I know I posted almost everyday while Tiara was in the hospital but there were lots of things that happened that I wasn’t able to convey during that time.
First, I wrote about a resident in the ICU who was rather full of himself and on first impression neither he nor I were impressed with each other. He treated me like I was an over reactive, uninformed mother and I was not impressed with his medical knowledge. As a result we started off on the wrong foot. Funny enough by the 2nd day in the ICU he was my buddy. After Tiara’s condition continued to worsen, he realized she was a much more complicated case than he first realized and I was not some silly Mom who didn’t know what she was talking about. He used to check on her a few times every day and his attitude took a 360 degree shift as her illness progressed and he became a great advocate for her. On the 10th day or so I woke up and asked where he was. The nurse said, ” I think he has moved on.” “What, he is gone?” I was actually bummed. I hate when I build a relationship with a doctor/resident and suddenly they just disappear and move on to the next rotation. I told the nurse about my feelings and she said “How do you think we feel? We finally get to know them and have them doing what we want and then they up and leave!” I had to laugh at that because you will be hard pressed to ever find an ICU that is afraid to speak her mind.
Moving on…. While your child is in the ICU the doctors round every morning and discuss your child’s case. Most days they are upbeat and make a plan to move her towards recovery but some days you can just feel their worry and anxiety over the way your child’s condition is progressing. We had two days like that during this last visit that really made me nervous. I walked out the door to meet them for rounds and the whole team was very quiet. My resident buddy presented Tiara’s case and they all just sighed. No one had much to say. Usually the resident leads and the attending asks questions and makes suggestions. On this morning the resident didn’t have much to offer and the attending physician immediately stepped in and started presenting the options. This was the day they decided they needed to start dialysis, keep her on a constant lasix drip and her lungs were completely “whited out” as the Acute Respiratory Distress Syndrome (ARDS)had taken over her lungs. I went back to her room and was somewhat fearful. I didn’t believe for a moment this could be her time but then I did some research on ARDS only to learn that 40% of patients don’t survive. I knew in my heart TT would make it through yet again, but I just kept wondering, “What if I am wrong?”
I could tell the doctors were getting scared and they were feeling really down as 2 other children had passed away in the ICU within the past 24 hours. I heard a woman crying and screaming in the hallway and I assumed she lost her child. A little while later I went out to the bathroom I saw her waiting her turn. She was talking to a priest and as she entered the restroom she said to him, “Well, the doctors said if he would have survived the pain would have been horrific, so it was best for him.” The priest nodded and she walked in the bathroom. I just kept thinking, someday that will be me. My child will die and I will try to justify the horror to someone trying to comfort me. I just kept thinking I’m not ready, Tiara this can’t be your time. I did a prayer for the woman and her child after I got back to Tiara’s room and tried to think about the pain she was enduring. I started to cry and realized I couldn’t allow myself to go there, Tiara was going to survive and I needed to stay focused on that goal.
That night after I heard this poor mother speaking to the priest I was confronted with a family who was clearly suffering. There was about 12-15 people in this group and they would monopolize the family room as there was so many people supporting one another. They had been there for days. One night I was again going to the bathroom and I saw them all eating from their tupperware and talking but they seemed really sad. I then saw a woman walk towards them and she had tears streaming down her face. I went back into the ward and was on my way to Tiara’s room when I heard this really loud singing/chanting. I knew the child must have passed away and they were engaging in some ritual for the child’s soul. I kept hoping I was wrong and maybe they were just singing to help her heal but the next morning they were all gone. They weren’t in the family room or crowding the halls like they had been for days. So I knew I must have been right. I was so sorry to be right in this scenario.
Sometimes I feel as if I come across as a cold person when discussing Tiara and her condition. I was talking to another Mom yesterday and I said “Well, Tiara was right on the edge this time, I was really worried she might not make it.” After I said that I felt kinda weird. How can someone respond to such a horrifying statement. How is it I can discuss the life and potential death of my child without even flinching? I’m not sure how I got like this, because no one else in my family is remotely like me. Hmmmmm
The ICU is such a sad and scary place yet I always feel so much safer there than when Tiara is on the “floor”. The nurses in the ICU are so incredible and the doctors are all top notch. Here are a few pictures of Tiara getting a spa day from one of our favorite nurses, Katelyn, who always found a way to fix Tiara’s crazy hair.
Have a wonderful day!
xoxo tiffani
You seriously are a true hero to me and I can’t begin to express that in words here. Thank you always for being so candid with all that you have gone through with Tiara. I truly come here, because I find your story quite amazing and definitely inspiring. Thank you Tiffani for just being so open and honest and for being just you!! 🙂
Thanks for stopping by everyday to read about me being me. xoxo tiffani
Whew!! I’m so glad that Tiara made it through this illness. I know it was scary. You think the way you do because you are forced to. We prepare ourselves for what might happen. Hugs and kissed to you guys!
Thanks Sylvia….
Okay, I’ll agree that it does sound odd that you seem to believe she’s going to die before you and that it’s looming around any corner. I don’t know if it sounds cold but it sounds strange, because I’m unclear of the scientific basis for it.
Yeah, she’s sickly but so what? You expressed many, many times that all of your daughters catch infections at the drop of a hat (remember the prediction that Tabitha’s ear rod would become infected as it’s typical in your house? – I don’t think that materialized).
Tiara’s likely to become ill far more often than the average teenager because her cognitive impairment causes her to behave like a toddler, putting her hands/fingers on everything and straight into her mouth, nose and eyes – and I’m sure she’s anything but vigilant about proper hand washing. Regardless, she’s still a teenager – meaning she has a very strong constitution. If she were 80, she’d be in serious trouble.
But, Tiffani, I cannot imagine Tiara dying for many, many decades, unless she decides to jump from the exit door of an airplane, of course. Tiara will stand at your bedside with her sisters when you’re a very old lady yourself, comforting you when you leave, don’t you worry about that.
I don’t think you grasp Tiara and her health if you think she will live until I am an old lady. The 5 seizure medicines she takes breaks down her system. She has tumors in her heart, kidneys, thyroid and brain and potentially her lungs. We also learned during this last visit that she has developed a PFO in her heart as a result of a virus. Most people are born with a PFO and never have problems but Tiara’s just recently showed up from being sick. Her lungs are scared and she walks around with less capacity to breathe than the rest of us. She aspirates easily and has seizures everyday which put her at risk for numerous other problems.
I love you comments and appreciate your positive attitude towards Tiara’s future but it would be silly of me to think she will live to see me as an old lady. xoxo
Tiffani, I’m sorry, no, I guess I definitely didn’t grasp any of this.
My brother had tons of tumors on his heart but they disappeared before he was 3 and I believed that was rather common. He also has kidney tumors but they’re stable. I didn’t realize Tiara had more kidney involvement.
My brother also has too-many-to-count brain tumors but they’re also pretty stable and his seizures have improved siginficantly after puberty, which I hope for Tiara as well – and I know lots of people experience same with TSC. In fact, the amount of medications she is on could reduce significantly at that point. Fingers crossed. And I didn’t know she had lung tumors (or LAM) because I believed that would be a concern when she’s older and not a certainty for all women.
I’m sorry to learn my perception of her health was wrong and I hope you turn out to be wrong, too. I’m sure you want that more than anyone.
Apologies.
Mikela
Hi Tiffany. Having had cancer, and having sat a bedside vigil for my stepdad for six months before he passed, I can say I think it is perfectly normal and healthy to think about both the most positive and most negative possible outcomes in those situations.
Tiffani,
From another TS mom, it is so comforting to see your thoughts and feelings in writing. You say things that many of us feel and think about all the time, but are scared to say out loud. It is difficult to have to think about the things that we do, see our child in extreme situations, have to make medical decisions and then second guessing our decisions. There isn’t a day that goes by that we don’t worry and wonder. My son is only 6 but I worry about how I will handle him when he gets older. I look at your strength and compassion for Tiara and hope that I can be just as strong. I wished we lived closer so we could meet!
I look forward to more updates 🙂 Keep posting more!
Lana
Thanks Lana, I am so glad that my blog is able to help another TS family. That is truly a gift. xoxo tiffani
Tiffani,
I commend you for your ability to look life straight in the eye and accept the terms you have been given, even if they are not fair, right, or natural. It’s not NATURAL to think your child could pass away before you do. But it is your experience with Tiara over the last 15 years, and your Virgo- tell it like it is- spirit that has you preparing yourself for the worst.
As I have gotten older, I surprise myself also with how “cold” or unemotional I can be about certain things. This is born out of the fact that, as grown ups living very full lives we don’t have time to sulk or to be in denial. Life is coming in ups and downs whether we are ready or not. And it would help us and everyone else if we were ready.
So, don’t judge yourself for the way you spoke about Tiara and the seriousness of her health issues. Your spirit KNOWS that there is so much more than just our lives here on earth. And with God, there is nothing to be afraid of. Tiara’s life rests in His hands, and you are so intuitive that you will be ready if and when the times comes for her to pass on. And if you are like me, it helps to say it and be real about it. I think it’s great that you are able to be open about how serious it is, because doing that helps you to prepare for it…..who cares what others think, right?
And I hope you can enjoy some Downton Abbey while TT is still tired and resting, I still havent tried to download Season 3…
With love,
Marcy
I have always prayed that God wouldn’t take me home until my children–aka Brenna–no longer needed me. Just recently I realized that for me to have that prayer answered might mean that Brenna passes away before I do. After that, I really had to think if that was still my prayer. It still is. So I guess I am with you, Tiffany, knowing someday that family in the ICU is likely to be me. I, too, talk like it’s not that big of a deal because if I focus on it, I would be immobilized and Brenna doesn’t need that. So for now it is some vague, distant future that terrifies me and I don’t try to dwell on it much. Today is about all I can handle anyway. Plus, no matter what the end, I would never trade Brenna for anything!
Hang in there, Tiffany! I think you are exceptional and amazing and Tiara is so blessed to have you as her mother. Know that we pray for you guys all the time. <3
Tiffani you are the strongest woman I know. Truly. You are such an inspiration.
Thank you for linking up to Raising Imperfection! We appreciate you taking the time to link up, make sure to check back on Friday when we feature out favorites.
Leslie
Tiffani ~ you are such a gift to other parents and families going through the same trials as you. You are such an incredible mother and though I know it breaks your heart that you may have to one day say goodbye to your beloved Tiara, but she will absolutely know with her entire being that you are an amazing person that loves her more than life.
Thank you for linking to Raising Imperfection.
Please come back Friday to see if you were featured. 🙂
¤´¨)
¸.•*´
(¸¤ Lanaya | xoxo
http://www.raising-reagan.com