Sunday, September 23, 2012
Praising God in the storm
So today had just been such a rough day. There are so many crazy hard things going on. And unfortunately this morning I let myself get caught up in the unknown and the fear of the unknown, in this situation and in others. I took my focus off of the One who brings peace. I started focusing on the world and all that is going wrong right now. And then God gently reminded me that He is walking this road with me, and that I don't need to fear. God has this ALL UNDER CONTROL. I don't know where that leads us here on earth, but I know where it leads us for eternity.
That being said here is the run down of the day: PICU and IV teams unsuccessful with IV starts. So then the plan quickly moved to a special type of NG tube that goes beyond the stomach, and they would be dumping all the nutrients and things he is lacking there. But how awful would that have been for him. I am so thankful to God that He had a nursing instructur here who had a NICU background, and she got special permission to come start his line. He doesn't love it, AT ALL. But it is in and hopefully he will start getting hydrated and his lab values will be better.
After the tortuous morning with the IV starts, Mr P and I decided we were going to have our own worship service here since we didn't get to go to church today. P played the piano and I "played" the drums. It was fun and we sang some great songs, that brought me back to reality. "Our God is an awesome God", "In the Lord Alone", Jesus loves me, etc. We had fun, and God spoke to my heart:-)
After this the GI doctors and infectious disease doctors came in. They decided they were going to retest his stool to see if he still has the intestinal infection. THey werent sure how they would treat it since he has had reactions to the antibiotics used to treat it. They talked about doing some blood work to determine if there is some type of "dumping syndrome" in which the nutrients are just "dumped" quickly out of the body, or something where the lining of the intestines has come off. So they were doing more blood work for those types of things
Then the attending came in and was talking about the extremely elevated Alk Phos level. And now they are trying to determine if nutrients are being sucked out of the bones and back into the body, leading to weak bones, so they are testing for that too..
And then the sun came out today... Matt and Sammy came to visit. I can't even begin to say how wonderful it was to see them and to hug them and kiss them. But even more wonderful was how Preston reacted to them. He was so thrilled to see them, it was like he was trying to climb inside Sammy. It was just so wonderful to spend time together. I was very sad to not see Sophia but I am ok with her not seeing all this because it causes lots of anxiety for her.
So moving forward tomorrow we will be doing an upper GI series, to determine if there is some type of blockage in his digestive tract. We should hopefully get back some blood work that would determine whether or not there is some reabsorption of nutrients from bone. And then hopefully some of the immune system workup will come back.
Praising God for IV access today, for a wonderful visit with Matt and Sam, for so many wonderful friends/family supporting us and helping us. For the capability of the doctors to figure this out, for Gods healing power in His life, for the peace that God is giving me in this trial
Labels:
blood,
family,
friends,
GI,
Immunology,
Mass General,
prayer,
sick
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