Bronch Results

We had to leave the house this morning at 5:30, for our appointment in DC. I got up at 4:00 and started to get ready. Tom woke up shortly after to help me. He is so good. While I was busy getting myself and Harlie up and ready (had to give her two different breathing treatments) and packed, he took the dogs out, made me coffee and a breakfast sandwich to go, and he went and started my car. And that's when he noticed that I had NO GAS!

He came upstairs and said something about getting gas. I told him I didn't need to because I just filled up Wednesday night and I haven't really gone anywhere since. He said no way, you're past empty. I almost started to argue with him, because I fully believed that I got gas on Wednesday night. 

Wednesday was my Mom's birthday and we all went out to dinner to celebrate. Wednesday was a really busy day with lots of running around. Sometime during the day, my gas light came on. I had NO idea when. Did I mention that it was a crazy day? So, I was going to stop on my way to dinner. But, then I just didn't have time. So I said I would push it till I was on my way home. In my mind, that's what I did. But I didn't because I ended up staying later than I intended and was late getting home. So, I forgot to stop!

On Thursday I never left my house. So, I didn't give it another thought. 

So, it was 5:30am and I had NO gas. Tom took the gas for the lawn mower from the shed and put it all in my car to buy me time to get down the road and find a gas station that was open (the ones by our house were not open). 

That's how my morning started. I have run out of gas twice. And it would be four times if it weren't for Tom. Not that long ago I asked him to go put gas in my car. He ran out of gas on the way to the station less than a mile away. He's such a good husband. ☺

Anyway, back to Harlie, she was a champ, as always. Dr. Pillai (pulmonologist) came out to talk to me first. He said he did not find any casts! He said her lungs actually looked really good. I am so relieved! I can't believe it, but it looks like she got the best case scenario!

He was thinking this probably means she does not have Plastic Bronchitis and she could stop the Heparin breathing treatments. And we probably don't have to go to Children's Hospital of Philadelphia for the lymphatic mapping. Hallelujah!

Dr. Preciado came out then and told me that he cut something out of her airway (not remembering his words right now, maybe scar tissue). Her stoma is still really friable, and she bleeds so easily.  But the reconstruction looks good. The loss of her voice must have been due to inflammation from the virus a few weeks ago.

We started the Heparin breathing treatments on Monday and by Monday night, her voice was already stronger. After four days of treatments, she was able to tolerate the speaking valve again. And this morning in pre-op, she was so talkative and clear! Maybe the Heparin helped, maybe it was coincidence. I don't think it makes sense that it would have helped. But I've learned that in medicine, not all questions get answered.

He said he wants to do another scope in six weeks. And Dr. Pillai said he could take a quick peek in her lungs again and see if anything changed.

So, I should be able to relax a little now. Which will be a really nice change.

They admitted her to the CICU for the night and will send us home in the morning.

After she got settled in and some time had passed, Dr. Pillai came by. He said he let her docs in Richmond know about the bronch. They had a difference in opinion on what to do from here.  They want her to continue the Heparin treatments and they think we should still go to CHOP for the lymphatic mapping.

So, I need to talk to the people at CHOP to find out more about what this mapping means and what she has to go through for testing. Then we need to make a decision on what we want to do.

For now, I'm happy because I am WAY less fearful. I'll start to think about going to CHOP next week. 

Unfortunately, I think I am coming down with something. I have gone downhill since this morning and feel so horrible now. I was hoping it was allergies, so I took some medicine earlier. But I am feeling worse by the minute. It has made writing this post so much more difficult. I'm falling asleep as I type this!

Before I go, today is Murphy's 14th birthday. It feels weird to not see him on his birthday. The other night I told him I was really sorry that Harlie and I wouldn't be home for his birthday. He said it looked like I didn't have a choice, so he understood.

Since we couldn't celebrate today, we had his birthday dinner last night. I got him an ice cream pie from Gelati Celeste for his cake. It was amazing!

So, Happy Birthday Murphy! We love you so much!

Thank you for all the support, kind comments and thoughts and prayers!

Much love,
Christy xoxo