This week has been hard on my heart. They say most parents of kids with special needs have at least some PTSD, and the older my kiddos get the more I realize how true this probably is. But for my girls are 100% + worth it! This week has dug up feelings I have tried to forget. I try to live in the now... it is something my girls have taught me. While my calendar is full of appointments and there is a lot of time management that has to occur for us to function I use to be a crazy planner and I have let that go to live in the now. Many times my plans get changed from what I thought at this point anyhow (and I am so thankful when people understand our plans have to change sometimes but still love us enough to get together when we can) But this week has reminded me and dug up the feelings of when Jilli was so sick when she was little. Back at the times of THIS blog post. While Lydia very much is her own person with her own personality, this week has been a flash back to when little Jilli was so sick.
Wednesday went pretty well. Her normal amount of choking in the morning but overall we had a pretty good day. It was the down day that we needed. Wednesday night into Thursday morning was rough. I spent more of the night awake with her then asleep because she was choking so much. The episodes would only last a few minutes and then she would fall asleep again and just as I would start to get to sleep again too it would start all over. Her movement monitor also went off during the night although I am hoping it was a false alarm. While she was choking frequently none of the episodes were anywhere close to as bad as Monday's. Thursday morning I woke up debating if I should call GI and Lydia gave me the answer by choking and vomiting a ton of clear liquid all over me. I called the GI nurse and told her what happened and she said she would call me as soon as she talked to the doctor. When I had talked to the dr on Tuesday she had said that if the choking got too much worse we would have to admit her so after talking to the nurse I started packing us all just incase (that is not a quick task with all the stuff that comes with the girls) and then I waited and waited and waited. The nurse finally called back in the mid afternoon and said that she talked to the doctor who is away at a conference and the dr talked to pulmonology and they want us to see the airo-digestive clinic at somepoint and that the doctor would call me herself when she has a chance around the conference she is at but that we were not being admitted at that moment. Lydia had a rough day Thursday. She screamed anytime I put her down and once she started to scream she would choke. It was a rough day.
This morning Lydia had her upper GI done. The plan had been for her to go into floro and they pull her NJ tube into her stomach and do the test putting the liquid through her tube and then wheel her to IR to have them either put the tube back where it belongs or replace the tube. When we got there and IR doctor and nurse came out and said they decided to just do it all in IR instead of wheeling her around for which I was grateful. They took her back and about 15min later a different doctor came out and asked if there was a reason we were doing it this way. I said no that to get this thing scheduled has been a mess and I agreed to what they all figured out after a month of back and forth. He said it would be easier to just stick an NG down her mouth and into her stomach and do the test that way instead and then not mess with her NJ at all. He said he had tried to contact the GI doctor but could get her because she is out of state so he was looking to me for the ok for the new plan. I told him it was fine with me as long as it got what GI wanted. He said it would so we agreed. About 15minutes later they brought her out to me. She was calm when they brought her back and as I held her she just smiled at me. While my goal was to hug to her comfort her, I think she did most of the comforting at that moment. That smile is exactly what my heart needed. Today has been better then yesterday. We were up a few times during the night but not as many. Right now she is happily laying in her swing looking at me while I type.
I just want to do what is best for her. I just want to help her the best I can. As I was driving today I was pondering about worry. About how when I worry about something over and over to the point that it give me anxiety that is bad because it becomes consuming and my main thought, but that God does use worry at times... worry that causes action, this worry is different, its not mind consuming playing like a broken record, instead it causes you to move, to react. Right now I am worried about Lydia. While she is finally growing and getting the food in that she needed (step 1) these choking episodes are scary. Some are rather innocent and Brent and I shrug them off while others are frightening. I'm worried about her aspirating; and while it would only be stomach bile, stomach bile still does not belong in the lungs. Last night her lungs sounded rather rattly but are better today. But this worry is causing action. Right now Lydia is always within sight and sound of an adult. We have been told by multiple medical professionals this week that if she turns blue we need to go to the ER asap. Medical professionals do not randomly tell parents to bring their kid to the ER if they turn blue because the likelihood of most kids randomly turning blue is low, but right now Lydia's is higher. So we have adjusted ourselves to making sure she is always watched during the day(we do try to get some sleep) and keep the movement monitor on her at night. Right now the plan still is to do surgery on the 9th. Right now the still feels so far away but I'm sure with Brent's surgery this week we will be busy.
Prayer Requests:
1. That if we need to do more then we are doing now to help Lydia that it is made known clearly as well as a way to best help her.
2. Lydia has a speech appointment on Monday where I need them to understand how not safe it would be for her to eat orally right now. She is not handling her own saliva at the moment and I know what it is like to give a kiddo in that position milk orally. We have to jump though this hoop to move forward but I am still stressed that they will try to push her too much.
3. Prayers for the doctors who are trying to help us. My kids are complex and they like to throw the "shoulds" out the window and this throws others for a loop. Our doctors work very hard for our kids and even when we don't always see eye to eye on everything they still are doing what they think is best because they care about my kids.
4. Prayers for Brent and I. The Tenth Avenue North song Worn ("I’m Tired I’m worn, My heart is heavy, From the work it takes, To keep on breathing")is how our hearts feel at the end of this week but we are trying to remember that He has this all. That He will use this all for good (and no my definition of "good" is now rainbows and sunshine and magically everything is "amazing", my definition of "good" is when everything leads back to God. When even in the struggles we can still say "God is good and all the time God is good." I'm still amazed that God entrusted me to be these amazing girls mom and I have seen over and over how He has used all of this for His good... but that doesn't mean there are not times that are hard) Right now we are each dealing in our own ways (he is puttering with computer stuff as I blog) we are trying to make a conscious effort to help each other.
5. Brent's surgery on Wednesday. It should be routine but surgery is never fun. Prayers for the doctor and staff and for his recovery. Prayers for figuring out the balance here while he heals. Prayers that this gets rid of the infections he has been having that have been causing a lot of issues for him.
6. Prayers for Jilli. She not only got thrown into this sister thing but the last 10 weeks have been crazy. It is really starting to effect her. She is very stressed about where daddy is and when she will see him next. This is new and causing her to wake up screaming many days because she wakes up after Brent goes to work (Brent's schedule really has not changed, but her's has). I've pulled out many of my teaching tricks and while it is getting better she is still having a hard time. Today she had a really rough day and her behavior was not like her at all. I get part of it is that she is 3, but part of it also is that she is a very smart little girl who realizes a lot is going on right now and she is trying to process and deal with that and that is a lot for a 3 year old. She is handling it like a 3 year old which is all anyone can expect from her but it is hard when that turns into her trying to drive a powerwheel into a friend's inground pool this afternoon while she laughs at us as we tell her to stop and three adults had to go running and stopped her just in time. On top of the stress of the girls health it makes 3 year old behavior feel stressful. She is also coping with the fact that her legs are causing her more pain (figuratively and literally). We have an appointment in October for that but in the meantime she is asking to be carried a lot more.
7. That insurance quickly decides to help pay for formula. From Walmart it is $44 a can which would total $394 a month. Thankfully my dad works for Abbvie so we were able to just get a case of it at a discount however there are limits on how many cans of formula you can buy at the discount. Lydia needs to be a little older to qualify for the state program that helped with Jillian's formula costs until we got insurance to help pay. This getting taken care of would take one things off my mind.
Thank you so much to the people who love on us and support us and walk this journey with us.
We really appreciate it!
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| the girls cuddling |
Those two cuddling is the cutest thing I've seen all day! Be still my heart!
ReplyDelete~Stacy