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.