January 15th: *UPDATE on our sweet Addison* The past 3 days have been the most incredible, most amazing, most exciting days for all of us!!! Monday, Addison was EXTUBATED!! She also got her mediastinal chest tube removed! She was put on 1 liter of oxygen and her tube feeds were restarted at 2ml/hour. She was doing wonderfully!! Tuesday, when we got here, we were told she had an awesome night and was going to be getting her central line removed and later in the day, her arterial line was going to be taken out as well!!! We were also told that her chest xray looked SO much better than the previous day and that her lungs had cleared up almost completely (her right lung was the one giving her troubles)!! Also, she was on NO OXYGEN - JUST ROOM AIR!!! WAY TO GO PEANUT!!!! She had a very good day yesterday and her tube feeds were increasing...up to 6.5ml/hour by the time we left last night! Also, physical therapy came in to assess her sucking/swallowing ability and seemed SO impressed by the way she was doing that they allowed us to start binki training!! She is taking the amount of feeds for an hour, 3 times a day, through a syringe attached to a binki. We have to take it pretty slow because we dont want to overdo it but I will tell you, I just got done feeding her (binki style) 11ML (which is now her current feed amount) and she did SO AWESOME!! I had to pull back on the syringe because she was sucking SO hard!! Her goal feed is 15ml/hour and she should be there later on this evening! PROUD MOMMY & DADDY!! The most exciting news?? AFTER 18 LONG, WONDERFUL, TERRIFYING, SAD, HAPPY, EXCITING, EMOTIONAL, FAITH-FILLED, HEAVY HEARTED, JOYFUL DAYS IN THE PEDIATRIC CICU (CARDIAC INTENSIVE CARE UNIT)...WE ARE MOVING TO THE PEDIATRIC FLOOR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! This will be happending TODAY provided there is room for us, but we are floor ready and couldnt be more excited for Addis new adventure. Hopefully, she will continue to feed like a champ and we can come HOME! Addison still has her left chest tube in, but it should be removed here in the next couple days as long as its not putting out fluid. She had a little bit of drainage late last night but hasnt had any since then and didnt have any yesterday, so thats a good sign! All of the medications she is receiving are being given orally (well, through the feeding tube) and she still has her PICC line in for additional nutrients! She has come SO, SO, SO far and we couldnt be more thankful for the progress she has made and will continue to be making! She still has a few obstacles to overcome, feeding is the BIG one. They are hoping to have her breast-feeding by tomorrow or Friday!! I CANT WAIT!! She will still need another MRI - MRV - to assess the clot in her brain. We had been told that it was smaller or completely gone, but this may not be the case. It is DEFINITELY smaller, but we are under the impression (from the neurology consult) that it is not completely gone. Neurology doesnt seem too concerned about it because of the way she is responding and moving all extremities and her pupils are great so, we will cross that bridge when we get there. She will need to be sedated & intubated for the MRV to make sure she holds still, so thats a little sad, but she will do great, like she always has!! We also heard this morning that the hematology doctors were coming by to talk to us regarding the genetic clotting tests done on Addi after surgery. The ICU fellow gave us a little insight on what they were going to talk to us about and basically, it sounds like she had a test come back that lead them to think she is prone to clots while in a vulnerable state. ? We will know more after we talk to them. Not many babies get tested for this kind of stuff unless its warranted (which hers definitely was!), so were not incredibly concerned about it at this point. We will just continue to PRAY for GOOD news from the hematology consult and of course, the MRI!! I cant even begin to tell you how incredibly grateful we are for all of your love, support, and prayers. I want you ALL to know that I am praying that God blesses each and every one of you EVERY DAY!! The amount of support we are receiving is AMAZING and we and Addison will be forever thankful to all of you for everything you have done, and are doing. I wont be posting an update for a little while because I am hoping to be busy feeding and enjoying the company of our little sweet pea!! Also, we have BIG company coming to visit! Great Grandma Diane & Great Auntie Linda are flying in from Wisconsin to see Miss Addison TODAY!!!! We are SO excited to see them! Thank you all again, SO much...we just cant say it enough! Please continue to PRAY for sweet Addi and her recovery and we hope to see you ALL VERY, VERY SOON!!!
Posted on: Tue, 21 Jan 2014 01:39:44 +0000
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