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Well, we are finally home from the hospital. YEA!!!

Torah is doing really good and her blood level is up a few points (all on her own). You would not believe how much poop came out of this girl last night alone. It was like every time we checked on her she would be loaded and very stinky. At least we hope that she is cleaned out now and has passed all the blood that was left in her system. 

Pretty much everything is back to normal and she is happy to be home (except when Bob is around - she did not seem to happy to see him for some reason). 

I posted new pictures on Facebook and there is a link on the right hand side of this page that should take you to the pictures as well. Thanks so much for all of your prayers, thoughts, and support. We look forward to being back in Kansas soon and seeing all our friends and family!!

TCH Update

We are still here. Yesterday was a pretty eventful day between the problems with her IV on the right arm. I think it took 4 different people and 7 different tries to finally start another IV . . . that was not happy times and mama was not a happy camper. After all that was over - Torah did settle down and they finally got her 2nd blood transfusion in late last night.

This morning Torah had a an exam done of her stomach and duodenum (upper intestine) called Esophagogastroduodenoscopy. The GI doctors (LIU and BRUMBAUGH) were looking for any active bleeding or ulcers in her stomach area, esophagus, and upper intestine (duodenum). Good news is that they did not find any active or new blood, Torah's esophagus looked great and her stomach looked good as well. They did find a ulcer in the duodenum, but it was not irritated or bleeding. The doctors are not really sure where all the blood came from, but they have decided to up her Previcid an they will also give her some Carafate to coat her stomach and help anything heal over the next week or so. Dr. B told me that they want to keep her over night to make sure that she recovers from the exam and also so that they can test her blood levels a few more times to make sure that they stay up. I think that Friday, when we were at the Douglas ER, Torah's blood level was around 15 or less and yesterday before they started the next blood transfusion (around 6pm) her level was around 21. Today when they tested her - the level was back up to 30, so lets just hope that it stays up.
I do not think that much else will go on today. The nurse was worried about a upper respitory infection and wanted Respitory therapy to suction Torah out a few times during the day. My only worry with that is that they will want to do the deep suctioning (which will not help) and if they do - they do not dismiss any kid that has had that type of treatment in the last 24 hours. So, hopefully they just stick to the nose and mouth area. We seem to through this every visit here at TCH.
Thanks again for all the thoughts and prayers for Torah, they have helped more than you know!

TCH Hospital UPDATE!!!

Well, here is all that has happend since I left for the ER yesterday afternoon:

I checked into the Douglas ER around 1pm and right off the bat they could tell that she was anemic because of how pale she was (we are talking white as a ghost - even her lips). After going over all the info and symptoms that she had, the doctor (McKee) did a stool sample to check for blood and it did come back positive. He proceeded to order lab work to be done to pretty much check for everything. After an hour or so, he came back with the results and told me that everything looked normal and she was not dehyrdated at all (which is good for her). The only thing that was not normal was her blood level. He told me that she had probably only a thrid of half of the blood that she needed and that she would be getting a blood transfusion. In the meantime, all the nurses working that night were tying to start an IV so that they could both draw blood and also give blood throught the same line. Well, little miss Torah's veins did not want to cooperate and they ended up having to call an anstheiologist to come and insert the line (no easy task - but he did get it on the first poke . . . with a little digging). The ER doctor had pretty much told me at this point that they would be sending Torah to TCH (The Childrens Hospital) in Aurora, CO to be taken care of (I think this was around 3 or 4 pm).
Bob was getting ready to head to work his 4 night shifts and we were trying to deceide at this point what to do with Jace. I had figured out in my mind that I could take him with me and somehow I would figure out what to do with him (hee hee - if you know Jace very well - you should be laughing about now). Well, thank God above - our friends in town called me and said that they would be willing to watch Jace for us while Bob worked. So THANK YOU SO MUCH Robin and Mark! Love you guys!!! Oh, and I want to thank Torah's 2nd shift nurse Annie - she was so awesome and just made me feel so at ease with everything (it is nurses like her that make all this a lot easier).
Some where around 7 pm the ER in Douglas started Torah on her blood transfusion and about an hour later her color started to pick up. YEA!!! Now the question is . . . where did the blood come from?? Some time around 9 pm the EMS team and the Flight For Life team out of Denver showed up to pick up Torah and transport her once again to TCH by plane. I at that time took off and hit the road for a 3 or more hour trip. I was worried at first because the radar showed that I was going to be going through some pretty bad weather and snow on the way down . . . I just did not look forward to that! Thank God again (he has been so wonderful this trip) the roads were 98% clear of any snow and ice and I made it to TCH in great time.
When I arrived at TCH's ER around 12:30 - Torah's nurse (Jamie) was just getting ready to flush out Torah's stomach. The doctors wanted to see nothing but clear liquids coming ouf of her stomach. So Jamie poceeded to pump in abotu 30 cc's of irrigation through the g-tube and then once that was in would then extract the fluid back through the g-tube in to the syringe . . . you would not belive what she pulled out - Dark brown (like dark chocolate or coffee) fluid with a coffee grain consistancy to it (which as it has been explained to me - is due to blood in the stomach). There was no fresh red blood, so they are either thinking it could be a ulcer or some kind of GI problem (not sure on all that - but will post more later when I know). I have met with Torah's current floor doctors this morning and one of them remembered us from back in January (that was nice). I am still waiting to meet with the GI doctors and I am still not sure what kind of test they will do yet.
The only thing new as of about an hour ago is her IV that was set yesterday came out of the vein and now her arm looks like a ballon (the skin is about as tight as it can get). They are not worried, only because she was only getting fluids through the IV and not any medication. I also think that they are going to wait and put in another IV when they do whatever test that they will do (hopefully today). Oh, and I think that she will also be getting another blood transfusion today as well because her levels are not up to where they need to be yet and she is starting to look pale again.
Not sure if I will post again today or not and I am not sure if the library will be open tomorrow for me to get back on the internet . . . so if you do not see any new post this afternoon or tomorrow then check back Monday - I will post as soon as I can.
Thanks again for all the prayers and support for Torah and we hope to be home in KS for the holidays -but that is still unkown at this time.

Possible ER visit

Well, we have been home from TCH for two days now and Torah seems to be getting worse. Here are some of her symtoms: 

~ possible sinus infection (tons of green snot)

~ pale (she looks very white)

~ black stools

~ possible dehydration

~ dark (brown/black) coffee ground like substance coming out of her stomach, either through her g-tube or her throwing it up (dr office said this is due to blood in the stomach)

~ not able to eat a lot 

~ mucus is thicker - we have suctioned her out a few times just to clear her mouth

~ sleeping and sleeping and sleeping

Now if you go back to the blood in the stomach - it kind of makes sense to blame this on the tube down her throat during the MRI . . . but that could not explain it always being in her stomach before the MRI. When I changed her g-tube last weekend, her stomach just started to drain tons of the dark brown coffee ground stuff out. It had never done that before and I was a little concerned - but she was not having problems with her reflux . . . so I did not worry to much. Now I wonder if I should have been worried  :o(

So I am trying to get things finished up here at the house so that I can run her over to the ER for the doctors there to look at her and figure out if we need to be worried or not. Hopefully there will be a doctor working that will listen to my concerns instead of just telling me that there is nothing wrong and sending us home. Will update later - so check back soon!

TCH Visit

Well, we made it to Denver and back home safely. Luckily the weather did not get bad until today. Now the question is weather or not we will make it home for Christmas. The weather does not look like it is going to be nice between now and then. 

We arrived at TCH around 8am and after we checked in and gone through security, we then headed over to Dr.E's office for her first appointment. She was so happy with Torah's progress and was amazed at how much Torah had grown since June. Torah weighed in at 30.3 pounds and is 35.5 inches long. That pretty much puts her in the 95th percentile for her height and weight. Even her head circumference was in the 90th percentile. (on a side note: I measured Jace the other day and he is standing at 41 inches - so Torah is not far behind him). Torah's feedings were not changed at all since she is pretty much were she needs to be and even though she is pretty long - she has chunked up and her thighs are not skinny anymore! The doctor did order another spine x-ray (to follow up the one that was done in June) to make sure Torah's spine has not curved anymore. Her spine dose have a curve but it is thought to be because of her low muscle tone.  The doctor also ordered some lab work and a bone age xray to test for some hormone levels that Torah should not have yet. I have not heard the results from those test yet. 

After the appointment with Dr. E and all her xray and labs - we then went to meet with Dr. P - the Neurologist. Torah is at the weight mark to up her Keppra medication, but since we have not seen any type of seizure activity for a few months, the doctor decided to keep the Keppra at the same dosage.  After that appointment we were done for Day one. Torah did very well all day and was laughing for everyone except Dr. P - she was sleeping for that visit. After all the appointments were done we checked into the motel and took a short nap - then headed off to the Bass Pro Shop to do some small shopping and so that the kids could see Santa (see picture above).

On Day 2 - we started the day with Torah's MRI of the brain. The anesthesiologist was worried because Torah had a pretty bad cough. I told them that it was pretty normal for her and every doctor that I asked about the cough did not seemed worried and said that there was nothing to do for the cough. So they went ahead with the MRI. During the test they did put a tube in her throat to keep her air way open and I think that they must have caused some bleeding, because when she was in recovery - I noticed that there was quite a bit of blood around her g-tube site (which is not normal). The doctors and nurses said that they would have done nothing to cause it to bleed. We ended up figuring out that the blood from her throat went into her stomach and came out the g-tube site (I think what was left made its way out with her stools that night because I have never seen a poopy diaper like it and I have seen my fair share of poop!). After the MRI was done and we ate lunch - we went up to the Rehab clinic to meet with Dr. A. She went over the spine xray with us and also got us a script to order a special sitting chair (see below) 

She is over all doing really well and the doctors were all impressed on how much she could do. I am still waiting for the results on the MRI, Lab work and Bone Age test - but will let you all know soon. Thanks for all the prayers and support for us and Torah. We look forward to seeing family and friends at Christmas when we hopefully make our trip back to Kansas. 

Change in Plans

Well, there was a change in plans with Torah's medication - but it is a good change. I received a call from our local pharmacy yesterday saying that they could now fill the Previcid and it would only cost me 10 dollars. I think I about did a flip in the air!! The prescription coverage company that was going to fill the prescription and mail it to us told me that they could fill it for 40 dollars (one month supply) or 80 dollars (3 month supply). I thought that it was pretty pricey - but it was cheeper than what was previously quoted by the local pharmacy. So after getting the Rx filled at our local pharmacy, I called the company back and told them to NOT fill the Rx. This is the funny part (at least I was laughing) : The gal that I was talking to told me that there was no prescription and that there was no pre-authorization for the medication. So in other words, it is a good thing that our local pharmacy filled the Rx for us - other wise we would still be waiting . . . for nothing!

On a separate note - I met with a motorcycle group today that does fund raisers and poker runs for children (like Torah) that need help with finances. Torah's doctor gave us the information on them and said that she would be a good candidate. Since we are still waiting on the waiver process to be finalized (to find out weather she will qualify for that as well), I thought that we could use any and all help. About five of the groups members came by the house tonight to meet Torah and ask me some questions about her. After they meet all the children that have applied - they review all the information and contact everyone to let them know who they have picked for this year. They said that this will be the 9th year for them and they have really great results from all the bikers around the area. I will let you know what their decision was after they let me know. 

Some good news!

I talked to our prescription coverage group today and it sounds like the medication is covered if I order it through them . . . so we are going to try it for one month to make sure that it helps with the reflux. She did not have a good therapy session on Tuesday or Wednesday, and she seems to go every other week with her moods - so I hope that she does great next week since it will be one of the last sessions for the rest of the year. Torah is also working on getting some more teeth in and will soon have all but the back four molars. That could be the reason for all of her fits and reflux issues as well.