The End with a New Beginning

I know I should be in bed but it's been an eventful day.  I feel like I just finished a very long book and I am ready to begin a new one tomorrow.  With that comes a sense of loss and hope for a new beginning.  Enough of my vague and probably rambling sentences - on to the details!


RR was hospitalized tonight.  Unfortunately not before the kids witnessed a violent end to the evening.  Thankfully everyone is ok physically but it could have ended differently. We knew this could happen. We knew that RR would be very difficult to stabilize after having to remove him from the medication that has reduced his violence and kept it at bay for the past five years.  


I can say with peace and a strong sense of conviction that this was the last time RR will live at home and be able to victimize his family members.  It's the last time the kids will watch the ugly events unfold and fear for their safety and ours.  It's been a lot of years and a lot of work but our part in "hands on parenting" of RR is coming to an end.  We will continue to be family and continue to love him but it won't look the same. It is with a sense of sadness for all of us and a sense of peace knowing that it's time to be done.  Done with the anger and the violence.  It's probably long past due but the time is right.  


We have many things to be thankful for tonight.  Things could have ended much more seriously.  I'm thankful for the Rochester police department that responded in the time they did, in the middle of a snow storm.  I'm thankful for Scott, who walked in the door at the last possible second as I don't think I could have held things off any longer.  I'm thankful for the 911 operator that stayed on the line for what seemed like an eternity.  I'm thankful that AJ was taking a nap and missed all the excitement.  I'm thankful for the fact that RR got a bed in the hospital unit as it was the last one available in a 75 mile radius. I'm thankful the kids are asleep knowing they are safe.  I'm thankful tomorrow we are able to spend the day together and work through the events of this day.  I'm thankful it's done, finished.  For this I am confident; We have loved RR well, we have parented RR well.  We have shown him Jesus.


There are many that have helped us over the years with RR. You know who you are. You have provided many roles; respite provider, personal care assistant, crisis worker and friend.  You helped and listened even when you may have thought we were crazy to continue.  I am thankful for all of you.  You were so important in helping RR and in helping our family.  We could have never done it without you.  I am so thankful for you and hope you know that what an important role you played.  It allowed RR to live for nine years with a family that loved him.  Some days I never thought we would make it that far but we did; together.    I hope you can know, with us, that the time has come for a different setting for RR. Not a different family as we will always be that, but a different environment, one that can provide the level of safety he requires.

Ecclesiastes 3:1-14 (Today’s New International Version, ©2005)

There is a time for everything, and a season for every activity under the heavens:

a time to be born and a time to die, 

a time to plant and a time to uproot,

a time to kill and a time to heal, 

a time to tear down and a time to build,

a time to weep and a time to laugh, 

a time to mourn and a time to dance, 

a time to scatter stones and a time to gather them, 

a time to embrace and a time to refrain, 

a time to search and a time to give up, 

a time to keep and a time to throw away, 

a time to tear and a time to mend, 

a time to be silent and a time to speak, 

a time to love and a time to hate, 

a time for war and a time for peace.

What do workers gain from their toil? I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.

I'm heading to bed with no regrets.  

Goodnight,

Barbara

Happy Valentines Day!

It's been a good day with all of the kids. RR was discharged from the hospital last Friday.  He was there twenty eight days.  It's been interesting as it's like having a different child at home.  Psych medication can change so much.  Right now he talks constantly and very fast.  He doesn't' really have a conversation with us; instead he sounds like he is announcing information - it's a start.  Time will tell if the new medication is a good match for him.

For those of you wondering; We found AJ does not like French fries.  We took him to Mickey D's and made a big deal of it - he tasted one and spit it out.  He didn't quit trying though.  He spied my apple pie and found he LOVES apple pie.  Now every time we run an errand he keeps asking for apple pie - Pretty please (Thanks KJ for teaching him that :)

Aj has had a hard time with gagging and vomiting since his procedure.  I am not really sure why but it most likely has something to do with the position of his GJ tube or his reverse motility.  His food keeps coming up into his stomach and out his mouth.  I'm trying to give it more time.  We see the pediatrician on Friday though I don't expect her to know a lot about it.  I'll call the GI doctor if it doesn't get better soon.  We are getting some food into him so I don't feel like it's an emergency.  The pain clinic called today and they wrote AJ a prescription for Ativan.  I don't have any immediate plans to use it but the next time his wounds are especially bad and he has a lot of anxiety before his bath, we are going to try it.

AJ took "Toy Story" Valentines to school today.  He had lots of fun and came home asking for more candy!  I guess he is making up for what he couldn't eat at Christmas.  He is still pretty careful and only eats small bites of things.  Scott bought me a bouquet of balloons and AJ was determined that they were for him.  He kept saying, "mine" and did not want me to touch them.

Here he is with MY balloons.

Happy Valentines Day!

I John 4:19 (New International Version)

We love because he first loved us.  

Barbara

So Thankful...

Psalm 69:30 (English Standard Version)

I will praise the name of God with a song;

I will magnify him with thanksgiving.

Our hearts are filled with Thanksgiving.  We are back home!  The procedure went  extremely well and we were allowed to leave the hospital (this does not happen very often - Mayo usually likes to keep us as long as possible).

(sorry the picture is not the greatest quality - the hospital gave it to him as a gift)

AJ's airway looked very good.  The largynamalacia is back (floppy larynx) but it is not serious enough to treat at this point.  If or when it becomes a problem he is a great candidate for another airway revision - he has already had one done and his doctor believed it would work again if necessary - great news - any way to avoid a tracheostomy I'll take.  

The interventional radiology doctor was so very pleased with AJ's dilatation.  He said AJ's esophagus went from having two hour glass like blockages to a nice open area.  He really enjoyed working with AJ and asked that we specifically request that he be involved in any future interventions.  Three of the physicians present had worked with AJ before.  It's so great to have a team that loves to work with AJ.

AJ did so great.  I have to credit the peace of God in his little life.  He went back to the operating room without a tear.  He laid down on the table while they prepped him, he let them place the mask on his face and went to sleep holding my hands.  Even his IV access was great.  It has been terrible in the past but they got it in without any difficulty.

AJ's most painful part was the intubation.  His mouth is filled with blood blisters from the damage.  While in the recovery room he asked me to take a needle and start breaking them.  Putting a needle in his mouth is not the highlight of my day but it brings him real quick relief.  He is not allowed anything to drink or eat until tomorrow and he is not very happy about that.  He is asking for McDonalds - probably because we told him they would fix his throat and that he would be able to eat a french fry - something he has never been able to do.

The procedure did bring out the need for additional OT services to keep his mouth nice and open.  It opens substantially less than it used to.  This will become a problem in the future as the smaller the opening; the harder it is to intubate him for any procedure.  The doctor felt he had strictures holding it closed.  I had noticed that to get a toothbrush in his mouth is difficult as he opens just wide enough to get a really small brush between his teeth.  

Thank you for all your prayers.  We are indeed blessed.

Barbara

Counting down the days

Thursday is the day for AJ's esophageal dilatation.  They will also take a good look at his airway. I am expecting good results since he has not been having any difficulties breathing.  Last week we met with the dermatologist.  She was concerned about his increasing wounds but was happy that we are making headway with the terrible itching.

Tomorrow we see the OT to look into suggestions for bathing him.  He is outgrowing his little tub and putting him in the bath and having to unwrap him there is really difficult.  He seems to manage to tear up his skin faster that we can get it to heal. We've been resorting to bathing on the kitchen counter.  It adds to the difficulty of the whole process but it saves our backs.  For you EB families that read this; I would love to hear more about what you have found that works well.

RR is still in the hospital so we have been busy running back and forth.  He really had a tough time getting off of some of his medications.  They have started a new mood stabilizer and he is starting to show signs of improvement. For those of you that have had experience with a manic phase of bi-polar; you know how tough it can get when it is out of control - he has had pretty classic symptoms.  He spent quite a few days thinking he was President Obama's cousin.  Then he crashed and slept for a long time. Yesterday he called and said it was "Jonah" I was talking to.  I hope he can find humor in this when it is over :) I don't know when he will be discharged.  He is not stable yet but things are moving in the right direction.

It is so quiet at our home.  My sister and her boys have moved on to their new home and we are really missing them. AJ cried this morning that his cousins were not here. He ran so much with them that his little feet blistered on the bottoms. This morning he alternated crying between his feet hurting and the boys being gone.  I told him we will have to visit them this spring (I'm sure he has no idea what that means but it got him to stop crying for a bit).

AJ will have to spend time playing with his penguins!

Thanks for remembering AJ in your prayers on Thursday.  I'm also praying that RR's hospital discharge and AJ's hospitalization don't conflict.   I'm looking forward to AJ being able to eat again.  I'll also admit that I am at a loss as to how to prepare for RR's return home.  We've had many rocky roads with RR in the past and new medications will change many of the dynamics of his behavior.

I am at peace.  God has been so good to us and his grace has carried us through many good and difficult times.  I know it will be there in the future too;  Future grace!

Oh how I look forward to that day of redemption.  Don't lose sight of what is ahead!

Romans 8:22-23 (New International Reader's Version)

We know that all that God created has been groaning.  

It is in pain as if it were giving birth to a child.  

The created world continues to groan even now.  

And that's not all.  

We have the Holy Spirit as the promise of future blessing. 

 But we also groan inside ourselves

 as we look forward to the time when 

God will adopt us as full members of his family.  

Then he will give us everything he has for us. 

 He will raise our bodies and give glory to them.

I'll post again after AJ's procedure.

Barbara

Before the temperature drops

I'm enjoying calmer days at home.  RR is safe in the hospital and happy to be there.  He usually derives a sense of safety knowing he can not hurt himself or others when in a psychiatric unit.  They have just started to lower one medication and it seems like it will take forever if they are really going to remove all his medications and start over. There has been some disagreement between the doctors on the value of that.  This is the first time he has ever been hospitalized close to home. (Thank you God for bringing us to Rochester)  We used to have to drive two plus hours just to visit him.

AJ is starting his quarterly doctor's appointments this week. We try to see most of the specialists at least quarterly.  He will see the cornea specialist and they will dilate his eyes to check for any damage.  EB can cause blisters and abrasions in the eye that can be very painful.  AJ has not had regular problems with this and for that we are especially thankful.

AJ will also see his pain team.  I am going to ask them about an anti anxiety drug to give him before bandage changes.  He holds onto his bandages so tight when we try to remove them.  He will take a swing at you if you are not careful.  The anticipation for him seems worse than the actual pain.  Last night he was almost asleep before we were able to finish up bandages changes.  I found it interesting that he was too tired to fight and I was able to break a blister on his chest and drain it without any fussing.  He would not have let me do that quietly had he been awake.

He does have a very raw foot.  It looks bad and he is very sensitive to anyone going near it. It doesn't seem to slow him down much but I'm hoping it starts to heal soon.

The kids have been outside playing in the snow.  The temps are nice today (25 degrees is nice for January in MN). Tomorrow is the big freeze with 5 degrees being the high. Tomorrow is also back to school day as they all have the day off today.

Dad and AJ

AJ in his sled (Thanks Emily for the soft, sweet hat)

AJ's cousin AS on our backyard play fort

AJ and AS play in the snow

Thanks for following us on our journey.  I'm anticipating a good week.

Barbara

A good hospital stay?

Sorry for the delay in writing.  I've been busy to say the least.

RR was hospitalized today.  His physical symptoms are too serious for his doctors to ignore any longer.  He has diabetes insipidus (a kidney problem) and a tumor on his pituitary gland.  We are not sure what problem is causing his symptoms, or if both are.  Add to that some pretty hefty psychiatric meds and it's a recipe for more questions without answers.  The doctors are going to take away all of his medications and start over.  The problem with doing that, is that he becomes violent and psychotic without his meds.  RR remembers well those difficult days and is concerned about what the future days will bring.  He is in a good place and they are working hard to meet his physical and psychological needs.  It appears that he may be inpatient for a while.  This will not be a quick fix but it would be a blessing to have some answers.

AJ's esophageal plan has changed back and forth.  This past week Mayo told me that they wanted AJ to fly to Cincinnati as his airway issues complicate the procedure.  (Cincinnati is where the large EB clinic is located)  I started working on the details when his GI doctor called and said they had a meeting of everyone involved and worked out the problems.  They are confident they can safely do the procedure here at Mayo and he is scheduled to be admitted as an inpatient on February 3rd.  This is good news for which we are thankful.

Our home is extra busy as my sister and her two boys are staying with us for a few weeks.  AJ is having lots and lots of fun.  KJ was here for a week and she always makes AJ's life a little crazy :)
 

Thanks for your prayers.  RR really needs them.  It's hard to start doing major medication changes but his body needs help and the hospital is the best place for him right now.

My prayer for RR is taken from the verses below; Lord it is good to sing your praises, how pleasant and fitting to praise you!  Heal RR's heart and bind up his wounds.

Psalm 147:1-3 (New International Version)

Praise the Lord.

How good it is to sing praises to our God,

how pleasant and fitting to praise him!

The Lord builds up Jerusalem:

he gathers the exiles of Israel.

He heals the brokenhearted

and binds up their wounds.

Thanks for reading.  I hope that whatever your comes your way, that you can experience the peace of God and the blessing of his goodness in your life.  He truly is good and my heart overflows in thankfulness to him.  

Barbara

First Day of School

Aj had his first day of school.  He started out pretty upset and was not happy that I was not going with him.  The school staff were great and it wasn't long that he was taking part and enjoying himself.

He will go twice a week for two and a half hours each time. It's a great little group of kids and I think he will really enjoy himself.  After he returned home (tired but with a smile on his face) he said that he cried at school and wanted Dad. (Of course he wanted Dad. Dad wasn't the one forced him to go)  He also said he wanted to go back again because he had fun. The confusing part was that he said that he had coffee and that it was hot. Not sure what that was about but I'm sure he will have many stories to tell.

Here are his first day of school pictures.  He was determined not to show his face as he was very upset with me for sending him :)

On a medical note, we had our visit with AJ's airway doctor and she stated that she personally will be in the operating room to look at his airway and then intubate him for the esophageal dilatation. We are just waiting for the date. I am thankful for Dr T.  She will get a very good look at his airway and she will do a great job with his intubation. She takes very special care of AJ.

Today is our 27th wedding anniversary.  We are off to celebrate; should be a great weekend.  Hope yours is too.

Barbara