Saturday, May 19, 2012
DH, DD and I took Nelson to see his brother today. Their sister, Reyann, also came in from Harrisburg to visit (she lives with her dad).
Merrill has made great progress this week. He is walking but his balance is off and he needs to have someone with him at all times. He is talking a lot, although sometimes he is having a different conversation than the rest of us. His longer term memory is fine - he remembers all his family and friends. He has trouble remembering events from day to day as well as the names of the various personnel at the rehab facility.
There is no prognosis yet. They told my niece that the team meets every Tuesday to discuss the patients and their ongoing treatment plans. However since Merrill will have just been there for a week this Tuesday they are not sure they will be ready to discuss his case yet. Someone told her 3 to 6 weeks at the facility and then more rehab on an outpatient basis, but that was just their opinion based on what they have seen with other patients.
My only real concern is Nelson. I found out on Friday that he has a 1/2 day of school next Friday, which means I will be working at home that day to pick him up early. I wound up getting in touch with his teacher, because I realized there may be other 'end of the year' things going on that I was not aware of. I am afraid he will miss out on a few things that occur outside of the school day but I am going to make every effort to be there for his Memorial Day "play" this coming Friday and his "graduation" from the Y program next Friday.
Nelson's last day of school is Thursday June 7th and my niece has not made any plans for summer camp, etc. We discussed it tonight and I told her to see if there is still space in the Y's summer camp program at his school. It will run from 7 AM until 6 PM so I would be able to continue to keep him at my house in the event that Merrill is still in rehab. I hope they have room.
Reyann, Nelson and Merrill
Friday, May 18, 2012
Still nothing to report. My niece says that all the therapists get together on Tuesday to compare notes on the individual cases. We hope to have some idea as to what the plan is then.
It's been a long week and I am tired and very cranky. I am just going to call it a night.
Thursday, May 17, 2012
No news on Merrill - they are still doing assessments.
I got a phone call last night from UPMC (University of Pittsburgh Medical Center). Many years ago I took part in a study on depression. As part of the study, I had a health exam and they did a sleep study. Now they are doing a follow-up on the study, looking into the effects of depression on the cardiovascular system. Did I want to participate?
The first week I will have a 4-hour appointment. Blood will be drawn (only invasive procedure), forms will be filled out, history will be updated, and I will get a wrist monitor and a pedometer to wear for about a week. The following week I will do a sleep study with full monitoring the first night, followed by an EKG in the morning. The next night I will sleep without the monitors and then have fasting bloodwork done, followed by an echocardiogram and "other tests only done in research, not by regular cardiologists". I will get a complete copy of the report when it is done (not usual in research studies) and they will send the results to my doctor if I'd like. I will also be paid $200 for my time.
I said yes and last night I was really excited. Today I am a bit nervous...what if they find something. It's all good right? If they find something I get a big heads up way before I ordinarily would. If they don't find anything, even better.
Anyway, it's not until next month. We set tentative dates subject to approval by the five other people involved in the study. She will confirm ASAP.
Tuesday, May 15, 2012
Thanks so much for your support last night! I knew I could count on my SparkFriends. I keep going back and reading your comments today to keep myself going.
First, Merrill and his mom are all settled in at the Children's Institute tonight. Mom reports that Merrill aggression has already decreased - they both feel comfortable in their new surroundings. As she said, they are beginning a new chapter in Merrill's ongoing recovery.
Next, my trip to Philadelphia has been postponed until June. I told them yesterday that I was arranging for someone to stay with Nelson but I would be driving myself in case I had to leave early. It was their idea to postpone the trip. The woman I am traveling with said that she would rather I teach the topic next month anyway. It is also a one-night trip next month, rather than two-nights like this month. I am trying to accept this at face value and not look for any deeper meanings re: my continued employment. Today was my 17th anniversary at this company - no one noticed.
Finally, there was something weighing heavy on my mind that I did not even mention last night. On April 19th, my DIL had two sonograms done, once of which showed that my unborn grandson had two holes in his heart. At that time, they told her they would do an EKG in two weeks to try to get more definitive information. The day before that appointment they told her it was too soon for the test - we had to wait a couple more weeks. The test was scheduled for today and I don't mind admitting I was more than a little freaked out by all this (although I wasn't letting them know that). I pretty much wasted the whole morning at work (translate that as further behind) because I could only think about the doctor appointment. Finally my son called a little after 3 today. The EKG looks good and they think the holes are healing themselves! There was good blood flow to all 4 chambers of his heart. He is a little on the small side (35th percentile) but mom and baby are both healthy.
Monday, May 14, 2012
I have been trying to compose this in my head for several days now and I can't seem to come up with a coherent post. So here is my stream instead...just going to talk until I am done...
My DH went to Atlanta a week ago Sunday and stayed until Thursday. Boy, was I looking forward to his trip. Between my "busy season" at work and my finance class, I had pretty much let everything else go for a while. I was really looking forward to a few days where I could just spend time getting things back together. I wouldn't have to cook, I wouldn't have to worry about keeping DH up at night or waking him up early in the morning...I could just go to work during the day and spend the rest of the time catching up on things.
And then the night before he is due to leave I get the phone call that has temporarily changed my life. My nephew, Merrill, has been in the hospital for 9 days now and I have had charge of his 6-year-old brother, Nelson, for just as long. The first few days were a flurry of activity. My SIL, Camille, flew in as my DH was flying out on Sunday. We all worry as Merrill is still unconscious. On Monday I get Nelson off to school and then leave work at lunchtime to take Camille out to airport and pick up other niece, Jessica, who is also my goddaughter. I finally get to see Merrill and he doesn't look at bad as my imagination led me to believe, but he still isn't conscious. I leave when it's time to pick up Nelson and then run around getting things for him to spend an extended time at my house. Around 11;15 PM my SIL and niece get to my house to sleep for a few hours and I return them to the hospital in the morning.
On Tuesday I have a board meeting at lunchtime and when it's done I go to the hospital instead of back to the office. Merrill is sitting up in a chair! He is still not really "with it" but the physical therapists have him up and moving a bit. After a visit, I take Camille and Jessica with me, we pick up Nelson, and then go grocery shopping. After that we proceed to other SIL's house, where Camille and Jessica make dinner for whatever family members can come on short notice. My DS comes over but that's it for my immediate family.
We are gathering at SIL Nancy's house instead of mine because her husband has cancer. He is undergoing chemo and radiation, but it has metastasized from his lungs to his hip, his groin, his brain and most recently his liver. The doctors say his body is ready for hospice but his mind is not. He is still talking about going back to work (he is 65) but he is dwindling away, almost right before our eyes. His daughter is pregnant with her first child after suffering a miscarriage several months ago. His son is graduating from high school and a party is planned for June 2nd. None of us are sure he will still be with us by then. (An aside - my SIL took him to the oncologist this past week, and when they were leaving, the person at the desk said, "see you in two weeks, if he is still around then". Can you imagine?!) So this gathering is bittersweet at best. There is some happy baby talk but most is centered around my very-ill nephew and my dying BIL. After dinner, the SILs and niece go back to hospital and I take nephew home again. Both nieces arrive at my house sometime after 1 AM to sleep for a few hours - SIL has stayed at hospital with Merrill.
In the morning we leave Merrill's mom sleeping and after dropping off Nelson at school, I make another trip to the airport with niece, who has to get back to work. Arrive at work late and leave early once again to get Nelson. Merrill is still not entirely coherent, but they have him up walking again and he uses the bathroom. Camille is dropped off at house later and I take her and Nelson out to dinner, as she is leaving very early the next morning to go back home.
On Thursday the realities of the situation start to settle in. All the "extra help" is gone. DH is due home that night and I still haven't settled into a routine with Nelson. The laundry piles have gotten higher and I am further behind in my work load, instead of getting caught up. The doctors are talking rehab for Merrill, saying it is a minimum of 2-4 weeks and my niece will have to plan to stay with him, at least in the beginning. Nelson's last day of school is June 7th and it is possible we will have him with us until then. I am cancelling work and outside commitments as much as possible, but some things cannot be changed.
I agreed a couple of weeks ago to take over the job as treasurer for one of the organizations on whose board I serve. I picked up all the info the day of Merrill's accident and found out that the current treasurer had not written up anything for the past year's activity and the tax return was due 10 days from when I was picking up all the material. I said I would have it done on time, not knowing what was waiting just around the corner. Thursday night when DH got home from his trip we were both so exhausted that we were in bed by 9:15. I got up at 3 AM and got the information collated for the accountant by 8 AM. Then Friday night I stayed up until 1 AM preparing reports for the board. We were holding the meeting at my office so I HAD to be there. Luckily, my DD finished her finals on Thursday and she was able to come over at 8 AM on Saturday and be there for Nelson while I went to my meeting (DH had to work).
It continues this week...we thought Merrill was being transferred to rehab today but it turns out all the paperwork has not been processed yet. He is more awake and exhibiting personality changes, which we were told him happen. He is swearing and cursing at his mother and the nurses. :(
His mother called me at work 4 times today because she was upset with the day's developments. I have been trying to write this blog for over an hour but I keep getting interrupted by Nelson. DH is finally on the way home from work so now I have to cook him dinner. And I still haven't gotten my own work done for the day.
I feel like I am going to have a nervous breakdown.
I feel like a jerk for even talking about this while Merrill is still in the hospital.
My eating was so good right before this happened and it has been going downhill since then. At this rate I will never be ready for that half-marathon next year.
I have to figure out how I am going to make my business trip to our other office in Philadelphia next week. It is the first time I am scheduled to go out there. My company has been really good about things so far but I am afraid to push it...
I am so glad I have you all out there. I need some support and you guys are it.
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