Raspberries

Mom always keeps me on my toes - I have 12 pages of notes to summarize and share tonight. Grace's storming persists with great intensity and she has returned to the ICU. Grace "postures" her back in a 90 degree angle while laying down while storming. This is extremely difficult to watch and there is nothing in the physical realm that can be done to stop this. We know there is more than just the physical realm though! Mom shared with me today that God showed her that, "I need to stop praying for medication to control the storming and pray for God to STOP the storming"! Let us stand in agreement with her on God stopping the storming!

The severity of Grace's storming caused a Care Meeting to be called today. The doctors were very honest with Dad and Mom and "admitted" that they had never seen a case of storming this severe or last this long. The doctors are confused why she seemed to be getting better and now seems to be going back to severe storming. The doctors do not know what to do. Mom was relieved in some ways to hear this because she has suspected this for quite sometime, but it had not been verbalized.

The doctors want to do a spinal tap to check for possible infection, but Mom is very uncomfortable with this being done. She does not want risk of further infection and it seems whenever they do a procedure with Grace that an infection follows in the area of the procedure that was done. The doctors are going to wipe the slate clean as far as medications and try one at a time to see which are having a positive effect and which are not. The doctors suggested this much to Mom's excitement because Mom was actually going to ask the doctors to do this very same thing!

They are beginning to use the G-tube again and starting off slowly to make sure there will be no problems with leaking like there was in the past.

The doctors seem to think that the bouncing back between ICU and Rehab may persist. Their desire is to have her in Rehab at any point where she is stable. The date for Grace to return home has been pushed back and there is no definite date at this point. According to the doctors, Grace would need to be stable, not storming and with no need for changes of dosages of medication for a week and half in order to be sent home. We are standing in faith that Grace will blow all the doctors out of the water by walking out of the hospital while singing her praises to God!

The family's insurance policy has no life time max cap on it which is pretty much unheard of in this day and age. Well, Mom got a not so friendly call from the insurance company asking a whole bunch of uncomfortable questions and basically trying to figure a way out insurance company to get out of paying for all the medical bills that are pouring in for Grace's care. Mom is frustrated to say the least, but is not concerned or worried about it. God has provided and will continue to provide!

One of you posted a comment praying for "giggles" and "joyful times" for the family and I am happy to report that prayer was answered at bath time with the boys! The oldest son has finally mastered the art of REALLY jumping! He actually gets some air now rather than just squatting and pushing up! He is also quite fascinated with the location of his belly button and tends to get it confused with other body parts that we won't mention here in case he reads this some day when he is older :) He loves his little brother and loves to give him raspberries in all sorts of interesting locations and Mom is now in the process of teaching him boundaries :) Hearing Mom talk about the boy's interactions put a smile on my face and I could tell she was smiling while sharing with me.

Mom's prayer time was extremely encouraging today. God gave her a picture of Grace's brain in Jesus' hands. Wow - what a picture! Mom continues to stand in faith and not waver in the promise that God has given her that Grace will return to her sweet and rambunctious self. The difficult part is that this will occur in God's timing and often we want it to happen in our timing.

Mom was called by a friend today who has many children including some with special needs. This friend got her highly reccommended pediatrician to take on Grace once she returns home. The amazing part is that this pediatrician is not accepting new patients. The more amazing part is that he works out of Children's and is willing to follow Grace on a daily basis until she comes home. Wow - what an answer to prayer that we did not even know we needed to pray for!

Please pray for:

• Storming to END permanently
• Wisdom for parents/doctors regarding spinal tap
• Medical Insurance to cover all expenses at 100% after deductible which is what their policy states
• Praise for the laughter the family had with the boys during bath time
• Praise for a pediatrician for Grace
• Complete healing and restoration of Grace's body from head to toe
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com for more information).

Thank you to all of you who read the blog! The family appreciates your support and all your comments.

Do not pass Go...

Grace is back in ICU tonight and in need of prayer. ICU keeps stabalizing Grace with drugs not allowed in rehab. They send Grace to rehab where those drugs aren't used, and the storming starts up again. Then rehab sends Grace back to ICU.

It's a lot like calling the phone company for DSL support. Billing? Sorry, you need the local office... DSL issues? sorry, you need the tech support line...

Whatever the situation, we need your prayers to stop it.

Mom and dad have a good lead on a dwelling place that could accomodate Grace. They're looking at a few more options just to be sure.

Mom's gall bladder pain has lessened, but it's still there. She's still meeting with the surgeon on Wednesday.

Please pray for:

• Complete recovery for Grace and an immediate end to the storming
• An end to the continual department changes for Grace
• A resolution to mom's gall bladder pain
• Rest and a fresh perspective for the family
• Financial Provision (If you are interested in helping in this way please e-mail info@gracegoodday.com for more information.)

Ice cream and a Movie

Mom was sending dad out for ice cream and a movie when I talked to her. They were planning on having some much needed down time just the two of them. This is an answer to prayer in and of itself!

The family went to look at apartments today and they believe they have found the perfect place. It is 1400 square feet which is MUCH larger than their current place. It is two bedrooms with a den which is where Grace would be. The den is right off of the main living area. The apartments is 5 minutes from their current place so Dad will still be very close to work.

Dad and the boys spent the day at the zoo while Mom was at the hospital. Grace is doing about the same. The storming persists and Mom is becoming concerned about some of the possible side effects that the drugs could have on Grace. The drugs do help with the storming, but on the other hand the drugs could cause other serious problems.

Mom's gull bladder issues persist. She is in a lot of pain and is having trouble sleeping due to the pain. Her appointment with the surgeon to discuss surgery is this coming Wednesday.

Mom had some quality time in scripture with Grace today. She was reminded in one of the Psalms to rejoice and to look back at the miracles God has done in the Bible and also with Grace. She said that sometimes it is hard not to let go of the promise God has given her of healing Grace, but she continues to persevere.

Please pray for:

• Complete restoration for Grace
• Storming to cease immediately
• Mom's gull bladder - upcoming possible surgery
• Details to fall into place for moving to a better place for Grace
• Medical staff to have wisdom with Grace's care
• Rest for the family
• Times of laughter and joy amongst this storm
• Financial Provision (If you are interested in helping in this way please e-mail info@gracegoodday.com for more information.)

Making a Comeback

Grace continued her 3-day streak of consistent improvements today!

She is still storming, but less so than she was yesterday. The doctors are doing physical therapy again!

Grace appears to be clear of infection. The doctor overseeing that aspect of Grace's care didn't feel the need to increase the dosage of antibiotic, but he felt that it was important to continue the dose for the typical duration. The doctors did a culture of some of the old tubes they replaced from Grace's lungs and found evidence that there was an infection in Grace's lungs.

The doctors did find evidence of blood in Grace's stomach, but an x-ray turned out to be normal.

They replaced the g-tube, and the new one doesn't appear to be leaking!

On the mental activity front, Grace appears to be moving her hands to grab whichever of the tubes the doctors happen to be adjusting as they adjust them.

Mom's gall bladder issues came back today. She was examined at the hospital and told that the situation again wasn't an emergency, despite it being painful. Mom has a consultation scheduled for next Wednesday to discuss what surgery would involve.

Mom and dad looked at a rental home, but decided it wasn't for them. They intend to keep looking for a 3-bedroom single level first-floor rental.

Please pray for:

• Storming to cease and full brain functioning to become apparent to those around her
• Protection against infections
  
• Upcoming move
• Ability to get out of their current lease with no fees or other problems
• Health for the entire family
• Financial Provision (If you are interested in helping in this play please e-mail info@gracegoodday.com)

Two days - that makes a streak!

Grace had a fairly peaceful day today. She was without storming from 8am until 3pm after a rough night of storming last night. But, even the storming last night was not seriousness enough to send her back to the ICU. Praise God!

They are continuing to investigate why her bladder is not emptying fully and the link it may have to the bladder infection. Mom suspects that the increase in storming recently is due to the bladder infection. They did some x-rays and scan today to see what the next step is.

The family is going to look at a 3 bedroom rental home that is 2 minutes from their current apartment. If the place gets their approval they hope to move in the next week. This would involve the family needing to get out of their current lease. Mom has talked to the landlord to see a way around the fees associated with breaking their current lease.

Please pray for:

• Storming to cease and full brain functioning to become apparent to those around her
• Protection against infections
  
• G-tube leakage/wisdom in how to handle it
• Upcoming move
• Ability to get out of their current lease with no fees or other problems
• Health for the entire family
• Financial Provision (If you are interested in helping in this play please e-mail info@gracegoodday.com)

Keep up the comments - wow you all are incredible prayer warriors! I am encouraged so much each day reading the comments - I can't imagine how encouraged Dad and Mom are from your strong prayers of faith and encouragement! Keep them coming!

Rehab here we come...

Grace is out of the ICU and back in Rehab! Thank you for all your prayers. Grace's storming is under control and she has had limited storming today. Dad and Mom are excited to have Grace back to a floor that seems to have more hope! Grace will be getting back into a routine which will include therapy of all shapes and sizes.

Her G-tube is still an issue which mom is concerned about. The surgeon came in and put a smaller tube in, but it is still oozing. Again, this is the tube they use to feed her and administer drugs into her system so it is extremely important that it is working correctly.

The doctors did an emergency trach change due to a mucus plug today which resulted in Grace's breathing sounding much improved.

Dad and Mom are in discussions about bringing Grace home and what that will entail. They have decided that it would be best for Grace for them to live in a 3 bedroom ranch where she could have her own room. This move for the family may not be able to happen before Grace comes home, but will need to happen as soon as possible.

Dad and Mom both saw Grace move her head today and blink her eyes. Mom's comment was "we have to start somewhere" and this is a very good place to start!

Please pray for:

• Storming to cease completely and full brain functioning to return
• Dad and Mom to have endurance and health of their own during this time
• G-tube issues to be resolved
• Provision for a home that fits the family's needs
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com for more information)
  

Grace for the family

My conversation with Mom was brief tonight due to medical staff needing her attention. Last night was a rough night for Grace. She stormed almost all of last night and no medications seemed to help.

Today, the storming ceased for the morning and afternoon and had just started up again around 8pm when I talked to Mom. Mom has been getting into bed with her to hold her during the storming.

They have taken culture after culture and are unsure where the infections are located in Grace. They know of the bladder infection, but believe their may be more than that. They did an ultrasound today and found 1/2 liter of urine in Grace and Mom is suspecting that this caused the bladder infection and has also caused it to persist despite antibiotics.

Grace's G-tube (feeding tube) is leaking. This tube is what they use to get Grace the various medications she needs. The leaking means that Grace is not getting the full dose of the medications or any at all which could be a reason for the storming being heightened. They now have a tube in her nose/mouth to feed her and are awaiting for surgery to come in and put a smaller tube in - in order to facilitate the opening where the G-tube is at to close properly.

Dad and Mom have agreed to have one of them there 24/7 until Grace is stable. Dad has taken off of work in order to be able to do this. They will be having another Care Meeting tomorrow to discuss future plans. The Care Meeting yesterday was a few house before Grace was transferred back to ICU.

Mom is feeling symptoms of her gull bladder again - which he has not felt since the initial issues a few weeks back. Mom is exhausted in every sense of the word.

Please pray for:

• Storming to cease
• Quick and successful transition back to rehab
  
• Strength/Endurance for Dad and Mom
• Brain functioning to return completely
• Mom's gull bladder
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com for more information)

Thank you for all those you check the blog and pray for all the prayer points! Thank you for standing with the family even when circumstances in the "natural" can be discouraging - God is doing far more than we can ask or imagine! Keep up the comments on the blog!