I would like to begin this post by explaining a little about my last post. I am using this post as an outlet for my emotions. Sometimes my emotions are not so pretty. But, such is life. I think it would be a disservice to myself, and to those reading, to pretend I am happy and upbeat all of the time. I have days, hours, minutes where I am thrilled with Kyara's progress and I feel very positive about her future and her recovery. But, I also have times where I get very upset by her current state and I feel unsure and even negative about her recovery. To pretend things are always great would be a lie. So...in a nutshell, there it is.
So today... I am feeling better than I did last night. The video recorder is put away and I am focusing on the here and now. Kyara was quite agitated today. All day, she has been sweating, very tight, and making faces and complaining noises. I told Gunars, it wasn't like her storms, it seemed more like she was mad or something. Her stomach was also very tight and distended. It is full of air and she is not passing gas to relieve the pressure. Of course, I have been asking anyone I can get a hold of to look at her stomach. Dr. Marcus (of the doctors from the PICU that has been following Kyara) came this morning and said she was still distended, but looked better than Saturday. Well, no offense, but Dr. Marcus was not here Saturday. He has seen her x-ray from then, so I will give him a break. He also started her on Miralax (a laxative) and an anti-gas medication. Tonight, though, I was still quite unhappy with the way she looked. I finally talked to Dr. Coran on the phone (he is out of the state until Friday) and told him I was very concerned about her. Her stomach seemed to be more distended than even this morning and that I was unhappy that noone was taking it seriously. He called Dr. Marcus and told him to come back to Kyara's room and check it out. Dr. Marcus agreed that she looked worse than this morning and decided a rectal tube would be a good idea to allow release of the air in her colon. Poor baby! He said either he or one of his interns would place it. I told him, "So, YOU are going to place it." I am not having one of the interns place a tube up my daughters bottom. No way. She has been through enough. Someone with experience can do it. So, Dr. Marcus left the room to get the supplies, and Sam (one of the nurses) pulled Kyara's knees up to her chest and started moving them back and forth. Well, Kyara let out a HUGE fart, and some poop! Yeah!!!! She then farted again!! Double Yeah! (Sorry about the fart word, substitute it for something else if you find it inappropriate. :) ) When Dr. Marcus came back in, he decided not to do the rectal tube because her stomach was so much softer! Is Kyara playing games with us??? The threat of a rectal tube would make me fart! Since then, Kyara has passed gas at least 4-5 more times and her stomach is SOOOO much better!! I am thrilled!
Other good news...
Kyara chose the material for her orthodics today. The people who make the orthodics had samples on a chain that were 4x4 so that patients can chose the color and design on the braces. I told Kyara to smile when she saw one she liked. The guy suggested a pink on with girls dancing on it, this is a popular choice. When I showed it to Kyara, she closed her eyes to turned her head slightly away from it. Ok...not that one, I guess, maybe it was a coincidence. I tried one with butterflies next, same thing...closed eyes, turned head. Wow, ok. Then I tried one with bunnies. She, again, closed her eyes and turned her head. So, now I am thinking, is she really saying "no", or was this all coincidence. Well, one more "girly" one to try. So I held up the one with ladybugs. Kyara stared at it and smiled!! Her smile comes out looking like a smirk but whatever! It was a smile! I think she clearly chose the one the wants. Without question. She is communicating with me in subtle ways and I am over the moon.
I prayed last night that God would help me see the ways he was working with Kyara. I think sometimes I get so involved in the big picture, that I don't look at the subtle signs. But here they are... Kyara passed tons of gas, and Kyara chose her braces. What a fantastic day! Thank you God!
14 comments:
Thank you for being so honest with your feelings and your experiences! I have to say, you had me laughing tonight with the gas story. Kyara is making progress - slow and steady. We are still praying!
The Brandons
Genie,
You are Awesome! Personally, you can say whatever you want and you should. Unless someone is in your shoes, they can't dare judge what comes out of your mouth even if it "disturbs" them. This blog is to keep everyone updated on Kyara and her progress, it also is a major way for you to vent without exploding! We applaud you, even when we wish you were saying only "sweet and rosy" things. We cry and laugh with you, we pray continually for God's intervention on your entire family's behalf. Oh, by the way, you can say "fart" but "fluff", "barking spider" or "toot" for the sensitive ears. That would not include us. Love you all dearly, Spokane
Fantastic day indeed!!!! I was so happy when I read your new update, my heart is smiling!! I can't imagine the emotions you feel at times and I am sooooo proud of you for standing up to the Dr.s for Kyara. It's funny how the nurse came up with a much easier solution. Dr.s can be quite arrogant and intimidating sometimes, don't let them bully you!;) Don't get me wrong, Dr.s are wonderful people and deserve much respect, but some have better people skills than others.
You should not feel the need to apologize for your feelings and emotions---if you didn't have bad days, fear and anger, etc. we would all worry about you. Do what you need to do, say what you feel and cry if you need to. We are all here to support you and help any way we can.
As for you little Miss Kyara,
You never fail to amaze us all. You are the strongest, spunkiest, and bravest child I have ever known! I think Ladybugs was the perfect choice. I hear they are supposed to bring good luck, so I am expecting great news in the days to come. We love you sweet girl. Keep up the good work and we will carry you in our hearts as we lift you up in prayer. God is awesome, You are living proof!!!
The Henley's
Genie,
Honey please! You say anything on here you feel! It means a lot to me to be able to hear and have a sense of your feelings. This page is for us to know how all of you are doing! LET IT RIP! Whenever! Ladybugs! How precious!Praying for all of you and love you more than you can imagine. Hug Peggy! Wink
This post made me giggle b/c I could just hear you saying all that....
YAY for good news--sounds like more baby steps to me.
Keep talking, keep blogging, and keep being honest...can't imagine there's anyone reading this thing that would expect any less of you.
Still praying!
Love,
Kate
Dear Genie,
Please know that there is absolutely no need to explain or apologize for the posts you write... you can write and say and do whatever you want, it is an outlet for you and we are simply spectators...
We are so relieved to learn that Kyara's stomach is better and is passing gas. It is a funny and somewhat ackward human condition, but like they say, even a queen farts every now and then... and to be fair, Kyara is an angel, so angels pass gas too!! Who would have thought, huh??
Hang in there, sweetie. Kyara is slowly making progress and soon enough you'll have Gunars and Skylar back at your side. Hope today brings more good news your way.
Genie,
I am so glad to hear you more upbeat today. I know each and every day brings new emotions. Paul is on miralax too, it is great for pooping purposes and it is very gentle and not habit forming the only side effect which I am sure they have told you is it gives a lot of gas, so if they continue to give her gas meds that is great because she is really going to need to alleviate that. I am glad she was able to and continues to. I know when Paul had the g-tube we used to be able to air it out, I am not sure if that is something the j-tube does being it is not in the stomach but I am sure they would have told you. I am so glad things are working out little by little, I know God is working with all of you and is with you, specially when you are feeling alone and down with no hope, that is when he is with you the most. I know for me it was hard to believe that when things were not shinny and good but it is the truth. We will continue our prayers.
Love,
Ivette
Ok... let me start by saying: WHAT A RELIEF!!! Literally! We all know what it feels like to fart/pass gas ... whatever... it is a great sensation, and it's great that Kyara was able to do so!!!
No need to apologize for the changes in attitude... this blog is an outlet for you ... and you should absolutely be honest and transparent in your feelings... frankly... I think you're being awesome.
As for Kyara's selection on ladybugs... I fully agree... she's a real tough cookie... she knows what she wants and no matter what is going on around her or in her ... she will make sure she gets what she wants.
Hang in there! You guys never cease to amaze me!
Tina, Carlos & Nico
Genie! You go! And don't let those drs get away with anything. It's so easy to think b/c they are docs they know best, but you are her mom and you know her better than anyone. You keep at em just like you are. And hangin there! XOXOOX
Farts are awesome, aren't they? Keep it up girl!! Haven't heard lately how the sleep is going, is she doing better with her sleep?
The Lopers
Way to go Kyara,
Genie,
I know as does everyone else reading this we have no idea what it is like to be where you are and you sharing everything is to me a honor and blessing. Hopefully it is also a chance for me to share some of Jesus's hope with you when you are going through a rough patch.
You go right ahead and post away girlfriend for if we did not know when you were down we would not have a chance to help lift you up.
God bless you Kyara Gunars and your entire fanilies. Prayign in Georgia.
Cheryl
Genie,
Perhaps the message from the parent and child you met w/ a similiar injury is that improvment will occur. I don't believe you can measure how far Kyara will grow and learn-she's been pretty good thus far proving people wrong!!
Take heart-change will happen a small piece at a time.
Susan Kennedy
Genie you are a awesome mom and it is completely normal to vent your feelings.....just like Kyara's gas better on the outside than inside (your feelings):):)Kyara is progressing and this very positive! You are doing such a great job with everything. I even feel my blood pressure going up at times when I read the posts and also cry at times so your thoughts are NORMAL. Hang in there. Please give Kyara kisses and hugs. Love you guys, Misty Evans
Do not feel bad for your emotions. Post them all you want, as we will all keep reading and listening and praying.
And I laughed out loud at your fart story. Yeah for Kyara! I knew there was someone out there who thought farting was funny!
Hang in there and keep focusing on the little things. They will eventually add up to large things.
Of course she is communicating with you. To me, this is a clear sign she is learning how to communicate with the options she has available to her. And you cannot learn without a functioning brain!
Keep working hard!
Much respect,
The Vaughn's (ok...John, Beth doesn't think farting is funny:) )
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