My friend Cristie requested this post, so here goes! Cristie, you may be the only person who actually reads all of this! Ha, ha!
We have 12 hour per night nursing care so some of the following is done by us and some by the nurses. If we do not have a nurse for the night, we do everything ourselves (and drink lots of coffee the next day!).
7am
The day starts with nebulizer treatments, Pulmicort and Xoponex. Carmen gets the treatment while still in bed and it lasts about 30 minutes. She gets her morning medications: Phenobarbital, Keppra, Ativan suppository, Prevacid and Reglan. Carmen gets her teeth brushed with a sponge on a stick and oral Nystatin on her tongue and inside of her mouth. She has chronic thrush so we use Nystatin almost continually.
8am-9am
Overnight feeding ends. Feeding bag is good for 24 hours so we rinse it out and flush out the tubing.
9am
Carmen gets a Vest treatment. The Vest is a machine that shakes/jiggles her chest and loosens up the gunk in her lungs. With the Vest, she is better able to cough gunk out or swallow it down into her tummy. The Vest treatment lasts 30 minutes.
9:30am
Usually Carmen has a massive wet diaper (and diarrhea for the past 8 months of C-diff) after the Vest, so we usually spend a few minutes changing her and cleaning up any leaks. If it is bath day (every other day), we give her a bath at this time.
10am
We bring Carmen downstairs and set her up in the LoveSac. We make absolutely certain she is lying on both a washable waterproof pad and a disposable waterproof pad. And she needs to have her head turned so that she can drool out rather than choking on saliva. The suction machine needs to be nearby, just in case she starts choking.
11am
We give Carmen tummy time. We put a waterproof pad and blanket on the floor and place a pillow with a hole cut out around her feeding tube. We put a soft pillow under her head and a burp cloth to catch the drool. She gets tummy time for about 45 minutes.
12pm
Carmen goes back into the LoveSac. We try to turn Carmen from side to side so that she isn’t in one position too long.
1pm
Carmen gets Reglan and an Ativan suppository. We give her probiotics, S. Bourlardii and VSL#3. Change diaper as needed. Carmen’s afternoon water is started. She gets 250ml of water run through the pump at 60ml/hour. We make sure she is propped up well when she is being fed.
2pm-4pm
Usually Carmen falls asleep during this time. We make sure we are nearby so that we will know if she has a seizure or needs to be suctioned.
5pm-6pm
Check and change diaper as needed. If Carmen’s feeding is finished, we place her on blankets on the floor. Carmen gets her Scopolamine patch changed every 48 hours. If it is due for a change, we place it behind her ear.
7pm
Carmen gets a Vest treatment for 30 minutes and the nebulizer treatments, Pulmicort and Xoponex. While getting the treatments, she gets an almond oil ankle massage and range of motion ankle exercises. She gets her evening medications: Phenobarbital, Keppra, Ativan suppository, Prevacid and Reglan. Carmen gets her teeth brushed with a sponge on a stick and oral Nystatin on her tongue and inside of her mouth.
7:30pm-8pm
Carmen is put in bed. We prop her up on a waterproof pad with blankets under her bottom, between her legs, under her feet, and pillows under her hands. She sleeps on her side. The pulse oximeter is placed on Carmen’s finger. We remove the adapter from Carmen’s feeding tube and wash it. We also check her g-tube site and make sure it is clean and that the tube is in place. If it starts slipping, we check the balloon to make sure it is still holding 5ml of water. If not, we add water or change the tube if the balloon is leaking. Carmen’s night formula feeding is started. She gets an 800ml mix of Neocate formula and water, run through the pump at 60ml/hour.
9pm-12am
Carmen sleeps fairly well at night. She has seizures throughout the day and night and needs suctioning. She is turned every three hours and repositioned on her side to make sure she doesn’t have skin breakdowns or bedsores. She occasionally has periods of her heart rate dropping while asleep.
1am
Carmen gets an Ativan suppository.
2am-7am
Throughout the night, Carmen is repositioned, changed and suctioned as needed. She does not pee well at night so she often needs warm compresses on her tummy to make her go. If that doesn’t work and she is uncomfortably full, the feeding is stopped for one hour and a Vest treatment given which usually results in pee.
Everyday, we wash her suction machine canister and tubing, nebulizer parts, syringes, medicine cups, adapter to her feeding tube, oxygen concentrator humidifier, etc.
7am
Carmen’s day starts all over again! We sometimes go out and we just work around her schedule. With the exception of the medications, we can be fairly flexible. If we do go somewhere, we take a well-stocked diaper bag, stroller, oxygen tanks, suction machine and feeding pump (if it is feeding time).
She sometimes needs Robitussin to loosen up secretions and Ibuprofen/Tylenol for fevers. A fever of 99 degrees causes her heart rate to go up and her respirations to increase. So, we treat even the slightest fever. We have Morphine on hand in case her respirations are too fast. Small amounts of Morphine actually aid in breathing. If she is sick, she may need nebulizer treatments as often as every hour. She also gets extra Vest treatments and requires more suctioning when sick.
Most weeks there is something new going on. This week we are doing a 4-day Miralax cleansing regimen and then will start 6 weeks of Vancomycin for the C-diff. The first few weeks Carmen will get Vanco 4 times per day and then we will taper it down.
This sounds like a lot but we have a pretty good system down. As Carmen gets older, she will require more intervention. Our goal is to keep Carmen comfortable and to give her the best care we can. Most often, she has a sweet, pleasant look on her face and we hope that means life is good for Carmen.
I try to make the time each day to just sit and hold Carmen. She is so cuddly and lovable and I know we will miss just sitting and holding her.
Here is a picture of Carmen getting her Vest treatment.
She is SO cute! It’s amazing how much you do in a day…more than some people do in a week!
She is just beautiful!
You and your family are such servants (so inspiring!)
What a fabulous post! 1 reason I asked for it is b/c I want to know how to be a better friend to you & in all that you do every day. Lots of love to you guys!
Carmen is absolutely beautiful. You and Dave are doing an amazing job taking care of Carmen. I did not realize how much care Carmen required 24/7. God truly knew that you and Dave were the parents that could care for Carmen and give her the love and care she needs. How is the Miralax cleansing going? Ella has to use Miralax when she has constipation issues and it is amazing how fast it works! I hope the drs. are able to get rid of C-diff. with this next round of treatment.
Wow- that is quite a routine! You are such a good mom, Lana.
I’m speechless. This puts things in perspective for many of us. I realy admire the EXCELLENCE with which you and Dave are caring for her. You guys are so faithful in all the many small things day after day. Even after reading this, I know it is still just a glimpse into the effort involved. I cant help but wonder how God will use this in Lauren’s life- watching and participating in caring for Carmen with such tenderness, love, and devotion. Because simultaneously you guys also give so much love and attention to Lauren. I believe you are blessing her even as you directly care for Carmen, modeling for her a devoted servants heart. We will be praying for you all, and for a good nights sleep!
God Bless you Lana and Dave
Thanks so much for this. What a busy day and what special people you are. God really knew who Carmen needed to be with. All your adoption miracles make even more sense now. Bless you!
I am touched by your meekness and humbleness. Thank you so much for sharing this blog. I know that Carmen must feel how loved she is. God bless you all. love, Audre
Just an observation – - for those reading this blog – I have watched Lana and Dave do all this and more – and I have to say that Lana (and Dave) does all of this as if it is “no big deal” – -meaning, caring for Carmen is done matter-of-factly, lovingly, gently, and as if it is just a normal routine that any mom or dad follows. In all of the time I have spent in their home, I am amazed at the peaceful and welcome atmosphere that prevails. In addition to all the care Carmen needs, Lauren gets LOTS of love and attention and is a happy, joyful child.
NY Grandpa and I probably spend more time than most in this home, so I think we get a good view of their “normal” life. It is from our (maybe a bit prejudiced) view that I can say God knew what He was doing when He made sure Carmen ended up with them. God has given them the strength, attitude, and resources to deal with this and I am so proud to call them my children! I am also deeply grateful that God provides for them over and over and I know he will sustain them through the sorrow they face with Carmen’s future.
We love you so much Dave, Lana, Lauren, and Carmen. We love being in your home. We love watching you grow. We appreciate the ways you have encouraged us to grow and be faithful! (All those Andy Stanley videos do sink in!!)
P. S. Keep the miracle series going – - it helps increase all our faith to remember God’s faithfulness to us.
You all really are amazing. I pray God’s strength and peace for you every day. God bless. In Christ, Joe
Wow, Lana. What you do in a day–and with such grace–simply amazes me. You are an incredible mama to both of your girls. They are so lucky to have you!
My goodness, I had no idea! I have a whole new level of awe for you. You rock!
Thanks for the insight in to your daily life.
Carmen is so precious.
I am still praying for the perfect night nurse for you and Carmen. I wish I was there to help.
Debbie
To be sure, Lana does most of the caring for Carmen. On most days, I’m lucky to kiss Carmen before I leave for work and kiss her again on my way to bed, long after she has fallen asleep for the night.
I’ve said it before but it’s definitely worth saying again. Lana is my hero!
I thank God for you and your family!! The love you have for Carmen and Lauren is priceless, and is such a precious example of the love a parent is to have for their child. You are teaching me so much!
I’m praying for a new night nurse; the right one for Carmen.
Thank you for sharing this blog and allowing us to have a peek into your world. God bless you!!
Carmen is so lucky to have the devoted care you all give her. Having worked with special needs individuals for the past 25 years I know how exhausting it can be. I am praying for you all and hoping you are getting the help you need. Also hoping you get to fulfill Carmen’s desires through the Make a Wish Foundation. Would be so wonderful for you all