New G-tube

Well Maggie will be getting a new g-tube. We saw GI today and she is not growing and is having so much trouble digesting food or having a ton of residual. So he would like to try a new g-tube that is a lot smaller in the stomach and sits flat against the stomach wall. We will try this as a last resort until we move back to TPN. I really hope this works but something is telling me its not going to. However I would rather try and make sure before we move straight back to TPN. Once we go back to TPN its looking a lot more permanent. Maggie will have to be completely sedated because they don't actually make a tube like that small enough for her so she will have to have a little bit bigger one. That doesn't sound right. It is just bigger to get through the stomach, once its in it should all work out. This one just doesn't take up as much space in the stomach. I hope that makes sense. Its just a little more complicated to get in so our doctor will have another surgeon stand by just in case there is a problem. But hopefully it will just go quickly. Our GI doctor is one of the best in the country so hopefully things go smoothly. Sedation always scares us because you never know how she will respond. Its different everytime. We will know tomorrow if it will be done on Monday or Tuesday. He had to order a button so as soon as he gets that it will be put in. He wants this done ASAP so we know if it will work so she doesn't go too far downhill while we wait.

Please pray for Maggie. We just need this to work and for everything to go smoothly. Oh and someone asked how much Maggie weighs now at 17 months old. She is at about 16 lbs 1 oz give or take a couple ounces depending on the day. But this is going down and we don't want this to go down any further.

G-tube issues

Well Maggie has started to act a little better. She is tolerating her feeds a little better too. We still have some issues and we met with her GI doctor yesterday. He wants to try a different g-tube button but she would need to be sedated to put it in. So, he doesn't really want to do it but feels we need to. We will meet again on thursday and talk more about this. Maggie lost about a half a pound in this last week. We want to give it a little more time before we put her back on TPN and LIPIDS. But he will be watching her very closely.

Maggie continues to have on and off low grade fevers. We are hoping these will stop soon. Nobody has any idea why she is doing this. We are just hoping and praying its not the infection.

Her respiratory rate has been really fast so we are watching this closely. She is hyperventilating. Still not sure what that is about either. So it looks like we don't know much about anything at the moment.

I want to tell you how amazing Maggie is I totally didn't know she knew any of this, but when I gave her a magazine with a bunch of pictures on it of babies and kids, boys and girls. I asked her where a baby was and she pointed right to it, no hesitation. I thought it was a fluke but I asked her where a little boy was and she pointed right to a little boy and then asked her where a little girl was and she pointed right to it. I had no idea she knew the differences. We turned the page and did it all over again. She got it right every time. I was in shock. I love when she does things like that. Sometimes we think that mentally she is a little behind because she is the size of a six month old. But she knows a lot more than we give her credit for. Maggie is also getting really good at pointing to her body parts. I just love this kid. She will always amaze me even when she isn't feeling super great.

Thank you for the continued prayers. We really need Maggie to grow so she doesn't end up back on TPN.

What to do?

So Maggie has been home one day now. Things aren't going super great. She has not been tolerating her feedings at all. She is back to being tachycardic, just sitting below 200 beats. She is bordline on her temperature. And she looks just aweful. We are going to see how she does tomorrow to see if we need to bring her back to the hospital. I really hope she doesn't need to go but I don't really know what to do. I'm trying to wait it out a little but she is giving me a little anxiety. She slept a lot today which is unusual. And her poor tummy just blows up like a balloon when she is being fed. Since her temp has been sitting right around 100 degrees its kind of a toss. I don't know I guess I'm just thinking out loud. I really feel like she has an obstruction. We'll see how things are tomorrow. I will update again with what we decide to do.

Thank you for all of the support and prayers.

Home at last!

Well we decided to just bring Maggie home. When I went to the hospital, I talked to the doctor and he said that when they listen to Maggies stomach they cannot hear anything moving in there. When they vented her she had two hours worth of food come out. So they stopped feedings and waited a half hour and vented her again. Still two hours worth of food came out. Her poor stomach was blown up like a balloon. So they had to discard it. So then a half hour later they vented her again and 15 cc's came out. So who knows whats going on. The doctor was not sure why this is happening and her tried to get her GI doc on the phone but he was in a meeting. We just said that we would deal with it and that we wanted to bring her home. So I will try and get a hold of the doctor later. Also with her blood transfusion it brought her numbers up but not very much. And for Maggie after a couple days it even comes down more so we will have to have that checked and she may need another possible transfusion.

Fluid wise Maggie is still retaining fluid. She looks better and not as swollen but she was still really low for fluid output for the amount that she has received. So they think this should come out in the next day or two. Even with Maggie having extra fluid she still weighed exactly what she did when she was admitted almost two weeks ago. So they are pretty sure that once all of the fluid has come out she will have lost some weight which is not ideal. The doctors aren't really sure what to do about Maggie at this point. We will definitely need to get all of her specialists involved to see why she is having so many problems.

Maggie is so complicated at times. Its pretty frustrating not being able to fix your baby girl. She seems really happy to be home. Lets see if we can stay out of the hospital for a while now. Thanks for all the prayers. Maggie says thank you too.

What next?

Maggies blood transfusion went well. So now it would seem that we should be able to bring her home. Well, that's not the case. Maggie has not been tolerating her feeds again since yesterday morning. They have tried a bunch of things. But she is just not digesting it. She has been retching a lot and when they go to vent her (burp her through her g-tube) two hours worth of food comes out. Poor little girl. So they are now going to have to talk to her GI doctor who can hopefully shed some light. They are also going to go up on one of the motility meds that she is on. I'm not really sure if that med does anything at all anyway. She seems to have this problem often. I just hope that this doesn't mean that we are going to go to TPN. We shall see.

Everyone at home is feeling better. What a relief. So I hope to go up and see Maggie today. I'm sure she will give me attitude and the silent treatment. She does not like it if I miss a day seeing her, understandably. So when I go to see her she will fold her arms and look away pouting. Its actually really cute. But I feel bad knowing that she missed me. Anyway I would just like to get her home. It would be so great to have her back home.

Thank you so much for your continued prayers for Maggie.

Maybe tomorrow!

Well apparently whatever Taveon has/had is something contagious. Hailey woke up in the middle of the night throwing up. They were both just so sick and couldn't stop puking. So they did not get any sleep last night which makes for some really unhappy kids. Hopefully I can get them to take a nap later today. I also have not been feeling well. Thank goodness for Sean. As soon as he got Maggie to sleep at the hospital he came home to help me. Well then I wasn't feeling so hot so he ended up doing pretty much everything. That was huge. But now Maggie has been all night and all morning without one of us there. I feel so bad for her. One of our neighbors offered to go up and sit with her. So that was really nice. My mom was going to go but apparently whatever we have she has too. I have no idea what is going on here but it is not good. So anyway that is what is going on here.

The doctor called me this morning to fill me in. Maggie will be getting the blood transfusion today. As soon as Sean can get up there they are ready to do it. Her heart rate has also gone up again I guess so he is not sure why this is happening. He does not want Maggie coming home to this war zone here so we all agreed that it is best for her to stay another night and so then they can watch her heart rate again and they can recheck her labs in the morning. I hope things get better quick so we can clean our house from germs and get Maggie home. And hopefully tomorrow she will be feeling better and her heart rate will come back down.

Thank you all for all of the continued thoughts and prayers. We are so greatful for all of the support.

Not home yet!

Maggie did not come home yet. Early this morning Maggie started retching (trying to puke). She is not tolerating her feeds very well. She was not even up to her full amount on her feeds. I'm not sure what we are going to do about this. Also today Maggie was going to get her picc line in the morning and there was a miscommunication and she didn't end up getting down there until 4 pm. Not surprising, something always happens here. So Maggie has not gotten her blood transfusion today either. They will most likely do that tomorrow. So now if Maggie cannot tolerate her feeds tonight and tomorrow then GI will need to be called and there will be talk about putting her back on TPN. Or hopefully we can just change things around a little and see if we can find something else that works.

So another thing is I did some research about living on TPN and it actually said that there are people that have pretty good long lives that live on TPN. So I decided to ask the doctor about it. The reason they have told me that she may not have a very long life on TPN is because the people that live for a long time on it have things like short bowel syndrome. If Maggie has to be on TPN its because of whatever it is that she has. So they said that her diagnosis will be a little clearer if she cannot absorb through her stomach. So they still won't have a diagnosis but they will know for sure that its something metabolic or mitochondrial. And with that type of disease and being on TPN it is not a good thing. People in this situation already have problems with their organs not being 100% and other chronic things. This is why they had told me these things. However we still try to remain hopeful and cross our fingers that she will just absorb through her stomach. If we can just get her to tolerate her feeds now so we can try it. That would be good.

Hopefully tomorrow will be the day to come home. Oh, and to make things a little more interesting, or stressful, Taveon started puking today so thats awesome. We don't think he is actually really sick to his stomach though. He has had a runny nose (a little more than normal) and sometimes when he gets like that and he swollows it he will puke or if he has ear infections he will get puky. Time will tell. Good times.

Thank you for the support!!!