Addesa Family Update, August 2007

It’s Tuesday evening and instead of being home in Chesapeake, I am here at UVA. When I spoke with Lisa Monday morning, she was emotionally drained from Noah’s withdrawal symptoms from Valium. I immediately packed up the truck and came with Emma. Sunday night was very hard for Lisa and Noah. There is no need to be graphic here, but suffice it to say that Noah and Lisa had a very difficult night.

When I arrived I gave Lisa a "leave" to go with Emma and get away for a while. I spent the day with Noah navigating some rough waters with him. As the day progressed however, he seemed to be responding more positively to his new medication regime. Later Monday afternoon Lisa and I met with the chief-of-staff and made the decision that if Noah’s symptoms did not significantly subside by that evening, we would not let him suffer more but put him back on Valium and chart another course from there.

As an aside to this, good friends of ours who have been a great blessing to us who likewise had their daughter at CHKD for disability issues and they used Valium with their child as well. She became addicted to it and they too went through some very difficult times. Ultimately, this family made the decision to reduce her Valium while simultaneously introducing methadone to replace the former. It took them six months to finally wean their precious baby off that regime.

Noah did wonderful last night. He slept soundly through the night and even well into the morning (8:30ish). We decided to stick with his rehab schedule and see if this storm had passed.

My reason for detailing this is because many of you have been praying for Noah’s addiction to be broken. As best as I can tell it is history. We took Noah through every rehab session and even had him in the pool today. I will include pictures when I return. When I retuned to my room this evening, he was doing great!

Thank you for interceding for Noah. My family is deeply indebted to you all for your sacrifice. On Friday I will add more detail about his current progress. Love…Pastor David

Last Updated: August 1, 2007 at 11:30 a.m.

Next update will be posted August 3, 2007 by 4:00 p.m.
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I am pleased to say that Noah has continued to show no further signs of withdrawal from Valium. The pictures I have included this time is Noah’s last rehab session of each day in the pool. You will note that a rehab specialist and his assistant who work with kids in the pool are supporting Noah in the water. (Please pardon my armature photo skills.) The focus is to get more flexibility and stimulation to his various muscle groups. The other is just one of those “mom” moments that is hard to describe. He “speaks” through his eyes.

 

As I close out my week with you while thinking about the battles that have been won and others that have yet to be faced by Noah, I think of a parallel story of conquest in the scripture. Deuteronomy 7:21, 22 “No, do not be afraid of those nations, for the Lord your God is among you, and he is a great and awesome God. The Lord your God will drive those nations out ahead of you little by little. You will not clear them away all at once, otherwise the wild animals would multiply too quickly for you.”

“Little by little” is not what most of us would choose. (Believe me, I am in that camp.J) Yet each conquest Israel had was intended not only to give them the promise of God for their lives, but also to be a testimony to their children of the faithfulness of God. Noah’s progress is similar. We observe improvements in his muscle flexibility in his feet, legs and hands. The response to commands to pick up small objects with his fingers on his right hand is improving. In conjunction with that is his improving ability to extend his fingers out to knock over small objects. This is the more difficult of the two motions of “contracting” and “extending” those muscle groups. Swallowing has improved as well. Noah periodically gets small amounts of different yogurts.

One thing we are pleased to hear is his increasing vocal attempts to talk. They capture our heart every time he attempts one. Noah’s smiles are blossoming ever so little every day. Those too captivate your soul.

If you are fighting these battles with us in prayer, please pray specifically that God would heal and restore all the brain tissue in his basal ganglia. (http://en.wikipedia.org/wiki/Basal_ganglia ) This seems to be his greatest challenge right now. It is Noah’s “Jericho.” That would be a huge conquest to establish Noah in his promised land. Our love to you all… Pastor David

Last Updated: August 3, 2007 at 12:30 p.m.

Next update will be posted August 8, 2007 by 4:00 p.m.
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The last two Tuesdays have been a challenge. I was not planning to be here at UVA for either, yet here I am. Last week it was Noah's Valium withdrawal battle and his ultimate victory. Today was somewhat more challenging. Early Monday morning Emma called me very distraught explaining to me, in very emotional tones, that Noah had stopped breathing and that he "coded." Needless to say we had some extremely intense moments in my home trying to ascertain what exactly was going on.

I immediately came back up to UVA Kluge to be with Lisa and Emma and Noah. They took Noah over to the UVA Medical Center PICU by ambulance. I would be disingenuous by not admitting that I was shocked by this turn of events.
It is now 8:45pm and I am very happy to tell you that Noah has had a good day. What occurred this morning remains a mystery. There are a few theories being floated by the medical team. I stress "theories" because there are some definite conflicting data. Noah's Pulse and Oxygen monitor registered very low oxygen levels for a period of about nine minutes. It dropped so low that they "coded" Noah and the whole unite responded immediately. The numbers recorded on the machine would have put Noah in an unconscious state with blue skin tone. However, Noah's physical appearance did not show this kind of respiratory distress. His color remained "pink" and his heart rate stayed normal. The nurse on duty was convinced that he was not breathing and "coded" him.

Whenever someone is "coded" it is very serious. By the time the paramedics came to transport Noah to the PICU, he was showing no signs of any abnormality. They decided to send him over to the UVA PICU to run some tests just to be sure. We observed him all day and he was simply " Noah" to us all day. The doctors are somewhat mystified. It is now 11:45am Wednesday and we are expecting Noah to be transported back to Kluge sometime today. As of this entry they have not given us the results of the EEG, EKG and blood tests. Unless these tests show something definitive, I am persuaded that there was a combination of equipment error and operator error. I shall leave it at that. Whatever the cause, we remain thankful to God for Noah’s good health. Heartfelt thanks to all of you who interceded. Love... Pastor David

Last Updated: August 8, 2007 at 12:30 p.m.

Next update will be posted August 10, 2007 by 4:00 p.m.
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Because of the intensity of this week's events I have received calls concerning Noah's status and the outcome of his tests. I have sent this to the office to ease any concerns of those who are tracking Noah's journey.

Noah is fine. He shows no signs of having had any serious respiratory distress. His blood work, urine, EKG and EEG were all good. The mystery continues. Nevertheless... the Lord is good. Love... Pastor David

Last Updated: August 9, 2007 at 9:15 a.m.

Next update will be posted August 10, 2007 by 4:00 p.m.
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Today Lisa and I had the bi-weekly (every two weeks) Interdisciplinary meeting with medical and therapeutic staff involved in Noah’s care. It was interesting to hear the ideas and/or theories being floated as to why Noah was coded on Monday. The chief-of-staff has told us he is not satisfied with “mysteries” and is going to continue to dig deeper. At this point I have rendered my meager opinion already. It’s time to move on.
One very fascinating fact emerged today from the staff that I was unaware of. When they coded Noah he did what he normally does when people alarm him or startle him. (By the way Lisa was taking a shower at the time back at her dorm room so no one who “knows” Noah was present.) He clenched his jaws, closed his eyes and would not cooperate with any attempts to open his mouth.

Since the nurse on duty never had Noah as a patient until that night, she was trying to “bag” Noah and he would not open his mouth. The medical team decided to give him a drug to relax him so he would open his mouth. It worked and he opened his mouth. Here is what is fascinating. When they decided to transport Noah Lisa went ahead of the paramedics to get some things to bring with her to go to the UVA Medical Center. When Lisa walked out the door, both paramedics and the attending nurse said that Noah said “ Hi mom” with distinct clarity. When he said it they all looked at each other and wondered what just happened. When the medical chief of staff told us that today, he recounted how some patients with similar brain injuries have done similar things when in a “relaxed” state. He assured us that this was very significant and possibly a portent of things to come. I would disagree slightly with his prognosis. I would remove the word “possibly”. For us, it is a portent of things to come.

We still do not have confirmation of any extended stay for Noah from the insurance company. The entire staff is recommending a four-week extension and the physician in charge said, “frankly I will appeal this if he is denied. I believe Noah has shown significant improvement here and our work is not yet completed”. As the week comes to a close I offer the words of the Psalmist to you as reminder of our ultimate dependence for Noah’s day’s ahead: Psalm 103:1-3 Bless the LORD, O my soul; And all that is within me, bless His holy name! Bless the LORD, O my soul, And forget not all His benefits. Who forgives all your iniquities, Who heals alll your diseases. Love… Pastor David

Last Updated: August 10, 2007 at 9:30 a.m.

Next update will be posted August 15, 2007 by 4:00 p.m.
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I spoke with Lisa tonight to ascertain any “notables” to convey to you our extended family. Based upon last week’s challenges, the medical team asked permission from us to administer Vercet to Noah this past Monday to see if he would repeat his momentary “talking episode” that I reported to you last week. We agreed to it and they gave Noah a small dose. Lisa said that he simply looked around the room at the medical team and drifted off into a relaxed state. I am not surprised at that response, as Noah has demonstrated his personality numerous times in recent weeks. He exhibits shyness with people he is not familiar with.

Noah continues to exhibit intervals of improvement that signify to us he is emerging from his world to ours. One of the nurses that have rotated shifts with Noah who has not seen him for a week commented to Lisa how different he looks. His alertness continues to intensify. His attention is becoming more concentrated. He is more freely expressing emotions of pleasure and discontent. Lisa noted that his speech therapist tried feeding him applesauce yesterday, and he made it “expressively clear” that he does not like applesauce. Showing such preferences is actually a good indicator that more choices are being made rather than simple passive responses.

Noah is able to take pieces of a puzzle with his first three fingers and pick them up, move them and release them. The “releasing” is most significant. When describing Noah’s progress to me last night, Lisa concluded by saying; “ I can’t explain it…like Noah’s nurse observed…you just have to see him to understand his progress. I can tell he is connecting with me at a different level. I sat and talked with him for a long time last night. He never lost interest in our conversation and his facial expressions told me he is not only listening to me…but he cares about what I am saying. It’s really neat David”

I plan to travel up there today to see for myself. I think of Noah when I think of this text: Psalms 42:7,8 “Deep calls to deep in the roar of your waterfalls; all your waves and breakers have swept over me. By day the LORD directs his love, at night His song is with me.” Love… Pastor David

Last Updated: August 15, 2007 at 1:21 p.m.

Next update will be posted August 17, 2007 by 4:00 p.m.
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Noah has had a very good week. When I arrived on Wednesday, the Interdisciplinary team meeting was somewhat "spirited". For some reason our insurance carrier has not issued a definitive extension for Noah, so that seemed to provoke some concern from two of the attending physicians. They are convinced Noah needs to stay longer and are willing to lobby for it. Lisa and I are at complete peace with either outcome.
My comments from Wednesday about Lisa’s observations regarding Noah’s growing alertness and concentration once again became a firsthand experience for me. Indeed he is improving significantly from my standpoint. I have spent a few hours alone with Noah today and it was a delight.

On Thursdays there are various dog owners that come through Kluge with their trained dogs to bless the kids here with moments of joy. Today was especially exuberant for Noah. The dog that came with her master was a blonde lab (Bagel is her name) that took a liking to Noah. The owner gave the command for her dog to actually "jump" up in Noah’s bed next to him and the result was…well…really sweet. Noah broke out into some smiles that would warm the hardest of hearts of anyone witnessing this moment. Word spread around Kluge to such an extent that the doctor making his rounds later in the day came in and said; " I heard about Noah’s smiling response to the dog that came today" Good news travels fast around here.

Unfortunately we were not able to capture the intensity of his smiles however I have included some moments right afterward that still had a residual tone of the joy apparent in his face.



You will notice Noah being "bare-chested". Reason being he is laying on his side in his bed taking a break in between therapy sessions. What you are looking at in this photo is the latter part of his smiling moments. It was really special. Looking at my son smile like that is simply amazing and so heart warming that I have not the words to describe it.

Finally Noah’s presence here has allowed Emma & Lisa to touch other lives. A lady whose son is here was for weeks very cold and distant toward us. However in recent days she has opened up to them both and even asked Emma to go into town with her to shop because she did not want to be alone. Last night as I was leaving to buy some fast food for supper, Emma and I passed her as asked her if she would like something to eat. With a smile she said yes.

Proverbs 25: 21-22 If you see your enemy hungry, go buy him lunch;
if he's thirsty, bring him a drink. Your generosity will surprise him with goodness, and GOD will look after you. (Mesg)

What a joy and an honor to serve our King this way. Pray for Tay-Tay (that is her name tattooed on her arm). We would love to see her in The Kingdom before Noah leaves. Love…david

Last Updated: August 17, 2007 at 10:33 a.m.

Next update will be posted August 22, 2007 by 4:00 p.m.
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We had an intense thunder and lightening storm for an extended period last evening so I was not able to use my computer. Therefore please understand that this entry is very brief as I am on my way up to UVA this morning.
We were told late last week that Noah will be discharged on or about August 31st. Lisa and I are at peace with that. At this point our expectation is that Noah will be home with us. I will have more detail about what UVA is recommending for continued therapy when we sit in on the Interdisciplinary Team meeting this afternoon.

In brief, Noah continues to improve in motor skills, alertness, response to therapies and most enjoyably…his emerging personality. There is a three-month-old Hispanic baby that is simply a sight to behold. She looks like she was fashioned by the angels themselves. Beautiful thick black hair, olive brown skin, eyes so brown they almost look black. She is so petite that it looks like you are carrying a doll in your arms when you hold her. She is at UVA for feeding and digestive rehab. Apparently her parents are not able to visit her so the nurses and staff are the baby’s only source of nurturing during her stay there.

The nurses have decided that she and Noah are an “item”. They bring her in Noah’s room throughout the day for two reasons. The little baby loves to lie next to Noah and shows delight in touching him. I suspect the next reason is probably the main motivation. When they bring her up close to Noah’s face, he breaks out in a smile that electrifies the entire staff. Lisa told me they are simply magical moments.

Even in his recovery state Noah is bringing amazing joy to a tiny baby that is alone, and a staff of medical professionals who have grown to love him. God’s grace is all over our son and I thank Him for the influence Noah is having in a place where despair and hopelessness abound. His journey back to us glistens with Heaven’s glory. God is good all the time. Love…david

Last Updated: August 22, 2007 at 3:55 p.m.

Next update will be posted August 27, 2007 by 4:00 p.m.
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Tonight my mind is echoing the expression “the home stretch” as I think about what the close of this week will bring for the Addesa’s. It will be four months since Noah was struck by lightening. He left this property lifeless in the haze of paramedics attempting to resuscitate him with family and friends wondering if he would ever survive. Noah will return here this week not simply alive, but well on his journey back to us in the quest for the fullness of heath God intended for Noah the day He created him.

In preparation for his return to our home, UVA required that two of us be certified care givers for Noah’s continuing rehab here at home. Lisa and Emma have completed that training and are ready to care for Noah the moment he crosses the threshold of our home. We are excited about his return and full of faith that Noah will complete his road to restoration here.

This Friday past I took Noah to his rehab sessions and one in particular was a “breakthrough” time for he and his therapist. As most of you know, Noah is on a G-Tube feeding regimen because he has not been able to chew and swallow in the manner that you and I take for granted. Unbeknownst to me, our chew-swallow response is one of the more complex neurological functions in our body. Noah has swallowed teaspoon size quantities of water but not on a consistent basis. Friday something “awakened” in Noah when the therapist asked him if he wanted to try some vanilla pudding, he indicated yes. He not only tasted it, but he ate about 1/3 of the container (over an ounce). She was really amazed as was I. Since that time, Lisa said he ate about half of a slice of cheesecake they had last night. Go Noah! The goal to is introduce foods that are soft and pleasurable to him and then work our way into more balanced nutritional foods. This will be that last of any “life support” aid that Noah has required. I await the day when that G-tube is history.

I still do not have the rehab scenario for Noah once he arrives here this weekend. Last I was told UVA was requesting in-home therapy from the insurance carrier. I will update you when that becomes clear. As I close this evening, we are mindful of Noah’s increasing animations through facial expressions, in particular “smiling”. Hannah has been very busy with college and working of late and has not been able to visit Noah as much as she would like. When Hannah called UVA to touch base with the rest of the family, Emma held the phone up to Noah’s ear so that Hannah could talk to him. Emma said, “Dad, It was amazing…. not only did he smile… but he smiled so much that his teeth showed! Dad, I couldn’t believe how big his smile was.” Needless to say that was a huge blessing to Hannah and of course to us. Its one thing for him to smile when there is a real presence of someone communicating with him in his room, it is even more significant that he would instantly recognize Hannah by voice and then respond with such glee. I leave you with a glimpse of Job’s relationship with God in times of trouble: Job 8:21, “He will once again fill your mouth with laughter and your lips with shouts of joy.” He is good. Love… Pastor David

Last Updated: August 27, 2007 at 10:33 a.m.

Next update will be posted August 31, 2007 by 4:00 p.m.
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It is Friday morning and we have had our first night as a family, here in our home since April 27. Even Lucy, our dog, is overjoyed. The transport company was delayed by three hours so we did not even arrive until late yesterday. Noah had some nausea from the 3-hour trip, but for the most part all went well. We have three months of “stuff” we have accumulated in the two “homes” Noah has had for the duration so today will be a day of unpacking and organizing.
Leaving UVA Kluge was very emotional for them and us. Therapists and nurses were sad to see us go. One of the nurses wept openly over Noah’s departure and others did their best to restrain themselves. One of Noah’s primary physicians was hugging Lisa after we put Noah in the Van, and he too wept on her shoulder and mine. He said he would like to come down here with his wife and visit. It was a far cry from the usual “sterile” relationship we have been used to with health care professionals. Noah has left an eternal imprint upon the people of UVA Kluge.

The “home stretch” begins today. I could not help but utter to some of the more intimate friends we made at UVA Kluge that, “One day I will bring Noah back here walking and talking so he can thank you himself.” I believe that… No, let me say… I “see” that like an artist sees a fine marble sculpture while looking at a piece of unfinished stone. Noah is God’s handy work, and He always makes things that bring honor to His Name.

There is much to do the next day or two, so I will be able to give more detail about Noah’s progress after a few days of interaction take place between us. I have not been with him for a week. In the meantime, Lisa, Hannah, Emma, Noah and I thank all of you who have been interceding for Noah. Your prayers have brought him home; I would beseech you to finish the course with us in the “Heavenlies”. Love… Pastor David

Last Updated: August 31, 2007 at 10:06 a.m.

Next update will be posted September 3, 2007 by 4:00 p.m.