Out with the old...

The frame was cockeyed, it was difficult to keep the seat locked on it...


... and Megan couldn't keep herself upright. Does this look comfortable to you?


This was the last person to sit in the chair before we left it in the hallway on the way out the door.


(ahhh, my first blurry background. I'm sure I'll get better at it with practice.)

...and in with the new!


Very much better!


This new chair is more comfortable, shaped to fit her body**, and has a sturdier new frame. We started the process for this new chair last October. So, you can see why it is so exciting. When you finally get the things you need, you really appreciate it. Waiting in anticipation has that effect on you.

**Shaped to fit her body The back of the new seating system in this new chair is filled with this foam stuff that came as separate liquid compounds and creates a type of soft (yet sturdy) foam that is poured into the back of the seat and molded to fit Megan's curves to give her additional support since she has so much trouble keeping herself upright. This is a picture of what it looked like in the bowl after they poured what they needed into her chair.


And this is what it looked like several minutes later when it finished growing. It really made a mess in the box. See how shiny it is. It was actually very sticky and when I put my fingers into it - you could see the imprint in the top. It sure is amazing what technology brings to everyday life.

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Giving IV Antibiotics at Home

I decided to show this post because we have talked about giving Megan IV antibiotics at home after two hospitalizations. We gave antibiotics from May 14-25, 2009 and from June 26-July 6, 2009.

During the first round of IV antibiotics, we administered vancomycin every 6 hours (4 times per day). During this last round of IV antibiotics, we administered vancomycin every 8 hours (3 times per day) as well as gentamicin every 24 hours (once per day).

I have made a pictoral representation of the process for those who are curious about how giving IV medicine works in the home as opposed to the hospital.

This first picture is of Megan's PICC line-this type of IV is placed in the hospital and is more stable to be used in the home than a peripheral IV (shown in this post), which many of us are more familiar with. PICC lines are typically placed when an IV is needed for usage on a long term basis and when the patient is unable to sustain peripheral IV access (both of these reasons applied to Megan).


The first step in the administration process is to gather your supplies. This picture shows our method of putting all the supplies on a plate. The medication is placed in these "Q-balls" and programmed to infuse automatically for the specified time. Because the medication is refrigerated, it needs to be taken out of the fridge 2-3 hours before it is to be given. (We just refill the plate after each dosage to get it ready for the next one). In addition to the medication, you need sterile alcohol swabs, two or three sterile saline flushes (depending on if you are giving one or two different "Q-balls"), and a heparin flush.


The vancomycin took one hour to infuse each time (larger ball). The gentamicin took 30 minutes to infuse each time (smaller ball).

After the supplies are ready, you need to wash your hands thoroughly. This is important to reduce the spread of germs, especially since the IV exposes the patient's veins to outside elements. Next, you locate the cap of the IV port and hold it upright.


Then, you clean the cap thoroughly with a sterile alcohol swab. And then a second time with another sterile alcohol swab. After the cap is sterilized, make sure that nothing touches it.


Then, you use a sterile saline syringe to flush the IV. Since they come pre-packaged, you just unwrap the syringe, remove the cap (being careful not to touch the sterile tip), and remove any air pockets in the fluid. After the air is removed, the syringe pushes into the tip of the IV cap and turns to lock into place. After the syringe is locked into place, you unclamp the IV and push the saline into the IV until empty.


Next, you unlock and remove the syringe and pick up the connector at the end of the tubing on the medication "que ball" and remove the protective cap before locking the connector into place the same way the syringe locked into place.


Now you are ready to open the clamps on the IV and the medication "Q-ball." Once both of the clamps are open, the medication will automatically infuse for the amount of time the ball has been programmed at the pharmacy. This picture shows the entire ball and tubing with the clamps open.


You can tell the ball is finished infusing by looking at the core. It is a little spongy but will look like a solid line instead of having a clear bulge around it.


After the medication has finished infusing, you disconnect the ball's tubing, clean the cap with a sterile alcohol swab again (because it has been 30 minutes or an hour since you started), and flush the rest of the medication through the IV tubing with another saline-filled syringe.


If you have a second medication to administer, you attach it next. If not, then you flush the IV a second time with a heparin-filled syringe. It comes pre-filled like the saline syringes. The heparin stays in the IV tubing and prevents it from getting clogged with any clots. (If you notice, the saline syringes come with a white cap and label and the heparin comes with a blue cap and label for easier identification. The adult dosages of heparin have a different colored label and cap.)


After the heparin is administered, you just clamp the IV tubing and throw away your empty supplies.

It is an easy process to learn. However, I was nervous in the beginning because I felt a higher level of caution (responsibility) because I was putting something into Megan's blood stream. After a few dosages, I was more comfortable with the process and developed a routine.

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All About GJ-tubes

Please Note: This is a Parent-to-Parent Conversation about my experience in caring for my daughter who has been tube fed for the last 8 years. It is not a substitute for consulting your physician about how to proceed with your own child or loved one.

GJ-tubes (Transgastric feeding tubes) are similar to G-tubes in that they provide a way to deliver nutrition to a person who is unable to ingest their daily nutritional requirements orally. This type of feeding tube uses the same stoma created by the G-tube if the patient has already been using a feeding tube. No further surgical procedures are needed to switch to this type of tube. (That's the good news!) They are called GJ-tubes because there are two separate routes included inside the feeding tube. One route is delivered into the stomach. The other route is delivered into the small intestines (also known as the jejunum, hence the "J").

A person might need a combination tube like this if their stomach can only handle small amounts of formula, medication, or water. Megan can only handle her medications and water amounts in her "G" port. She receives her formula feeding through her "J" port. Physicians may also elect to prescribe a GJ-tube for a patient even if the person cannot digest anything through their stomach because the "G" port can also serve as a way to minimize air build-up in the stomach. The "G" port would allow a person with this problem to "burp" easier.

Because the "J" part of the feeding tube is threaded into the jejunum, GJ-tubes are placed in the x-ray department of your medical facility under flouroscopy (this is like a video x-ray machine). The "J" portion of the feeding tube that is inserted into the body is much longer because it has to be threaded through the stomach and then a bit further into the small intestines to prevent it from retracting back into the stomach. The nutrition totally bypasses the stomach and directly enters the small intestines instead.

This is a Low Profile GJ-tube in its entirety. There are two holes in the tube just below the "balloon" that release contents into the stomach. Then, there are two holes in the end of the tube that release contents into the intestines.

This is the front view of Megan's low profile Mic-Key GJ tube. We chose this type again because it was most similar to what we were already used to. There are two extensions attached to it because she was eating when this picture was taken.
This is the side view. The "G" port is on the left side. The "J" port is on the top. The cover that closes them is one piece. They either have to both be closed or open. Because she feeds for 10 hours a day, we always keep an extension attached to the "G" port with it clamped to keep from leaking stomach contents. The "balloon" inflation device is on the far right.

This type of GJ-tube also requires the use of the syringes, feeding bags, and extensions mentioned in the All About G-tubes post.

If a person had a G-tube to begin with, the formula used for nutrition will probably change when this new tube is placed. Megan was switched from Pediasure to Peptamen Jr. There is also a version of the Peptamen for adults. This is because the new formula is more elemental, broken down into smaller units chemically. Normally, when food is ingested the stomach produces gastric juices that breaks nutrients down to start the digestion process. Since the J-tube bypasses the stomach, the formula needs to be partially digested for the small intestines to be able to process it.

Additionally, the formula may no longer be fed in "boluses," larger amounts that represent a mealtime. The small intestines do not have the capacity to hold large amounts of formula until it can be absorbed and used nutritionally. This is ultimately the stomach's job. The stomach is supposed to be the holding tank and the intestines are to take and use the nutrients in the speed they are able to digest them.

Therefore, the speed at which a person can be fed into the J-tube is much slower. When Megan had her G-tube, we could feed her six ounces of formula within about a five minute period. Her stomach was slow to empty and we fed her each "meal" five hours apart. When she got her J-tube the fastest rate we were able to feed her was about three ounces per hour, or 90-100ml per hour. When spaced evenly over the hour, this breaks down to be about 5-8ml every five minutes. When the Dr. told me this, my first thought was, "You mean I have to feed her a teaspoon of formula every five minutes all day long?" The Dr. said, "Yes, but no. The feeding pump that you use during the night will be used during the day now."

Megan needed 1000ml per day of the new formula (33oz). The Dr. prescribed her pump to run at a rate of 100ml per hour. So, she would be "hooked up" to the feeding pump for about 10 hours per day. We were given the choice as to which time we started feeding her. We decided that we could call her morning medication regimen "breakfast" and chose to start her "lunch/dinner" at 12:00pm because that is when lunch begins at school. Megan would be able to start her feeding the same time as her peers and finish around 10:00pm.

Wait a second! "If Megan's pump only has a battery life of about two hours, will she be chained to a power outlet all day? That would suck." Luckily, the Dr.'s answer was that there was a feeding pump that was a small device that charged while it was placed in its base on an IV pole during the night and the battery lasted about 12 hours. We could take the pump and feeding bag and place them into a backpack that could sit on the floor near the couch or hang on the back of her wheelchair if she was at school or out in the community with the rest of the family. The Dr. said that she would contact the medical equipment company and let them know to change our Kangaroo pump that was stationary with this new Kangaroo Pet pump.

Backpack shown with pump	Pump shown as larger image

Whew, what a relief that was.

Note: You can also choose this style of GJ-tube. The "G" port is on the right and the "J" port is the larger port in the middle. The balloon inflation device is on the far left. There is no separate medication port with this tube. We started with this type of GJ tube in 2003 when Megan first got hers placed. This type of tube does not require extensions either. You just attach a syringe or feeding bag cap into the port of choice.

(In my experience, it is easier to accidently pull this tube out than the "button" style. I experienced it twice-OOPS). Megan got her GJ-tube right before the "button" style GJ-tubes were being introduced. As soon as they were introduced, we switched models right away. Didn't want any more oopsies.

If this tube is accidentally pulled out or breaks, the parent cannot replace it at home. The parent is only able to place their regular G-tube kit and call their physician for an order to place a new GJ-tube in your flouroscopy lab. This is a major hassle. If the tube comes out over the weekend, the person may need to be hospitalized for fluids until they can get a new one placed in flouroscopy, especially if they are unable to tolerate any G-tube feeds at all.

Megan has a clinic that she visits every six months for "check-ups" with the Neurologist, Developmental Pediatrician, Orthopedic Doctor, Pulmonologist, and any rehab therapists we have questions for. This is usually a morning appointment and we schedule a GJ-tube change in the afternoon on these clinic days twice a year. It is necessary to change them out every six to nine months because the bodily fluids are hard on the tubing on the inside. We do not want the bodily fluids to break the tubing down or apart. It would take surgery to remove any "spare pieces" of the tube if they are left in the body. We have not had any problems of this sort with her GJ-tubes throughout the years using this schedule. Until last Friday Evening, that is!

Go Ahead. Click that link. I know you are dying to be "in the know" now.

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All About G-tubes

Please Note: This is a Parent-to-Parent Conversation about my experience in caring for my daughter who has been tube fed for the last 8 years. It is not a substitute for consulting your physician about how to proceed with your own child or loved one.

A G-tube (Gastrostomy Tube) is a device that is inserted through a person's abdomen to create a path to the stomach, also known as a "stoma". They are used to transfer nutrition (mostly liquid formulas) from an external source (like a syringe or feeding bag) into the stomach. In some cases, the person uses the G-tube as an additional supplement to what they are able to eat orally. However, the person receiving the nutrition does not have to ingest, chew, or swallow any food for nutrition. In many cases, the person is unable to chew or swallow correctly, which can be potentially dangerous (leading to choking or aspiration - where the nutrients are ingested into the lungs, which creates increased risk for lung diseases and pneumonias).

Aspiration is the reason Megan needed a G-tube placed. She used a NG (Nasal-gastric) tube for about a week before we had the G-tube placed. During this week, we had to replace the NG tube multiple times because she pulled it out, her skin was very sensitive to the tape used to hold it in place, and we did not like it that the NG tube was so noticeable to others. The G-tube has turned out to be life sustaining for Megan. If I had another child in the same position, I would do it all over again. Even if it turned out they could learn to eat on their own. They can always be taken out when they aren't needed anymore.

Placing a G-tube is a surgical procedure for children. It took Megan about 3 days to recover from the surgery part. She was just generally sore and uncomfortable. They gave her pain medications and taught us how to use it, care for it, and how to replace it if it came out before her appointment with the surgeon in a month. She had it placed the day after Christmas and was released from the hospital on New Year's Eve - no joke!

There are several types of G-tubes. This picture is the "starter" g-tube that many surgeons place first. Megan also started with this tube in December 2000. (I do not, however, recommend letting your child do this - I hope for obvious reasons. HaHa:))


This tube is placed first because it is the best for creating a healthy stoma and allowing for drainage just after the procedure. Also, there will be a little bit of crusting that occurs around it. Our surgeon told us this is normal and not to wash it off. (Note: This site looks a little irritated to me. To help with this a gauze pad or IV sponge can be used with some zinc paste for a few days. I found that this also helps keep the extra skin from growing around the tube - the body's natural response from trying to close the opening created because the tube is placed.) Megan's tube was taped on each side of the horizontal "rod." The tube that comes out the middle is the one that is used to feed your child or loved one. I think she had this kind for about a month. Then, the surgeon gave us a choice as to which other type of g-tube we wanted to use. We were offered two types to choose from.

The first type of tube is a Mic-key "button" type tube. It is a "low profile" tube because it is small and easier to hide under clothing. Figure A shows the part that extends outside the abdomen (and has a piece of guaze between the upper part and the abdomen). When the nurse described this type of tube to us when Megan was 14 months old she said, "Think of it more like the top of a beach ball. It has the hole on top with the cap that seals across the top."

Figure A


Figure B shows the tube in its entirety. The "balloon" at the base is filled with water to act as the anchor so that the tube is not easily pulled out of the opening in the abdomen, also called the "stoma." The tube is inserted into the stoma and then the balloon is inflated by inserting a syringe with water into the side of it.

Figure B

Now, I know that you are wondering, "How do you feed someone with such a tiny opening?" When you feed someone with a "button" style g-tube there are a series of extension tubes you can use to attach to the button. This picture shows how you attach the extension tube. There are lines on the "button" and on the part of the extension that is inserted into the opening.


You line these up, push in the extension, and turn it clockwise to lock into place as shown here.


The other end of the extension looks like this. It has a clamp with either one or two ports used for attaching a syringe or cap for a feeding bag. The particular extension shown in this picture has two ports and currently has a cap for a feeding bag attached.


When the extension is attached, it needs to be clamped and covered if it is not in use. This is because the stomach contents can also flow freely out of the stomach when the extension is attached. When people are fed a "bolus" it means that they are fed their nutrition/formula in larger amounts at once. For example, when Megan first got her G-tube at 14 months of age, we would feed her 6 ounces of formula (Pediasure) three times a day like it was a meal. The amount of bolus a person needs may vary depending on their age, size, and daily nutritional requirements. Boluses are usually "gravity" fed using a large syringe that looks like this.


The formula is poured into the syringe attached to the extension and "falls" into the tube automatically. (I prefer this type of extension that has a clamp, is 24 inches long, and only has one port at the end. The length of the extension can be "threaded" up the person's shirt and out the neck. That way, especially if you are in public, you can access the tube without exposing your child or loved one.)

In addition to receiving these "boluses" three times per day, Megan would also receive supplemental feedings at night delivered by a feeding pump. That was because her stomach could not tolerate more than 6 ounces at a time (she would throw any more up). She needed 24 ounces a day for her nutritional requirements and could only tolerate 18 ounces throughout the course of the daytime. She was 6 ounces short of what she needed.

These additional six ounces were given while she slept over a six hour period. We would put six ounces of formula into a feeding bag - that looks similar to an IV bag - and set the feeding pump to deliver about an ounce per hour. She would eat in her sleep from 10pm to 4am. The pump would alarm to wake us when the bag emptied. We had a pump and bag that attached to an IV pole like this one pictured. However, this picture is of the current pump that the hospital is using. This pump also needs to be plugged into a power outlet because it has a short battery life.


Note: Many children are able to tolerate their daily nutritional requirements within their specified bolus amounts throughout the day. Not everyone needs to use the night feedings and pump like we did. However, this is one of the perks of having a g-tube. You can feed someone whether they are awake or asleep. People without g-tubes must only eat when they are awake (wink).

The other type of g-tube we were offered looks like this one.


It is not as small as the button but also does not require attaching an extension. You attach a syringe or feeding bag cap right into the top of the tube. There is no clamp on this tube. If you do not want stomach contents to leak out while the cap is off and you are attaching a syringe, you have to pinch it together like you would a garden hose to stop the flow.

This is the type of g-tube that we put in on Friday night (June 2009) when Megan's GJ tube fell apart. The hospital floors don't keep the "button" style in their stock because they are made to fit a certain length of stoma (measured from the top of the abdomen to the stomach). There can be various lengths needed depending on the size and weight of the person using the button. This longer style of tube can be used for a short or longer path to the stomach. The square base can move up and down the length of the tube to lay nicely on the abdomen at whatever length is needed.

A syringe or feed bag cap can be attached to the large port on this tube. There is also a med (medication) port that you can use with a dosing syringe just like in the dual port extension shown for the "button" model. (In my experience, this is more of a hassle and it is a lot easier to make messes with medications than it is a help. I prefer to use the larger syringe and port to administer medications.) The orange part is where you place the syringe to fill the "balloon" anchor with water inside the stomach.

Our family chose to use the Mic-Key low profile g-tube for Megan's permanent style. We liked the fact that we could hide it easier and that she would be less apt to tug on it after its placement. The surgeon also faxed our home supply company a perscription for this style to carry with us in case we needed to change it ourselves if it accidentally got pulled out or the balloon broke (or lost its water) inside her stomach. They trained us on how to do this. It is really easy and any parent can do it. And, NO you cannot see inside the stomach - although, when contents come out of the stoma it can be messy. If you have a washcloth or some paper towels ready, you will be fine.

Megan used this type of G-tube until April of 2003 when she needed a GJ-tube placed because of gastroesophageal reflux issues. We still however, carry the same G-tube replacement kit in case something happens to the GJ-tube.

Next up, "All about GJ-tubes," of course.

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