Eat Happy!

Eat Happy!

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Monday, June 30, 2014

Sleep Aids

(reflux, motility, apnea, mucus/vagal damage, periodic limb movement disorder)



Sleeping can be quite a challenge when you have pulmonary, sleep, and/or gastrointestinal disorders. Our three year old Ian has always had trouble sleeping. From the time he was an infant, we struggled with vomiting, reflux, apnea, and restlessness overnight. Lying flat was simply not an option. Early on, as we were learning as new parents, we sat in the chair...... every night..... all night..... holding him. I am sure I am not alone in this statement.

Ian's GI issues stem from prematurity and reflux, along with reflux surgeries. He was a 29 weeker as well and was 2 pounds 1 ounce. He has ALWAYS had reflux and GI issues. He didn't have his G tube until one year. Until the Tucker Sling and ComfyLift bed, sleeping was a disaster. They help keep him comfortable, and keep the food in his belly. He also had continuous eight hour feeds overnight for quite some time. Ian also has probable vagus nerve damage from his fundoplication and moderate mucus production effects. Mornings often produced vomits all on their own. The Tucker Slings and ComfyLift beds helped considerably, but in conjunction with good medication.

Tucker Sling

ComfyLift bed with Vinyl Cover


Ian also has sleep apnea. The ComfyLift bed in particular certainly has made a HUGE improvement in that arena. He is well managed because of his inclined position. In addition to the reflux, mucus/vagal damage, and apnea, he has periodic limb movement disorder, the pediatric predecessor to restless leg syndrome (in many cases). The bed helps him rest well and keep his central nervous system quiet. (PLMD is usually caused by an iron deficiency that prevents the nerves from settling down at night..... as a result, the nervous system does not rest, twitching limbs every few seconds and causes awakening. As a result of the ComfyLift bed, Ian is able to "settle" and sleep soundly without as much disruption from his limbs.) Because of the sleep positioning devices, we have noticed less reflux, less mucus production, and more restful sleep

DIAGNOSING REFLUX, APNEA

I can still distinctly hear in my head the pediatrician telling us at the first “sick-visit” that reflux is very common in infants and that we should elevate the head of his bed with some pillows to help. Not only did this do nothing for Ian’s reflux, but we simply found him scrunched at the end of the bed every time we had to go into his room..... which was a lot! We weren’t getting anywhere with this option.

For a few days, we tried a positioner. This definitely kept Ian in place. However, we were still washing it from vomit every morning. The reflux was so severe, that nothing was keeping food in his belly. He was also struggling with frequent waking and obstructive apnea problems.

TUCKER SLING

Our next step was a Tucker Sling. We paid for this out of pocket. A little pricey, but well worth the value! I would certainly buy this product again if I had to go back. It is a wedge shaped pillow which is very firm foam. There is no compression while lying down. The wedge has various size “slings” which slide over the top. The sling then has a diaper/bloomer shaped “pocket” that your baby rests inside. The child can sleep on their back or stomach (at the discretion of a doctor). You place the child on the pocket and then fold the velcro tabs up to secure the pocket. **Trust me, your child is NOT going to fall out of this pocket!** This sling has amazingly strong velcro!! The child is then positioned at an incline (about 30-35 degrees) securely.

With proper medicinal management and his Tucker Sling, Ian was able to sleep comfortably for quite some time. He began using in his Tucker Sling at three months of age and graduated to a larger size sling three months later. There are numerous size slings and wedges depending on the age, weight, height, of your baby. I have included some photographs to show you how we used our Tucker Sling.

Tucker Sling wedge, sheets, and slings

Tucker Sling: open sling

Preparation:

Place baby in opened sling


Fold top portion of sling up between baby's legs


Fold first side of sling across baby while holding up center flap


Fold second flap across baby and secure firmly with velcro


Feed strap through metal buckle


Pull strap through first portion of buckle


Loop strap back through second buckle loop


Pull strap tightly


HAPPY BABY!!!

We even used swaddle techniques with the sling...

Place swaddle wrap under baby secured in sling


Wrap swaddle tightly around baby


Velcro or secure swaddle tightly, baby can hang freely


Or be supported by a boppy


Tucker Slings

COMFYLIFT BEDS

Ian eventually outgrew his Tucker Sling and needed a larger positioning device for sleeping. Thankfully, I had a friend in an international support group who lives in California. We were able to use her son’s ComfyLift bed. We received our first one second-hand and then passed it along again when we received a replacement. She had told me all about the beds and we decided it would be the right move for Ian.

ComfyLift beds are for any child over one year old. Ian has been sleeping in one since about 18 months. We placed it in his crib at first, in place of his mattress. Make sure to remove the crib mattress before placing the ComfyLift bed inside the frame. We never had any problems with him climbing out.

Ian resting comfortably in his ComfyLift bed


Ian resting comfortably in his ComfyLift bed

The bed creates an incline so that proper elevation is achieved. One great feature about the beds is they come with additional wedges that can be placed at the head. or foot, under the bed...... to allow for additional balance between head and foot, or increased elevation for comfort, illness, etc.

Free standing ComfyLift bed without additional wedges or sheet


Freestanding ComfyLift bed with additional wedges and sheet

The beds are a very comfortable foam wedge. The large part of the bed is one piece, and the additional wedges are separate, but come with the purchase of the bed itself. They can come with vinyl covers for feeding-tube-leakage protection. And they come with sheets as well. The foam bed can be a little hot. It does not breath quite as well as a traditional mattress. We found using the fan in Ian’s room and keeping the room a few degrees cooler solved that problem very easily..... even with Ian’s heat intolerance issues.

The sides of the bed are sloped in toward the center, to help the sleeper stay in place. This helped a lot with Ian’s reflux and gastroparesis. We were able to place him on his side and he would stay there very nicely. The catch was which side to position him on. Lying on your left side helps prevent reflux, but lying on your right side helps facilitate gastric emptying. We began placing Ian on his right side while running his overnight feeds and then placing him on his right side shortly after unhooking him.

Ian slept on his ComfyLift bed in his crib until he was almost three years old. A couple months before his third birthday, we removed the front portion of his crib to convert it to a toddler day-bed. We waited because the mattress is, of course, higher than a traditional mattress. We didn’t want to risk Ian falling out of the bed. I must clarify when I say falling, I mean slipping when getting down. With the sides of the bed being sloped into the center, there is an incredibly slim chance anyone would ever roll out of a ComfyLift bed!

ComfyLift bed placed in toddler day-bed (crib without front bars)

Currently, Ian's is on the floor, free-standing. He ran out of room in his old crib a few weeks ago (bars previously removed one year ago when it was converted to a toddler bed). He needed more room to stretch out now. His feet extend beyond the mattress, but he is still in the height range for the bed. They do make larger, and even adult beds. Many parents set them on the floor alone. They are large and hard to travel with. We recently requested a larger twin size bed. The company does advocate for larger mattress when children have certain diagnoses that warrant certain leg support.

Ian’s ComfyLift bed freestanding on the floor

I would also like to say that Ian does have a G-tube.  We have been able to feed him successfully overnight by feeding the tubing down through a legwarmer we place on his leg.  The tubing is able to run down his leg, and out the bed by his feet.  This gives him some freedom to move around without getting tangled.  We have also used it without legwarmers.  However, it is a HUGE advantage having the Tucker Sling and ComfyLift bed because he is not able to move as much in the bed..... cutting down on the number of feeding tube disconnects immensely!!!  The bed was a great addition to our overnight feedings.

Tubing runs out the bottom of Ian's shorts through the center slopes of the ComfyLift Bed


Tubing runs out the bottom of Ian's shorts through the center slopes of the ComfyLift Bed


Tubing then runs out the bottom bars of the crib


Tubing can then attach to IV pole with feeding pump


Because of the medical diagnoses, we were able to get the ComfyLift bed covered by his Virginia state Medicaid. I believe you can fight for insurance coverage under DME coverage. We plan to use Ian's bed for a LONG TIME. I'm sure he will always benefit from one! I *highly* recommend anyone with sleep troubles due to medical diagnoses try one of these beds. They can be pricey, but worth the longterm investment. I have found that persistence, good written medical support, and a strong medical equipment supplier are crucial in your fight for a bed. I have included some links for the ComfyLift beds and suppliers. 




















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