I always get warned to knock on wood when I express my eagerness for things. Yesterday, when I told the nurse I was happy we would be discharged since Scarlett was feeling so good, she said, "I hope so...knock on wood," as she tapped the door on her way out. I should have listened...
We were doing great. The little miss was eating and smiling, cooing and resting. Chris said goodnight to go home and rest before work today. Scarlett and I settled in for another night. I made a bottle, got comfortable with her and she was doing well...until she wasn't. I found myself suddenly sitting with her in a puddle of the formula that she had tried to eat but could not keep down. Our wonderful nurse came to help me clean her up and get some medication in her while I changed clothes and the sheets on my bed. Scarlett fell asleep, but I wanted to wait until her last dose of chemo was complete and be sure she was okay, so I didn't go to bed until after midnight.
Then at 2am, I heard the nurse come in to change Scarlett's diaper. I am always so grateful for their help with this each night, since she is on such high fluids that she needs to be changed every few hours before the diaper gives out. However, she is pretty picky about her pacifier to fall asleep, so I usually need to help get her back to sleep. This time, I felt that her blanket was wet. When I lifted it off of her, I saw that the bed around her was soaked with blood.
Don't panic. I did, but quickly realized that the IV had somehow come unscrewed and was leaking fluid from the pump and blood from her port onto the bed. I have no idea how this happens, but it is not the first time. The nurses came in to help clean everything up and reset her IV because it was a contamination risk. This meant her port needed to be de-accessed (the needle removed) and then reaccessed (the needle put back in). We put the numbing cream on, let it sit for 30 minutes, got her hooked up again and then finally settled back in for sleep around 3:30.
I awoke at 7:30 to her suddenly screaming and gagging. I turned her on her side so she would not aspirate, then called the nurse for medication to calm her down, and she drifted back to sleep. Unfortunately, I was awake and not going to sleep again any time soon. Rounds were starting and we began to get visitors.
Our neuro-oncology nurse practitioner came by early, and I could tell by the look on her face that it was time: NG tube day. She said that she completely understood why we wanted to hold off, but now Scarlett's risk of dehydration was high, so she was not comfortable letting us go home without it (she was quite sure we would end up in the ER before we saw her again in the clinic Monday). This is what we were waiting for - for someone to tell us she needed it NOW, not "she might need it soon."
The tube went in this morning. It only takes a minute for the nurses to snake it down her nose into her stomach. It has made her a little uncomfortable as she adjusts to what was described to me as "a thick piece of spaghetti down her throat." However, she seems to be handling feeds well and, if it keeps us out of the ER on the weekend, I can deal with it. I have learned how to check for placement by using a stethoscope to listen as I pump a bubble of air into her stomach; I have administered some formula and medications via the tube while she sleeps. Tomorrow, I will learn how to use the pump that can run feeds overnight (we aren't sure we will need it, but I need to learn). Soon, I will once again mom up to learn how to place the tube myself.
Now, I will casually say we will leave tomorrow, but I have learned far too much to say for sure.
Wow Brandi.. you're gonna be a nurse here pretty soon! Scarlett is so lucky to have such awesome parents who are so ready and willing to learn everything there is to taking care of her. thinking of you always!!!
Oh my gosh. My heart stopped when you said you saw blood. I think my eyes went right passed DON'T PANIC. So glad everything is ok. I'm sorry that she has to have the NG tube.
Knocking wood for you.
Hang in there!
I don't know who is braver...Scarlett or her Mommy. You should both be so proud.
I am praying for Scarlett and I have Faith that God is going to heal her and that she will get to go home tomorrow. I pray that she will be able to hold food down on her own and will not have to have that tube. Praying for peace and strength for you too.
Brandi- you are probably the bravest person I "know". You & little Scarlett, too!
You poor dear. I will definitely pray that things go better today and that you can go home. You are such a good momma.
You are such an amazing strong woman. My dd was in the NICU for 3 months and she also had to have an NG tube after refusing feeds because of reflux and her intestinal surgery for 3 months after we got home. I was a wimp and made my husband do it everytime because it broke my heart. I think moms like you and I should get honorary nursing degrees with all the medical knowledge you learn through having a critically ill baby! She is a fighter and so are you guys! Hang in there!
You are such an inspirational woman! Way to "mom up" for your beautiful daughter!!! Thinking of your family always! Hugs!
Brandi - I've never posted, but I've been following you from the beginning. When you said blood my heart skipped a beat.I'm constantly praying for you, Chris and sweet Scarlett!
Love and Hugs from a November (almost October Mama)
You are AWESOME! Here I was feeling sorry for myself for having to wake up twice during the night to change sheets due to potty training and you wake up to bloody sheets. So scary! Just makes me appreciate all the very different challenges you have to face beyond those that moms of healthy babies face.
Your family is in my prayers as always!
SO SCARY!! NG tubes are a breeze. We had to learn to do it and although you feel terrible because she will scream the entire time, it's really not painful and not difficult, just uncomfortable for them. I heard of a mom that placed the NG tube on their self to see what it was like... Brave momma!
On pins and needles as I read this.
Prayers as always. I always have you on my mind
Hugs to all of you.
What a night, poor baby and poor mama! Lots of prayers, hugs and brave thoughts your way! Your story has moved (and continues to move) so many people, I assure you the power of prayer and good thoughts your way will continue to bless you and your amazing little gal! What a spirit she has, what spunk!
Poor baby and poor mama! Hopefully the NG helps her keep hydrated and feeling a little better. We are thinking of you guys!
Just keep telling yourself that the NG tube, the shots, the chemo and everything else you are going through is all to make her well... You will be thankful for it all when you're watching her kindergarten "graduation" a few short years from now.
My heart dropped until I read "Don't panic". I can't imagine how scary this all is for you. You inspire me to "mom up" when I need to.
Brandi: As far as learing how to operate the machine that will feed Scarlett at night, don't sweat it; it's easy. When Courtney was 3 we were in the hospital and it was time for her feed. The nurses didn't know how to work her machine and neither did I. SHE showed ME how to do it! Then she threw it all up!!! It was pumping too fast for her itty bitty belly! Good luck, you can do it!
You are absolutely ABSOLUTELY - and let me say it again AB-SO-LUTE-LY - an amazing Mom. The things that you have had to learn to do and the procedures you have had to watch and hold your precious little one thru - my goodness. I hope you know how strong and incredible you are. Great big hugs!
God bless you and your strength.
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