Tues. 10/7 - update

We love you Daddy! We will miss you SO VERY MUCH!!!!!!!!!



Today was another hard day. Mainly because Todd had to leave. These past 5 days were so good for Caed and I (and I know Todd as well). It's amazing how much you take for granted having that extra set of hands, not to mention just having your best friend to talk to everyday (in person). We ran some errands this afternoon and then went for a long walk. We decided to go to the new pedestrian bridge that just opened up a few weeks ago. It crosses the Missouri River and connects Nebraska to Iowa. It is also located at the Lewis and Clark Landing. Lots of interesting history info all along the trails. It was pretty (but a little cold).


Pedestrian Bridge



Missouri River (Nebraska on one side.....Iowa on the other)





Caed's clinic appt. went well (I guess). He gained another 1/2 lb. this week! Which is wonderful!!! I asked what was causing the weight gain, and they said it is probably the diet, his ORS drink, and partially G-feeds. Caed hasn't gained like this since he was on TPN. (2 1/2 lbs. in 2 weeks)

I will explain the best way I can the other info they told us. Basically....the rehabilitation of short gut patients consists mainly of 3 parts: 1) get off TPN 2) get off hydration therapy (central line out) 3) get off G-tube feeds. We obviously have already accomplished the 1st step. So, now our next goal is to wean Caed off the hydration therapy (IV fluids). IF he can successfully get off of it, then he gets his central line taken out. Another HUGE milestone! This is basically what our drs. are desperately working towards now. He is SO close. However...the 4 week time frame might have been pushing it a little. Our dr. today said, "We're going to try our best to get you home before Thanksgiving!!".....................I was caught off guard once again. Todd and I both were in shock. However, like we talked about later, nothing is set in stone. We could be home much sooner. We are now just needing to take things week by week. Last week I thought 4 more weeks was bad, but now looking at 7-8???? I literally can't even go there. I can't look at it from the 'big picture' point of view. Todd and I are trying to just take it one week at a time. In a few days, my parents and kids are coming! That will help SO MUCH! After they leave (Oct. 21st), then Todd will try to come back up for a few days toward the end of Oct. or first of Nov. Again, that will give us something to look forward to and help pass even more time. Then.....who knows where we'll be by that time? Hopefully close to coming home..... IF this indeed goes to Thanksgiving, can you imagine? When I left, in my head we were going to be gone for a month. It could easily turn into 3 now!!!!! Thank you God for your protection! You continue only giving us what you know we can handle for that moment. I am trying very hard not to get down about this. Like we've said before, Caed has made such amazing progress just in the 4 weeks we've been here! This is definitely worth it in the long run. (just can't picture my sweet Reagan and Caleb.....or I'll lose it pretty quickly)

We will keep Caed's feedings the same this week.....no changes.
(90 ml/hr. @ 22 kcal-continuous) However, we will begin the weaning process from the hydration. He is hooked up 14 hrs. / day (800 ml). This week we will go down to 10 hrs (600 ml). They also want another Upper GI this Friday. They want a better look again at how much bowel he truly has so they can know how hard to push him. Also will be looking for any possible areas that dilated. They feel his small bowel IS absorbing because of his weight gain. Just mainly concerned with the fluid absorption aspect. The UGI should not be a big deal. He's had many, and it sure helps to be able to insert the barium into his G-tube instead of having to drink it. The only thing honestly is just having to lay up on that hard table for 2-3 hrs. I would probably use the time to catch up on some much needed rest....but a 5 yr old?.....another story! Another nice thing will be that my parents will be here for it. Hopefully after it's over (lunchtime), he will feel ok to go to the pumpkin patch. He sure has been talking about it non-stop.

Update on c-diff..............it was great that his last stool sample came back negative, but they said he will need 3-4 negative tests to fully know whether it's gone or not. We will not test this week, but probably the next.

Thank you all again for your prayers. These past few days with Todd here was so good and SO needed. It gave he and Caed some great time together just doing "guy things." Caed needs us both, and I was reminded of that again this weekend. It was good for Todd and I as well. I know Reagan and Caleb NEED their Mommy and Daddy too, and I know the day is going to come very soon where we can all be together again. All of these circumstances are not ideal, but God is in control. None of this has caught Him off-guard, and we need to make the best of it and simply TRUST!! He is once again providing for ALL of us and meeting each one of our needs.