The x-ray yesterday (Monday) showed that the PICC line was pulled out too far and needs to be replaced. The best PICC nurse in the hospital came to try to thread a new PICC line over the old one (so we wouldn't have to start completely over) but she was unsuccessful. So tomorrow the surgeons want to take Kyara back to the operating room and put a new PICC line in under xray. She may have to go under general anestetic because she has so much muscle tone, they are wondering if that is the reason she is unable to thread the new line.
Yesterday during PT, Kyara, Dan, or I pulled out Kyara's j-tube. They were able to put a new one in without difficulty, but it was a bit like the straw that broke the camel's back. I lost it a bit. I am frustrated with this situation.
For a bit of comic relief, I began thinking of things the doctors have said that have made me mad. A little masochistic, I know...odd sense of humor.
1.) I understand how you feel.
2.) I have a lot of time invested in Kyara, too.
3.) Getting upset has no purpose.
4.) We don't know what is causing the air.
5.) It looks like you have an infant again (okay, this one was said to Bo's mom, but really...what was that doctor thinking?)
6.) Yeah, the surgery was a success.
7.) (As I am crying after her "successful" surgery) Uhhhh, should I get a nurse or something?
Really, I think surgeons should go through a class on what to say to patients and their families. I could help...unless you have walked in the parents' shoes, DON'T say you know how they feel. Do not pretend to care as much or more than the parent does. If a parent is crying, sometimes placing a hand of comfort and SHUTTING UP is the best course of action!
Now that I have vented some, I feel better. I have not written in a while because I was too caught up in emotions. Frustration, anger, concern, grief, saddness, etc.
Tomorrow Kyara is having another MRI done. This is to see what her brain is doing and how bad the anoxic injury is. It will show brain shrinkage and they will be able to see what part of the brain is injured by the shrinkage. The PM&R doctor explained that because Kyara has not been stable for at least 2 week continuous period, we can't not know how Kyara is progressing. On the outside, they are not impressed by her recovery. But there is still hope. We do not know how she is recovering on the inside. It may be that she is in so much discomfort, it is masking her recovery. I pray that is the case. Either way, the MRI will not show us this. Only her behavior will show us her recovery. I pray that God will place his hands on Kyara and help her recover. Help her brain make new pathways and for her to begin to respond to us. Kyara has been on a rollercoaster here and until she settles, we will not know where we will begin the next ride.
16 comments:
Dear Dzenis family,
I have no idea what you are going through, but I lift you up in prayer tonight! I have been following your story for some time now and pray that the doctors are able to see something in the upcoming MRI. You have such courage and strength and you are allowed vent. Whenever you need encouragement, just know that you have many prayer warriors and we are here for you!
I concur that no one has a clue what you are feeling. We continue to pray for peace, understanding, and comfort for Kyara and you all. Sometimes hope is all the Lord gives us to hang on to. I am glad to see you still have both hands wrapped tightly around hope. Best of luck tomorrow with the procedures and remember everything is in the "Ultimate Physician's" hands.
Much Respect,
The Vaughn's
Genie, my heart goes out to you. I have no words to tell you how BJ and I feel. We follow each word you write closely to find a ray of hope for a miraculous outcome.
We pray for Kyara and all of your family,
Carolyn
Please know that even in these valleys, our Lord is there with you. Our heart goes out to you and your family. I am so sad that you guys are having to endure this, but please know that we are all praying for you and clinging to hope with you.
Good luck tomorrow! We pray for good news for you and Kyara!!
Our prayers are with you!!
The Brandons
Genie dear,
I am still praying for you, Kyara and your whole family! like you said, the doctors really don't know what to say. What happened to bedside manners??? Trust me, I know what you are talking about. I will explain after you get back home! We so miss y'all, and can't wait for you to come HOME! Hang in there and keep those doctors, nurses, interns, etc. on their toes - they should be paying you! Love you, hang in there!
Oh, Genie! I am so glad you are able to write about your feelings, and YES, doctors do need to be more thoughtful. We continue to pray for you all daily. I pray the picc line and j-tube will stay where they are supposed to and that the MRI will not show shrinkage. I know you all are so ready for more steps forward and no steps backward. Kyara is blessed by you and is a blessing to you.
Clara
Genie,
May God protect y'all with His almighty strength and keep y'all in His tender care! You all are so deserving of a much needed break from the deep valleys that seem to keep coming your way.
May tomorrow bring some peaks, with more to follow. We continue to pray for you, Kyara, and the family.
Take care,
Love,
The Hammond crew
We are praying for you guys. We pray for great results tomorrow with the MRI, the j-tube, and the picc line. We are also praying specifically for you and Gunars and that some good news will help with your frustrations. You have every right to be frustrated and please know we share that emotion with you too. You should write a book of what surgeons should not say to parents. Wow, you certainly have some good ones!!!
We miss all of you very much. Please kiss our little angel and tell her that is from Mrs. Laurie and Mrs. Carlisle. Not one day goes by in our classroom without discussion of her, how she is doing, and when she is coming home. The children and so many others in our school are desperate to see her sweet face again soon. We are selfish, I know, but that is also included in our prayers. We know you guys want that so much too. Soon she is going to be rapidly progressing, and before we know it, she will be doing that progressing back in our "neck of the woods." In the meanwhile, we will practice patience until God decides that time is right!
We love you guys,
Laurie and Josette
uHi! I am a speech therapist and have been following Kyara's journey for a couple of months now. Tonight, after reading your post, I felt compelled to write. I currently work in a school system, and have worked with kids with brain injuries, ranging from some of the most severe, to very mild, not noticeable to the average person. I've been there when doctors have told parents, "I know how you feel." We don't know how YOU feel. In fact, as a parent, I can't even begin to imagine what you are going through. I tear up when my 5 year old falls off of her bike. I would never dream of telling a parent this, but from my experience, it comes from the nervousness of not knowing what to say. As a professional working with patients with brain injuries, I wanted to provide you with some HOPE...that, I do know, is something you need. I have seen kids as old as 17 years old make progress past the "3 months" window, and hope that you don't rely on this data. Kyara's body needs to physically heal before she can focus on the things you and I see as the most important...walking, eating, talking, saying "I love you." I realize that "resarch says" 3 months, but from my experience, every child is SO DIFFERENT!!! There is no crystal ball to predict what Kyara's recovery path will be, and no one should put limits on your daughter. At Kyara's young age, she has great potential for great recovery. In young children, the brain can do amazing things. I've had more than one student whose parents were told "She/he will never walk or talk again" and they have proven everyone wrong. Kyara is a fighter...she's beaten the odds in the past and can do it again. I can't wait to see what progress she makes once her pain and discomfort are taken care of. Are they doing any music "therapy" with Kyara? At this stage, it would involve just simply placing headphones on her with some of her favorite music. Some kids (NOT ALL!) will show facial responses when they hear familiar music. Music has also been shown to help with brain development and can access "different" parts of the brain as compared to speech and motor skills. March is Brain Injury Awareness month...maybe this will be Kyara's time to shine!
Following your story and praying for your families continued strength and Kyara's recovery.
Dear Genie,
Most people who face those type of circumstances will have a hard time finding the right words to say or doing the right things or showing the right emotions... however, you would think that this is certainly not the first time they have faced such situations and would know after years of experience exactly what to say or how to act or what to do... we can't imagine the frustration you must feel on a daily basis, and the feeling of helplessness, of wanting to help Kyara get back to normal immediately, how you wish you could just make it all go away... we struggle every day thinking about you and your family and pray to God that every day brings good news your way. Tomorrow will be a brand new day, Genie, hang in there. God will never abandon you, and neither will your family and loved ones who have been so touched and blessed by Kyara. We pray for Kyara's continued recovery.
Honey please!!! Like you tell Kyara---"let 'er rip"! No one knows exactly how you feel! Only you. We can all empathize, but we are not YOU! You write anyting you want to on here. We just want to hear from you. I pray today will be a good day and that all these tubes get in and stay put! Prayers and love are flying your way. Love, wink
I agree that sometimes surgeons say stupid things and I like the book idea, you are the only one who knows how you feel and it might help to make the doctors aware of what kinds of things to avoid saying... I am with you and will always have hope for Kyara. I am so glad that the speech therapist responded! I think it's easy to get nervous about that 3 month window, but we all know that God has timing that is very different from the rest of us and Kyara's little body does still need some physical healing. There are so many people that are following Kyara's story - I know I go through withdrawls when I check and it hasn't yet been updated since the last time I checked. I know that there are so many people out there that are praying and following daily who don't leave comments, or only leave them sometimes. We are all praying for Kyara and for you and for your family. We hurt for you and we are all waiting on the edge of our seats to one day get to be a witness to one of God's miracles. Thank you so much for all of your honest posts! We will keep praying and God will do His work in His time!
In His Love,
The Lopers
I am so glad Jen Mesko, speech therapist, commented to your situation. What enlightening and inspiring words from someone experienced in children with brain injuries. Genie, keep them all on their toes! You should TOTALLY write a book on your experiences. All of you are constantly on my mind throughout the day; and prayers! Keeping the faith, Stephanie
Genie,
All that anyone can really say is to just hang on and hold tight to God, that's all you can do sometimes. Rely on those around you and on Him when you are too weak to rely on yourself, but have comfort in knowing that God is in charge of Kyara and knows His plan for her. We know Kyara will come home and she will get better, we love her very much and wish that we could do something more to help. We are praying and will not give up hope on her. Give Kyara a kiss from Gracie when you get a chance.
Allison
I do not know your family personally but I have been following your struggle. I don't know why all of these things are happening but I do know that if anyone can build a bridge to a miraculous outcome it is our Lord and Saviour. I pray that God will continue giving his strength to all of you. I CAN NOT imagine what you are going through. May God bless you and keep you in his hands.
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