So I thought I was speechless the week before I wrote the last post, but I had no idea the silence that would come from a complete lack of words the past two weeks. I've been telling people for almost a week that I am trying to update the blog, but I honestly didn't know what to say, and still don't really, but I'll do the best I can. We're on this extreme emotional roller coaster right now...
Labor Day weekend, a lot of my family came down from Indiana to meet/see Skylar and celebrate my birthday. I was hoping for a good weekend, but wasn't too optimistic after the incident on Friday when her stats weren't looking so good. Saturday, Skylar struggled off bi-pap pretty much from the moment we took her off. She wasn't crying in a lot of pain, but she certainly didn't look happy or comfortable either. After a few hours, we put her back on bi-pap because it just seemed to help her more. We were thinking that all of the rest on bi-pap Saturday might help her have a better day Sunday, but it was quite the opposite. Sunday, we tried to take her off bi-pap and she cried like she was really in pain for the few minutes we had it off to run the cough assist. It was heartbreaking. There's a whole other element when people are around too - you want Skylar to have a good day so that's how they remember her... you don't want to freak people out if something bad happens, and many more thoughts go through my head, but I'll spare you.
Back to the weekend... Knowing that she doesn't make a lot of sound unless she needs something, when she does make sound - especially "loud" for her, it's a big deal. We put her back on bi-pap and she was better temporarily. Still not happy, but not in pain. Then, for seemingly no reason, she started fussing and crying - eyes pink, face flushed, tears streaming, mucous/drool pouring out of her mouth, and these awful little cries. It was horrible. We asked my family to leave, even though they were leaving that night to go back to IN, because we needed to process everything and care for Skylar without worrying about what everyone else is thinking and freaking them out. I hate that we had to say good-bye like that, but they understood. Ashley Manross came over that evening to possibly offer some insight with her experiences and just be a support to us (mainly me :) It was helpful and eventually Skylar calmed down and was able to get some sleep. Monday was another horrible day with painful crying, sad faces, uncomfortable movements, and just a rough day period.
I listened to her lungs and they sounded perfectly clear. I ruled out pneumonia, a cold, or anything like that because she didn't have fever, no gurgle in her lungs, and didn't have any other signs of illness. I didn't think it was a collapsed lung because I had been told that if it were, Skylar wouldn't be able to keep a high oxygen level on bi-pap and she was doing just fine. I called our pulmonologist, but she was out of town for the week. I called our pediatrician who was gone for labor day but would be back that night and said he would come over to meet with us and evaluate her. Her lungs sounded good to him too and we tossed out the thought that her body just might be quitting on her and this could be the end. I called an SMA researcher out in Utah who has focused her career on SMA (she's also a neurologist) to get her input and she said there were a couple last ditch efforts we could try before we accepted this as the end. Just in case those didn't work though, we decided it would be good to get hospice in place.
Side note: We had just been approved for in-home nursing and they were supposed to start the Tuesday after labor day. The really crappy thing about insurance is that they will not cover in-home nursing and hospice at the same time so we had to cancel the nursing after all the work to get in approved and sign up for hospice instead. SOOOOOOOO Frustrating! The crazy thing is that we need in-home help now more than ever because she's struggling more, but apparently insurance doesn't look at it that way! They pay hospice a daily rate instead of per hour or per item so all other care is void. In-home nursing was going to be my help, my relief. However, I am okay with letting it go because I know hospice is better for Skylar right now, even though it would be nice to have both...
Last Ditch Efforts: We increased her bi-pap pressures and her cough assist pressures and put her on an antibiotic just in case something was starting. We met with hospice to learn more about what they can do for Skylar and got that set up. They care for children of all ages dealing mostly with pain and symptom control, counseling if needed, and communication with doctors. Basically, for us, they are going to be our pain management team from here on out and are also supplying us with equipment and supplies. A nurse will come to our home weekly or as needed to evaluate Skylar (check her lungs, vitals, etc.) and to make sure we have what we need - including morphine and other medications just in case. It doesn't mean we think she's going to die in the next few days (although when we set it up, we had those thoughts) but we're just wanting to be more prepared in case something does happen...
We were really surprised how fast things happened and how unprepared we felt. I had been putting off thinking about hospice, burial, etc. for obvious reasons, but since my last blog post, we've been forced to go there, which was good for us. Don't get me wrong, it totally sucked, but we needed to figure out what to do when the time comes. With that said, if you've called us in the past week or two and haven't heard from us, we haven't really been up for talking. Sorry. It doesn't mean we don't love you... We've hit record lows in our lives - Skylar's oxygen was at an all time record low at 40 about a week ago, while Kyle and I have never been so devastated and at an emotional low point with the whole situation. We were preparing to say good-bye to our little girl, which is something you can really never prepare for. I recall saying, "The whole thing just sucks and there aren't really words to describe it, other than I have a slight glimpse into what Jesus meant when he said, "My soul is overwhelmed with sorrow to the point of death" in Mark 14. I can only say that I have an extremely heavy heart right now and fear what it will be like to hold my baby while she dies and watch her body fail her." As someone who likes talking to anyone and everyone about anything, all I wanted to do is sit with my family and cherish every minute of it without any interruption from the outside world.
The good news is that she's bounced back a little bit. I wrote in an email, "We had called in hospice, they came yesterday morning, we had morphine and other heavy drugs brought to our house, and they told us what her death might be like to prepare us... Not the best morning I've had to say the least. After they left, we took Skylar off her bi-pap to do the cough assist and suction her out and get her machines cleaned out, and she surprised us. After we got all the junk cleaned out, instead of painfully crying like she did the day before, she actually smiled. I can't tell you how much that was needed for Kyle and I - to have our spirits lifted. She seemed almost to be back to her old self and actually gave us a giggle or two. I told Kyle that she heard hospice talking and decided to get her act together, lol. She was able to hold her own for 4 hours or so. Anyway, we are still keeping things in place just in case it was a temporary good day, but we're clinging to that good day with hope for more."
Since then, we've had good days and bad, and continue to take things a day at a time... We're still not entirely ready to be social again as her days bounce back and forth, and therefore, our emotions and everything else that goes along with that do too. For example, two days ago was a little rough. Skylar was holding good oxygen levels, but at the sacrifice of her heart rate which was competing with that of a humming bird so we put her on bi-pap pretty much the entire day to give her rest. Yesterday was a great day. Not only was Skylar holding great numbers (oxygen and heart rate) all afternoon off bi-pap, but Nora Gooden and her parents dropped in to say hello after visiting the GA Aquarium before heading back to TN. It was incredible to see this amazing little girl in person after watching all of her you tube videos and keeping up with their blog. Her half-toothed smile and sounds that showed off her personality seriously melted my heart!!! Watching Skylar see another type 1 girl for the first time was fun too because Nora was laying down on the same level as Skylar and was able to communicate in ways I am sure we will never know. Skylar was locked on Nora and was even more talkative after hearing Nora's vocabulary :) It was just a fun day. I'll be posting pictures soon! Today was a good day too. Skylar seems to have a new favorite movie instead of Cars... it's now Finding Nemo. She has consistently smiled every single time the past few days whenever Dori tries to speak whale - one of the cutest things I've seen! Hopefully I can update you with more good days coming this weekend.
Now that we've updated you with the major changes, hopefully they won't be as lengthy unless something else happens... I am going to stop promising to make them shorter, because I feel like they just get longer. Sorry! Thanks for reading :) Stay tuned for more pictures. Peace.