Comments (9)

By Dave ©, March 17, 2009 9:41 am

No doubt, you have all been there; you’ve all seen this. Maybe it was at the mall. Perhaps it was the grocery store. Wherever it was, you were probably minding your own business when you turned the corner and there he was. Some little kid, somewhere between three and five years old, was sprawled out completely in the middle of the aisle. He was kicking his legs into the air and screaming at the top of his lungs to his mother, something to the effect of, “THIS. ISN’T. FAIR!!!!! Why can’t I have Corn Pops (or some other food/treat/toy/<fill in the blank>?!!!!”

That’s me right now.

No, I haven’t literally dropped to the floor lately and flailed my arms and legs till I could no longer hold them up — although that would be something, wouldn’t it? — but I have been wrestling with my Father in Heaven. Over the past several weeks, I’ve told Him countless times that I don’t think the path He has chosen for us is fair. About a week ago, I even asked Him why He hated me so much (yes, I am ashamed to admit it).

I am grateful to know that the God of this universe is extremely patient. I’m thankful that He allows us to question Him and wrestle with Him. And when all is said and done, He is right there, ready to embrace us, and demonstrate that His way really is better and, quite frankly, all that we truly want anyway.

But in moments like these, when relief is nowhere to be found, I must also confess, “Not my will, Lord, but yours. Do with me what you will. Take from me what you will. Nevertheless, I will still serve you.”

***

If, by chance, this is your child…thank you!

Comments (3)

By Lana, March 16, 2009 11:14 am

Today is Isaiah’s 2nd birthday and he is celebrating in Heaven. I don’t have any idea how birthdays are celebrated in Heaven but I am sure that every celebration in Heaven is beyond our wildest imaginations. So, happy, happy birthday to sweet Isaiah!

A year ago, we met Isaiah and his family at the Tay Sachs conference. Lauren and I hope to see them again this year.

To Mary, Matt and Ethan: we hope this day, while bittersweet, is a beautiful day for you!

Here’s a picture of Mary and Isaiah and Carmen and me, taken March 30, 2008.

Comments (17)

By Lana, March 15, 2009 1:43 pm

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.

Comments (6)

By Lana, March 13, 2009 11:53 am

Carmen was wide awake this morning so I pulled out the camera and took some pictures. Here is my favorite. Isn’t she sweet?! Very cuddly!

Comments (3)

By Lana, March 13, 2009 9:24 am

Monica the Magnificent came over on Wednesday and stayed with Carmen. I took Lauren to school for her kindergarten entrance exam. I cannot believe my little girl is off to kindergarten! After the test Lauren gave me a summary of the test: count to 20, rhyme, identify shapes, identify letters by sounds, draw a picture of a person (of course Lauren drew Carmen), color a heart, hop on one foot, etc. Lauren said, “The teacher asked me to skip and I asked her if she could show me. So, she skipped across the room. I skipped across the room after her.” Teachers are very special people.

Monica brought sunflowers for me. I love sunflowers. They are my favorite flowers. They just seem happy to me. Thank you Monica! (I have been astronomically stressed lately and sunflowers are the best prescription!)