Setbacks

Napping with some of his favorite comforts

We were given the good news yesterday morning that Casen could slowly begin to introduce solid foods back into his diet! Let me remind you that the last time he has eaten anything was Monday evening, so this was a BIG deal for all of us!  He only had a few bites of his breakfast, lunch, and dinner, but we were very encouraged by the fact that it was staying down AND he had a couple of bowel movements yesterday. Who knew I would ever be so excited about poop!  Casen's overall mood yesterday was more upbeat and we were able to have a little bit of fun. He loves going for rides around the hospital in his wheelchair and he spent a good hour on puzzles last night.

Two wonderful visitors also got in town yesterday, Grammy and Nana!! It took him awhile to warm up to them, but by the end of the day he was giving both of them plenty of smiles. My mom came into town to watch Bentley for us while we are here at the hospital.  Last night I drove with my mom back to College Station to pick up Bentley, and so that I could pick up some more clothes and essentials until we are released. It was great to see Bentley, but as soon as he saw Nana he ran right past me and straight to Nana. No hard feelings though, I expected as much :) In fact, on the way to our house Bentley said, "Mom, you can go back to the hospital now and Nana will just watch me by herself." He let me know that Casen loved me more so I needed to go back and be with him.  Despite the lack of love I got from Bentley, it was really good to see him again! I've missed his little face! It was also great to see that he was happy and had been well taken care of by the Black family this week. I cannot thank them enough for all that they have done for us this week! A day of babysitting turned into a week and Jami has never made me feel like it was a burden.  

It was great to shower and sleep at home, but I was ready to get back to my baby this morning.  On the drive over I learned that Casen had a rough night consisting of vomit, fever, high heart rate, high blood pressure, more labored breathing, blood draws, and lots of prodding by doctors. The surgeon also ordered that he not eat or drink anything again in case a need to operate under sedation should arise today. The infectious disease team also paid him a visit last night after he spiked a fever and added one more antibiotic to his regimen.  He was already on two heavy hitter antibiotics, but they added one more in case he has the one and only bacterial infection that isn't already covered by the other two antibiotics he was already on.  

We worked all day to get a urine sample from Casen today to test for a possible UTI, but after 12 hours of no pee, his nurses had to place him with a catheter to force the issue.  His previous catheter was just removed yesterday, so it was frustrating to see it go back in again.  It has been hard to get excited about signs of improvements and then to have setbacks like last night.  Casen has been in quite a bit of pain today, and since they removed his epidural yesterday I'm sure that he is feeling his pain even more so than before. He has a morphine drip line, but that can only offer him so much pain relief.  

Our goal for the day is to make sure that his blood and urine labs come back clear. Since it has essentially been 6 days since Casen has eaten anything, they will start him on IV nutrition later today.  I can tell that his poor little body is getting weak, but the way he looks is deceiving because his kidney disease has already caused quite a bit of general swelling in his body.  I imagine that without the swelling, he would be skin and bones. Maybe it is better that I can't see him without all of the swelling...

Grammy leaves tonight and John is heading back to College Station so that he can be back to work on Monday.  I'm not looking forward to doing this on my own at the hospital.  As time goes on, I find myself growing more bitter about our situation.  I am trying to stay positive, but that's not always the case. It's just so hard to watch your child suffer, especially when they have no comprehension of why these bad things are happening. Not to  mention, that these bad things shouldn't have happened at all. Tomorrow will be better right?  A friend sent me a scripture today that was comforting so I will end with that,

"And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions." 

-Mosiah 24:14

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