Praise the Lord

We are back home in Indiana, friends. Let me just say, as I sit in amazement. Lillian went in for her procedure and the doctor came out and said her airway looked totally open except a tiny shelf. They did go ahead and do the balloon dialation and used a chemo drug to spread on the airway to discourage further tissue build up. The doctor was simply astonished. She asked the whole OR if they had the right kid, but her airway was very much open now and even her stoma was smaller than a week ago. Seriously, I was sitting there in stunned silence. She said,' I don't know what happened, I really didn't anitcipate the procedure working for her considering the amount of stenosis there was, and now it is almost completely open...' I said ' it was prayed open'...she said you must be right. I feel like I've been on the fastest roller coaster in the land this week. There is absolutely no comfort like the Holy Spirit reaching down and showing us what God can do. I'm speechless for the most part. Speechless and so thankful. Everytime I close my eyes I am giving thanks. I said going into the surgery that that I knew this was God's path and not my own. He continues to bless us and answer our prayers even though it may not be the way I want it. We take her back in four weeks for a follow up in the office and then another bronch and closure of the stoma if needed. They may need to do one more balloon dialation, but she felt that was slim for the time. She did have quite a bit of pain last night, but she is doing well today.

"We can rejoice, too, when we run into problems and trials for we know that they are good for us-they help us learn to endure" Romans 5:3

Tomorrow, tomorrow

We begin the journey to stretching the airway. I'm not sleeping too well, I don't feel too stressed, but I keep waking up off and on through the night. I'm also having tummy troubles. I think perhaps I've worked up an ulcer...not sure, but I'm having some raging bad heartburn and nausea. Bleck! Lillian is doing well and is her happy little self. She seems to have calmed a bit on the snot oozing, which thrills me. She is sitting in her high chair having a feeding and laughing at Dora. So funny. Surgery is at one. Will be a long day. The first of many to come or perhaps its the many of many more to come?? God knows and that's all I need to know.

2 Corinthian 12:9-10 "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness,' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I will delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

New Date

The new date is Wednesday. I'm not even sure what to pray for...April 28.

What is worse than knowing...

Not knowing. Is it easier to grasp things if you know what is to come? I think it is for me. I think it is the struggle of not knowing how many more steps lie in the journey. Is what is being done the LAST thing being done....

All along, I think I've felt like life would return to a relatively "normal" existence once that trach came out. There was the time waiting and watching and praying. Close the palate and then we can attack the decann process. Get the trach out and we can work on feedings and speech. That is the way my mind saw things. But each time, there is a twist. Palate can't totally be closed and that affects the soft palate which affects speech and swallowing....get the trach out and the stoma doesn't close. Go to close the stoma and well, we know how that turned out. Then there's the NEXT procedure....how many times will have to be performed?? Is it permanently a solution?? How many more times will she have to go through this? Why? Am I not changing and growing in the Lord? Are my prayers not directed in the right manner? Will she EVER speak, will she forever be non-verbal. Can she ever eat normally?? I wish someone could just open up one of those handy little charts like they have for "normal" kids and show me the path.

I know God, and He is faithful. I know He sees us through this all. It is just my human brain that can't wrap around the NOT knowing.

Update

Not good news. Lillian was unable to have her stoma closed bc her airway has narrowed. She has quite a bit of stenosis. They said her airway was small for a three year old and they could just pass a neonatal tube into the airway. Next week, they will do a procedure that is essentially an angioplasty in her airway that will microfracture the tissue and hopefully cause it to stay open to the size it should be. This procedure may or may not be effective. They may have to repeat it up to four times to consider it a failure. They will try the first one next week, date to be announced...she will have to stay in the hospital overnight. If it does not work they will bring her back in two weeks and try again. This will repeat up to four times if necessary. If it does not work....they will have to do a bone graft to rebuild the airway up to the size it should be. I was totally unprepared for this outcome. Totally. Not at all what we hoped for. She was supposed to go back in to surgery at 1145 but they didn't take her back until almost 2. We have been home now about 15 minutes and I have a very big headache. Thank you for continued prayer.

Dates

The trip to KY turned out quite well. I really liked the new specialist. She was super nice and very informative. The date...April 20th. Won't know the time til the day before, but that is the scheduled date. A few troubling thoughts....she said, generally when the stoma doesn't close it usually means there is still a need for supplemental oxygen. Ok, so maybe that is the only troubling thing she said, BUT...why do I always think that these things will be this easy no muss no fuss ordeal. She wants to do another bronch when she goes in to check the airways, then she will essentially reopen the healed portion of the stoma, disconnect the the tissue from the esophagus. Then she will pull over muscle to close the hole then pull the skin together. She will have to be an overnight stay just in case. This all scare me. It scares me. This will inflame her airways, cause swelling and pain. I'm scared. I cannot even what if. It's like the trach coming out all over again.

We will then go back to see her for follow up two weeks later and she will also have some preliminary allergy testing done. Hopefully an answer for the snot factor.

21 days to go.

Tomorrow

We will visit a new ENT, a laryngologist...a specialist in the office of the ENT. Seriously...*shakes head* Anyway, hopefully we will get a surgery date. Snot continues to be an issue. I called to get her into the pediatrician (after I've tried to do all that I can to manage at home and it is just getting worse) and I can't get her in until Wednesday. As I examine my tired-ness, that's the best thing I can come up with..sorry, I try to think of those who are also in less than ideal situations and are struggling. It is just difficult and worrisome to have a little life that is so fragile. It is so hard for my brain to comprehend how it is to be sick ALL the time.