Heal Nick

I hope Nick is doing well! I hope you are ALL doing good!

:-) Tracey M. (remember from the Gap)

I reported last Sunday that Nicholas was 95% back to his pre-surgery base-line. This was a bit exaggerated. Realistically, he returned to 85% and it will probably be another 2 to4 weeks before he’s back to normal, after which we’ll really be able to determine the positive effects, if any, of the procedure. At least with the surgery, we will have given him a chance to further recovery and progress.

The sutures and staples were removed on Friday without issue. All incisions have healed.

At the insistence of his sisters, Nicholas was given a buzz cut to balance out the part of his head that was shaved for the procedure. He looks terrific.

Again I’m making an appeal to any friends within striking distance of Manchester-by-the-Sea to stop by for a short visit. I know he’s bored with us and needs some relief and inspiration. We can only do so much in this regard. It’s up to you to provide some much needed distraction from the every day routine. Thanks.

Nicholas is in full recovery and about 95% back to normal physical functionaility. I consider this a sign of good things to come. Mentally he does seem more alert and his sense of humor has finally returned. It’s great to see him really smile and laugh and we should all take a lesson from this.

Nicholas was given the all-clear by both his neurosurgeon & neurologist this morning & finally discharged at 6:30pm this evening. The effect of the residual anesthesia is very evident in his inability to get around (walking, eating, etc.) & Nicholas is experiencing a great deal of difficulty doing these & other simple exercises. However, he should be back to his normal functioning self in several days. As the neurosurgeon stated this morning, “the brain often gets angry when we stick things into it". It does take a few days for the brain to resolve any surgical trauma. The neurologist believes any improvements resulting from the surgery will start to become evident in a few weeks and, hopefully, continue to develop. Now, we just wait to see what the outcome really will be & be sure the incisions heal properly. We also have to be extremely careful to avoid infections, as bacteria love to colonize on anything foreign (the shunt) introduced into the body. Having experienced the last few days and depending on what happens over the next few weeks, the family continues to be confident this was the right thing to do for Nicholas.

Thanks to everyone who took a moment to send their positive energy in Nicholas’ direction on Tuesday afternoon. We know it helped. As a point of interest, at 3pm, when he was scheduled to go into the OR and was napping in the the OR waiting area, he suddenly opened his eyes & was wide awake. The mind sparks hit their mark!

All’s well. Nicholas had a couple of short post-op seizures this morning but the doctors are not concerned. The CT Scan indicates the shunt is in position & working as it should. As a precaution he is spending at least 1 additional night in the hospital. Tomorrow (Thursday) he will be evaluated & discharged, unless he needs additional days of observation. When we left this evening he seemed to be quite alert & finally emerging from the anesthesia & pain sedatives. I’ll have another update tomorrow.

Thanks, Pamela, for the update. Hopefully, Nicholas will be discharged tomorrow. Once we get home, I’ll be posting a more detailed report on today’s proceeding.

We are so relieved that the surgery is behind him. Thanks for the posting Pamela- go Nick!!!

To those of you wanting to know the play by play.. N is out of surgery and recovering nicely in the ICU. He’s alert, responding to commands, excellent and stable vitals and a wee bit groggy. YAY!
xoxo pamela

Nicholas is scheduled for a surgical procedure, insertion of a Ventriculoperitoneal (VP) shunt, on Tuesday, May 15th in order to relieve hydrocephalus. Assuming there will be no complications, he will be discharged to home within 24 hours of the surgery and it should be life as usual.

“Hydrocephalus, sometimes known as Water on the Brain, is a condition in which abnormal accumulation of cerebrospinal fluid (CSF) in the brain causes increased intracranial pressure inside the skull.”

The decision to do this was made a couple of months ago based on the strong recommendations of both his neurologist & neurosurgeon and backed by second opinions. The procedure probably should have been performed when he first arrived back in the U.S. In fact it was scheduled & cancelled due to an infection and for one reason or another never rescheduled. The risk level, although minimal, is somewhat elevated due to certain conditions present in his cranium. However, Nicholas’ recovery progress now appears to have reached a plateau, and this is the next logical step in the process.

The anticipated positive results are improved walking ability, balance & physical spontaneity. The chance always exists there will be no noticeable changes. There are no expectations for cognitive improvement, which will only come with time.

Authorizing the surgery was an agonizing decision to make. However, I am absolutely convinced it is the right thing to do in order to give Nicholas every possible chance to improve and continue his recovery. I know if Nicholas were able to make his own decision, he would say, “Go for it!”

Hello to Nicholas’ world…

So I’m sure most of you will remember that while N was in the ICU in New Zealand we had weekly global mind sparks/meditation or whatever else you chose to call it. Well, let’s do it again. As many of you know, Nicholas will be going in for surgery on Tues May 15 to have a shunt (drain) placed in his brain to help manage his fluid levels. Our hopes are that this operation will improve his balance and overall mobility. I’m sure my dad will post more on the details.

Anyway my purpose here is to unite all our energy again and aim it at a sucessful operation and positive outcome. The operation is this Tues, May 15 at 3pm (EST). So light up your mind sparks and send them to our boy who will be at a hospital in Boston. A short hospital stay of about 24 hrs is expected with direct discharge back to home.

Love to all,
Pamela

Nothing out of the ordindary to report other than, perhaps a little frustration now and then. My feeling is Nicholas may get bored with the same routine from day-to-day and week-to-week, even though he has no real short-term memory. With the good weather and a chance to spend time outside it would be a great time for his friends to consider dropping by, especially on the weekends, and it would certainly help adding some variety to Nicholas’ days.