Let me start by saying that if you want more current updates on Tiara please feel free to friend request me on Facebook(tiffani Whitaker goff) I tend to update my personal page more than anything else.
Now for the update. Friday afternoon we decided she was struggling too hard to breathe so they intubated her and put her on the ventilator. She is on a propofol drip, which means she is sedated around the clock so her lungs can try and heal.
Like last year her urine output has decreased so they put in a catheter. It appears based on her labs and her past history she is heading towards renal failure just like last year. The reason for this is because when the body struggles that hard to keep oxygen in the lungs it has to divert oxygen from other organs. The kidneys are the ones who lose out first. Do you like my very scientific explanation?
Needless to say, They are watching her very closely, doing labs every 6 hours and aggressively dealing with the kidney issue. Since we have been done this road before I’m not panicking yet.
As for today, they put in a pic line in her arm. This is a central line to the heart that allows them better access to her veins than just a few IV’s. Unfortunately the large veins on her left arm which have been used in the past for a pic line would not feed through to the heart. The nurse had to make a third attempt on the right arm and everything went smoothly. None of that hurt Tiara because she was asleep but it confirms her body has suffered permanent damage from her chronic illnesses, which breaks my heart.
Apparently blood clots are the 3rd most common complication of hospitalizations and Choc is really working on identifying patients who are at high risk. As you can imagine Tiara is high risk, so hematology has been consulted and I met with them today. The doctor was really nice and at the end of our conversation he said “what do you do for a living?”
Me: ” I stay home and take care of Tiara and my other girls.”
Him: ” oh, I thought you must be in the medical field. “
me: ” No, I have a law degree but I do this.”
Him: ” That is really great.”
That was my 3rd favorite thing for the day.
The first was when Louie brought Trinity to the hospital in the morning and we had breakfast in the cafeteria. He sat with Tt while we got to spend a half hour together. She read me the essay she wrote at school about ” her hero” and I cried my eyes out because I was her hero. I didn’t ask her permission to share it so I won’t but I can tell you after reading it I felt such relief. As a parent you always worry if you are doing the best for your kids. It was obvious from her essay she values what I do for Tiara even though it takes time away from her. I am really proud to be her hero.
My second favorite thing was when a friend delivered my favorite veggie drink to the hospital. I am totally sick with a cold today and I needed some good nutrition. People offer to help constantly and 99 percent of the time I decline but today I really wanted that drink so I accepted the offer. I am not always good at accepting help but I am trying to get better. Thanks Tom.
So that was our day. Now we just wait and hope she starts to improve rather than get worse. Unfortunately I’m not convinced we have seen the worst of it yet.
xoxo tiffani
Oh sweetie, thinking of you and your family. Praying for strength and healing!xo
Thanks for keeping us updated. Prayers and love for you all. Tell TT we are all pulling for her and spring is just around the corner. <3
Prayers for Tiara and you from Massachusetts.
We are praying for your sweet Tiara, and your whole family… Cheering her on from TX – Believing she will be healed, quickly!
Follow your blog – sending prayers your daughters way from Washington.
Thinking of your whole family tonight. Stay strong!
Tiffani, I friend requested you and still keep you all in my thoughts and prayers. I love that Trinity wrote that you are her hero. I think you are totally a hero in my book and seriously cannot say that enough. Hugs and hoping to here improvement soon for Tiara 🙂 xoxo!!
so sorry that Tiara is so sick my daughter has TSC to she was in icu on Christmas day I know how bad.
it can be ive never had to deal with what you are going thru you are a real good mom I hope someday to.
meet you and Tiara and all your family I know that prayers will help I belive in prayers because I do them everyday.
for my daughter Tasha
I’m sending positive thoughts and prayers your way! I’m so sad to that this is happening. You guys go through way too much already. You are a great mom and your kids know and appreciate it! That’s so sweet of Trinity to honor you in her essay!
Proverbs 31:28- Her children will rise up and call her blessed!
I know it doesn’t always feel like it, especially in times like these, but you are blessed, Tiffani
Oh Tiffani I’m just so sorry and sending healing prayers for Tiara.
Dear Tiffany-
My strongest wishes and prayers for you daughter. I will pray for you and your family. Big hug! You are a wonderful mother
Kristi cook
Keeping you and your whole family in my heart and prayers. So sorry you all have to go through this. Your daughter,Trinity, will grow up to be a wonderful mother and a generous, compassionate person because of your example and her life with her sister. She probably already has those qualities. Hope all goes smoothly for Tiara.
we are still praying for your family just want Tiara to get well soon
Dearest Tiff,
I haven’t written sooner because this all sounded so much like last year, but when I read today’s post I had big tears. I just wrote a post on my facebook about being Lucky always, even in our darkest days. And the reason we are Lucky is that God is in control of every outcome. We have to do our part, do our best, and the rest is in His hands. I know that you know this, but there is no other situation that compares to having a child in a life-threatening situation. None. So, I thought I would just say it again: God loves you more than you could ever know. God loves Tiara more than anyone can comprehend. This whole situation is being cradled in His love:) Even in the most stressful and darkest times.
I will be sending extra prayers your way. Thank you for keeping us posted!!
With Love and HUGS,
Marcy
I hate to hear that all this is going on. Praying for quick healing of Tiara’s lungs and body, and rest and peace for you and the rest of the family! Just remember, “the Will of God will never take you where the Grace of God will not protect you” and He won’t give you more than you can handle. Clearly Trinity sees what I think we all see when we read your blog: that you are a strong, courageous and patient woman with a lot of guts and faith! Prayers times a million to you and yours!