternoon she was allowed to start clears, including Jello. I was so afraid to even give her Jello because I was afraid her stomach would start distending again and start the whole cycle over. But maybe having the tube at intestine combined with the medicine to help her stomach is helping avoid all that. Still, I only gave her like 7 bites. I thought it was best to start out slow instead of stressing over it and making her eat it all. I think it went well because she did not move hands around mouth while eating which she had been doing even at home which like I said before indicates she is not feeling well. So the medicine must be already helping keep stomach empty and she had 2 more bowel movements last night. She did get a little distended but not much at all. The doctors were not worried and it went down after she went to the bathroom. Please continue to pray that the medicine continues to help her stomach not distend and squeeze stuff out as it should and that she will continue to eat without it bothering her.

Slowly Improving But Still Ways To Go

Savannah is starting to show some improvements. Her pneumonia is clearing up. She is hardly coughing at all now and when she does it is dry rather than the crackly kind she was doing. She is tolerating the feeds well and is currently at 35 ml hour. Earlier all she could get to was 15. Please pray that when they offer her food she will have the desire to eat and eventually begin to eat like she used to. I am hoping that now that she is on this new medicine to help her stomach contract and move things out like it should that it she will be hungry and want to eat. It would be wonderful and a lot less stressful if she would eat willingly. They talked about maybe having to put in tube in stomach for extra nutrition even if she eat but maybe by the Grace of God she will eat enough to not need that. It is entirely possible that her stomach not emptying was the whole issue and that the medicine would help that. I would also like you to pray for my friend Kara's brother Brian who in mid December was in a car wreck and injured his spine and had some complications from that. He was just released to rehab so please pray that he continues to improve and be able to handle all that he will have to go through on his journey to improvement. Please also pray that Savannah will get some strength back on her legs. They are still weak like jello. She protests walking even short distances. I guess it was the sitting and laying when she really did not feel well. She did pedal the bike 1 lap last night so that helped some. She also tried to trick the nurse- one she had not seen before- into giving her chocolate ice cream - did not work though thanks to me.

Moving Along

Here is what today has brought so far as of 1 PM. Her hemo was low so they are going to give her a transfusion probably around 3. It was not too low right on the borderline so they are only giving her 1/2 bag. I think the normal is 2-3 bags. She got to have the tube taken out that was decompressing stomach so hope it can stay out. She is getting 20 ml a hour for tube feeding - they plan on increasing it by 5 every 6 hours or so until they get to 70 ml. They started her on the medicine to help her stomach contract- do not know if it is working yet. Please continue to pray for her and that this medicine will help. Still waiting to hear when they will do the gastric enema to investigate the constipation issue.

The Plan

Okay, here is what we found out so far and what they have planned. As expected, the stomach is not strong enough to squeeze out food and stuff like it should. They did not get to do the gastric enema test they wanted to do because of waiting to get all the barium out from the other test. They plan on doing that tomorrow. This is the plan so far. They are giving her a medicine - not yet started- to help her stomach contract to move things along better. They are going to keep tube feedings and eventually cut out the nutrition she has been getting through veins. Their plan is to take baby steps to getting her to try to eat by mouth. They seem to think that the medicine will help her stomach do what it is supposed to do. They seem to think that it may be an underlying problem due to her low muscle tone. Please continue to keep her in your prayers that it will help and that she will be able to tolerate feeds and eventually eat solids. Also pray for Jeff and help him to understand that they are doing what they can do and that tests take time.

No News

Sorry for the late post but we were both tired yesterday. I also was trying to wait until I knew something else but I will write what I know so far. Yesterday they started the upper GI at 830 and we still have not heard full report. The little bit I did hear yesterday varies. I know some barium backed up into stomach which from what I understand is normal but usually your stomach is supposed to squeeze stuff back out. The pediatrician yesterday seemed to think that it was a temporary thing from a virus and seemed to think it would improve. They may try a medicine to make it contract in the meantime. They are also planning on doing gastric enema soon to check out the constipation issue. Please pray that these tests will reveal an answer and that there will be a good treatment for them. Pray that after all this she will become willing and able to eat solids and thrive. Thanks for all your prayers.

Still Waiting

We are still here waiting on a x ray and upper GI to be done. Surgeon said that he thought her bowel was not working right or was functional obstruction. I guess he could be wrong though. I am hoping that when they look they find something else and fixable. Please pray they find what is wrong with her and that there is a treatment for it. Otherwise, she is feeling more like herself. Thank you for your prayers.

Tests Scheduled

Not too much to report today. She was Savannah again today, alert and doing what she always does- read, color, and watch movies. She seemed to tolerate the feeds yesterday that went straight into the intestine as far as we know. They raised the speed a little today by 5 ml to see how she does. The plan is to go to 20 ml tomorrow if she still does well. They are planning on doing some more GI images tomorrow or Tuesday whichever day they can get her in. I believe they are doing an upper and lower GI series. If the stomach is not emptying I think she has to be fed mainly through tube going to her intestine. I hope that is not it because she would not be able to eat many solids. Hopefully we can find whatever it is though.

Feeling Better

She is starting to feel a little better today. She is getting more like her talkative self. She sat up and read books and watched movies all day. She blew some bubbles to help her lungs. They were not letting her drink or eat all day to test her stomach out and find out if it is the problem. She was not happy about it and kept asking for something. She also said she was hungry but who knows if she would have really eaten. Hopefully after this trip she will have started eating again. Her cough was a lot more productive today and the new antibiotic seems to help. They are testing her for immuno deficiency. If she has no fever for 2 days they will wean her off the other 2 antibiotics and just keep her on the new strong one. That is all that I have to report today.

Still Looking

We are still here looking for answers. The good thing is that the pediatrician on her case this week seems determined to find an answer for her stomach issues. Nothing much is showing up on blood or stool labs. X ray is basically showing air and stool. She said it could be one of 3 things - the constipation since there was so much of it, an obstruction so small they cannot see it, or the stomach not emptying properly which is what I believe they are leaning towards. They are not doing a tube feeding tonight and I think are doing an upper GI test tomorrow. The next tube feeding they do - I think they are bypassing the stomach and going lower. If she does well and not get air in stomach or full belly then they will know stomach is the problem. From what I read online, if that is the problem she would have to eat smaller meals, have a tube perm in stomach, and maybe take meds. She was still running a fever today although on 2 antibiotics so they are bringing in infectious disease doctor. They also ran labs to check for infection in blood, mrsa. We are hoping that none of these are present and maybe her body is just taking longer to react to medicine. They started a 3rd antibiotic that they would have to use if she had mrsa just in case. Thank you for your continued prayers and assistance.

Main Concern

They started suctioning her stomach again today due to her stomach going back up a little. She had to have some oxygen this morning around 5. They are thinking the stomach being distended a little again is part of that. I am still concerned about the eating and stomach issues but I think my main concern right now is the pneumonia and the fact that she is still having fevers from it although she is on 2 antibiotics. Please continue to pray for her getting the pneumonia gone completely and also what is going on with the stomach.

Waiting Around

The doctors had thought that she was all cleaned out because they suctioned so much out and she had 6 bms but I tried to tell them based on their history that I did not think that she was. For those of you who do not know her full history she has always thrown up when constipated real bad and if she cannot go to the bathroom. They had started the tube feeding back last night because they thought she was cleaned out. Well today she threw up and it smelled and looked like bm like I had told them it had been looking. Sorry a little too much info. Anyway, the nurse came in and said it smells like poop. So the doctor saw it. Right now they are taking her off the tube until she is cleaned out and are giving her a suppository. I plan on asking if maybe her body had gotten adjusted to the laxative that she takes. It is possible that it had and that is why she got so backed up. They are still going to test her for something called Herschsprung Disease which is where some nerve cells in colon do not work properly and causes constipation. It would be a good thing if it was just this backed up problem with a good reason for it and maybe a new medicine for the problem.