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I'm afraid it might have been a bit deceiving. I didn't feel, because of privacy of the family, that I could share more. I have edited the updates a bit just to protect the family.
I started receiving updates from Victory Morgan's grandmother on the 14th. That's nine days after the link I shared yesterday. That's a long time in a situation like this. Between the 5th and 14th, Morgan starts having what are known as "storms." The best description of just what a "storm" is is found in the information on 10/16/2011 (below).
The day before was a difficult day. "The neurologist wanted to make sure that Morgan's storms were storms, not seizures; so they removed the ativan, and increased the seizure medications. The neurologist wanted to remove the medication regulating his heart rate....they would allow the trial for 24 hours, but if his heart hate went above 160....Morgan would get morphine....The trial results at the end of the day were that the storms most likely not seizures....
"Morgan cried again yesterday....It is rather heart rending....[One of the doctor's said this was a] time to rejoice."
"It is amazing to be witness to the outpouring of love, prayers, and continuing support.
"They removed Morgan's EEG leads on Friday and see no signs of seizures. Morgan continues to storm through the day with about two hours of storming and one hour of rest. Morgan's Team does not want to stop the storming, just control his heart rate; which was often going over 160 (average for Morgan's age is 80 to 120). They have administered medication to control the heart rate,which the Team is now reducing so they can see if using a using a muscle relaxant will help relieve the stress on Morgan's limbs and muscles. During a storm all the major and strongest muscles contract, contorting his body into a backwards 'C'. The Physical Therapists and Occupational Therapists have trained [Morgan's parents] to help Morgan stretch his leg and back muscles.The Speech Therapists have created splints for his hands....
"Friday night to Saturday morning Morgan slept 10 hours with no storms! He went to slept at 8:30 pm to 6:30 am last night without a storm. Today Morgan's Team have decide instead of waiting 15 minutes to see if Morgan self-soothes they will administer morphine after 5 minutes to see if they can give him longer rests between storms. [Morgan's parents] have a deep faith that Morgan will be fine, and everyday Morgan works harder to fight back! Morgan's Team is so pleased with his progress; Morgan continues to surprise them everyday.
"The EEG's continue to show normal patterns in some areas of the brain. We are all so encouraged with blessings and answers to prayers we receive each hour. Morgan's Team appreciates your prayers in their behalf, they really have no data on children and storming. There are very limited documentation on storming in adults."
"This has been another miraculous day for Victory Morgan! Morgan slept for 11 hours last night! We pray this will become a habit, so he can heal. Morgan had one storm today, and spent the rest of the day listening to stories and music. He had one dose of morphine or was more alert. He is relaxing his arms, folding them across his chest. He pulled up his knees and relaxed them down a couple of times (not in a storm).
"Friends are still working on the trust fund. If you would like to make a donation at this point for Morgan's health care please make the checks out to Victory Morgan Eggleston and mail to:
Victory Morgan Eggleston
11487 S Cinega Dam Pl
Vail AZ 85641-9073
"Thank you again for your prayers and support. We know that they make a difference!"
"[Morgan's parents] had another piece added to their burden today. [Morgan's younger brother, BT] was unable to stand up. He came to the hospital for a CT Scan and x-rays to see what was wrong. BT has the current virus, that attack the cerebellum, disrupting your equilibrium. He should be fine in 48 hours.
"Morgan's whole team (case manager, PT, OT, SpT, resident and doctors) to discuss the future....this is the first positive meeting they have had since September 26. They plan to put the G-tube (Gastrostomy Tube) in within the next few days, the surgeons feel confident that Morgan's storms will be controlled by the general anesthesia.
"The next big question is what to do about the storms. He is back to storming for two hours with about an hour's rest between storms. They have tried many combinations of medications and they are not sure what if any of these have had an affect - today they added valium, but it made no difference. They tried morphine, waited 15 minutes, added ativan, waited 15 minutes, then added valium and with no effect on the storms. So [Morgan's mother] gave him a bath and he slept for an hour, and then he had another storm so they tried morphine and valium with no effect, so they added more valium, still no effect. [Morgan's parents] asked if they could see what would happen if they administered no medications. The team agreed to try as long as it does not become life threatening (as in his pulse rate stays below 150 and his oxygen saturation levels stay above 89). Morgan has just started another storm - so you will have to wait until tomorrow for the results .
"The next steps will be the G-tube, finding medications that will control or reduce the storms, make sure [Morgan's parents] can administer food and medications, and then they will take him home until the storms cease. Then the team will do an assessment to see what he can do and find a rehab placement for therapies to complete the healing process."
"So much for the suspense... I think this is like the scary guy jumping out at you. I wish we could have the sound track music to know when to cover your face. Today was rather a rough one, Morgan had a 14 hour storm, the medications are no longer having any effect. They tried a bath, a massage, rocking, and leaving him alone, none of those therapies worked. His pulse was often 190. We began a fast for him at 7:00 am this morning; by 11:30 he was calmed down. I truly believe we are receiving blessing sent from heaven! He has continued his "normal" storm pattern the rest of the day. The medications no longer have any effect. [Morgan's parents] are totally exhausted!
"Good news [BT] is a little better, not quite steady on his feet, but able to stand. He is such a good sport about not having a mom and dad most of the time, but hey, with grandparents on call, I think he is coping....
"Thank you for your love and prayer's for our family - they do make a miracle everyday!"
"Thank you for your continued prayers. Victory Morgan continues to give a good fight! What a tough few days. Morgan stormed through Wednesday, Thursday and Friday. The only rest was an hour on Thursday when he had surgery to insert the G-tube (gastronomy feeding tube). After the surgery he stormed for 40 hours straight, with his pulse rate going to 190. Friday night at 4:00 pm Morgan's Team asked [Morgan's parents] if they were ready to let Morgan go. After mighty prayer, they decided that Morgan and they were not ready to quit. The Team administered small doses of morphine for the pain and Versed (a prescription medication approved for use as a sedative, anxiety, or anesthesia medication used before or during surgeries, medical procedures, or dental procedures). Since then Morgan has been resting comfortably....They are glad that something finally is working. That little man is one tough kid, good thing he has lots of tenacity!
"...BT, the 15 month-old brother of Morgan) is doing much better! He is such an easy going little guy - he has not minded being shuffled around, just as long as he gets some Mom & Dad time.
"Thank you to all of the friends and family who are supporting us physically, emotionally, spiritually, and financially. It is all the little things together that have made for these amazing daily miracles.
"This weekend has been hard, difficult and faith building After 72+ hours of non-stop storming, experimenting with combinations of medications, Morgan is finally resting comfortably. This is an extremely difficult journey for [Morgan's parents]. Morgan’s Team has worked diligently to bring Morgan back to life. Over the weekend Morgan developed pneumonia. [Morgan's parents] were given the option of continuing letting Morgan storm until he had a heart attack or to administer ‘comfort care’. Morgan continues to hold on to this life with great tenacity. Morgan’s Team continues to support Morgan and care for this ‘little man’.
"[Morgan's parents] have faith in our Heavenly Father’s plan for Morgan. While this experience has been discouraging they have counted themselves and their family blessed by the faith, thoughts, and prayers of so many people. To those who have reached out in their thoughts and prayers we are all so grateful for your sustaining faith and will continue to sustain us as we experience the unfolding of this little life.
"I know that families can be together forever. This is one of the sustaining principles that allow me to move forward in letting Morgan go home to a Heavenly Father who knows him and loves him. I know that the family and friends will be blessed and strengthened by walking this path with us. We look forward to the day when we will be united together again. That will be a very happy day giving balance to the sorrow of today.
"In a Facebook post yesterday [Morgan's dad] wrote, 'Thank you all for your prayers and support. Today marks the beginning of our fifth week in the ICU with Morgan. I am certain that we would not have survived the sleepless nights without you. Unfortunately, things continue to worsen but may I please ask this of you. Regardless of the outcome, if this experience has turned you to prayer and brought you closer to God as it has me--Promise me that you will not turn away from God. In his honor and with the knowledge that I will see him again someday--I will stay faithful.'
"A bless (sic) that we count is: [Morgan's mom] took a picture of Morgan and wrote about his life every day for his first year of life, these are entries are captured in a blog; then published a book called ‘Morgan 365’, which I cherish. For the next two years she maintained the blog with at least weekly postings of her family. They will find great comfort in knowing that they put their family first. [Morgan's dad] loves and adores his boys; he loves to play with them and teaches them about this beautiful world.
"Today, as [Morgan's mom] was rocking Morgan, BT came in for a bit and kept giving hugs and kisses to his big brother.
"I will continue to keep you updated as we walk this road with Victory Morgan.
"Again thank you for your unfailing faith, thoughts, and support."
10/26/2011 Morgan Update
"This is has been another day of joys and sorrows.
"Morgan’s condition has remained the same; they (sic) Team continue comfort care. Thankfully he is resting peacefully most of the time. Today he had two short storms. [Morgan's parents] explored the idea of a hyperbaric chamber, and the specialists studied Morgan’s case and came back with the sad news that it would be ‘fruitless’.
Today [Morgan's parents] were able to ‘detach’ Morgan from all of the tubes and wires and take him outside for a little sunshine. BT ran around the courtyard telling Morgan what he saw and then he would go to Morgan to give him hugs and head-butts (their sign of endearment). It is a bittersweet time. We are grateful for the time to say our goodbyes; yet we continue to hold out hope for some other choice. We feel enveloped in love from angles both Heavenly and Earthly!
"I know many of you are wrapping your arms around our family! There truly are not words that can express the comfort that we feel as you support us during this difficult time."
Today: A Note from Morgan's Grandfather
"At this point, Morgan is just being kept comfortable, I'm praying for [Morgan's parents] and Morgan's brother [BT]. For Morgan I'm praying he will feel no more pain as he prepares to be with his Father in Heaven. I'm not sure what else to do. I'm thankful for the memories I have from his short life. One just can't or imagine ones grandchild proceeding them from this stage of eternal life."
Again, I'm just begging that you would keep this family in your prayers as they say good-bye to their son. I have included the address for Morgan's trust fund, so you can donate if you wish to. I know it would help the family greatly.