Monday, January 31, 2011

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.


Monday, January 17, 2011

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.


Friday, January 14, 2011

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.  


Friday, January 7, 2011

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.