Simple Emergency Go Bag

We have had 2 trips to the ER that turned into admissions and I was not prepared in any way, shape or form for either stay! I hope that you learn from my experiences and ALWAYS have your go bag packed and ready God forbid you ever have to run out the door in the case of an emergency!

This is what I keep in our go bag!!

Clothes for YOU:

  Both times we were admitted I had nothing but what I was wearing and the diaper bag. I don't know about you but being stressed out and trying to explain to your stressed husband over the phone where you favorite pair of sweat pants are located at home does not work out super well! I keep a pair of comfy pants, a tee shirt and a set of under pants and socks. Our PICU area has a washer and dryer you can use and that was SUPER helpful for me during our stay!!

Toiletries:

   At the beginning of our stay I didn't have anything in the way of soap or bathroom essentials. I was given some by the PICU staff what is donated to them for parents. I don't want anyone to take this the wrong way because I appreciated it SO much, but I hated the products. they left my skin filmy, my hair greasy and the bristles of the tooth brush fell out while I was brushing. I went to the store during our stay and bought good stuff. My daily shower time was the only time to myself, and my decompression time. I wanted to enjoy this time and I wanted to feel CLEAN! After I got my Pantene shampoo and conditioner (because i'm super fancy) and a razor for my legs I felt like a new woman and I actually enjoyed going to the locker room and locking myself in a shower for 10 minutes! I now keep a bag of all of these items in our go bag!!

Medications and Vitamins: 

   During our admission of 43 days I literally went outside probably 3 times. I lived in those hospital walls with my little nugget and I got 0 vitamin D! I keep a small container in the go bag with 1 or 2 days of my vitamins. I only keep a small amount because if anything did happen someone could go get more or I could. But it is nice knowing I am covers for a day or two if it came down to it! I have also started keeping a little supply of Mel's meds in the bag. I do this because I look at the bag more now as just a go bag vs. a hospital bag. Its nice knowing that is a case of any emergency I can grab this bag and we would be good for a little while! I need to refill our meds and vitamins for the go bag, I recently used what we had in there because they had been in there for a while! 

Cash & Quarters:

  I have a small pouch in the go bag with about 10.00 in 1 dollar bills and a few dollars in quarters. Pretty much no matter where you go and at what time there is a vending machine somewhere, and sometimes when you make a late night ER run some cheese crackers and a DP sound like a gift from the heavens. Also my husband always goes to the vending machines when everything calms down. Its his time to get away for a minute and so something helpful AKA get this mamma some damn food! Because I have been known to get hangry and this is not a pretty sight! The machines at out Children's hospital take debit/credit cards but it is just nice to know that that extra stash is there! Our bag came with a cute little matching change purse! it is pictured below with mt Journal and pen!

Journal and Pen:

  I am a note taker. Every time a doctor would come into the room or a nurse would teach me something new I would grab my notebook and take notes! Some times I would get funny looks for writing down the most trivial things that I "Should" remember, But there have been SO many times I have refereed back to those notebooks! I also would try to journal daily about what happened with Mel and what was said that day. There are many days that I missed due to being busy or falling asleep but I tried. 

Mel's Things:

  In addition to a few days of meds for Mel I also keep a clean outfit and a blanket from home. When we went to the ER the first time and were admitted to the PICU they cut Mels onesie off of her (I still have it). I didn't have any other clothes with us, since we were there for 43 days I was able to get other clothes for her but if we would of gone home that evening I wouldn't of had anything for her to wear. I keep a blanket from home because Mel loves muslin blankets with satin tags. every night when she is going to sleep she finds the tag on her blanket and holds it for comfort. Hospital blankets are stiff and scratchy, during our PICU stay I actually had a couple muslin blankets and she would get a fresh one each day and night. This was another reason the washer and dryer in the PICU were extremely helpful! A couple diapers and wipes, Just in case! I included the tag to one of Mel's muslin blankets!

So this is what our Go Bag consists of. Pretty simple but would make us more comfortable if we ended up in another emergency situation! I feel that a bag like this is a good idea for anyone, you never know when you may have to leave your home unexpectedly and its such good peace of mind knowing that if you grabbed nothing but this one bag you would be okay! I pray that no one will ever have to use their go bag, and that everyone is staying well through this nasty cold and flu season!

LOL I just had to post this! Cracks me up every time!! for real though, go wash your hands have some wine and thank God for Lysol and Clorox!! Ohh and kiss those sweet babies!

Love until another day,
Shelbi

Monthly Medical Supply Order!

Every month I place an order through our DME (Supply Company) for Mel's medical supplies. In this post I will show you what our normal supply order consists of and how I store it all!

Our normal supply order

• A month supply of food bags. Our DME is very good about making sure we receive exactly how many bags we need for each month. I have seen other people post online that their DME sends 30 bags a month regardless, which is ridiculous to me!
• Feeding tube extensions. We receive 4 bolus and 4 continuous extensions a month. This is plenty for us since I am able to clean the continuous extensions and they last quite a while and we only use the bolus extensions for venting!
• Pre-cut Gauze 2x2 pads. Each box of these contains 60 2x2s. On days when Mel's tube is leaking more than normal or if I need to clean her button more often I go through a few of these! Every month I have to make sure that these are on our order or we don't get them! 
• Syringes. We receive 6 of each of the following sizes, 3mL, 5mL, 10mL, 20mL and 60mL. I use the 20 and 60 mL more that the other sizes but I still get them every month just so we will have them!
• 4 Pulse Oximeter Probes. Mel is still on a pulse oximeter at night to alert us if her heart rate or oxygen dip to a dangerous level. When we were using the pulse ox 24/7 we ran through these probes like crazy! I was lucky if I could get one to last a week. Now that we are only using it at night I can get one to last around 2 sometimes 3 weeks! (I use posey wraps and a sock over Mel's probe, it helps keep it in place and also cuts down on outside light allowing the probe to read better!)

We used to also receive Suction canisters, hoses and tips. We don't use the portable suction as much as we used to so after creating quite a stockpile of these items I decided to hold off on them for now!


After I place our order with our supply company it usually take about 3 or 4 days to receive our supplies. I recommend that if you are new at tubie life to call your DME and see what their normal processing time is! That way you don't get stuck using 1 food bag for 4 days! (Which can be done if in an emergency, just clean very very well with hot water and or Coca-cola!!)

Storage

I have seen some pictures from other moms that have all their supplies neatly put away with adorable little labels on each bin and its legit Pinterest worthy. I'm not that mom. I simply have 2 plastic 3 drawer containers, it works for us!

This is a pretty minimal supply order and storage area compared to some people, depending on different medical equipment such as trachs and ports. Also some people receive their child's formula and Real Food Blends from their DME so they have much larger orders!


Do you have a lot that comes from your DME? How do you store your medical supplies? I would love to hear your feed back in the comments!!

Squeeze those little people of yours tight this evening it gonna be cold outside!!

Love until another day,
Shelbi

Cleaning your tubies Stoma!

When Mel first had her feeding tube placed I was super intimidated by it! Up until that point I had never seen a G tube in person or even a stoma of any kind. And I did not want to hurt my little nugget by doing something incorrectly. Since then I have grown very comfortable with Mel's site and in this post I will show you and explain how I clean and dress her site daily!

I would like to preface this post with the fact that I am not a doctor and I have had no formal medical training. Everything I know is from my own research, being shown by medical professionals, and what works best for our family. If you have any concerns about your child's stoma or button I suggest you consult your child's physician.

I clean Mel's stoma every night before bed and also every time I give her a bath. This is the first step I take in her nighttime routine so that I can insure my hands are freshly cleaned every time!

Gather every thing you will need and have it laid out beside you so it is easy to reach. I don't like to leave the button exposed to go grab something I forgot because Mel loves to pull on it! if I do forget something I cover her button back up with her onesie and then go grab my forgotten item!

The Items I use every button change!

Q-Tips, baby soap, warm water, Desitin, 2x2 split gauze and a fabric tube pad. 

 WASH YOUR HANDS! Your child's stoma can become infected just like any other opening into the body. Stoma infections can be very serious and lead to complications. 

• First I take off the dirty fabric tube pad and split 2x2. I just set these to the side for the time being.
• I then dip a Q-Tip into the baby soap and I clean around her stoma. I make sure to get all the "tube boogers" loosened up.
• Then I take a clean Q-Tip and I dip it into the warm water and wipe around the stoma to further remove any crusties and make sure the bottom of her button is clean.
• After it is clean I take a dry Q-Tip and make sure I dry off the whole area really well, sometimes this takes more than one Q-Tip.
• Next is the Desitin or whatever barrier cream you use. I like to pull our Desitin up in a 3 mL syringe so I can "pipe" it around Mels stoma! is is so much easier and way less messy!
• Place the clean 2x2 around the stoma.
• Finally place the clean fabric tube pad over the 2x2.

I like to use a 2x2 and a fabric tube pad for a couple reasons. Desitin is some crazy stuff and it is hard so wash off of our tube pads. Also I feel like using both pulls Mel's button up to where it is snug and it does not move much. 

Desitin or barrier cream is used so that if the stoma leaks stomach acid or the button leaks formula/food the healthy skin around the button will not get burned and irritated. 

Ever since Mel was converted to her GJ tube she has had a decent amount of Granulation Tissue around her stoma. This is a very common thing with stomas and some cases are worse than others. Granulation tissue is not painful but it is very very vascular so it bleeds very easily. Some doctors and parents like to treat granulation tissue with Silver Nitrate. Which looks like a long matchstick with silver on the tip. When the silver touches skin it cauterizes the tissue. A lot of people have had great results with silver nitrate and had minimal discomfort. When Mel was about 7 months old we went to a GI appointment and he used the silver nitrate. Mel screamed like she was in pain and her stoma was sore and irritated for days afterward. Also I saw little improvement with her granulation tissue. There are other ways to treat granulation tissue if needed. (Always consult your child's doctor about any problems with your child's stoma or any treatments.)

Steroid Cream- We have Triamcinolone cream that we were prescribed for granulation tissue. this cream can only be used for a few days at a time every couple weeks.

Alum & Calmoseptine ointment- Alum powder can be purchased from the grocery store in the spice isle and the cream from the pharmacy area. These 2 items can be mixed into a paste then placed around the stoma. I have yet to try this method but I will be soon and I will update on how it works!

Essential oils- I have read that a solution of 1 drop Frankincense, 1 drop Lavender and Coconut Oil are good to help heal granulation tissue. I have been using this method on Mel for 2 weeks now and I see slight improvement but not much. I wanted to try this method as it is more natural. I just placed a drop of each essential oil in a 10mL roller bottle then filled the bottle with fractionated coconut oil. ( I saw no improvement with this method, I will be trying the Alum and Calmoseptine soon!)

I tried to get pictures as I was going through the steps but umm wrestling a 16 month old while protecting a G button and trying to take pictures is NOT easy! I will work on getting pics and will add them if I am ever successful!

As always if you have any questions put them in the comments and I will get back with you!! 

Hug your little people tight and have a big ol' glass of wine ladies!!

Love until another Day,
Shelbi

4 types of feeding tubes in 6 months!

My daughter Mel had 4 different types of feeding tubes in her first 6 months of life. I will describe each tube, this will help you understand a few different types and also familiarize yourself with them if a feeding tube is a possibility in your families future.

First was an Orogastric (OG) tube. This tube was placed in Mel's mouth and passed through her throat and down to her stomach. This tube was taped to her skin at her lip and chin. Mel had this tube placed at 18 hours after birth due to copious nasal secretions (aka a shiz ton of snot) that was worse while she was nursing and it was blocking her airway causing her oxygen to drop. This tube allowed Mel to get all the nutrition she needed while not having to work and burn calories and also not create additional snots!

On September 19, 2016 when Mel was a month and 3 days old she had her AMT Mini-one gbutton placed. This feeding tube is placed on the left side of her abdomen directly into the stomach through the abdominal wall. With this tube we could finally see her sweet little face without tape all over it holding the OG tube. I LOVED this tube! It was low profile and fit well on her tiny belly. I didn't feel like it got caught on much and I never had an issue it granulation tissue. 

In January 2017 Mel got very sick, we found out that she had aspirated reflux into her lungs and that resulted in pnemouina and a collapsed left lung. She was intubated in the PICU for 2 weeks and that will forever be one of the worst times of my life. In order to prevent her from refluxing the doctors decided to try an NJ (Nasojejunal) feeding tube. This tube went in through her nostril and went down through her stomach into the part of her small intestine called the Jenunum. Since her food was bypassing her stomach it cut down on her reflux significantly! The problem with this tube was...

 1. It was very easy for her to pull out. To replace this tube we had to have an xray to be sure in was in her Jejunum before she could be fed. This was a pain because even in one of the best children's hospitals in the US if it's night time, a weekend or a holiday it's going to take forever and a day for an xray!

2. She already has a hell of alot of snot in her little nose and it was just clumping around this damn tube. To keep her from pulling the tube out they installed a "bridle". This was a piece of fabric that clamped to the tube and wrapped around her septum. If/when she did pull on it, it would not feel good so it would deter her from pulling it. The bridle was SO terrible with all her secretions! I basically demanded we had to figure something else out before we went home! 

(I would like to add that a bridle is a great option for some people! I have seen children with them and I have spoken to parents that swear by them! So don't let our experience deter you from this as it is minimally invasive.)

Finally in February after arguing with doctors about Mel's NJ tube just not cutting it, a doctor agreed convert her G-button to a GJ tube!!! The reason this took arguing to achieve is because at the time Mel only weighted 11 pounds. Most doctors require patients to be at least 22 pounds to convert to a GJ so the procedure can be done in Interventional Radiology instead of the OR. This glorious man told me he could and would do the procedure in the OR and we could get that terrible tube out of my babies nose! So we booked it! 

Mel still has her GJ tube and after 7 months of continuous Jejunum feeds we are converting her to a blended diet that goes to her G (stomach)!! I will explain continuous feeds and our blended diet transition in a later post! 

So I guess you could say we are pretty well versed in the tubie life! I would love to know if your little one has a tube and what type! And as always I am always game to answer any questions!!

Love until another day,

Shelbi