Friday, February 19, 2010
Donations for Gwyneth and William
Tuesday, February 16, 2010
In Memoriam
Monday, February 15, 2010
REMINDER - Wake Today
Tuesday, February 9, 2010
FUNERAL POSTPONED
Monday, February 8, 2010
Update about Funeral Arrangements
As discussed in an earlier post, Robert's funeral will be held this Friday, February 12th at 11AM at the Cathedral of Mary Our Queen.
Baltimore may experience another snowstorm within the next couple of days. If severe, it may be necessary to postpone the funeral to Saturday morning. If possible, please make your travel arrangements accordingly. Any changes to the schedule will be posted on the Yahoo group, blog, and Robert's facebook profile.
MEMORIAL DONATIONS:
Gwyneth and the Susil and Weigel families ask that you consider a donation in Robert's memory to these charities:
ACCOMMODATIONS:
Rooms have been reserved at the Sheraton Baltimore North:
Guests should ask for the "Friends and Family of Robert Susil" rate, which is $99 per night for Thursday and Friday nights. Parking in the hotel's covered garage is complementary. The hotel is located near the Baltimore beltway and is approximately 4 miles north of the Cathedral of Mary Our Queen and Mitchell-Wiedefeld Funeral home.
*** A small number of Maryland residents have offered to host visitors from out of town and/or assist in transportation from the airport. If interested, please contact me atJonathan.Hansen@
Sunday, February 7, 2010
Services
Dear friends,
Following are details about the funeral arrangements for Robert:
Friday, February 5, 2010
At Peace
Jonathan Hansen
Thursday, February 4, 2010
A big meeting
Hello to all -
The last two days have been difficult, as Robert has not been able to move any closer to coming off the ventilator.
I met with his primary oncologist and his pulmonologist today and we discussed the fact that if the high dose steroids were going to have any significant effect, we probably would have seen that by now. And while we think that the amount of bleeding in his lungs has slowed, it does not appear to have stopped completely.
It is not good for a person to remain intubated for a prolonged period of time, since the pressure of the vent can cause damage to airways, and a person's breathing muscles get weakened by not being used. So, we talked about attempting to transition Robert to a different kind of breathing support - something called CPAP or BiPAP. These are both tight fitting masks, that when worn, provide some additional pressure into the lungs the way a ventilator does, but do not require a breathing tube. These masks can also deliver high concentrations of oxygen, similar to being on a ventilator. In order for Robert to be able to transition to CPAP or BiPAP though, he needs to be able to initiate breaths on his own. So, if we are going to try and make this transition, we need to begin to wean him off his sedation medications. In addition, before having the breathing tube taken out, his ventilator would be changed to a different kind of setting that would allow us to monitor whether Robert is able to initiate his own breaths with enough force to be safely extubated. We will try to move slowly towards these goals over the weekend.
Unfortunately, even if Robert seems ready to be transitioned to CPAP or BiPAP, it is possible that once we take the breathing tube out, he will not do well without it. If that happens, I may have an extremely difficult choice to make (one that he may or may not be able to contribute to, depending on how awake and verbal he is at the time). The question of whether or not to re-intubate will be a hard one to answer, and is something that I will need to think and pray about seriously this weekend. If he were to be re-intubated, he would likely require a tracheostomy (a surgical opening into his airway that is then attached to a ventilator). It is possible that with a tracheostomy he could be awake enough to communicate, although not talk, and if he were able to remain comfortable and do that, what a great gift that would be for myself and William. However, it's a very invasive procedure, one that Robert and I never talked about, and in the face of still having widespread metastatic disease, I would have to feel confident that going forward with a tracheostomy would actually contribute to meaningful time with our family.
If he is able to transition to CPAP or BiPAP, it is our hope that over time the bleeding in his lungs would stop and his lungs would start to heal. That would still leave unanswered that question of how to further treat the remaining cancer, but would hopefully at least allow Robert comfortable and awake time with us.
As you can see, these next few days are critical. I know how hard everyone has been praying; I ask you again to continue to pray with all your heart for Robert's healing, comfort and peace.
Gwyneth
Wednesday, February 3, 2010
quick update (Wednesday morning)
Robert did fine overnight but we are having a little more difficulty keeping him sedated this morning. He is very comfortable when he falls asleep but any little noise really seems to wake him up.
I'm going to ask all our wonderful friends to hold off on visiting for this morning, until we get him a little more sleepy.
I'll put up another posting this afternoon if I think it's okay for visitors again.
Thank you!
Gwyneth
Tuesday, February 2, 2010
Tuesday night
I really have a hard time coming up with interesting titles for these blog entries!
I am sitting next to Robert's bed as I write - he is much more alert this evening, but so far seems comfortable. This has been wonderful for me, as we were able to "talk" a little bit. He continues to tell me that he is not in pain, although he also nodded yes when I asked "is it better to be asleep?" He seems to understand when I explain which medications he is receiving and why, and a friend of ours stopped by this afternoon and joked with him about needing a Radiation Oncology consult for a patient of hers, and I am told that Robert smiled at the joke, although I was out of the room at the time.
On the medical front, Robert remains much the same. He continues to have some bleeding into his lungs, although we have been somewhat hopeful that it is slowing down, as he seems to be requiring fewer blood transfusions. Today was his third day of high dose steroids, and the plan is to continue him on a lower dose of steroids for at least the next little while. Because he is receiving such significant doses of steroids, which suppress his already compromised immune system, he was started on prophylactic antibiotics today, to try and prevent infection. He was able to to tolerate a lower oxygen setting on his ventilator for a while today, but required going back up to the higher level this evening. He had some periods of coughing this morning, but that seemed to calm down as the day went by. He has been able to tolerate a higher rate of formula through his feeding tube.
It is snowing here again in Baltimore and I am about to go for a walk through the snow, as one of the wonderful social workers on Robert's team was able to arrange for me to have a room in the Family House across the street from the hospital. I am very reluctant to leave Robert, even for a few hours, but a good friend will stay with him while I'm gone and I can run back across the street quite quickly if needed.
With hope and prayers for a quiet night and for Robert's healing,
Gwyneth
Monday, February 1, 2010
Monday evening
Hello to all our friends.
When I held up the phone to Robert's ear this evening so that William could say goodnight, I heard a little voice say "Goodnight Daddy, I love you." And then I saw Robert definitively raise his right eyebrow, which is the most interactive that he has been all day!
All in all, I think he has been comfortable today. He continues to receive his steroids and antibiotics. He is receiving some nutrition through a feeding tube, but his stomach appears to be moving slowly, so we frequently have to stop the feeding (which ideally would run at a slow continuous rate throughout the day) to allow him some time to digest. He was seen by a physical therapist who was able to teach me some gentle exercises to keep his arms and legs limber while he is lying in bed.
We had many visitors today and it was nice to see so many friendly faces. I have been especially touched by the messages from so many of you telling me that your children are praying for Robert.
We are hoping for a quiet night here.
Gwyneth
Monday morning
Good morning to all. Robert had a relatively quiet night. He did require a small increase in his oxygen settings for a brief period this morning, which may have been due to him being moved around a bit for a bath, sheet change and suctioning. He is now back to where he was yesterday on his ventilator settings and his blood gases have remained stable. He is very, very comfortable (so much so that we are going to reduce his sedative medications a little today). Yesterday he started receiving some food (formula) through a feeding tube to give him some nutrition and he is tolerating that well.
For those of you in the area, please feel free to stop by today if you would like. If it gets to be too much, I will post a sign on his door.
Gwyneth