Fearfully and Wonderfully made

Three Days Post Op
November 30, 2006, 11:20 pm
Filed under: Surgeries

What a difference a day makes!

Today – Thursday, 30 November marks 3 days post op and we have turned the corner on pain and panic attacks.

The day nurse greeted me this morning with we need to get Giovanna off the fentinol drip and onto oral pain meds.  So the first thing Giovanna had to do was eat a good breakfast.  This is easier said than done.  She has not eaten well since the surgery.  So I went down to the cafeteria and got some yogurt – which she ate.   The oral meds were given and the Fentinol drip was stopped (but I did not know when they stopped it).

 I first became aware of a change in Giovanna when about mid morning the nurse came in to remove the cath tube and the foley bag.  Giovanna was quiet and did exactly what she was told with out fussing.  I was amazed and looked at the IV – noticing that she was not getting the IV pain meds.  What a tremendous difference.

The only way I know to describe Giovanna on the pain meds is to have you imagine the worst kid you have ever seen/heard throwing a temper tantrum in a store and multiply that times 5.  That was Giovanna on Fentinol. 

Once the IV drip was stopped, her personality began to come back and she began to smile more, tease the nurses and enjoy her stay. 

She got to take a shower for the first time today.  I am not sure who got the wettest, Jess, the nurse, Giovanna or me.  The nurse just let her sit in the shower for as long as she wanted to.  Jess has seen Giovanna at her worst and was so excited to see her smiling and having fun.  Giovanna tried to get both of us as wet as she could.  A task in which she was generally successful.

When it came time to clean the pin ports, we actually got the first two rows done with out any complaints.  However the ones on her foot did hurt and still had some dried blood around them.  She complained a bit more while doing these.

Dr. Guidera has not totally comitted as to when we will begin the “distraction” process – the name given to the period of time when the pins start doing the work of bone lengthening.  We could start as early as Friday or if there is still swelling, Monday.  My guess is that he will wait until Monday.

Giovanna has full days now.  She gets a quick rinse in the morning, gets dressed and then off to therapy.  Since she is no longer hooked up to any tubes, we go for frequent strolls through the hall ways.  She has therapy twice during the day – to help reduce the loss of motion and flexibilty.  Giovanna does not particularly like this part.  We are also working on getting her strong enough to use a walker!!

She looks forward to the shower at the end of the day – mainly because she gets to play and it does make the pin port cleaning go much faster!!!

Life has quickly settled into a new routine. 

I get a brief break Friday as Gary will spend the night with Giovanna on Friday. 


Twenty – four hours later (and then some)
November 29, 2006, 8:00 pm
Filed under: Surgeries

Twenty four hours after surgery fell at 4PM on Tuesday, 28 November and all seemed well.  Giovanna was sleeping and the pain meds seemed to be doing their job.  I left to teach a Lit co-op class and the reinforcements came – aka her daddy.  Life was good.

 Until about 5:30 when some of the pain meds had worn off and Giovanna was getting severe muscle cramps.  She went a bit over the edge and Gary became familiar with her fits.  What has been happening is that she is overcome with fear and then just looses it.  There is no good way to control her at this point.  She was in this state for about an hour.  She would calm down until the next round.  Between the meds, the cramping and all the stuff that had to be done, it took until after 9 before sleep came.

But then she slept all night!!!!!

The morning was rough because of her panic attacks.  The nurse and I tried to give her a “bath” and she fought both of us for 45 minutes.  Then it came time to change her bedding.  This was impossible – so we put her in her wheel chair while that took place.  She enjoyed that, but tired after only 45 minutes. 

It took a while to figure out that these panic attacks are a side effect of the Fentinol – the drug used for pain management in her IV drip.  Not only that, but she is itching because of the meds as well.   Normally it is easy to get her to focus and listen.  Once she knows what is going to happen – she is OK.  Not on this medication.  I have talked with the nurses about changing the meds – but they are resistant and the doctor said she will be coming off the medication soon.  So for now we continue on.  Please pray for God to give peace and victory over these panic attacks.

Wednesday – 29 Novemeber

Today was the day that the dressing was removed and Giovanna saw the fixators for the first time.  She absolutely paniced.  So they were covered up with the sheet.  After about 45 minutes she calmed down. 

Later in the day, it was time to clean all the pin ports.  This was a very loud ordeal.  Even with the door closed, you would have thought we were killing this little peanut.  She was told multiple times that the more she wiggled, the more pain she would feel.  This little fiery girl was not to be detered from her fit.  I was supposed to be watching and learning how to clean these ports and ended up holding her down so that we could get the job done.  Bribing did not help!! I was told that she fought harder than most and to expect her to fight longer than most.

Continue to pray for her – physical therapy will start tomorrow.  This will be painful and the decision to take her off the pain meds may rest on how she does with the therapy.  From what I have seen so far – it doesn’t look promising that it will be a quiet appointment.  If she is unplugged from all of her tubing – she will go to the rehab room – if not we will do it in her room.  Her adapted wheel chair will be back tomorrow and she can begin to go for walks within the building. 

Many have asked how I am holding up.  Today was the first time that the reality of the post op care began to sink in.  I normally am not bothered by bone things, but seeing the fixators and the number of pin ports that need to be cleaned daily, I was beginning to feel overwhelmed.  I also began to understand a bit what it must have been like for God to see his only son suffer and die on the cross.  It is never easy to watch your child suffer and my heart was torn between knowing that this was for her good and God’s glory and breaking as I saw the fear in her eyes and heard the screams of terror.  Pray that I will feel God’s continual presence and sustanance throughout the next months of the post op care.

It has been wonderful to have so many come and visit.  You have all been very kind and generous with your time and offers of help to us here and to those at home.  My heart is overcome with gratefulness and thanks.  It is comforting to know that Giovanna is being covered with prayer from Florida to California. 

God has indeed been good to this family during this time.

Ilizarov – the sugery and post op
November 28, 2006, 7:54 am
Filed under: Uncategorized

We arrived at the hospital a little after 8 AM on Monday 27 November.  It was overcast and Giovanna’s biggest concern was that she was missing breakfast.  It was easy to pack for her stay at the hospital – she would only need something to come to the hospital in and to go home in.   Otherwise she gets to wear those lovely hospital gowns that never fit her petite little body!!!

Once we got to the pre-op holding area, Giovanna began to let all of us know that she was not up for this.  When they gave her the drugs to help her begin to fall asleep, she fought off the drowsyness for about 45 minutes.  In her mind, if she did not sleep, surgery could not begin.  However after being held in my arms for about 20 minutes, she finally began to drift off.

Dr. G came in during this time and he went over which bones he was going to cut, where the rings would be, etc.  Only the bones in her foot were going to be cut – not the tibia or fibula.  This was a great blessing.  Dr. G predicted that the surgery would last about 2-1/2 hours.

Four hours later when Dr. G came into the parent waiting area, his first words were, “Well that was harder than I expected.”  However, he went on to say that the x-rays looked good.  The reason the surgery took longer was that he got the foot into the position he wanted to start the process, only to find that the skin wouldn’t close over the wound.  So he had to go back in and redo everything to get the skin to close properly.  This means that it will be at least one week post op before any lengthening will begin.  There needs to be ample time for the skin to heal before we begin to stretch anything.

For pain management something like a spinal block was given – it worked great up until midnight.  Then the pain kicked in along with muscle spasms.  Some how the record of where I was in the parent section of the hospital were misplaced and Gary received a phone call asking where I was.  Once I was found, even though I didn’t know I was lost, it was a long night.

Giovanna had a lot of pain and the meds didn’t seem to help.  It took until about 4 AM to realize she was having muscle cramps and that required a different medicine.  She finally quieted down around 6 AM and I went back to my room – not intending to sleep – but went into a deep sleep until 8:30 when I was called back again to her room.  She was given something different for the muscle spasms and now the goal is to stay on top of the pain, rather than wait until the pain is really bad.

The parent room is really nice and I am told that one sleeps well.  I think I would have slept well, if I had been there all night.  It was nice to be able to get at least a few hours of sleep before the pain kicked in.

One of the things that I became profoundly aware of was the power of touch.  The Ilizarov was performed on her left leg -which is where the cramps were.  I was rubbing her right leg and it made the left leg feel better, at least according to Giovanna.  Once Giovanna heard my voice and I could touch her, she would calm down.  Which was a good thing as the nurses and on call doctor had to change her dressing a couple times during the night on her foot.  She had been bleeding, which is common from what I have been told, but the on call doc seemed to think it was more than normal.  The incision was where most of the bleeding was coming from and so a pressure bandage was applied.

Sixteen hours out from the surgery and she is calm, relatively pain free and doing some lacing cards.  She finally feel asleep.  Now it is time to eat and then onto getting a shower.

Please pray for the following:

Pain management.  This will be a huge thing over the next 2 days, which are the worst with respect to pain.  The goal is to stay on top of the pain with the meds so as not to have to go through the wailing.

Also pray that Giovanna will understand that when something needs to be given through the IV port in her arm, it is not painful.  This morning when we tried, she was screaming that it hurt.  She did not understand that it would not hurt.  She has been fighting against those things that could help her, thus making things worse.

Also the bleeding needs to be controlled.  It has slowed done, but I have not gotten a good look at it this morning.  Dr. G did not seem concerned, but then he didn’t get a good look either as she was a bit loud when he was in the room.

Thank God for his provision of a room for me to stay while here.  I did not have a chance to call the week before, since I was in pearlington.  However there was a room open and it is open for the entire stay – which could be up to 2 weeks.  The bill for this room and my meals will be picked up the the local Shrine chapter.  God takes care of all those details.

It has been rough, but there is also hope.  It would be easy to fall into despair in the wee hours of the morning when Giovanna is in such terrible pain.  However I have been reminded that in the end, it will be worth it.  The words to a song kept coming to mind early this morning – “when satan tempts me to despair, upward I look and see him there.”  My eyes are fixed on the cross and the work of Christ.  Pray that I do not take my eyes off of Jesus.

November 18, 2006, 3:28 am
Filed under: Brief Introduction

Welcome to Fearfully and Wonderfully made.  This site will have the story of a little girl who was made – not with a perfect body, at least by human standards.  Her body complete with all of its “defects” was knit together by the master designer for a purpose – which is yet to be revealed. Her story is amazing.  It is a testimony to the fact that God works all things together for His glory.  Come back and read more of her story.

Ilizarov . . . .Coming Soon
November 17, 2006, 11:30 am
Filed under: Surgeries

In a little over a week, Giovanna will have surgery.  The procedure is called the Ilizarov, after the Russian doctor who invented this technique for lengthening bones. 

 For Giovanna, her left heel is about 1-1/2 inches from the ground when standing on her bare feet.  She walks on her tippy toes, which is not the way God designed the human to walk.  For her it is like walking with Shin splints all the time.  While we knew that there was a surgery looming on the horizon, the surgeon had hoped to put it off for another couple years. 

Over the summer, Giovanna began complaining about leg pain – mainly in her left leg.  There were days where it seemed to bother her enough that she would rather sit quietly than to be moving about. 

When we went in for her 6 month check in October and I mentioned the pain along with the fact that we might want to consider a wheel chair for long distance days, he said that the time had come to do this procedure. 

The Ilizarov is named after the Russian doctor who worked in Siberia during the war in 1944-45.  Dr. Ilizarov used bicycle spokes to treat fractures and found that the best way to treat a fracture is to pull the bone apart – not put it in a cast.  So he began to operate where the bone was not broken and pull the bones apart.  Thus causing the body to lay down more bone and heal stronger.  Today the procedure is used to treat club feet, limb length issues and more. 

When the bone needs to be lengthened, a cartiotomy is done to crack the outer bone.  The doctor wants a clean break, but also wants to spare the bone marrow and the blood vessels are kept in tack to feed and nourish the regenerated bone.  Wires are inserted through the bone above and below the break and pulled through the muscle tissue and skin.  These wires are then attached to pins or clickers on the outside in such a way as to have tension and form a circular ring around the leg.  This forms the framework in which the bones are lengthened.  Over a period of time, in Giovanna’s case, 12 weeks, the pins/clickers are pushed to lengthen the bone at a rate of 1 millimeter per day. 

Once the bone reaches the desired length, the bone is then casted for a period of time to allow the bone to harden

So this is a rather intense surgery.  It is not entered into lightly.  Giovanna has already had 2 failed surgeries on her left leg.  Our surgeon has performed this procedure around 200 times with good success.  Will it make everything perfect?  No, but it just gives her a better chance at walking normally with no long term issues.