Home Sweet Home

I did get to talk to Mom today, but it was a very brief conversation. Grace is home. Discharge from the hospital occurred in half an hour which is unheard of in the medical world! Grace has had a day of storming and high heart rates.

Mom is exhausted and the weekends are when the family is without nurses. Mom was gearing up for being up with Grace tonight. Thankfully, one of Grace's nurses was short on hours so she is coming for a while tomorrow during the day.

That is all I know for now.

Please Pray For:

• Complete healing and restoration
• Storming to cease
• Rest for the family
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com )

Did not hear from Mom today

I did not get a call from Mom today. This does not surprise me considering there was a strong possibility of Grace coming home today which makes for one busy day. I hope to hear from her tomorrow.

Open hands...

Grace had a rough of storming today which delayed her discharge from the hospital. Apparently, she would have been allowed to go home despite the storming, but Mom felt that it was best to bring her home in a relaxed state which makes sense.

Grace is holding both hands open now rather than with a clenched fist. This may seem like a small step, but it shows improvement.

In a previous post I mentioned that Grace is right next door to another little girl who was in a similar condition as Grace. It has been a great encouragement to Mom to see this little girl's progress. This little girl now hums when happy and growls when upset. This little girl finger painted with her Mom today. She still has a ways to go, but it is exciting to see how God is working in her life!


Please Pray For:

• Smooth transition from hospital to home
• Storming to cease
• Complete healing and restoration
• Strong and united marriage
• Financial Provision (If you are interested in helping in this way please e-mail info@gracegoodday.com.)
  

Possible Discharge Today

Grace had a chest x-ray yesterday and it showed improvement in her lungs already. Her vitals continue to improve.

Mom had a good conversation with Grace's main doctor about her concerns and some misunderstandings. The conversation made mom feel like the doctor and her were defintely on the same page. This was an answer to prayer!

Grace's room is right next the little girl we spoke of in previous posts who has a similar condition to Grace. Mom was able to go out to lunch with this little girl's grandmother yesterday.

Yesterday, Mom said there was a strong possibility for discharge today.

Please Pray For:

• Praise for a doctor who understands Mom's concerns
  
• from the hospital at God's timing
• Strong and united marriage
• Complete healing and restoration
• The boys as they rotate caregivers during this hospital stay
• Rest for the family

On the mend

Grace is showing improvement since being on the antibiotics. Her heart rate is beginning to return to her normal baseline. Her breathing is still labored, but that is due to pneumonia. She had what mom said a "normal" storming episode.

Dad spent the morning with Grace and Mom will begin spending her morning/afternoons at the hospital again while the boys are being cared for elsewhere. Thank you for all those of you who have been so generous of your time to care for the boys during this time.

There is some tension with the doctors on Grace's case which needs some prayers. Both the doctors and Mom/Dad are trying to do what they believe is best for Grace and sometimes what each party sees as best for Grace is conflicting.

Please Pray For:

• Complete healing and restoration
• Quick recovery from pneumonia
• Quick hospital stay in order for Grace to return back home
• Understanding between Dad/Mom and the doctors
• United and strong marriage for Dad and Mom
• The boys during another round of different caregivers while Grace is in the hospital
• Financial Provision (If you are interested in helping in this way please contact info@gracegoodday.com)

Schedule Issues

Grace had a better day today. She is on antibiotics that are starting to take effect.

Tonight's challenge was that the doctors don't want to keep to the regimen of medicines that mom and the nurses had worked out while Grace was at home. The storming was beginning to lessen under that regimen, and as such mom is very hesitant to change anything.

As of now, the length of Grace's hospital stay is still undetermined.

Please pray for:

• Complete healing and restoration for Grace
• A strong, united marriage for mom and dad
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com)

Return to the Hospital

Grace is back at the hospital tonight. She hasn't been able to breathe normally for a few days and her heart rate and temperature have been spiking. Upon returning to the hospital, she has been diagnosed with pneumonia.

Mom is spending the night at the hospital with Grace.

Please pray for:

• Complete healing and restoration for Grace
• A strong, united marriage for mom and dad
  

No update tonight

I did not hear from Mom tonight. I am sure I will hear from her tomorrow morning.

Just Not Herself

According to Mom, Grace has not been herself since her storming episode on Sunday. Her heartrate continues to be higher than normal and fevers continue to occur. Several tests have been done to rule out infections. All the tests have come back with no sign of infections. This obviously is frustrating because there is no way to know how to help Grace with these symptoms without knowing what is causing them. Mom was going to take Grace in tonight to the hospital for a chest x-ray to see if there was anything abnormal in that regard.

Mom and Dad continue to adjust to having Grace home and all that involves. They are really enjoying their new home. This is the first place that they have lived where they feel like they may be a while. They would like to thanks the many friends who have helped make their house feel like home.

Please Pray For:

• Complete restoration and healing on Grace's brain and body
• Revelation of what is going on in Grace's body to cause a high heart rate and the fevers
• Strong and united marriage for Dad and Mom
• Financial Proivision (If you are interested in this area please contact info@gracegoodday.com)

Post Delayed

Mom and I were unable to catch eachother tonight. I hope to catch her early tomorrow.

Busy, but good

Grace's day today was busy but good. She went to her check up today and everything was ok. It turns out that the fever was only observed once and dissipated after a dose of medicine.

Mom had an exciting day of filling out paperwork. Organizations (government and otherwise) helping pay for Grace's care understandably require consistent communication as a condition of the funding. It's necessary, but it still takes time and when multiplied by several organizations it can add up.

Grace enjoyed her graciously donated bean-bag tonight!

Please pray for:

• Grace's heart rate to return to normal
• An end to storming once and for all
• A strong united marriage
• Financial provision (If you are interested in this area please contact info@gracegoodday.com)

Prayers Needed

Mom called with a quick update for tonight. Grace has had a rough day today. She is currently not storming, but her heart rate is high along with a fever. They thought it may possibly be a urinary track infection, but that has been ruled out. The next step would be to see if it is a respiratory infection. Mom is asking for prayer that they can keep her comfortable until her doctor's appointment tomorrow. They would like to avoid a hospital visit.

Mom is very thankful for every one's thoughtfulness and generosity. A bean bag chair was brought over today along with special dresses/outfits for Grace to Velcro in the back and fit around her trach.

Please Pray For:

• Praise for an excellent doctor for Mom to communicate with about her concerns
• Prayer for her heart rate to return to normal
• Prayer for her fever to disappear
• Prayer for infection to leave her body
• Prayer for storming to cease once and for all
• Prayer for a strong united marriage
• Prayer for financial provision (If you are interested in this area please contact info@gracegoodday.com)

First trip to church

Grace had a rough day today of storming. She continues to be on a fairly predictable schedule of storming. Dad and Mom were able to go to church today. This was an awesome accomplishment for the family.

The night nurse comes tonight to give the family some much needed rest from being on watch 24/7 all weekend. Grace's heart rate is higher than Mom is comfortable with and Mom said she would be contacting the doctor soon to try to regulate this rather than taking her in.

Thank you for everyone's generosity. The need for a bean bag chair has been filled!

Please Pray For:

• Praise for the family attending church today
• Praise for the need of a bean bag chair being met
• Prayer for storming to cease once and for all
• Prayer for a strong and united marriage
• Prayer for financial provision (If you are interested in helping in this area please contact info@gracegoodday.com for more info.)

Communication

Today was the first day the family was without a nurse's assistance. It was a busy day balancing all of the family's needs. Grace continues to show encouraging signs that she is fighting past all of this. Today she started clicking her tongue on the roof of her mouth. Mom described her interaction with Grace as similar to talking to a baby cooing. Mom said that it was as if Grace was trying to communicate, "hey Mom - its me!"

It is the family's goal to make it to church tomorrow, but that will all depend on how the evening and morning goes. Grace is in a pretty consistent storming pattern and according to the pattern she is due to storm tomorrow. But, we serve a God bigger than patterns. We are praying that the pattern is broken once and for all tonight.

I try to ask the family a few times a week if there are any specific needs I can put out on the blog. The current "want" (mom says it isn't a need :) ) is for some sort of bean bag chair. The family is just trying to have options for Grace to be in different positions. If you have one of these please e-mail info@gracegoodday.com.

Please Pray For:

• Praise for Grace's communication
• Praise for an awesome day time nurse
• Prayer for storming to cease allowing the family to attend church WITH Grace for the first time since the incident
• Prayer for strength and unity in Dad and Mom's marriage
  
• Prayer for financial provision (If you are interested in helping in this area please e-mail info@kucejko.com.)
  

Grace Abounds

Today was a good, but rough day.

First, an editors note. Mom did NOT take Grace to the mall while she was storming yesterday. I misunderstood that - my bad. However, she did storm most of the day today. Her heart rate also went up on the high side of the spectrum, which concerned mom.

Mom is really appreciating the help of Grace's day nurse. The nurse has some personal experience with family trauma, as well as a history of working with drowning victims who blew past all the doctor's wildest expectations. Needless to say, the time with her has been encouraging.

Mom is realizing that the rough time of the day seems to be between 3pm and 6pm. Why? Because that's when all at once dad isn't quite home from work yet, Grace needs care and her brothers can be fussy.

Someone dropped off a baby monitor today!!! Wow! What a huge blessing!

Please pray for:

• Grace's complete restoration
• Financial provision for the family
• Grace's blood pressure to calm down
• Praise for the baby monitor!
  

Something Different

Grace is home, and adjusting to new surroundings. She stormed a bit today. For 10 weeks, the prevailing wisdom has been to leave her in bed and let her storm it out. Today mom and the home-care nurse opted to go to the mall instead figuring "what could it hurt?" Grace continued storming for much of the time at the mall, but upon coming home she took a nap as if the activity caused her to tire out and stop storming sooner.

All in all, it's a wonderful blessing to have Grace at home. It's so much of a relief to be able to care for Grace AND her brothers all at once, and it means much more time with the family and less money spent on gas. The relief is very easy to pick out of Mom and Dad's tone of voice.

Mom and dad are still getting settled in their new home, slowly putting pictures on the walls and such. They like their home very much, and their relationship with the day-nurse started off very well! What's more, by some sheer "coincidence" mom and dad live next door to a part time nurse who cared for Grace her first night in ICU and 2 doors down from the mother of a child with cerebral palsy.

Grace has been very accustomed to laying in bed for the last 10 weeks or so. One thing that mom and dad thought might make for a good change of pace is for Grace to sit in a bean bag. If anybody has an extra one lying around or comes across one at a Garage sale sometime, mom and dad would be up for acquiring one. Mom also mentioned that she would feel better at the new house with the addition of a baby monitor. If someone were to assist there it would also be helpful. Please contact info@gracegoodday.com if you can help with either of these.

Please pray for:

• A continued successful transition
• Grace's complete restoration
• Financial provision for the family (info@gracegoodday.com if you're interested in helping)
  

Missed eachother today...

Mom and I were not able to touch base today. By the time I got her voice mail message it was too late to call. I didn't want to risk waking them up - I imagine sleep is extremely important at this time.

Update #2 for Monday

Grace is home safe and sound! It was a stressful day for mom. The equipment company was supposed to send someone over to set up all the machines for Grace's homecoming and that did not happen. Mom was left to figure it out with only being able to ask questions of them over the phone while the boys were obviously wanting her attention.

Grace did not storm on her way home, but her oxygen level has been lower than normal. Grace's oxygen level has been near perfect for quite sometime and reached some lows today that Mom has not seen. Mom has put her on oxygen as a precaution and will talk to the doctor more about it tomorrow.

Mom is still battling red tape with getting all of Grace's needs supplied. But, the main thing is that Grace is home with her family.

The oldest brother is showing excitement that Grace is home and Mom even read his bedtime stories in Grace's room today. The family is finally ALL together for the first time in months and Mom says that is a very good feeling.

Mom and Dad want to say how much they appreciate all your prayers, support and help. Right now the family needs to focus on being a family and working on figuring out how everything is going to work. Therefore, this is not a good time for visitors or a whole bunch of phone calls. The best way to communicate to the family at this point is through comments on the blog or cards sent to the home. The best way to help the family is to continue to stand with them in prayer and faith that Grace IS healed! Mom said that she will communicate when the family is ready for help with specific needs.

Please Pray For:

• Praise for Grace being home!
• Praise for a nurse coming tonight at midnight
• Prayer for Grace's oxygen level to return to normal
• Prayer for transition for the boys
• Prayer for complete restoration of Grace's body
• Prayer for financial provision (If you are interested in helping in this way please contact info@gracegoodday.com)

Prayer Needed (Morning Update)

Hello! For those of you who didn't read the blog last night - there is a post from late last night, but I wanted to post before tonight due to prayer need. So most of you get 2 posts to read today!

Mom called me this morning asking for prayer. She was up last night vomiting several times. She did not have a fever. She did not know what it is. She is determined to NOT let it stop them from bringing Grace home. Please PRAY that the vomiting and the feelings of sickness will be taken away immediately.

She is currently on her way to drop the kids off and then on to the hospital to do some last minute things before discharge.

She did report that they still do not have a nurse for the day today, but the insurance has approved a nurse to come at 11pm and will stay overnight until 7am. Mom is relieved that she will be able to get some rest!

I think we have found a boom box! Thank you!

Please Pray For:

• Praise for a night nurse tonight
• Praise for Grace coming home today
• for Mom's "flu" like symptoms
• Prayer for everything to fall into place easily and quickly for discharge
• Prayer for safe travel for Grace and the family home
• Prayer for a smooth transition to home

Let's make Grace's homecoming even sweeter! Please comment if you read this blog tonight or tomorrow. Let's continue to show the family we are standing behind them. I believe the most comments that have been posted as of date on the blog in one day is 17. Let's beat it and show the family we are in this for the long haul! We will not waver in our faith! If for some reason you are having trouble commenting feel free to send your comment to info@gracegoodday.com and I will post it for you! Maybe, Mom and Dad will have a chance in the next few days to read all these comments to Grace off of the blog!

Tomorrow is the big day...

Grace comes home tomorrow! Mom and Dad continue to work hard to get everything done in order for the homecoming to go smoothly. Her brothers are anxiously awaiting her arrival also.

Dad's 24 hours stay went well although Grace stormed during the majority of it. Mom looked at the positive side and reported that at least she got her storming out of the way so most likely there would not be storming on the way home or her first day home.

Interestingly enough, their insurance does not cover nursing care for the day that a patient is discharged. So Dad and Mom will be on their own tomorrow. Dad is going into work and working a full day in order to continue to support the family financially. Mom will bring the boys to a sitter and then go to the hospital to go through the discharge process.

Thank you for all those willing to help with the TV request. Well, I asked the family today if there were any other items that would be helpful. Mom said that a boom box with a CD player would be a blessing to have in Grace's room so they could play music for her. Mom has been playing praise and worship music along with kid's bible songs in her room at the hospital. So, if you happen to have a spare boom box/CD player laying around please e-mail info@gracegoodday.com.

Please Pray For:

• Praise for Mom and Dad's successful 24 hour stays
• Praise for Grace returning home tomorrow
• Praise for the house getting unpacked and in order
• Prayer for discharge to go smoothly
• Prayer for safe car ride home for Grace
• Prayer for smooth transition for Grace to being at home with the family
• Prayer for the boys and their adjustment to Grace coming home
• Prayer for financial provision (If you are interested in this area please e-mail info@gracegoodday.com)

Let's make Grace's homecoming even sweeter! Please comment if you read this blog tonight or tomorrow. Let's continue to show the family we are standing behind them. I believe the most comments that have been posted as of date on the blog in one day is 17. Let's beat it and show the family we are in this for the long haul! We will not waver in our faith! If for some reason you are having trouble commenting feel free to send your comment to info@gracegoodday.com and I will post it for you! Maybe, Mom and Dad will have a chance in the next few days to read all these comments to Grace off of the blog!

Last minute touches...

Mom and Dad are exhausted from preparing for Grace to return home, but still chugging along. Mom was busy getting the last minute touches on Grace's room when I spoke with her. She is making the room as bright and cheery as possible for Grace.

Mom had a great 24 hour shift caring for Grace. The night was a little rough due to storming. Mom did get to take Grace on a walk and get her out in the sun a bit today which Grace seemed to enjoy. Dad is currently in the midst of his 24 hour stay. There was not much else to report on Grace for today.

Thank you to those who offered a TV - the family has been blessed with one, but appreciates everyone's willingness to help!

Please Pray For:

• Praise for God providing a TV for Grace's room
• Praise for Mom's 24 hour stay
• Praise for Grace's homecoming on Monday
• Prayer for a smooth transition home
• Prayer for the boys transitioning to this change
• Prayer for strong relationships with the nurses that care for Grace
• Prayer for complete restoration for Grace
• Prayer for rest on Sunday (Mother's Day)
  

24 hour stay

Mom was in the middle of her 24 hour stay when we had our conversation. It was amazing to hear the energy in her voice! She had done all the care for Grace thus far and was energized and raring to go the last home stretch of her stay at the hospital.

Mom has noticed that the storming seems to begin at bed time and last usually until the next morning. Interestingly enough, that is the time family is NOT with Grace. Mom is starting to conclude that Grace's absence of storming may be linked to the fact that family is present.

Dad and Mom continue to prepare for Grace's homecoming. Thanks to friends the house is quickly getting in order. Mom commented how nice it was to return home to blinds that were up on the windows.

Red tape is plentiful and Mom continues to tear through it by her persistence. Everything thus far is on schedule for Grace to return home on Monday as planned.

Grace had a simple procedure regarding her G-tube today and one of the nurses present asked to speak to Mom. She then shared how her brother had drowned at a young age and their family's fight for his life and healing. This conversation ended up being such a blessing to Mom! It is amazing the individuals God puts in your path!

The family is in need of a small color TV for Grace's room. The purpose of the TV would be for the nurses. They want to make the atmosphere in Grace's room accommodating, comfortable and welcoming to the nurses so the good nurses stay :) If you have an extra TV laying around and are interested in donating this to the family please contact info@gracegoodday.com. We would ask that you e-mail us rather than call the family due to the family needing to focus every minute of their attention on preparing for Grace to come home.

Please Pray For:

• Praise for divine connections
• Praise for Grace's homecoming on Monday
• Praise for Mom's 24 hour stay going smoothly
• Praise for the energy in Mom's voice
• Prayer for complete restoration for Grace
• Prayer for Dad's 24 hour stay tomorrow
• Prayer for the right weekend/night nurse for the family
• Prayer for financial provision (If you are interested in this area please contact info@gracegoodday.com).
  

MORE boxes....

Dad got to spend the day with Grace today while Mom manned the fort at home. Dad reported that Grace did storm some today, but had stopped before he left the hospital this evening. Mom spent her day watching MORE boxes fill up her new home. The boxes contained a months worth of supplies to take care of Grace. The social worker also stopped by to check out the house and all went well.

Dad is taking the next couple of days off of work in order to get in the rest of his necessary training before the big homecoming on Monday!

Mom is so excited to have Grace back at home and again talked about how it will be the best Mother's Day gift ever!

The boys are having a little bit of a rough time due to not getting as much attention as usual. Although this is for a season, it is tough on Mom to see how this is directly affecting them.

Please Pray For:

• Praise for Grace's Homecoming on Monday
• Praise for supply delivery and social worker walk through went successfully
• Prayer for Grace's complete restoration
• Prayer for storming to cease
• Prayer for Grace's brothers as they receive a little less attention during this transition
• Prayer for Dad and Mom's 24 hour hospital stay
• Prayer for financial provision (If you are interested in this area please e-mail info@gracegoodday.com for more information).

New Spaces

The family took in a baseball game tonight as a brief rest before the rest of the week arrives.

Grace had a good day today. After storming much of yesterday, she appeared mellow and a bit tired today.

Mom and dad stayed up late last night working on their home in preparation for Grace's arrival. In addition to getting the home set up, finding new spaces for everything, and caring for Grace's 2 always-active brothers, Mom and Dad both have to do a 24-hour period at the hospital caring for Grace. Mom is planning hers on Friday, while Dad will go on Saturday.

Grace's new bed will arrive at the family home on Saturday, in addition to a slew of social worker visits, doctor consultations, and other events to check off the list in the days to come.

Sunday will hopefully be a day of rest for the family before Grace arrives home next Monday.

As mom said, "what a great mothers day gift to have Grace home!"

Temporary Technology Blip

Hello Everyone! We apologize for our lack of posting the last few days. We have been in the middle of a move in addition to losing the use of a cell phone and the use of the Internet for a couple of days. But we are back on track now though! Thank you for your patience and understanding.

Mom and I finally got to catch up today after playing phone tag for a while. First, she wanted to thank everyone so much for all their help with their move. They are loving their new rental home! They are excited to get settled before Grace returns home.

Mom and Dad have been very busy moving and preparing for Grace's homecoming. She is scheduled to come home on Monday! WOW! Before that point, Dad and Mom need to finish up their training to care for Grace and do a 24 hour stay at the hospital.

Mom has been busy cutting through massive red tape with all sorts of people. She sounded very upbeat despite all the red tape though. She is SO excited to have Grace coming home so soon!

Grace has had on and off days as of late. She stormed all day yesterday and was completely worn out today after a day or storming. The doctors are beginning to give her medication right when the storming starts rather than waiting until it gets out of control.

By the way Mom and Dad did get a fridge and lawnmower - thank you to all those who offered to help with this need!

Please Pray For:

• Praise for a successful move
• Praise for a fridge and a lawnmower
• Praise for beautiful rental home
• Prayer for storming to cease
• Prayer for complete healing and restoration for Grace
• Prayer for red tape breakthroughs :)
• Prayer for financial provision (If you are interested in helping in this area please e-mail info@gracegoodday.com)

Thank you for all those who read this blog faithfully! The family appreciates your continued prayers and words of encouragement on the blog!

We interrupt this blog...

We are sorry to report that we weren't able to connect with Mom and Dad tonight.

We happen to be moving about the same time they are, and couldn't make it happen.

We hope to get an update tomorrow.

Thanks for your understanding!