Two Days away from 9 Mos Old-More Challenges

Well -Things are pretty unproductive at the moment. Madeline has come down with some kind of illness-Bronchialities perhaps or some other viral sickness that is messing with the plan a bit.

The plan was to keep her on a 24 hr continuous feed of a new formula (neocate) and to increase by 5 ml every 12hrs until she reached her goal of 35-40 ml an hr/for 24 hr. She was at about 25 ml/Hr when her IV became infiltrated and the Dr's tried to have her get a new IV in (the iv was giving her maintenance fluids to make up for what she was not getting through her GTUBE nutrition). They tried to get another IV in but could not at all. She has been poked so many times it seems almost impossible to get anything in . .the NICU team could not get a line in and neither could anyone else.

Realizing that she still needed the fluid the GI team consulted with Nephrology and they agreed to increaser her gtube feedings to 50ml per hr but 30 of the ml being formula and 20 being pedialyte. Surprisingly Madeline did not have any adverse reactions to the sudden increase which is good.

However.. .her cough and runny nose became worse last night.. she ended up getting a fever of 38.5 celsius which i don't believe is too too high but a fever none the less. .she could hardly sleep at all and was burning up every time we picked her up. We wrapped her up and snuggled her on the couch we sleep on here which is about the size of a single bed.. just picture mom dad and baby all trying to fit on here! not very comfortable but we make it work. '

Around 630 am they tried twice to get blood work with no success.. an hr later they came back for another try and mom and dad layed the hammer down and told them that no more blood would be taken until a decision was made about if and when she is getting a potentital broviac/medaport *which is a better alternative to constant blood draws.. this would be a source to take blood from on a regular basis * ,.. We know that in order to have the surgery she has to have an empty tummy so she would have to be on maintenance fluids only. Which means putting a line back in- which means we would prefer them to draw her blood for daily labs and put line in at the same time..

So when rounds with DR's came around they mentioned A. We cannot do the medaport only the broviac (which was our less preferred method due to concern of infection) due to her size. B. Because she had a fever the surgeons are unlikely to want to do surgery at this point- will want to wait until she is feeling better. so C. access to her veins is still an issue because we need labs and need to get her on an iv in case they do decide to do something that requires sedation.

SO there is someone else who is notorious for being good with pic lines coming down from the PICU to look for sites to do a line on..If  she cant find any she may consideral a femeral line (which is in your femeral vein in the leg) or another one that goes somewhere in the neck but I believe requires sedation but who knows if possible. .They ideal would be to get the vein line in and then have some time to draw lab and get better until she can get surgery for broviac. And then see how she continues to do with labs/feeds etc.. although at this point she is being put on straight pedialtye due to being ill and possibly needing sedation..

So things just seem to get more and more complicated. And Madeline is miserable. She only wants to be held and snuggled and cries all day. This is very hard for all of us.