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Saturday, June 27, 2009

We're Home Again!

Here are our "smiling in the car" pictures from our trip home yesterday. The car ride was unsettling to Megan's system. But, we finally made it back home to rest in our own beds.


Yes, they discharged Megan on Friday, not Saturday. We got home at about 7:30pm. We are still not finished "moving back in" yet. Between Megan's busy schedule, getting some rest, meeting a new nursing provider, and filling perscriptions we have been trying to put some medical supplies and our luggage away.


It was some crazy billboard that got the smiles that were produced for these pictures. Whatever works is just fine with me - as long as I have my camera ready.


Here are all my kids laying on the couch watching a movie together.


It's such a nice feeling! Now, if they could just do that more often!

Wednesday, June 24, 2009

Checklist for Thursday Saturday?

Updated Thursday Morning: The "fever monster" showed his ugly face (ever so briefly) yesterday. They took blood cultures to be sure that the fever was not caused by the reoccurence of the bacterial infection we have been fighting. They won't have results until 48 hours have passed. (We were sooooo close!)

Be watching throughout the day for important information about our activities. Then comment a guess as to what you think we are doing.

Antibiotics Ordered at Home Health. Check
Nursing Care Hours Set. Check.
Echocardiogram Appointed. Check.
Blood Cultures Ordered. Check.
Laundry Washed. Check.
Laundry Dried.
Bags Packed.
Room Cleaned.
Van Packed.
Medical Supplies Charged. Check.
Daughter Dressed.
Prescriptions Filled.
Report Written.
Walking Papers Received.
Last Antibiotics Administered.

I'll let you know when we get there. We'll be taking pictures for this sight to see. Let's keep our fingers crossed and pray that the ugly "fever monster" has been scared away for good.

Monday, June 22, 2009

Not Me! Monday - Late Night Confession

Better late than never right? It is still technically Monday for a few more hours minutes. Others chose to add MckMama's original NMM posts to her BlogFrog Community today. So, here goes.

This weekend all the rooms in the Ronald McDonald House got presents left at their doors. I did not see my present...


...with less goodies than my neighbor...


and switch them. (Theirs had a shoe polish cloth and extra kleenex.) No one was looking.

Then, I went to the hospital gift shop to get some cough drops. Which I found. (Thank you, Lord!)


And, some Vitamin C drops. (Cool, bonus!)


Some sort of fruity, sugary, gummies? (I love gummies!)


But, sour exploders are great too. They're gummies and they liquify in your mouth? Which to get?


Who put the medicine in the candy aisle? I can't say "NO" to laffy taffy, in multiple flavors.


But, I have too many sweet items!!!!! Oh, I know, I'll add something.......



.....................SALTY!!!!!

I didn't? did I?

Nope, not me!

Planning to "Make Like a Tree and ..."

We spoke with all of Megan's doctors today. And, this is what they got their heads together and "thought up." We got our three clean blood cultures over the weekend - even though it was a poking fest. Today, we got the go ahead to have the picc line (IV) placed to finish the 14 days of anitbiotics, which started on June 17th (the day of the first clean culture). That means, the 14th day is July 1st. Megan will be on Vancomycin 4 times a day and Gentomycin once a day via the picc line (IV).

The Infectious Disease doctor wants to schedule her picc line removed on July 1st and also have a repeat echocardiogram completed. If everything looks good on the echocardiogram, Megan will be finished with the antibiotics and just need to have a repeat blood culture two weeks later to make sure this bacteria is still gone. If it is, then we are done. If not, we will discuss further antibiotic intervention then.

Because the picc line is a type of IV that we can use at home, the doctors are making preparations for having us complete everything there and coordinating the orders with Megan's pediatrician in Mishawaka. If all goes well putting these plans into place, it looks like we will be home in the next couple of days.

Megan and I, particularly, are looking forward to being able to sleep in our own beds once again. Keep us in your prayers that everything will be able to completed as the doctors are planning. Otherwise, we would not be able to come home until after July 1st. (However, if Dr. K's associate works as fast as she does, I predict very soon).

Here is what Megan has to say about everything today:


And, the other day - but I don't think I shared this picture yet.



Thank You, Lord!

Thank You, Lord, for hearing and answering my prayer on behalf of Megan. I pray for the longevity of this new IV until her more permanent one can be placed tomorrow. I thank you for the clean blood cultures this weekend and for leading us each step we take. Please give us wisdom and strength to make our future plans regarding Megan's antibiotics tomorrow with the doctors. We are helpless without You.
In Your Name,
Amen

Sunday, June 21, 2009

A Prayer for Megan

Lord,
I come to you right now as a mother advocating for her daughter's comfort and healing as only you can provide. I was hesitant to allow the doctors to use smaller peripheral IVs to treat her blood infection, but trusted that You would only allow what is best for us and for Megan. She has had two IV's this weekend with 10 tries to place them already, and now she needs a third. Please calm Megan's movements, give wisdom to the nurses, help the doctors make the best decision possible, and give me peace about having this third IV placed in the coming minutes. I love my little daughter so much and I don't want her to needlessly suffer. I ask for swiftness in allowing our family to get a good night's sleep so that we may draft a new plan in the morning for Megan's future in the hospital or our administration of her antibiotics at home. I know you can work miracles and have seen them in our own lives in the very recent past.
In Your Name,
Amen

Saturday, June 20, 2009

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 pumpPump 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.

Friday, June 19, 2009

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.

Thursday, June 18, 2009

YUCK!

The Infectious Disease (ID) team came to see me this morning. (I missed Dr. K because she rounded before I got to the hospital this morning -Whoops:) Anyway, ID said that the blood culture they took from the 16th (Tuesday) was growing bacteria again. It was Monday's culture that we were excited about yesterday. This means that we haven't killed this bug yet and that the "temporary style" line is probably infected as well. YUCK 1,000 TIMES OVER.

Now, they are recommending the removal of the "temporary style" central line. OK - but they cannot recommend placing the picc line yet as they fear it will be a target for the bacteria in her blood stream to attach to as soon as it is placed. YUCK 1 HUNDRED THOUSAND TIMES OVER!!!

And, we are left to rely on the tiny peripheral IV access (that we had trouble keeping in the past) to kill this bacterial bug with. We need three days worth of blood cultures with no bacterial growth before they will recommend placing a picc line to finish out the two more weeks of IV antibiotics she will need once we get the three initial days of no bacterial growth. Can I get a YUCK 1 MILLION TIMES OVER???

Here is the action needed by everyone who reads this post. Yes, that's YOU! Pray for the livelihood of this IV placed in the right forearm of my little daughter. It took three pokes to get this IV placed. The first two sites blew right away. This IV is positional and fragile to start with. If it could last 24 hours it would probably be a miracle. I need it to last 4 days. It is being used to administer antibiotics 7 times a day. 7 X 4 = 28 sessions of antibiotics.


Matthew 19:26 But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.

It's Picture Time!

Megan as she slept on Tuesday

Megan as she slept on Wednesday


Megan as she slept on Thursday


Monica visiting and cuddling on Wednesday afternoon


We played with the pennies in the stream...

And added a few of our own pennies and prayers


I love my girls so much.
And now, for the bonus "movie" of Megan almost laughing - but a great smile and wave nonetheless.
video

Wednesday, June 17, 2009

Good News All Around!

The doctors have been taking daily samples of Megan's blood to determine bacterial growth for the last week. On Friday they took out her permanent central line and placed the temporary one. The cultures from Saturday and Sunday still showed bacterial growth even though we thought the source of the bacteria had been removed. They have continued on the same IV antibiotics daily since last week.

Just this morning we were told that the blood sample drawn on Monday was still clean - showing no signs of bacterial growth. Also, the results of the echocardiogram were normal and the chest x-ray was improved from the one they took when she was admitted last Tuesday. Hip, Hip, Hooray! Hip, Hip, Hooray! Hip, Hip, Hooray! (And, Praise God - For He's a Jolly Good Fellow! Which nobody can deny.)

As for me, I am slowly improving. I am trying to take Dr. K's advice and rest. I took a 3 hour nap in Megan's room this afternoon after my family went back home. I am taking my medicine as prescribed and will finish my regimen about the same time Megan finishes hers here as long as her health stays on the same path.

I have a full picture post coming tomorrow as well as the promised GJ-tube educational post. For now, I will leave you with this image:


I'll take half of a smile today - She is definitely feeling better. I am so thankful for that.

Tuesday, June 16, 2009

Dr.'s Rx = Rest and More Rest

Regarding Megan:

Friday evening Megan's tunneled central line was removed because of the bacterial infection it acquired. They placed a "temporary style" central line to give us access to administer the antibiotics that she will need for the 14 days after the daily blood cultures sampled return negative for further bacterial growth.

Our hope was that after the infected line was removed that subsequent blood cultures would no longer grow the bacteria because the infection appeared to be isolated to the central line catheter. The initial blood culture taken from a vein in her foot showed no bacterial growth.

Yesterday (Monday), we were told that the earliest we would be able to come home would be June 23 because that date is two weeks from when the infected line was removed. However, we found out this morning that new cultures taken over the weekend once again showed bacterial growth. These new samples were from the new "temporary style" central line they placed on Friday evening. Because of this, we will not be able to count the two weeks of antibiotics until future blood cultures stop showing bacterial growth.

As I mentioned in my post on Friday, the Infectious Disease doctors recommended placing a picc line instead of the "temporary style" central line. A central line was placed instead because Megan's surgery to remove the tunneled line was performed in an operating room during the evening hours. Picc lines are placed in flouroscopy (real-time x-ray) and the lab was already closed for the weekend. They decided it was better to go with the central line rather than try to use a smaller peripheral access because of the problems Megan has keeping them functional. It seems now though that since the new central line has also picked up this bacteria that we may go ahead and remove it also and place the picc line sometime this week.

The doctors are watching Megan's symptoms very closely and ordered an echocardiogram (ultrasound of her heart) and chest x-ray this evening to make sure the infection has not damaged her heart or lung function thus far. We do not have any evidence that this is the case. Megan looks good and has been resting peacefully. She even giggled a bit yesterday after they replaced her GJ tube (without any sedation) in flouroscopy.

Regarding Lori:

I found myself at the immediate care clinic yesterday because of complications with my bronchitis. After resting all weekend (I literally did not get out of bed), I was still short of breath, coughing, and very fatigued. I had a chest x-ray and found out that I do not have pneumonia. (Thank you, Lord!) I do, however, have a severe case of bronchitis. I was prescribed an antibiotic, some stronger cough syrup, as well as a rescue inhaler for my "coughing attacks."

Dr. K told me this morning that I need to get as much rest as I can while Megan is in the hospital so that I can get better for when Megan is ultimately discharged. Her exact words were "I already know you are a great parent. You don't have to prove anything to me by not leaving her (Megan's) side. This is going to be a long waiting game and you need to relax and get better." (Easier said than done, Dr. K.) However, I am trying my best. Tonight will be the fourth night in a row that I have not slept at Megan's bedside. It is not very easy for me to leave my baby, but the nurses have been good about calling me if they have a question or if Megan needs something.

My mom brought Monica for a visit last night (Monday) and will be going back home tomorrow (Wednesday) afternoon. While they were here, we learned how to SKYPE with my laptop. We spoke with my dad, Ken (who went home this afternoon to go back to work), my grandma, and our puppies. We were also able to show my dad and my grandma how Megan looked in her new pajamas in her hospital bed. It was really awesome to see and talk to them - the nurses were awed by our technology and thought it was really cool. We are so blessed that God has enabled us to utilize this service while we are away from home. I can still see the faces of my family members and feel comfort knowing that they are only just a simple "log-in" away.

Sunday, June 14, 2009

A Day of Rest

I have been tired for a long time. I don't remember the last time I had a complete night's rest, or even a really good nap for that matter. I always sleep with one eye open, so to speak, because I always know that I am going to be needed by someone at some point during the night. Sometimes Monica gets up in the middle of the night and comes to me. Sometimes Ken isn't sleeping well and says, "Honey, are you awake?" But, most of the time I am up in the middle of the night because I am helping Megan by making sure she gets suctioned (if needed), medications administered, in and out catheterized as of late, and changing diapers.

Yesterday, Ken and I received a call from the Ronald McDonald House (RMH) saying they had a room for us to use. We went over and "moved in," washed a load of laundry, and rested for a bit - Ken wanted to "facebook" (the hospital's WIFI has it blocked) and I just sat in the chair with my feet up and then made the bed with the clean sheets we were given when we checked in. We made plans at that time that we would both come back in the evening and rest together so that we would be ready to face another day at the hospital since we had been sleeping at Megan's bedside for most of the week. At best, you get interrupted sleep at a hospital bedside.

When the new nurse came in at 7:30pm to be introduced, he was a MAN. Megan has never had a male nurse in the hospital before. I freaked to myself and after the nurse left the room I said to Ken, "Would you mind staying here tonight to make sure that our daughter is protected tonight - since she needs diapered and cathed and all." He said yes before I finished the question. It isn't that I don't trust other people. My daughter is just one of the most important people in my life and my protective motherly instinct got the better of me. It is better to be safe than sorry, right?

Anyway, soon after that, I told Ken I was tired and wanted to walk the 3 blocks to the RMH while it was still light outside. He said OK and that he and Megan would be fine. I got to the RMH about 8:00pm, used the restroom, took my medicine (I have been battling a cold, bronchitis, and never-ending coughing fits for about a month now. I have just been taking my medicine and going about my daily activities like there was nothing wrong.), and went directly to bed.

I slept, and slept, and slept, and slept. I woke around 8am and 9am when our parents called for an update about how Megan was doing - which I sounded totally asleep for and sent them to call Ken's phone. Then, I took my morning medicine and laid back down so that I could hopefully avoid the full-blown "coughing attacks" that I have been having as of late when it is medicine time. I fell back to sleep and slept, and slept, and slept some more.

I woke up about 1:30pm and called Ken to see how he and Megan were doing. He said they were doing fine and to rest as long as I needed. I went downstairs to the pantry and found some crackers and a granola bar and got something to drink and went back to bed.

Then, I remembered that today is Sunday. I began to think about Sunday being set aside in the Old Testament as a day of rest. So, I got my computer out and started looking for references in the Bible for information about how I could use my experience for His good. I found out that resting on the sabbath has a few important meanings. First, God rested on the seventh day after He finished His creation. Secondly, resting on the sabbath was a gift to the Israelites when they were freed from their slavery in Egypt. Thirdly, He sent his Son to die on the cross for us so that we can rest in Him here on earth as a recipient of that gift. And, lastly, that we may have Eternal Rest when our soul is separated from our body on this earth.

Although my earthly body still feels heavy laying in bed as I type this post, I am resting in His promise that He is with me every step of the way and my work is temporary. One day I will rest eternally with Him and my body won't have to try to "catch up" from all of the work it has been doing to care for my family members this spring.

I have found this night and day to be an extreme gift because I have yearned for a night of sleep like this for so long. I don't feel rushed right now to get to my next activity because I know that the rest of my family members are in good hands. It is now time for my afternoon medicine again. I think I am going to take it and go back to bed, so to speak, because, you know, I never got out of bed yet today.

Saturday, June 13, 2009

Want to be "In The Know"?

Original Post as it appeared on Saturday, June 13, 2009:

I am working on a special educational/tutorial post with pictures today explaining everything I "tweeted" just now. Click on the "follow me on twitter" at the bottom of my left side bar and start reading from the bottom of the page and up for the whole story and today's update on how Megan is doing. (No, it won't be graphic or gross. I promise.)

Updated Post as of Saturday, June 20, 2009.

Here are the tweets that I posted on Saturday morning regarding Megan's unfolding drama on Friday night, just before she had her tunneled central line replaced with the "temporary style" central line. They are listed here in the order I "tweeted" them in.
  • Megan is out of surgery now. We are just waiting for her to wake up so we can go into the recovery room and see her.


  • Megan came out of her central line surgery like a trooper. She has a new line which we are using for fluids and antibiotics. The bad news?



  • Just as they came to take her to surgery, the failed yet still fragile and functional GJ tube bit the dust. We started getting ready to...



  • ...transfer her to the bed to go to surgery and found this brown liquid all over her bed. Guess what it was? Drumroll please....



  • Her stomach contents. The face of the gastric port on her GJ tube totally came off. You should have seen the look on the nurse's face...



  • I said, "Got a new G-tube we can put in until we can get the GJ replaced.?" She said, "I don't know what to get." I said, "Don't you have...



  • "...a catheter with a balloon we can throw in to plug her stomach from falling all over the bed? I can change it. Is that what's wrong?"



  • You should have seen the relief in her face when I said that. She said, "I'll be right back." and came in with an actual G-tube.



  • I said, "Yeah, that'll work. I took the GJ out - she put the new G in (with a little mess) and Megan was whisked off to surgery.



  • The really bad news? It happened on a Friday evening at 6:45pm. The GJ tube won't be put back in until Monday when Interventional radiology



  • is back "in the office." This means Megan will have to get her nutrition intravenously. Her food went into the J port which goes into



  • ...her intestines. But, we can still give her medications. They went into the G port, which is her stomach. And, that is what we put in.



  • Why did I tweet all that? I could have just put it in a short blog post? I am making a pictoral blog of what happened so you can understand.



  • It may take me most of the day to finish. Getting all the photos ready and everything.


Now that you have taken the crash course All About G-tubes and All About GJ-tubes, you are ready to fully understand what happened last Friday (June 12, 2009) night just as the transport lady showed up to take Megan to surgery. I went to pick her up to place her on the transport cot and felt - Tweet #5.

This is what I found: An extension with a Gastric port attached to it - not attached to the GJ-tube itself.


Remember, the GJ tube is supposed to look like this.


When I took the Gastric port off of the extension, the GJ tube looked like this.


Then, just for the fun of it - I decided to show you what a GJ tube looks like after it has been in Megan's belly for about 6 months.


See how the balloon is no longer symmetrical? And the color of the tube after it has been washed in gastric juices? The tube part of it wasn't going to last much longer either.

Just for kicks, this is how long her GJ-tube looks. The sizes vary depending on the age and size of the person wearing the tube. Megan's is 32 centimeters long.


I'm sorry. Some of these pictures are a little gross. But, that's the worst it gets.
Now, You are "in the know."
The pictures are a little dark - sorry. I took them inside, with my cell phone, and no flash. By the way - This is the actual tube we put in that night. And, this is a picture of Megan's belly.


And, as I said in the "All About GJ-tubes" post, we waited until Monday at 3pm for her appointment for her button to be replaced in flouroscopy. The pictures of the button with the extensions attached are of her new tube placed on Monday. We were able to administer her medications over the weekend, but she had to receive IV fluids until Monday afternoon to supplement her feedings and keep her hydrated. Luckily, she still had her "temporary-style" central line in place. I can only imagine how many peripheral IV's she would have gone through on that much fluid for three days.