Doctor Visits and stomach bleeding

As I mentioned in the previous post - I had thought that I saw some blood in her stomach contents before we left for our trip to Kansas over Easter weekend. I think that I was right because on Tuesday the 21st I saw it again and it was quite a bit (not fresh blood - but the "coffee ground" looking contents). I had hooked her g-tube up to vent her stomach (it is how we burp her - or get the air out of her stomach) and after quite a bit of air came out, all the water I had just given her was coming back up along with the "coffee grounds". So I got on the phone to call Torah's GI doctor at TCH to see what he wanted to do. He had told me to call him directly and not any other doctor - so assume my surprise when the nurse told me that we needed to call Torah's PCP and get her in to see him first. It is hard enough to get into see them and I was starting to get very frusterated. Thankfully, God was not wanting me to stress too much about all this - and the doctor's office told me that they could get her in the next morning. We already had a visit that morning to see Torah's ENT doctor and so her PCP doctor got her in 2 hours after (worked out really well). Wednesday morning we took off for Casper and the visit with the ENT doctor went well. They looked at her ears and agreed that she is not hearing out of her Left ear because it has filled back up with fluid, but her Right ear is fine and the tube is helping keep that ear clear. The doctor does not want Torah on any more antibiotics unless needed (so no 1 month of augmentin to help with the recurring sinus infections). The ENT doctor thinks that they might be taking her adnoids out the same time that they put tubes back in her ears. We go back in June for the doctor to make his final descision. After our ENT appt we went over to see her PCP and he also agreed about her not getting the antibiotics unless really needed. He thinks that the bleeding might be just be a come and go thing (which very possibly could be true). He ordered a blood test and I am guessing that no news is good news. So anytime I see the "coffee grounds" in her stomach contents I will call Torah's PCP and see if he wants to order another blood test.

She has been doing great the past week and has been really happy ( I love it when she is happy)!! Not much else is new. We are still working with our insurance company on the pool therapy, and I am still waiting to hear our final appointment times for when we take her back to TCH in June. The only appointments in May are for Bob and I, so hopfully Torah stays healthy and my stress level can come down before June.

So much good - but so much stress!

We made it back to Kansas to surprise my sister for Easter weekend. She thought that the kids and I might make it to dad's house so that she could see us when her and dad got back from Kansas City, but we ended up going with dad to KC to pick her up at the airport . . . and she was surprised!!! It was a good trip and visit with family. We got to see my dad's sister Marilyn in KC and spend some time with her and Curt & Karla (friends of the family)on Friday and Saturday. Then when we got back to Salina Saturday night - we took my mom's mother Lois out for her 82nd birthday and my mom's brother Rod and his son Ryan were there too - so that was a great night also with family. Now for Easter Sunday - Dad, Chrissy, myself and the kids all went to church in Abilene at ABBC and then took off for White City to spend time with dad's family. So our small trip was a good choice to make since we were able to see and spend so much time with our family. The kids and I also got to see and spend time with Bob's parents and also Great Grandma Carlene on Thursday and then again on Monday. Let's just say that there was not much resting on this trip!!! :)

Torah tried to give me a scare before we left on our trip and I am not sure if I saw what I reall saw - but we are going to wait a while before I jump on the phone to call the doctor yet. She was having problems with reflux again and was spitting up during the night. When I went in to get her up Thursday morning - I noticed some dark brown stuff on her blanket. I tried to get some of her stomach content out through her g-tube but was not too successful. It looked like she might have another ulcer and might be bleeding again (dark coffee grounds), but I have not seen any sign of it since - so we will wait. Funny thing is - is that she was suppose to meet with the GI doctor in Denver at TCH on Friday and it got canclled because it was scheduled with the wrong doctor. Not sure if that was God's hand in it or not.

We are in the process of getting more appointments scheduled for her at TCH for sometime in June, but are waiting for the final word on when they will be. We also have scheduled this week an appointment for her to see a Audiologist to see if we need to get a tube put back into her left ear so that she can hear again.

We do have some good news for Torah! She was approved to get Respite care. She will be watched by a special provider that is approved by the state and we only have to pay a small price (the state pays the rest of the money to the caregiver). So far she has been approved for 40 hours this month and also May, then in June we will have 60 hours. I need to call a couple of people to see who is avalible to take Torah on (since there is only 2 active in our town). Still no word on the the Waiver, but Torah is on the waiting list and we can just pray that it gets approve soon.

We will probably be looking to purchase a new form of transportation this year. We had been talking about and looking at mini-vans that could help Torah better. It is getting very difficult to get Torah in and out of my SUV (I pretty much hit her head on the door frame every time I get her in and out of the car). Something else has changed our situation though and is going to make us get a different vehicle before December . . . we are now expecting baby number 3. We are happy and really excited about this!! Bob wants another boy, I want another girl and anytime you ask Jace what he wants - "I want a sister!". So I guess we will wait and see what God has planned for this next one.

God is good and has been wonderful to us - so just keep us and Torah in your prayers and thoughts!!!

PS - Don't forget about the Poker-Run in June!!

Torah's Vest

Terry from Untamed Spirits dropped off Torah's vest the other night and gave her her first pin. It fits great and will be a treasured item for her. I am really hoping that the turn out will be great and that the group can raise a lot of money for us to use for Torah. I am already coming up with some medical equipment that we can use it for (that insurance will not pay for). So remember, if you would like to help out - contact the Untamed Spirits. I also have raffle tickets and you can email me at kelle.hull@gmail.com