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Wednesday, September 30, 2009


Last Night...


Our Hospital Home

We have been living with Megan in the hospital since September 1, 2009. This is a peek into what it is like in our room. It is the first half of the "home base" that we have developed our lives around.

The first picture is of Megan sleeping soundly sporting her hospital's logo.

And now, Our front door - with the yellow isolation caution sign and Monica's artwork.

This is Megan's room as you enter the front door. You can see her lovely supplies in the front, the open door to our private restroom (YEA!), the window to the back of the room, and Ken sitting on his couch/bed.

If you turn to the immediate right from the door, you see my roll away bed and chair. There is a lovely cabinet above it for personal items.

Then, Megan's vest machine (breathing treatment) and bed are to the left of my area. She's my sleeping beauty.

This picture shows how these two spaces look together from the other side of Megan's bed - in front of the window. She's still sleeping. (Also pictured - the trash can and the cooling blanket machine for when Megan has a fever)

Megan's IV and feeding machines are to the left of her bed. The cabinet above the couch area in front of the window is also pictured here.

Ken sleeps on the couch at night - away from me on the other side of Megan - kind of like we're in an old TV show, right? He's reading my blog.

The cabinet for Megan's clothing and our snacks is along the wall at the end of the couch right next to the bathroom.

Then, that brings you back to the medical supplies table in front of the main entrance to our new home.

And, just for reading this far, I have inserted this picture of Megan during a few of her waking moments this evening.

It is our joy to live anywhere as long as we can be together.

Monday, September 28, 2009

Weekend Recap

  • We all slept in. It was great to sleep.
  • Family visits - thanks for bringing Diet Coke and snacks!
  • Nurses brought Ken a birthday card, cake, and dinner coupons!
  • We went to a restaurant to have Ken's birthday dinner and my sister volunteered to stay with Megan so I wouldn't worry (Thanks DD).
  • Megan's fever re-appeared. She was more restless.
  • Ken and I woke early at Megan's bedside.
  • I visited the Indy Emergency Room regarding my coughing issues - again!
  • We ate restaurant leftovers for lunch - YUM!
  • Filled my new prescriptions at Meijer and bought some food for this week - You just can't eat cafeteria or McDonald's all the time.
  • Megan's fever kept showing itself.
  • Ken stayed with Megan and I went to RMH with Monica at dinner time. She still couldn't go to sleep early.
  • Monica and I woke late and rushed to the hospital for school this morning.
  • Megan was sleeping when I got to the hospital. She is also still sleeping as I type this.
  • Monica was quiet today and we watched cartoons and wrote in her journal for her counselor while Megan slept.
  • I stayed in my jammies all day long.
  • Megan's fever is still not gone.
  • Ken is baking DiGiorno pizzas as I type this and I actually feel like eating - How cool is that?
I was going to write cool posts about what its like to live in the hospital and Ronald McDonald House - but the camera may have been left at the Children's Museum friday. Please pray that their lost and found calls us to tell us they found it soon.

Friday, September 25, 2009

New Nurse

Photo Friday

Meggie this morning.

Sisterly love.

Bunny ears and smiles.

Thursday, September 24, 2009

Writer's block

I don't know what to say anymore.

We are still out of our "element" - whatever it was anyway.

I don't want to talk on the phone.

I don't want the phone to ring.

I don't want to be asked how I am, how Megan is, how anyone is.

This sucks and we all feel it. I have run out of nice ways to say it.

The longer we are here, the more it plays with your mind - with all of our minds.

We have had kids get better, be discharged, come back, and pass away in front of our eyes and we are still here.

But part of me does not want to speed things up because then I won't be able look into my daughter's eyes anymore and I'll have to try to figure out what to do for the rest of my life.

If I could be any animal in the world, I would be a turtle. Not because its my favorite animal, but because they have a place to withdraw to and shut everything else out.

Tomorrow I may feel different. I hope so. But today, this is me.

Tuesday, September 22, 2009

Favorite things

I had a favorite doll when I was a small child. It was the kind (back in 1980 or so) that was just like a real baby. I took that doll everywhere and it was my baby.

Then, I took it to the neighbor's house to play and accidentally forgot it. When we went back for it a while later, their mean doberman had gotten a hold of it. All we got back was a small part of the doll.

I cried and cried. And, cried and cried. My parents never shopped on Sundays. But, that day they went out and found my doll again. I have a picture of me and that doll. It was a Christmas present. I still have that doll in my chest of treasured childhood belongings. (Although neither of them are here at the hospital now.)

Last night we had a similar problem. Monica received a stuffed animal as a gift this week. She has been carrying it around everywhere. She loved it. She left it in a public place, either at the Ronald McDonald House or the hospital. When we found out it was not with Monica, it was no place to be found. We looked everywhere.

Monica cried herself to sleep last night. Tonight, my mom and Ken searched a couple bookstores and the mall for a replacement stuffed animal. They finally found a place that was selling them for half price. And, they had two of the exact same animals. They got 2. An heir and a spare. Was the Lord looking out for Monica or what?

Monday, September 21, 2009

Megan and some other friends

Megan seems to be responding to all the new changes (antibiotics, pain medications, fluid levels, and nutritional formula) we have made this last week. She slept pretty well two of the last three nights even though we have had some snags during the day with her comfort level.

We are trying to take advantage of all the time we have with her awake and comfortable. We are also thankful for the times she is resting well.

There are other families on our unit with similar circumstances that have immediate prayer needs as well. Please keep them in mind as you say your prayers for our family and Megan. We have been speaking to these families and our hearts also break for their situations because we have the knowledge of how it feels to us. I don't know if that made sense but please just remember other families who are also on the verge of saying their earthly goodbyes to their children.

We are also reminded each day just how fragile the lives of our special needs children are. Serious health crises can arise so quickly and catch the most vigilant parents off guard when they occur. This is one of the reasons we are so thankful for all of the quality time we get with Megan. We know that at any moment (or not) we could also be faced with another serious, life-altering challenge, which is another reason we so appreciate everyone who is praying and sending us their support.

Saturday, September 19, 2009

Sometimes you just HAVE to laugh

Thursday evening my mom took Monica and I home (for only 24 hours - the longest 24 hours of my existence, it seemed) to take care of some business that couldn't wait.

On our way back to Indy we decided to stop at the teacher's store to look for some 3rd grade testing standards to help make sure Monica is able to pass the all-important ISTEP test this spring since we are schooling her at the hospital right now. So, I got my handy dandy internet phone out and googled "teacher's delight kokomo indiana" (that was the name of the store back when we knew Kokomo had one but couldn't remember where it was) The first search result came up with the address (no phone number).

My mom grew up in Kokomo but it has changed quite a bit in the 35 years since she lived there. We recognize familiar landmarks and know how to get to where we want, mostly along the US 31 highway that everyone dreads passing through Kokomo on (thousands of stoplights).

Anyway, we realized we had gone too far on the highway and took another street to head back where we came from. As we happened to drive past the funeral home and restaurant where we spent our final moments with Granny and our other relatives, my mom says "Uh. Oh. We gotta stop." I'm like, "We do?" She says, "Yeah, the police want me to pull over. Find my stuff in the glove box."

So I look behind us and say to Monica, "Do not say a word. Ever." She says, "OK" with a worried look on her face. (Because I have never been stopped by the police.) Then I say to my mom, "How fast were you going?" I didn't feel as if my life was in jeopardy that time. We were just looking to find our way through town - to the road we needed.

"I have no idea," she answered.

So, we waited for the policeman to come to the window.
He says, "Hi ma'am. Did you know you were going 42 in a 30?"
My mom, "I was? Oh, I'm sooo sorry sir." (Her usual emotion of crying hysterically not inserted here)

Policeman, "Where are you going?"
My mom, "We were looking for a store to buy some books for my granddaughter to practice for the ISTEP test this spring because her sister is dying in Indy and we have to get to her. This is their mother right here next to me."

Policeman, "Are you from around here?"
My mom, "No we're from Mishawaka."
Policeman, "OK? Can I see your license and registration please?"

We handed him her license, three years worth of registrations (because I couldn't find the date on any of them), and the insurance card. The policeman looks at my mom in a funny way.

My mom says, "This is my mom's car. She just passed away."
Policeman, "Where did you say you were going?"
My mom, "To Indy, my granddaughter is there...(realizing what she is saying and feeling the embarrassment in my face from the back of her head) Sir, you really don't want to know all this. Can you just tell me how to get to this address/store so we can get back to our child?"

The policeman handed back the information, offered directions, and said, "Please just drive slower ma'am."

"OK, thanks!" And we drove away laughing (what else could you do?) at the fact that we told such a wild sob story to the policeman, it was totally true, and it worked. Thank you so much, Jesus!

We finally did find the teacher's store, realized it was in the Mall on the highway the whole time (Why do they have to give side road addresses to these businesses?) and that the name of it is not, in fact, "Teacher's Delight" any more. It's "The Pointy Pencil."

We did find the supplies we needed, took a quick detour by Granny and Grandpa's grave site, and finally found our way back to Indy.

What a trip.

Thursday, September 17, 2009

Fever and restlessness

Update: Friday, September 18, 2008
Thankfully, Megan finally slept about 10 hours last night. Her fever has also kept to 100 degrees and lower using all of the available techniques. She was less fidgety overall and took a couple one hour naps.

Megan has been having very high fevers on and off during the nights early in the week. Since Wednesday afternoon, fevers have been non-stop. Tylenol, Ibuprofen, the cooling blanket, and ice packs have kept it between 100 and 102 degrees. Megan has also been very restless the past 24 hours. She has only slept small bits of time last night and today.

We thought we had her pain under control (and evidently verbalized it too soon) just before her fever started constantly spiking yesterday. The urinary tract infection she was diagnosed with in the beginning of the week is improving.

So, we are looking for other reasons for the fever. They started Megan on anitbiotics today for a possible pneumonia. They have seen small changes in her chest x-ray that point to either problems with her inability to take deep enough breaths to get all the sacs inside her lungs to properly inflate or other infiltrates (which could be bacteria or aspiration) could be present.

We were told at our meeting on Tuesday that Megan could have up to weeks if she is experiencing respiratory failure with no other infections making it worse. If infections infiltrate, she could have less time with us. Right now we are not sure which is happening. We are praying for the "path of least discomfort" for Megan.

Whatever God's will is for Megan we ask Him to have mercy on her and that these symptoms will be contained so that we may spend quality time with her.

Wednesday, September 16, 2009

What we need...

So, my sister asked us what we needed tonight. I asked her how our youngest member of the family was - our baby. She is caring for him until we get back home. We just stared at the Skype and, of course, went goo goo ga ga over our Kisses. And it was nice to chat face-to-face with my sister too. (Isn't this a great picture. I took a still shot of the Skype while we talked.) I might let Kisses kiss me when we get home. Hopefully, he will remember us.

We are just living day by day - totally oblivious to the outside world. Let it go around us. That's OK. We'll rejoin when we can.

Tuesday, September 15, 2009

Meeting Notes

I didn't want the meeting. I didn't want to go to the meeting. It was a rough morning before the meeting.  I appreciated everyone's thoughts and prayers for us so much.

In the last couple of weeks the doctors (seems like every doctor in this hospital) told us Megan's respiratory system is failing. We had to see, admit, and say out loud it was so. It seemed that they just wanted us to go home and finish on our own.

My mom has written these notes regarding our experience today which included tears before, during, and after - and not just by the family members present.

"Quick bullet points from the meeting:
-Meg's time with us is very limited...weeks, rather than months.
-Because Meg requires an excessive amount of care, she will stay in Indy until or unless her parents decide to take her home.
-Ken and Lori feel very comfortable spending quality parenting time with Meg in Indy rather than having to be her medical caretakers at home.
- Hospice will take on psycho-social support for the family until or unless other support is needed.
-Child psychologists are here and will be supporting Monica while the family is in Indy.
-Our family has been labeled "fully functional!" We will take this label with us for as long as we live...we ARE normal people...going through very difficult times...and in need of all your good thoughts and prayer support."

 I, myself, am still deciding how I feel about the whole situation. Maybe it's just the pessimist in me that can't believe that this really did take place. I want to believe it when I see it and that these same conversations don't creep back into discussion before we are ready, if we ever are.

We love you all and thank you again. We so appreciate you!

Big Meeting

We have our "case conference" with all of Megan's doctors, the hospice here in Indy, and the hospice from South Bend today at noon. We are being asked to consider taking her home when she stabilizes. I don't want to imagine having to care for her with the new medical interventions added from this stay to the last five months worth of care she already had. We were so overwhelmed and tired. (Not that I wouldn't, if it came to it.) But, we want to enjoy our time left without having to worry about what time it is for medications, feedings, medical procedures, etc.

I feel like I have asked all of the questions I have already regarding Megan's continual decline. Last week when the doctor on service had every other doctor consulted tell us there was no hope of giving our daughter any quality of life, it felt like they would help us with anything we asked for. So, I asked them all questions related to their specialty. When I ran out of questions for each person individually last week, I forgot to ask "What have I not thought to ask that you need to tell me?" (Not that they would offer any information that wasn't a direct question.)

It seems that even with the slightest in change of Megan's medical status, we have to be prepared for something totally different than what we were told initially.

This has left us feeling confused, deceived, and lonely. The doctors in South Bend do not have enough knowledge of Megan's health status. Whenever we bring Megan to them, they always consult the doctors in Indy, if not just place her in an ambulance en route to Indy.  I want the doctors that have helped us these past 10 years to be the ones who help us the last few days, weeks, or whatever time we have left.

I feel like everything that Megan has been a part of has been taken away. I don't want to feel abandoned by her doctors so close to the finish line. I don't want to have to transport Megan back and forth. She can't handle that type of stress. And, they may be changing the way we get all of her medicine, medical equipment, and other supplies that have already been set up for so many years.

I am very nervous about this meeting. I don't want to make any more decisions. I just want everyone to help us while we are doing the hardest thing anyone could possibly do - say goodbye to our daughter.

Saturday, September 12, 2009


Megan's vital signs have remained constant these past few days. But, I know in the back of my head that if I close my eyes, I might not see her here with me again.

I know she will be fine. I don't have to worry about her. She will be better than she ever has been.

I worry about our family. 
How will we be the same?
How will we be different?
Will we hurt as long as we are here on earth?

It is a comfort to know that in the distant future we will be together again. I try to focus on that.

But we are still humans with earthly feelings that well up inside us.
I haven't cried for a few days. But I feel it coming again.

Friday, September 11, 2009


Take a deep breath. Now exhale.

This simple act is something we take for granted each and every day.

For Megan, this has become so hard. Her entire body's energy is focused on supporting just this one activity. We are so very thankful for our daughter's every breath.

This Fragile Breath (Todd Agnew lyrics)
I searched the world for a song that I could sing
Praise to my King A gift that I could bring
But no music I found could compare to you
Not one could do Justice to your glory
What are my songs compared to yours

You speak with thunder and lightning
Your voice shakes the mountains
The foundations of the earth
All I can offer is this fragile breath
With each one I'll praise You
With each one I'll praise You more

I searched the world for a poem I could read
A rhyme that would bring Glory to my King
But no writing I found was worthy of
This God high above All other gods
What are my words compared to yours

You speak with thunder and lightning
Your voice shakes the mountains
The foundations of the earth
All I can offer is this fragile breath
With each one I'll praise You
With each one I'll praise You more

Speak to me, speak to me please
Won't You speak to me

Wednesday, September 9, 2009

Maybe not now...but soon

We are waiting. We know what is coming around the corner in the near future. And, we are ready. In the meantime, we are trying to make plans about whether we should stay here, go home, or seek other placement options. 

It seems that Megan has been given relief from the virus she was fighting. The non-invasive types of support we chose to help her has gotten her through this time. She is not struggling as she was. But she is not the same as even a couple of weeks ago either.

We are loving her, caring for her, and enjoying all of our moments with Megan. If the Lord tarries, we may come home next week and be responsible for all the new changes. We have a meeting scheduled for Monday or Tuesday to discuss our treatment and/or placement options for Megan since she seems to have stabilized, although we are still working on finding the right dosages of her pain medications.

Monday, September 7, 2009

Happy Birthday, Dad!

Well, today is my Dad's birthday. Is there a better present than seeing your granddaughter able to rest and relax for the first time in months? Granted, it has taken quite a cocktail of interventions to make it possible.

Ken and I were very glad to see the restful state that Megan has been able to achieve through the wisdom of the developmental doctors, the ICU doctors, the hospice nurses, and we can't forget the Hands of our Father who gives us gifts even in the midst of struggles.

This was our gift. Rare. Treasured. Priceless.

Yes, this was our Megan this morning. She has a nasal "trumpet" in her left nostril that goes to the back of her throat to keep her airway from collapsing on her, a nasal canula for oxygen support, tape to tape the tape to (did you get that?) in order to save her skin from multiple tape removals, BRIGHT EYES, AND A BIG SMILE!  
James 1:17 - Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. (NIV)

(By the way, I was able to brush her hair today too. Only after this picture was taken.)

Sunday, September 6, 2009

How God must've felt

I am a dreamer. I think in my sleep. I cry in my sleep. I have written term papers in my sleep. And, I have brainstormed solutions to problems in my sleep.

Last night was no different. Only I was given a different view or focus of my family's current situation as we watch Megan's tired body struggle to catch her breath as her chest and airway muscles are constantly in motion and we are trying to find the right combination of medications to relieve any suffering she endures.

Another bit of information I think is important for you to know is that I have never viewed the movie "The Passion of the Christ." We were gifted the movie a couple of years ago but I have never been able to bring myself to watch it. I know that the many people I have talked to about it say it is very powerful and followers of Christ are given an entirely new perspective on what exactly Jesus did for us when he died on the cross.

John 3:16 - For God so loved the world that he gave his only begotten son, that whoever believes in Him should not perish but have eternal life.
(from the version of childhood recollection)

That promise is what we hold onto to comfort us and know that our daughter is not going to be gone forever. She is getting a perfect, pain free body where she can eat, sing, dance, walk, play, praise Jesus, and pray for the rest of us here until we meet again.

With that said, I have told a few people lately that "I wish that Megan and I did not have to go through this process. Why couldn't she just fall asleep and wake up in heaven? I don't want to watch this."

Early this morning it came to me in true "Job fashion" (character full of suffering in the Old Testament)- a question. How must God have felt to watch His Son be tortured, beaten, and hung on a cross knowing that he was not going to a place of happiness, complete rest, and fellowship?

Jesus took our punishment for those few days until He Rose Again so that we wouldn't have to endure it for eternity. And, let me tell you, my friends, this - that feels like hell to us right now - is the closest we ever want to get. And, God knows how I feel exactly (actually, He knows worse).

Friday, September 4, 2009

Finding some roses along the thorny patch

Megan is resting again now. She had a good day overall. She made eye contact with us quite a few times when people were talking to her. There were only a few times that we thought she was having pain - mostly during the peaks of her fever.

We formally admitted her to the hospice service this morning. She had a new PICC line (more permanent IV) placed this morning so that we will not have to poke her to draw blood if needed or replace IV's gone bad. (Although she was upset with the process of the procedure and voiced her opinion on the fact that she was getting "messed with," everything went well.) This is good because they got it in before the three day weekend and I certainly did not want her to turn into a pin cushion again.

They are using the IV for more continuous control of her pain medication and the medication is also absorbed into her body instead of being digested and processed like the g-tube pain medications she has been taking at home. They usually took about 30-40 minutes to kick in once they were administered.

We are still making sure she gets all her medications and feedings as we were keeping for our schedule at home. While we expect her bodily condition to worsen, we do not know how long we will be here with her. We are taking advantage of the moments of alertness we have with her, comforting her when she is fussing, and doing our best to be positive in her presence.

"The Rose"

Some say love, it is a river
that drowns the tender reed.
Some say love, it is a razor
that leaves your soul to bleed.
Some say love, it is a hunger,
an endless aching need.
I say love, it is a flower,
and you its only seed.

It's the heart afraid of breaking
that never learns to dance.
It's the dream afraid of waking
that never takes the chance.
It's the one who won't be taken,
who cannot seem to give,
and the soul afraid of dyin'
that never learns to live.

When the night has been too lonely
and the road has been to long,
and you think that love is only
for the lucky and the strong,
just remember in the winter
far beneath the bitter snows
lies the seed that with the Son's love
in the spring becomes the rose.

Thursday, September 3, 2009

Sometimes it is about what's on the other side.

Megan had a really rough night last night. After last night's post about our plans for today, everything changed. Megan's respiratory status became unstable. She got a fever, her respirations became very rapid, and she LABORED heavily.

We had to call in the ICU doctors for ideas to give Megan the additional support she needed to make sure that she was comfortable - and we told them we wanted everything she needed at least until our families could get to us.

Today we collectively decided with the doctors that the MRI would have to wait until the respiratory symptoms subside. Then we talked to the hospice people here at Riley. We told them we were still on the fence about what we wanted regarding Megan's condition but that we wanted her to be comfortable.

Then we talked to the pulmonologist's team on duty. They have seen Megan, her x-rays, her sleep study (turns out they saw what they needed without her sleeping), and the reports from last night.

They do think Megan has a virus. It seems this virus has weakened Megan's system to its breaking point. Megan has lost weight and the pulmonologist says it is not because she is not absorbing the nutrition. She is burning it off at a very rapid rate and then some more. She has lost almost eight pounds since her recurrent illnesses began this April. The pulmonologist says that Megan not only has large tonsils, adnoids, swollen throat, and glands but she also has weakened muscles, including her diaphragm which is what is most needed to take a simple breath (or so we think). All of these things may be minor separately with healthy children but with a child like Megan all of them put together are not compatible with continuing a high quality of life.

We talked about artificial means of supporting her and that would just be prolonging the inevitable with no less risk of continuing to fight multiple infections.

Given this information, we are confident that the Lord is directing us to look to Megan's eternal future rather than this earthly mountain we are climbing. For Megan, what is on the other side is what matters most.

Although this is a very hard climb for our family, we feel a peace about the events of the day. When we started the day I asked Ken to type some of his feelings for a start about how to report on Megan's condition. This is what he wrote:

"I pray for guidance, wisdom, and peace.

We need guidance in how we should plan for Megan's care, and her quality of life.
We need wisdom to know that whatever we decide is best for her. And is part of HIS plan.

We need peace to know that we are making the best choices for her. We want her to know that we love her and will see her again."

I feel that this prayer has been answered throughout the events of our day. It has been the hardest day of our lives. The comfort comes in knowing that Megan will soon no longer be in pain and that we will see her again one day.

Wednesday, September 2, 2009

In His hands

I just wanted to let everyone know that Megan is in the hospital again. She was admitted last evening. She started having respiratory symptoms on Saturday afternoon and they have worsened since. We already had an appointment with the orthopedic doctor for this morning and instead of going to our hotel last night we brought her to the emergency room. They admitted her with signs of respiratory distress.

As of right now, she is stable respiratory wise. The orthopedic doctors have said they do not believe Megan's pain is coming from any dislocations or her scoliosis but mentioned that it may involve the nerves in her spine.

Ken and I have decided to investigate this possibility of finding a help for Megan's physical pain. One of three things will happen tomorrow when she has an MRI to determine anything about the pain she is enduring with her back and legs.

They have to place her under general anesthesia to do the MRI as she cannot lay still. They did this back in April on her chest cavity (they were looking specifically at her lungs and she came back improved because of the rest she needed). Tomorrow, we are expecting that she will either 1) Repeat the same experience as in April and we will learn about whether we can fix her pain and develop a plan accordingly. 2) She will not be able to be removed from the ventilator and we will need to make decisions about how and when to get her off of it later. Or, 3) The Lord will take her home and give her a perfect, pain free body.

We have thought long and hard about this decision. We have chosen this path because we do not want Megan to suffer and she has been struggling for the last few months, has not been getting better, and her pain has increased. We have placed Megan in the Lord's Hands. We know that He is able to take care of her and the rest of us no matter what happens tomorrow. He is the Great Healer and the Great Comforter.

He's got our little Megan in His Hands,
He's got our wondrous Megan in His Hands,
He's got our tiny little baby in His Hands,
He's got our family in His Hands.