Day of LIfe #114

Good Evening All
Can you guess what is different about these pictures? You guessed it- The NG Tube is back in :( - SO we put the NG tube in last thursday- Much to our chagrin and Madeline's dismay- However since putting the NG tube in Madeline has gained 8 oz (Good job!).

We met with the surgeon on Friday. Because of the concern of the risk of Madeline's Acid Reflux worsening with the implantation of the G Tube- The surgeon wanted to run a few tests first to see how she would do. She has to get an upper GI (scheduled for tomorrow) and a Stomach emptying test (already done) done. This will help the surgeon determine if he needs to do a procedure during surgery that would surgically correct her acid reflux. He also wants us to keep log of her spit ups to help determine how bad her reflux is. He would prefer not to do the extra procedure as there is a 1 in 7 chance that it will not work - and every time a procedure is done it decreases the chances of peritineal dialysis working should she need to go back on dialysis before her transplant. If he does not have to do the extra procedure he will just need to do the GTube surgery- We believe this would be in the next few weeks -She will likely have to stay overnight for observation due to her extensive history. Hopefully everything will go ok. .. . .

We also met with the Gastroenterologist- He changed Madeline's Acid Reflux medication and is somewhat disagreeing with the choice to do the GTUBE - he thinks we should wait a few months because of the risk of acid reflux worsening. We do not want to do that however because she needs to get nutrients/meds other than just bottle feedings and so far having the NG tube in she has pulled it out about 4 times. It is uncomfortable to her and would require extra training on how to put it back in for anyone who is caring for her- not to mention the risk of choking herself in the middle of the night. Seeing as she will have to get the GTube anyways- we just prefer to do it now. The Gastroenterologist would also like to get an ultrasound done to check on the hematoma on her liver.

So lots of appointments! Things have been very nonstop around here -with her having anywhere from 5-7 appts each week - and our regular responsibilites- it has been a bit overwhelming. It feels like there is no time for much these days. Obviously Madeline is totally worth it.Hopefully some of these appointments will drop off as time goes on and Madeline gets the things she needs/help she needs/ improves etc.


Madeline is sick this week and very unhappy due to coughing/sneezing/tired and general uncomfortableness. Hopefully she will feel better soon.


Her baby dedication is this Sunday! If anyone is interested it will be held at Gateway West Church in Cleveland. Services start at 10 30am- We love our church they are wonderful!



Please continue to pray for the friend we mentioned before- Brad Hulvey who is suffering from cancer - Please pray for him as his cancer has worsened. Please ask God for a miracle for him . His family has arranged two fundraisers for him. One this sunday (Oct 30th) from 12p-3p at Buffalo Wild Wings in medina (see facebook page) http://www.facebook.com/event.php?eid=289949747690722

also another on Saturday Nov 5th at Bunker Hill Golf Course in Medina from 5p-11p (see facebook page: http://www.facebook.com/event.php?eid=267299433293397)

Our love and prayers goes out to this family.