NY surgery #6 update

We are home!  It's crazy that we were there and back already. 
Things started out a little hectic.  Nora had been sick the week before we left, so I took her in to get a culture taken from her trach. I wanted to make sure it was nothing serious/something that should be treated.  If we hadn't been leaving the next week, I wouldn't have done anything about it, but I didn't want to assume that it was something that would go away on its own, only to later find out that if we would have started an antibiotic, she would have been fine for the surgery.  Anyway, I took her in, but it takes a couple days to get any results, and in the meantime, she started feeling better.  Nora had her pre-op appointment a couple days later, so I told her pediatrician about her recent sickness. I still hadn't gotten the results back, but even if something showed up, I wasn't going to treat her, because she was doing fine symptomatically.  Whenever we do a trach culture, something always grows.  I only wanted to know if it was something serious.  Anyway, her pediatrician agreed and thought she looked fine for surgery.  She was still needing more suctioning than normal, but everything else looked good.  

Tuesday morning we needed to leave for the airport at 6:15am.  I got a call at 5am from the hospital letting me know that something had shown up in the culture and they wanted to let me know so I could start her on an antibiotic before we left for NY.  There was no way to get an antibiotic before we left, and I had already decided that I wasn't going to treat anything, but that call made me second guess myself and gave me a small ulcer. It was too early to call the Dr in NY, but I didn't want to fly out there only to be sent home because she wasn't healthy enough! Oh goodness. I prayed quick and didn't feel like we were supposed to stay, so we left for the airport. We hit traffic and I could feel my ulcer growing.  I'm sure if my mother is reading this, she would interject with "I would have left earlier if it were up to me" :) I don't like to leave too early because then I am chasing a very active little girl around a dirty airport! Anyway, We made it with 45 minutes left.  My ulcer continued to grow when our bags were "late checked", but as we got in our seats, I saw them throw our bags onto the conveyor belt. *Sigh* I don't know why I got so worked up-God always takes such good care of us, down to the smallest detail:)  

We had an appointment with the Dr Tuesday afternoon and he said he had no concerns about Nora's recent sickness and was comfortable proceeding with the procedure the next day without antibiotics.  Phew!

A little frozen hot chocolate to celebrate:) Thank you for all your help, Lydia!

On Wednesday morning, everything went as scheduled.  It was a short procedure-I think a little under an hour and a half? Just enough time for some breakfast and two games of cribbage (I won't say who won;) 

They injected several areas in her airway and the base of her tongue with bleomycin.  The doctor was happy with how her airway is looking, and thinks Nora could be ready for decannulation (getting her trach removed) by next summer!! There is no guarantee, and there are other factors that need to be discussed, but oh my goodness-music to my ears. Cue the Hallelujah Chorus! I immediately envisioned dropping all three of my children off and just going.  I don't know where. Just somewhere. Somewhere without any of our sweet, wonderful children:)  Right now, Nora has to be watched by a trained care giver, so that makes it tricky for Evan and I to get away.  Even if we could go away, I don't think I'd really be able to relax. Anyway, it was exciting to hear.  We talked about the next steps, which will be working on her tongue (which can be done at Children's in Milwaukee!) and then another face surgery in January.  

Nora did great after the procedure.  I wish I could have gotten a video of her waking up.  As soon as her eyes popped open, she flew up to a sitting position, took a look around and then held out her arm, tapped her IV with her sweet little finger and said "owie".  One of the parts that they injected affected the vocal chords, so I was VERY happy to hear her say something right away.  She held her arm out and said "owie" to anyone that happened to look her way:)  (I know I said it on FB already, but in case you didn't see it, Nora's new word is "owie" and everything is "owie".  A wall with chipped paint is "owie":) 

Nora showing off her "owie"

I thought that we were going to have to spend a night in the hospital, but we ended up being released after 2 hours!  It was SO nice to go home/back to the Ronald McDonald house.  The hospital is nice, but not being in the hospital is much nicer:)  

Nora had a slight fever when we left the hospital, which they said was normal.  You could tell she didn't feel great, but after a little tylenol she was comfortable.  They had prescribed a stronger pain med, but I don't like to give it unless she really needs it, and she did fine without it.  Her tongue/mouth started bleeding on Thursday, which happened the last time she had these injections.  She looks like a little vampire with blood dripping down her face.  Hopefully that won't last much longer. 

If I had ever woken up to this with the other girls, I would have freaked out! This was nothing compared to some nights.  Such a sweet, tough little girl.

We made it home without any issues on Friday-our plane was even 45 minutes early! 

Thank you so much to all of you that have been praying.  We praise God for how He is working in Nora's little body! Although she is not so little any more.  She is going to be two in two months!  Two years ago at this time, we didn't know if she would live past the delivery. God is so good!  I am amazed when I think of all that has happened.  I wish I had started writing updates from the beginning, so I could look back at things (although, judging from my track record, it probably wouldn't have been very consistent;) Anyway, we can not thank you all enough for all the prayer and encouragement and the many, many ways you have come alongside us on this journey.  We are so grateful. For those asking how to pray specifically-please pray that these injections will be effective and that there would be no harmful side effects.  Please also pray for wisdom for the doctors as we decide how to proceed with certain procedures and medications.  You could also pray for her speech, hearing, oral eating and eyesight-all things that are affected by her lymphatic malformation. Nora is such a fortunate little girl to be loved and prayed for by so many!  You are all so wonderful.  Thank you for praying!