I will just begin by saying we are not having an easy time of things. It all began last night when the resident on call and her med student came in our room to get a detailed medical history on Lucy. I have come to the conclusion that it is very necessary for me to sit down and write out some sort of current detailed summary of Lucy’s medical history. I think that it is defiantly in Lucy’s best interest for me to do this. I know Lucy’s medical history like the back of my hand, but it is exhausting to have to retell it over and over, not to mention very long and detailed for even the best historian to have to retell. Over an hour later they went into detail about the plans for today. We were prepared to do the GH lab draw one hour after she fell asleep, and we were prepared to do the three endocrine studies today that coincidentally will take about five and a half hours to complete, but we were not prepared to undergo a twelve hour fasting study. We were told before we came that a mini fasting study might take place four hours before her endocrine studies this morning, but we were not aware of any plans to do a twelve hour fasting study. I am getting the impression that as long as we are here they want to do as much as possible, well we think that it’s too much for Lucy!
Last night the IV team had a difficult time placing Lucy’s blood drawing IV. She has one, count it, one good vein in her left hand that has been used over and over for IVs. It’s what we would call her Ol’ Faithful as that is the only vein the team could find on Lucy’s hands, arms, feet, and ankles to use. She has scars on her hand and wrist from previous IVs placed there. I just hate that it is difficult for her to have an IV placed! I hate even more that I know which vein is good and which veins are not.
Her IV was finally placed at about 9:30pm and her night feeding began at around 10:15pm because the hospital had a difficult time getting her Elecare ordered, good thing I had some in my diaper bag because the waiting was getting ridiculous. Drew mixed up her night potion, and they connected her to their feeding pump which alarmed more times last night than we have had with our pump in the last month. Needless to say, we did not have a very restful nights sleep!
Lucy had her first blood draw at 12:15am which happened to be one hour after she fell asleep. Well, one hour after that we were finally able to get the blood needed for the first test. I hope the results are not affected by the variance in time. At 6:00am Lucy was NPO and that is when our morning began. Her blood drawing IVs have not been drawing blood, instead we have had to squeeze the blood from each IV. It has been a challenging day!
Update at 3:00PM:
We can no longer squeeze any blood from either IV and so we are putting a temporary hold on any more labs until we hear from her endocrinologist Dr. L.
Update at 5:00:
Dr. L just left and we all decided that we are not going to draw any more labs on Lucy tonight! She has had enough for today! We agreed to come back and have the final study, the CRH stimulation test, done if in fact we get results back confirming GH deficiency. We also discussed why and how they would run a fasting study if we agreed to doing it. I will make a very long story short, we are not going to do it! Doing a fasting study would mean delaying the PEG procedure a day because GI doesn’t want her on their service immediately after a fast, I think that is very smart of GI. Our original plan was to have the GH studies done , GI scope, and PEG tube placed, and after much debate we are sticking with our original plan. I think we all feel better knowing that we are not going to have to stick Lucy any more today! Tomorrow is a whole other story.
Update at 10:00
The kids came to have dinner with us tonight which really made our day! Thanks mom for braving the traffic and bringing the kids tonight!
Tomorrow Lucy is scheduled for surgery at 10:00 am. She will go NPO at 5 am and at that time will get be given and IV of D10, her sugar of choice. I’ll update more tomorrow, I am tired and am looking forward to getting a little sleep. Thanks for all your thoughts and prayers today, they helped make a difference!