Thursday, January 5, 2017

Thursday, Jan. 5 '17

Last night, we didn't get much sleep between vital checks, respiratory work, and a running IV something was always going on - but that is totally okay! I am so happy that we have such wonderful caring people working all night to keep the tiny humans of the world healthy. We were informed around 0245 am that R should be NPO since he would be having a bronch at 1200. Kinda crazy news for that hour by hey it keeps life interesting! So all morning R had nothing by mouth but he did get some fluids via IV. The bronch went over great and his lungs were very swollen and lacking in color but overall looked good. Praise the Lord! R got happy juice through the IV for the first time and it aided in his anxiety towards the staff and the procedure in general. The procedure went very quick, probably under 30 minutes. We will not know all the results from the bronch for at least two days. In the meantime, we will continue the ceftazidime every 8 hours via IV and the Tobi every 24 also via IV. We will continue to push foods and fluids and monitor weight. If his weight doesn't improve in a few days we will discuss other means of helping him gain weight. (Low weight = low lung function)

I am so thankful that everything went over great today! R is so strong mentally and physically. He is doing great with leaving his IV alone and working extra hard with the respiratory team. I couldn't ask any more of him. R didn't choose to have CF but instead he was given it by a loving God who has great plans ahead. I'm so amazed by the beauty of his story and look forward to all the days ahead. God is good and is still in the dream making prayer answering business let our life be proof.

We found a possible issue during the bronch located near R's larynx and will have ENT come see us hopefully tomorrow. GI will also be paying us a visit to talk about options regarding weight/output. I am looking forward to getting more information on both topics and creating a plan of action.

Today r ate some watermelon and a few French fries, and his only liquid intake was mommy milk. His output was greater due to the IV fluids. He is still a little paler than normal and his eyes are still a little sick looking - but we are working on it!

He is currently asleep while Finding Dora plays in the background and the Christmas lights glow behind us. In the hall we hear crying babies and watch volunteers push around little kiddos in cars because their parents needed a break or aren't here with them. Volunteers are such a vital piece of a hospital. There are so many children who don't have a support system and the volunteer staff steps right up and brings fun and family to all the children in need. I'm so thankful to live in the volunteer state and have this hospital in our lives.

 Respiratory has yet to be in along with nighttime meds so that means the night is young! CF'ers can't sleep when there is work to be done! CF parents don't even know what sleep is, good thing that Google is there to give us the definition. (I am to funny. )

Anyways, we are doing great and enjoying our mini vacation! Enjoying movies, coloring, meeting new faces, playing with the paw patrol team, and making memories together. I am so blessed for this 1 on 1 time with my tiny human.

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