I have learned that my hospital breaking point is 10 days. On day 10, I begin to lose my grip on "tough advocate mom" and slip into "weepy sad mom". It happened earlier this month with chemo - Day 10 was NG tube day, and I cried a river about it for no real reason. This time, Day 10 hit hard and I was a mess this morning. I am tired, sore and sick of the beeping machines, vitals every 4 hours, nurses all night and of Scarlett being trapped in a bed. Cabin fever is hitting hard. Thankfully, Chris had today off and was here all night and day, and he helped to keep me from falling apart. He's the best.
We started our morning with the little one asserting her independence and yanking her NG tube out. It surprised her and she cried for a minute, but then she was all smiles - so proud of herself! I was happy because we want it gone ASAP, but there is one problem: medications. She is on high doses of electrolyte replacements that are so gross and such high volume doses that there is just no way to get them into her reliably without the tube. When they tried to replace the tube right away, we asked that it be done while she was under anesthesia. Now that her CSF is staying in her body, all the electrolytes should equalize and we can eliminate the medications and the tube.
Her MRI was delayed almost 2 hours. We took her down and talked to her as they gave her Propofol, which put her right to sleep. I haven't heard about the MRI results yet...I'm taking a "no news is good news" approach for tonight.
Radiology escorted her straight to the operating room. There, they implanted a brand new shunt (VP non-programmable, for those of you with experience) just behind the old site. While they were threading the shunt tubing down her chest and abdomen, they ran across a complication that we never anticipated: the previous infection draining from her CSF into her abdomen caused some damage to her bladder. It was distended and full (even though she had been producing plenty of wet diapers) and slightly adhered to the inside of her abdominal cavity. The neurosurgeon called in the general surgeon (brain guys don't mess around with abdominal issues) to take a peek with the endoscope to check for other problems, and to repair the damage.
We were pretty confused when the neurosurgeon began explaining this in the waiting room. We were not expecting any abdominal issues, though it makes sense that the infection would have effects. However, they feel it is resolved, that she should have no further complications and that it should not extend our hospital stay. That's what they all say...
Once we saw her in the post-op room, we were reassured by how good she looked. Despite having a few extra holes than we expected to see, she seems to feel fine. She was thirsty and drank some glucose water (sugar - her favorite!). She was crying (good) and sucking her pacifier (very good) and even smiled for me (the best!) We found out that she got her way once more in surgery, too: they could not get a second IV ("just in case she needs it" in addition to her port) even with the anesthesia. We had been trying to avoid it since the last one failed a few days ago, and she won!
Luckily, the long procedures meant we had a break from the tiny room and hospital walls. Chris and I went to lunch at the Stanford mall across the street, wandered through the stores, had our first Pinkberry frozen yogurt, and generally took a deep breath. We needed it.
Tomorrow will probably be very busy with visits from all the medical teams to discuss the events of today. I will be awake early for rounds (around 7 for Neurosurgery). I like to be ready for them, ready to listen and ready to ask questions. On to Day 11.
Still praying for Scarlett. I know she is a fighter and we serve a God who is still performing miracles and HE is a healer. Hope you get great news tomorrow and that she will get to go home soon. (((HUGS)))
Your so amazing Brandi ;) i mean, you have an amazing daughter too...but it takes a lot to have a mom like you!
It's OK to cry sometimes, Mama. It can be a great stress reliever, and it's more healthy than letting all those emotions bottle up. You guys are dealing with a lot of stuff, so don't be afraid to let it out. :)
Thinking of your family daily and hoping for good news from the MRI!
Praying for Scarlett! I pray that all is well with the MRI and that all 3 of you are out of the hospital soon!!! Hugs from PA
Prayers for your little family coming from Auburn, Al.. I have followed the blog from the beginning and am constantly amazed at your strength. May God allow you to feel the comfort that only His presence can bring... the kind of comfort that reminds you that Someone greater is in control. God is the Great Healer and He hears your cries... even when Chris is not there, you are not alone.
You are an awesome mother to Scarlett and a very, very strong woman. I am awed by your strength when I read about all you do.. I don't think I could ever do it!
I hope you all get to go home soon (cabin fever is awful!). :)
So glad to hear Scarlett is doing so well! YAY!
Sorry you have found that day 10 is your limit to sanity...so to speak. Kudos to you...by day 7, I was pacing back and forth in my son's hospital room and felt like I was going stir crazy. It's just not a good feeling. I truly hope you don't have to experience it often.
My son and I will continue praying for Scarlett. She's such a strong, strong lil' lady with a helluva mama. :)
You are doing amazing Brandi! The fact that it takes you 10 days to have the break down is incredible, especially since you not only have spent 10 days a few times but think about all the 1, 2, 4ers as well. The tears are good, they release that built up stress and allow you to keep on going. Home is where the heart is and where you will be with your precious Scarlett soon. I believe Scarlett will make sure of it!! :) I love how feisty she is and how she gets her way! She is an inspiration and we are so happy she is doing so well. Still keeping EVERYTHING crossed that the mri results come back Negative!!! Sending Love and Prayers from the Cozza's in CT
Every time I read your posts I think "Scarlett couldn't have been born to better parents." You both face her challenges with courage, compassion and intelligence and I love how you advocate for her! And I'm sure she knows how "lucky" she is! Much love to you, Chris and Scarlett!
You are an amazing Mommy and woman and I am inspired each time I read your words. We are praying for your precious little Scarlett!
So thrilled to hear surgery went well! Glad you and Chris got to get out for a minute. When my dad was sick 2 yrs. ago I stayed by his side for almost 6 weeks, - not easy with all those darn [bleeping] beeping machines and RN changes, making sure to catch all rounds, etc. I applaud your bravery and commitment! Good luck with the MRI reading today, sounds like it'll be wonderful news! Lots of hugs your way from San Diego!
I've been reading, but haven't had a chance to type anything in! Thank you for writing out your heart to us. I know there are many of us who check-in daily to get our Scarlett progress report. Hugs to you. (I've written & erased about 8 different things - much I want to say, none that I want to sound "pat", mostly just want you to know you've got a huge support system out here even though you will probably never meet most of us!)
Thinking of you on Day 11 and everyday. :) (((HUGS)))
Yaaaaay! Go Scarlett! Happy Easter!!
I am happy she is feeling better. I am curious though:why do they thread shunt tubing into the abdomen?
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