HomeAboutPopular PostsE-books Free Printables

Friday, July 31, 2009

You never know what you've got 'til...

IT'S ALL CLEAN! These two baskets represent the only 2 loads left to wash in our household.

Who needs to go shopping? FYI to all relatives - my children have enough to wear! They will not be naked this fall if they don't receive a single new clothing item. WOW! Did I just type that? It's finally true! YAY!

In fact, I wonder which (insert your favorite hand-me-down) store all this is going to end up at?

I'd make it a Trifecta Day** but then I'd have to strip all the beds and rewash our pajamas because none of us took a shower or got dressed today. But, hey, everything else is done! Maybe tomorrow - you're only a day two loads away.

**Trifecta Day! It means that when the kids (we all) go to bed tonight they will have (1) clean sheets on the bed and (2) clean jammies on their (3) clean bodies. This is a definition I got from my friend Pamm's blog - who says her sister coined the term. Isn't the concept simply delightful?

Note: My two-week search for the upstairs bedroom remote control has begun a MAJOR PURGING in our household. This is the first of a series of posts regarding our household PURGE. I just hope the remote shows up again SOON because it wasn't where I thought I would find it after I emptied the entire room out. I'm not going to tell you which room it was though. I don't want to embarrass my daughter.

Thursday, July 30, 2009

My Granny is Home!

Joan Brown Griffin, 76, passed from the arms of a loving family to the arms of her Loving Savior who will care for her for eternity at 8:56am on Thursday, July 30, 2009. Joan was the youngest of 8 children born to Justin and Maude (Devine) Williams on May 19, 1933, in Howard County. On January 10, 1960, she married Fred Brown, who preceded her in death.

Joan was employed at Delco Electronics, where she met Fred Brown. They worked side by side for many of her 30 years and were able to retire on the dame day. Her marriage to Fred Brown fulfilled her lifelong dream of being a wife and mother. They shared three daughters.

Joan gave her heart to the Lord and was a faithful servant throughout her life. She was a member of the Light and Life Free Methodist Church in Lakeland, Florida. Over the years, Joan and Fred spent many winters in Florida enjoying their days with best friends Merle and Joyce Griffin. Following the deaths of their spouses, Joan and Merle Griffin married on April 5, 2003. Merle also preceded her in death.

Joan spent her life as a caregiver, hosting family and friends, praying and sending cards to those who needed the support of a prayer warrior, and taking care of Fred Brown who suffered from an extended illness at the end of his life. Joan’s mission in life was to be a servant and to take care of others. My Granny will be greatly missed and her life joyously celebrated.

Tuesday, July 28, 2009

Rough week...

We started the weekend getting ready for Megan's sleep study knowing that we may not see my Granny ever again. The four of us went to see her. Megan waved to Granny. It was a very touching moment.

Then, we packed our van and went to Indianapolis for the sleep study. Megan was still fussing quite a bit. We gave her some extra pain medication for the trip so that it would not be unbearable. We checked into our hotel and got ready for her appointment. We had to pack all of her medications, breathing treatments, diapering supplies, etc. (You would think we have about 5 kids if you saw how full our van was.)

I took Megan to the sleep study. I took pictures of her wearing her gear, the mom bed, etc. I was going to write this great post about sleep studies and what you go through during the event. It looked for a while that Megan was going to go to sleep. But, she got agitated. And, more agitated. Annnnd, MORE AGITATED. She NEVER went to sleep. When the time was over in the morning, I was frustrated. I don't want Megan to feel like we are asking too much of her. I have watched my Granny say "enough is enough" most recently.

My Grandpa Brown (Granny's husband) was a 30+ year kidney transplant survivor. He lived every day of his life remembering the gift that he was given, not only from Christ but his brother as well. He asked my parents to get married a month sooner in 1972 because he did not know if he would survive. Not only did I enjoy a wonderful relationship with him and granny, I have pictures of them holding both of my children. He knew what a gift just being able to live every day was. I want my family, and especially Megan, to feel that way too. I wasn't supposed to know my Grandpa. But, God granted us more time to know him. He believed in fighting for each moment to improve life until there were no moments left.

I am torn. While I know that Megan's condition is eventually terminal, I want her to view each day as a gift and not too much to ask of her. I don't want her to think that living is just too hard. It's a fine balance, and I am having a really rough time with my feelings this week.

A couple weeks ago, someone asked me how we deal with Megan's hospitalizations and knowing her physical limitation looming ahead of us every time. I told them, "we prepare for the worst, and then hope for the best." I didn't know how else to describe what we go through.

A few weeks ago I found a message someone left on my post regarding Megan's diagnosis. This statement has stuck with me. It says what I was feeling and what I want to continue living. "First, you have to do what you have to do to prepare for death, you pursue health as well as you can without letting it take over your life, and then you live as though you are going to live." This is so hard. And, it is hitting me hard as I say my earthly goodbye to my Granny any moment.

Friday, July 24, 2009

I don't know...

...why my daughter has been so uncomfortable the last two days and needing more doses of her pain medication.

...what her sleep study tomorrow night will be like - if she will sleep at all with all the EEG wires, O2 and CO2 monitors, chest belt (kind of like when you're measuring contractions - only measures strength of inhale/exhale), and toe probes.

...what type of information we will find out Sunday morning about the results or if we will have to wait until her pulmonologist's appointment on August 7th.

...if I will even want to know when they tell us how she is doing.

...if my grandmother will still be here when we return from Indianapolis Sunday evening, or

...if we all just said goodbye to her for the last time.

But, I do know that they are both ready to meet the Lord who loves and made them however soon or far into the future it may be.


It's the last day of the work week -OK, I'm on the job 24/7- but I have only one appointment scheduled at 4pm today, I slept in, and I got some new anti-coughing medicine yesterday. I haven't had a coughing fit since I got it. Fingers crossed - my coughing days could actually be limited?

This is what the drug information site says about my condition. "Chronic dry cough can be annoying, and even painful. In some cases continuous non-productive cough has led to bruising of chest muscles and separation of ribs. The slightest activities will trigger coughing spells, including talking, eating, sitting up, exposure to cold air and dust, and laughing."

Yes, all of this is true. I have been taking narcotic pain relievers to help with this for the last month and was almost out. So, I called my doctor Thursday and said, "I am almost out of medicine, I am still coughing, and I can't wait until my appointment on the 31st." They got me in that day.

In addition to another round of steroids, a fourth bottle of the best cough syrup known to medicine, this new "perle" I got "relieves cough by acting directly on the lungs and the breathing by numbing the throat and lungs, making the cough reflex less active. It may also act on the cough center in the brain. It is a non-opioid, non-narcotic which, if taken as directed, should not cause drowsiness."

My doctor gave me a thirty day supply of this medicine. Hopefully, within another 30 days I will no longer be coughing.

Wednesday, July 22, 2009

The Art of Living

I have invited my Mom to share a part of her life that has been very difficult and yet rewarding at the same time. She is in the midst of honoring her mother's ultimate wishes, which has proven to be quite a task in these last few months, weeks, and finally days. Please pray for my mother and grandmother as my grandmother awaits her Heavenly invitation and my mother enjoys the final moments of their relationship here on earth. These are my mom's reflections:

Over the past nine days, I have been sitting at the bedside of my mother who is living the final days of her life. As I watch and pray, several things have stood out to me.

Developing and maintaining a relationship with God our Creator, Jesus our Savior and Lord, and the Holy Spirit our constant guide and helper, is the most important relationship we can cultivate.

There is no substitute for a team of loving, caring people at life’s end. Whether they are close family members or health care workers, tenderness and a willingness to tend to your physical, emotional, and spiritual needs cannot be overrated.

Time appears to little children as something that takes “forever” to tick by. As children turn into adults, time begins to pass very quickly. As people approach midlife, time flies by so quickly it appears that the “things” we believe we must accomplish may not come to fruition. Finally, at life’s end, time appears to stand still. It becomes our enemy because we so want to celebrate the beginning of new life in heaven with Jesus and our loved ones who have gone on before us.

All people need other people. There is really no such thing as a “loner.” God made us to serve and support one another. The love, care, and prayers of others is of utmost importance during difficult times. The relationships we cultivate and the people we lovingly serve throughout our lives become the legacy we leave behind.

Nothing takes the place of heart-felt laughter during trying times in life. It is so important not to take oneself or those around us too seriously. A guffaw coming from deep in the belly is very healing to a hurting heart.

We come into and go out of the world with no earthly treasures. All material possessions that we store up over our lifetime have no meaning or worth and the end of our lives. Those things we have held so dearly are not necessarily held so closely to those we are leaving behind. In fact, those stored up possessions can become quite a nuisance to family and friends.

The direction the toilet paper is placed on the roller, putting the cap on the toothpaste, and the manner in which the towels and washcloths are folded really doesn’t matter. Allowing the small things to frustrate us steals away our joy. Listening to the birds early in the morning, feeling the soft breeze blow across our faces, noticing the ladybug on the rosebush, and stealing a long look at the face of a sleeping baby brings peace, comfort, and joy to our souls.

Being able to remember these simple thoughts when life once again speeds up is my personal challenge. I so want to leave a legacy of love and care for others. This, for me, is the act of living a successful life.

Monday, July 20, 2009

Not Me! My child! Monday

Ok! So, we've established that we as parents are not perfect and have celebrated that fact thus far. However, today's special edition of Not Me! Monday is celebrating the fact that our children are not perfect either, no matter how cute we dress them or how well they seem to behave in public. Click on the banner below to read hundreds of other mom's stories about what their children have not done.

I have not told my child so many times which drawer to put her clothes into (and not the floor) that she did this:

"Underwear" and...

Just in case you were wondering, yes they were labeled correctly on my dresser.

It is also no secret that in our household we love candy. Yes, it rubs off on our kids too. Just this morning I sent my dear husband to the store to refill a prescription (and redeem the $20 coupon we got for being frequent flyer pharmacy customers before it expires on us) and pick up some gummies (I love the bulk section too!). They got back from the store and my dear daughter did not say "Here's your bag, Mommy. I got one too and so did Daddy. Now, none of us have to share. Isn't that great?"

See what I did not do? I did not teach her that if you don't want to share yours, all you have to do is make sure your child has one of their own too! WOW! Didn't realize it was that obvious until today.

Do you have a story to share about how perfect your children are not? Leave it in a comment. You don't have to identify yourself and we can all have a ROFL Monday experience. (By the way, for anyway doesn't know ROFL = Rolling On Floor Laughing). Don't we all deserve that kind of Monday?

Saturday, July 18, 2009

Fri-Day of Firsts!

This is yesterday's post that didn't happen. (Sorry)

To start, "Fri-day" was Megan's first day home from the hospital. She slept in her spot on the couch most of the day - enough that I wondered if she would sleep at all last night. However, she did and was awake most of the day today.

Next, remember this post? Well, if you think about it (if you like math at all), you might figure that Fri-day was also the first day Monica could do this:

She wanted to wear these "dangling diamond earrings" (cough. cough.)

What she doesn't know can't hurt her at this point, right? We decided that these earrings could only be worn on special occasions (The first change is definitely a special occasion) and not to bed. So, just before bed, we changed to these, less dangly ones:

They were the reason she went through with the piercing anyway. That's right! These earrings are "Hannah" style. (And, not available as magnets or clip-ons.) All Hannah's accessories feature guitars - although Monica is wearing pink in this picture, the earrings also came in blue and yellow. WOW!

Now, if you'll excuse us, it's time to change to the blue ones.

I am sooo starting to love being the mother of a growing girly girl.

Thursday, July 16, 2009

Friday it is! So Thankful!

I don't think I am going to jinx anything by announcing that the doctors are getting Megan's walking papers ready for tomorrow morning. She will be taking her full strength feeding schedule today and as long as everything goes well, we are "outta here." I am so thankful that:

1. Megan is laughing in her sleep as I type this update.

2. This hospital stay was relatively uneventful.

3. We were only here for a week.

4. We got to stay in our home town.

5. Megan has gotten through the whole week of being on IV fluids with the use of 2 peripheral IV's. And, both of them were placed on the first "poke." Now, that is a truly remarkable answer to prayer.

6. This Thankful Thursdays theme started by Lisa at Welcome to the Nut House. You can visit her blog and also view others who have linked their posts of thankfulness today.

Is there anything you are thankful for? Leave a comment - or - link with everyone else if you have a blog too.

Tuesday, July 14, 2009

Megan Update

It appears that Megan just has a case of the stomach flu. She was puking and is now in the #2 stage. I am glad that it appears that it is nothing more. However, she did need to be in the hospital because she has not been able to keep anything in her stomach. She needed the IV fluids to keep hydrated and from getting her electrolytes out of balance.

I just decided to throw a couple of pictures of Megan in this post because she is so beautiful. Her liver tests that were a little elevated have been lowering over the last few days. And, the doctors here called Dr. K in Indianapolis to make sure that they were on the right track with Megan's treatment plan.

If Megan starts tolerating her feedings tonight and tomorrow, we may be home before Friday. If she does not, then we may have to go to Indianapolis to discuss alternate feeding methods until we can feed her through her GJ-tube again. Right now, she looks really good, and I am anticipating coming home to resume our normal schedule - or at least as normal as possible.

Monday, July 13, 2009

Not Me, Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I did not pack for Megan's hospitalization on Friday using the "going home" bags from the last hospital stay, 13 days ago.

I do not think that this is a well-balanced meal.

And, I have not also been drinking the pictured beverage more often this week. I quit drinking that beverage because it has so much sugar and everything. If you have too many in a day, it makes you fat. So, I switched to Diet Coke. All this stress has not made my behavior regress the slightest bit.

Remember these goodies?

They are sooo not coming in very handy this week - in the hospital here at home and all.

Monica and I have not had strawberry shortcake for breakfast more than once this week. (Ice cream is the same as having a glass of milk, right?) There is no evidence available for this one because, you know, it vanished.

Finally, when my friend called me earlier this week and I was going somewhere in the car, I did not call her and say, "It isn't safe to text and drive, so I decided to call you instead."

I have posted several Not Me! Mondays these last couple of months just for the fun of it. It cheers me up. Now, I am asking my readers - to cheer me up some more. Is there anything you did not do that you are willing to share with me?
Leave your message in my comments. You don't even have to identify yourself - I have anonymous comments enabled.

By the way, next week's Not Me! Monday is going to have a different focus. Stay tuned as we'll take a one-week break from Not Me! Monday and instead do a Not My Child! Monday. We'll bite the bullet and share the things that there is no way our children were caught doing!

Saturday, July 11, 2009

Nothing monumental...

...to report yet. All of Megan's blood tests regarding her organ functions are OK. Her urinalysis was good. Her white blood cell count is double what it should be. I guess this means that she is fighting "something." We do not have her blood culture results to tell us if she has a bacteria growing there yet.

Megan still has no fever. Good. Her oxygenation levels have returned to normal. Good. The medication to stop her vomiting seems to be working. Good. She has not vomited any medications in her g-tube since 9pm last night. Good. She tolerated a small amount of pedialyte in her j-tube last night. Good.

They have started small amounts of her formula in her j-tube today. They are giving her about an ounce an hour and will increase it by an ounce every four hours as long as she keeps tolerating it. She is still taking the anti-vomiting medication. After she gets back up to her regular formula dosage, we will start weaning that to see if she is able to tolerate everything then.

In the meantime, we wait for the cultures to come back and see if that points to the reason why her white blood cell count is elevated. She looks good and is making eye contact and responsive to us. This is good because when she is really sick - she doesn't do that.

That's all for now. Thank you everyone for praying. Boy, do we need it.

Friday, July 10, 2009

Would you believe...

...that Megan is in the hospital again? This has developed so quickly. She was fine until about 8:00pm last night. She started vomiting. That was the only symptom. No fever. She seemed to settle down about midnight and I put her to bed. When I woke to give her 4:00am medicine and catheterize her, she had still been vomiting. Only this time, it didn't look like her normal vomit. I cleaned her up and stayed up with her until this morning.

Megan was already scheduled to see her pediatrician this morning for her previous hospital discharge follow-up visit. So, Ken took her to her appointment. Megan was continuing to vomit for the doctor. The doctor did not like her vomiting, noticed that her weight was lessened again (even though they increased her feeding and she has been tolerating it well for the past two weeks), and decided that Megan needed to be admitted to the hospital.

The doctor ordered blood cultures, urine cultures, a MRSA swab test, complete metabolic panel, liver enzymes, kidney, pancreatic, and spleen functions, an emesis (vomit) test, and x-rays of her abdomen.

All we know right now is that Megan's vomit was positive for blood (We do not know from where at this point. That is why they are looking at all of the tests mentioned). They are giving her medication to try to help stop the vomiting and IV fluids because she is not able to tolerate anything through her g-tube. The good news at this point is that they were able to get a peripheral IV placed and the blood drawn in only one poke (since the PICC line IV was removed on Tuesday of this week). Pray that it stays functional for as long as we need it. We won't put another PICC line in unless the test results warrant the usage of an IV on a long term basis.

Now, we wait and see what we find out and develop a plan depending on the information we get. At best, she may have broken some capillaries in her GI tract from all the vomiting. At worst, they find that something isn't functioning at its best. They may need to do a scope of her GI and intestinal tract. If that is the case we will be going back to Indianapolis. The doctors at this hospital will not perform any surgeries or procedures on Megan. For the time being, we are still in South Bend. I will post more information as I learn of it.

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.

Thursday, July 9, 2009

Sunflowers and Roses

Isn't this a beautiful flower?

It came with this beautiful flower.

In this bouquet.

What a way to start our day! Yellow is Megan's favorite color. See her trying to touch the bouquet? What a nice surprise blessing! Thank you, Cathy!

This message is a part of Thankful Thursdays started by Lisa at Welcome to the Nut House. You can visit her blog and also view others who have linked their posts of thankfulness today.

Wednesday, July 8, 2009

To say thank you..

...is not enough. To everyone who helped make this possible...

...we are truly grateful.

And, we can see our basement floor again.

Many thanks also for the person who mowed our lawn last week when we returned home. Whomever you are, we were thrilled to come home to that wonderful surprise.

And, lastly, but not least, thank you everyone for all the dinners and gifts we have received in the past few months. We feel honored and so blessed by your giving.

Saturday, July 4, 2009

Saturday in the park...

I wish it was I'm glad it is the 4th of July!
We're at my parents' trailer and having so much fun!

Playing at the park...

Riding bikes...



Playing games...

Air Jamming...

Did someone forget to give this girl her medicine?



Could I please have one of those hot dogs?

Reading American literature...(American what?)...

And, my favorite, Smiling.