Happy Dyngus Day ! Still hanging out at the hospital...

Happy Belated Easter and Happy Dyngus Day everyone! (If you don't know what Dyngus Day is .. Google it.. You will make us polish folk proud!)

So Madeline had her surgery on Friday for her Medaport.It took a while but they got it in. The surgeon said that it was the hardest line he has ever placed. Apparently every time he went to put it in it became stuck. Eventually they got it in but they had to use the vein they least wanted to use (subclavean)- this was the least preferred vein because it is the vein often used later in life for dialysis (so should she need dialysis they did not want to do damage to that vein). She had a lot of mucus in her chest when they pulled out the tube from her throat (used for sedation) so they were sure to suction very well. They were worried about her risk of catching pneumonia. Today for the first time since becoming sick while at the hospital they heard wheezing so they took her for an xray to make sure there is no pneumonia in her chest. 

Preliminary results show that her chest isn't 'normal' but it's not pneumonia either.. apparently just a bad case of bronchialitis. So she just has to work through it at this point and we will keep a close eye on it. 

After some back and forth over the weekend with continued diarrhea and vomiting (albeit not as bad as what it was at one point in time); we came up with a new plan of care for her feedings. 

We started at 30ml/hr for 24 hr on sunday. Every 24 hrs we will move up by 5 ml to see if she tolerates it. If she vomits- we will take 1 hr break from feeds then return to the same rate. If she keeps vomiting we will lower her to 5 ml lower and see what happens. At this point in time we are at 35ml /hr with slight vomiting but nothing substantial so we keep the 35 ml until tomorrow at rounds. If in 5 days we cannot get her to the point where she is getting enough formula/calories by g tube feeds alone..we will make a plan for her to go home on IV fluids.. it's not ideal but she can't stay in the hospital forever. At this point we would keep trying for a month and if no more progress after that we would start looking at other sources of the GI issue. Right now Gastroenterologists feel that her gut is still healing from the assault of having been on a formula she was allergic to for so long. They explained that it is likely the fingerlike projections on the inside lining of her intestines (villi) which usually stand erect may now be flat or dissolved all together because of the trauma to her gut and that they need time to heal which may explain why she still has so much diarrhea and slight vomiting. 

So we will see what happens.

We continue to be uplifted by our wonderful support system .We made the best of the Easter Holiday by having family come in the evening and share a meal and even did an easter egg hunt for madeline. It was very nice. See pics above. Most importantly we remembered the reason for the season which is Jesus who loved us so much he died on the cross for our sins then rose again so that we could have eternal life. Praise God!!

Please continue to pray for Baby Adalee who is back in the hospital (also believe she is having issues related to a milk protein intolerance) she ALSO went into surgery Friday as her Gtube popped out en route to the hospital. She was supposed to get off being intubated yesterday but have not heard yet what has happened. Pray that she will bounce back from this and can go home and continue to improve with her family. Pray for their comfort and strength through these difficult times as well.