Just Sitting Here

So far today has been basically a calm day. She was awake a lot of the night. Around 2 am she had pulled the suctioning tube out. They redid it and put new tape on it. Well, but this morning she had done it again but they left it out thinking it was done suctioning. Her belly is a lot smaller and softer. Right now they say they are not going to do another x ray. They think because they got so much suctioned out and that she had 6 bms yesterday that she is cleaned out but I am not sure. If she is she is still complaining a little or whatever caused the backup is still there. Last I heard they are going to test for something called Herschsprung Disease where some of the nerves in colon are not working and they would have to operate for that. She is rubbing her face when she eats like she does when anxious or when she does not feel well. So I do not know if it is still bothering her to eat, or if she is just scared to eat from being so full before. They are planning on asking GI whether to do a scope. They are still doing the nutrition through the vein but they also started the tube feedings again so we will see how that goes. Hopefully we will not have any setbacks.

Better Day

She had a better day today. She is down to 34 pounds. She weighed 40 when she came in and was 38 the night before last which would be Sunday. But they said they expected it to be down today - I guess because they did not tube feed her that night and did not let her have anything at all yesterday. She was awake all day today but complained because they would still not let her have anything to drink. She also was not happy when pt and ot came to work with her. They made her sit up in the bed and she kept crying that she wanted to lay back down. They did get her to put on some socks, get off the bed, walk around the bed with hands held, and get in a chair to sit in instead of the bed. She stayed there until about 6 pm then I let her get back in bed to rest. She did not go to sleep until just now at 730. Her belly looks a lot better but I do not know if it is all cleaned out. Thank you again for all your prayers.

Rough Day

Okay, another day of us both being very tired. Poor Savannah was really having a setback today and a bad day. She did not look well today and was weak again. So far, we do not need surgery! The CT scan of her belly that they did with x ray dye showed that her belly was full of bowel movements. This is with her belly being suctioned out. I do not know if this was part of the problem the whole time but they are cleaning her out with the suction and suppositories. Then I guess they will do another x ray. So right now I think no surgery. She was running a 101 fever all morning and early afternoon but it finally went down on own to 99. They decided to stop the tube feedings and put in a picc line in her arm to put nutrition in that way. If she needs to go home with it then she can but if not she does not have to . If anyone wants to visit that is ok. However, please remember that she is in fragile condition and please refrain from coming if you are sick or have been around illness. Please continue to keep her in your prayers.

More Tests

They are still suctioning out her stomach. It is going slow because it is really thick and it looks exactly how it looks at home when she throws up from the constipation. All this time they have been saying there were no b.m. in there because her stomach was soft but when they saw this they said it looked like bm. I told them that is how it has been for a while when she throws up at home. It is so think that they cannot even get it suctioned out good with the thing. It keeps clogging up. Please pray that it ends up not being an obstruction but something simple to fix because I do not know if she can do a surgery with the pneumonia. They are going to start feeding her through the veins instead of the tube until they can get her nutrition up and figure out what is going on with the stomach. They said whenever she goes home if it is not completely up she can go home with it, but if it is up well enough that they will take it out before she leaves. Her pneumonia has not worsened but did spread into the other one. We do not know if it really spread or if it was just not seen well enough before. I believe they are changing her anitibiotic to a stronger one that they use for walking pneumonia.

Busy Night

Busy night. After we got back from x ray a surgeon came in at 4 to look at her - they are wondering if there is a small obstruction or if she is just not emptying stomach all the way. They did not do the feed at all and are not giving her anything right now. They are using the suction thing that they used on her lungs and they put it on her feeding tube to suck everything out of her stomach. Then they can do a x ray on an empty stomach to look for obstruction. I am hoping no obstruction so she does not have to have surgery but on the other hand if she did it might explain some of the problems she has been having the past month. And if it is a stomach emptying problem I do not know exactly what they do for that. I know there is a med she can take but do not know if she can with her low weight. They started the suction thing at 6 am and we are still working on it. It goes real slow so not to put pressure on the stomach too much. Also she was awake all night - guess all the sleep is catching up to her. She had picked all the tape off her face and just about pulled the tube all the way out.

No Feeds Tonight

They decided to do a belly xray as well. Her belly has still been a little distended but soft. But they heard a lot of activity apparently in there so they did not want to do the feeds tonight in case it would be too much and come back up the tube. Hoping the pneumonia is not in blood stream. She was able to ride to x ray in a chair on her own for the 1st time. Hopefully they will not think it is too distended to continue feeds then they will have to do it through the veins. All her nurses love her and of course she likes them too since she likes everyone she meets. That is all for now - it is 1:30 am and I am exhausted!

Slowly Improving

Apparently her electrolytes are not doing too bad so they will increase the feedings tonight. She started to run a fever today- it is currently at 101. The doctor just came in and said she did not know why she is running one since she is on a pretty good antibiotic already for the bladder infection and pneumonia. And now it appears she has an ear infection as well. The doctor ordered another blood test and urine test along with another chest xray to make sure the pneumonia has not worsened. She does not sound as rattly to me but she does seem to have a lot of stuff to cough up. Maybe she needs a stronger antibiotic. She has been awake most of the day with a few naps. Now at 10p.m. she is wide awake and does not want to go to sleep. She is constantly picking at her face like she always does. She really acted like she wanted to eat today but only would take liquids and jello. I asked tonight why she would not eat the other food and she said it hurt her throat. I think her throat must have been bothering her because she would drink the carnation supplement drink that she had stopped drinking before we came to hospital. So the fact that she wants to drink it makes me think she is feeling a little better and may start eating better soon. The doctor looked at her throat and said it was not red. So maybe it is just sore from the coughing or from ear infection. Please pray that she will be able to eat everything soon and that we can control the fever along with finding why she is having the fever. Please also pray that the pneumonia has not worsen. She is doing better so I hate to have another setback. She is back to talking a good bit when she is awake but not quite 100 percent. Thank you again for your prayers. They are working wonders.

Dec 28 2008

She is feeling a little better and starting to be a little more like herself. She is able to talk aboe a whisper now and is sleeping but not as deep as before. She will now wake up at noises and when doctors come in. She is still not eating real well on own but every time she trys to take a bite she coughs. Her zinc is still low so the doctor said that and the 2 infections could be affecting the appetite. She is drinking a lot more. She had only been drinking a few sips in between sleep but yesterday she drank 2 cups of water and 1 cup of tea. Today so far she drank 1/2 cup of tea and 1 cup of water. She ate a little breakfast with encouragement. She still does not really want it though. Looks to me like she will have to come home with the tube until she feels like eating on own well. She is talking non stop like some of you know that she does. She is trying her best to pull the tube out. She was able to look at some of her christmas presents yesterday with a little help from Jeff. Please continue to pray that she will begin to have an appetite and begin to eat on her own like she used to. They will probably start pt tomorrow.

Dec 27 2008 news

They just told me that although they are starting tube feeding tonight that the reason her electrolytes are off again ( I do not know how much- have not seen a doctor since this morning) is just from eating regular food. So please pray that they will not go too much more the wrong way and that each day that she gets food in her both through tube and mouth that they will go back up. They are still giving her the ones that are going down through the iv so hopefully it will get better. Although they were down today she was still alert and not as weak . She could even stand a little bit for a minute. But if they went down as far as before her body must be handling it better since she was not as weak.

Dec 27 2008

We are still here at the hospital. At times she seems better but she is still tired. It is most likely from the electrolytes being low and the 2 infections (UTI and Pneumonia). The past 2 days she has been more alert than the previous days but still kind of out of it. This afternoon however she had to have the bed changed so I had to sit her up at the end of the bed instead of up where she was laying. So she had to sit up and it really woke her up. After that I asked the nurse to suction out her lungs and a lot of gunk came out. It seemed to help her breathing a lot and they gave me something else to use on my own to suction mouth out. It helps her too. They also put a vibrating vest on her for 10 minutes to help break everything up. She will do that several times a day. That was probably around 3:30 or 4. She stayed awake sitting fully up coloring for a while. She did not go back to sleep until 7:30. That is a record for this week. They are planning on restarting the tube feeding tonight I believe. Please pray that it does not restart the whole process of her being tired and electrolytes getting messed up. I am hoping that even it does that I can sit her up like today and get her awake even for a little while. Hoping it will not happen since she has eaten a little bit. The doctors seem to think the stomach is working ok. If her stomach swells again and electrolytes get really out of whack they may start it through veins while she is here until she starts eating sufficiently. Her blood was thin this morning along with anemia and low white blood cells. Said it may be from infection. Tested again this morning but do not know results yet. Thank you everyone for your prayers. We appreciate it so very much and they are working. Today was a example of that. Please continue to keep us in your prayers especially Savannah. Please pray for answers and also that she will begin to eat well and thrive.