Time for a tune up

Happy New Year!

This week we have started our year off with a bit of a hiccup. Tues. Dec. 30th Summer had her usual clinic appointments at Children's. She had been having a few issues we have been watching lately....her white count had been elevated, though all the cultures they took never grew anything, and some of her other labs were off a bit. She also hadn't gained any weight for about 3 weeks and they were perplexed as to why this would be. Well, this week's appt. revealed very low protein levels, low electrolytes, low sodium, low potassium, just to name a few. The doc was concerned she would become very ill so admitted her to the hospital to figure out what was going on.

We are still here and in the past few days, she has gained over 13 ounces! Summer has been taking in 30 ML's of breast milk per hour in her NG tube and an additional 20 ML's 4 times a day by bottle or breastfeeding. She has always had very wet diapers and her other poop (for lack of a better word!) has been very frequent and watery. This has made every diaper change a duck and cover operation...I have been not so lucky as to dodge a few! We thought this was normal for a short gut kid, well it is, but it has become too excessive and has caused her to get dehydrated and throw off her body chemistry.

When she first arrived, they pumped her full of lots of extra fluid and gave her Albumin (protein) to get her body re hydrated. They stopped her milk intake yesterday and kept her from eating anything through her mouth or NG tube until today. Her body has balanced out and all the labs are looking greatly improved :) With the extra fluid, and a blood transfusion to combat her anemia, she put on a lot of weight. She now weighs about 9 pounds 15 ounces!

During all this, however, her liver function has improved. Her Bilirubin is now down to 0.6! Yes, the decimal is in the right place :) After the blood transfusion was complete, Summer was pinker than she has ever been ! So, fat and pink....thanks Santa! I got my Christmas wish after all...well, for New Year's :)

They have started feeding her again with formula first. They are starting with only 10 ML's per hour and bumping it up 5 ML's an hour every 6 hours. She may not be able to take breast milk anymore, but we will wait and see what happens. I guess it is a good thing my freezer is not a full as it used to be! She definitely benefited from it for the past 4 months....

As a bonus for having to put her back in the hospital (if there is such a thing) we were able to get an echo cardiogram done today to check her pulmonary hypertension. Summer had an appt. a week and a half ago with the pulmonary team and they said after confirmed with an echo that her hypertension was resolved, we would be able to start weaning her oxygen. I am hoping we get good news here because they could monitor her off the oxygen much easier than I could at home. It could be a much shorter process :) Think healthy lung thoughts.....

The docs say this is just a "tune up" and we will be moving forward again....Hopefully we will get to bring Summer home in a few days....