As I write Dad is getting his permanent pacemaker put in. Anthony is holding down the fort at the hospital with him. I will try to update as soon as he let's me know how it is going.
I think the staff at Maine Med is probably getting freaked out seeing Anthony in his casual clothes every day. They probably thought he was born with a tie and white coat or scrubs...
Dad had a pretty good weekend - some ups and downs but overall good. He is anxious to bust out of there!
Monday, June 24, 2013
Thursday, June 20, 2013
Road to recovery...
I am happy to report that dad is doing pretty well.
He/we have a long way to go.
In true Louie Ciampi ADHD style had to be at the better end of the spectrum. We were told that it would be great if he was awake an responding two hours after surgery it often could be four hours. It was just about two hours post op when we were by his side and the nurse asked him to wiggle his toes and he immediately complied. Followed by squeezing of hands. This caused us all to breath a little lighter. He still had the breathing tube in and was starting to breath on his own. He clearly knew we were there and responded to our voices by blinking.
I cannot speak for my siblings but I am willing to bet they felt pretty much the same way I did. The joy I felt at that moment made me have a sense of nostalgia, an elation reminiscent of Vivian and Jonah's first moments of life.
We went home to let him rest. A few hours later we got a call from the hospital letting us know he was awake and wantedntonsee his children. We were able to go to the hospital in small groups. He was able to speak to us and although he was in pain he expressed relief that this part of the process was over.
The hospital has asked that he does not have visitors yet. The next few days will be pretty rough and he will need rest.
We appreciate all of your well wishes!
He/we have a long way to go.
In true Louie Ciampi ADHD style had to be at the better end of the spectrum. We were told that it would be great if he was awake an responding two hours after surgery it often could be four hours. It was just about two hours post op when we were by his side and the nurse asked him to wiggle his toes and he immediately complied. Followed by squeezing of hands. This caused us all to breath a little lighter. He still had the breathing tube in and was starting to breath on his own. He clearly knew we were there and responded to our voices by blinking.
I cannot speak for my siblings but I am willing to bet they felt pretty much the same way I did. The joy I felt at that moment made me have a sense of nostalgia, an elation reminiscent of Vivian and Jonah's first moments of life.
We went home to let him rest. A few hours later we got a call from the hospital letting us know he was awake and wantedntonsee his children. We were able to go to the hospital in small groups. He was able to speak to us and although he was in pain he expressed relief that this part of the process was over.
The hospital has asked that he does not have visitors yet. The next few days will be pretty rough and he will need rest.
We appreciate all of your well wishes!
Just talked to the doctor...
He did very well. Cow valve and had more calcification than showed on the cath. He double checked the blockage was 30% so he did not intervene. He said that it may need to be looked at in the future. He is waiting for him to wake up and wiggle. This will confirm that he has not had a stroke.. NO Reason to believe he has had one but can not be 100% sure until he wakes.
Wednesday, June 19, 2013
The next stop
The next stop is valve replacement... Dad is thrilled that he is scheduled to be the first of the day. He will have surgery at 8 but prep will begin around 630. Surgery will take a few hours after which time he will go to special care. Hopefully he will be well enough to be transferred to the first floor after 24 hours. While on the first floor he will go through some rehab. The permanent pacemaker will be put in the day before he is released..
He has a great attitude towards all of this. He is looking forward to what comes next. For him it is not about the journey right now; it's all about the destination.
I asked him earlier today if he is nervous and he said "No. I have something to look forward to, and your mother will be taking care of me."
I'll catch up with you at the next stop.
g
He has a great attitude towards all of this. He is looking forward to what comes next. For him it is not about the journey right now; it's all about the destination.
I asked him earlier today if he is nervous and he said "No. I have something to look forward to, and your mother will be taking care of me."
I'll catch up with you at the next stop.
g
Tuesday, June 18, 2013
Update
The catheterization went pretty well. For an old guy he was pretty clear. No significant blockage but for his age he Looked pretty good; ironically the Doctor described the minimal blockage as "bumpy". Unfortunately, he needs a new valve... We are waiting to hear when the surgery will take place and then the permanent pacemaker. More to come.
Not there yet...
Thanks to all for checking in. Dad is having a procedure done right now to check his valves and maybe have things cleaned up a bit. The pacemaker is on the horizon.
We appreciate all of your thoughts and prayers.
G
We appreciate all of your thoughts and prayers.
G
Are we there yet????
The question on my mind at this moment is "Are we there yet?"
It is a question my siblings and I uttered countless times on trips taken in various wood paneled station wagons throughout the 70s and 80s.
As a mom and aunt I have heard similar anxious inquiries time and time again.
I should start by saying Vivian is well. She went back to school today and had a great day. The thoughts and prayers sent to her were and are appreciated.
My mind is occupied this evening with thoughts of the man who without I quite literally would not be here. A few days ago my dad stopped at my house as he does quite often. As he stood in my driveway telling Mike, Vivian and I about the visit he had just had with my mom it became obvious that something was not quite right. He passed out I was able to catch him and support him while Mike ran to call for an ambulance. Within seconds he was back. Mike hung up thinking the call had not connected. He had no memory of what happened and could not believe what we were telling him had really occurred.
He did not want to go to the hospital... "What will I say to the doctors? It's silly. That did not really happen!" After what seemed like an eternity of me yelling for him to get in the car and him trying to get around Mike and I to get into his own car a police officer who had been dispatched due to the hang up 911 call dialed from our land line stopped to see if everything was alright. Mike explained what had happened and the officer asked my dad if he wanted him to give us a ride with the promise we would get there "really fast". This was enough to get him into the car...
Anthony and I escorted him to the ER. He wanted to go to Mercy. He was seen very quickly and had various tests. He probably horrified the nurses and doctors with his unusual sense of humor. After just a few minutes he proved the old adage "Doctors are the worst patients." He wanted to leave and was trying to make alarms go off by holding his breath, removing the pulse ox clip, etc. After an hour or so he told the nurse he wanted to leave. Shortly thereafter the doctor returned and gave him two options.
Option 1 the commended option stay and have more tests done or Option 2 go home follow up with his cardiologist. I don't think the words had been fully spoken before he had the electrodes off and started trying to remove the IV. Clearly the doctor did not realize who he was dealing with. That and the fact that if he was released quickly he would not miss the 515 mass at St. Peter's.
The nurse came in and removed the IV and accepted his hug and "God bless" as he sprinted out the door...
We went to church followed by a Father's Day Eve dinner at his house. Marianna, Joanna, Carla, Anthony and I along with our families had a great time and the best gift was all 6 of his children went to church with him! He had a busy Father's Day with visits followed by dinner at Michael's with his family.
Today he was busy doing errands with Carla. Marianna was visiting this evening after her last day of school. She was in another room and when she walked back into the room he was in he told her he had just had another "episode". No big deal. No need to bother Michael and certainly no need to go to the hospital. As they sat there he had another episode at which point he agreed to go to the hospital.
Marianna took him to Brighton Medical, which in case you were wondering is no longer an ER. He was hooked up to monitors and was in the process of being given the option to be transferred to a room at Maine Med or go home. At that point he had another "episode". This time it was captured by the EKG.
His heart "paused" for 10 seconds. No more options 911 was called.
He was transferred to Maine Med via ambulance. He had another pause upon arrival and again as we were with him in the ER. The cardiologist came in to explain an emergency procedure would be done to put in a temporary pacemaker. Most likely after a few days a permanent on will be installed... Shortly before being wheeled away he wanted to look at Mom's picture which he keeps in his wallet.
The procedure was fairly quick. We were able to see him as he was wheeled by. He was settled into his room and we were able to visit. He looked great and was talking and joking per usual.
I looked up towards the door to his room. As I did so I let out a loud gasp. There is a plaque over the door inside of his room that reads "Gift of Patricia". I think I can safely speak for all six of your children when I say thank you Mom, thank you for this gift.
I cannot count the times in my life that I have heard "God only gives you what you can handle." So I am asking tonight... Are we there yet?
Good night and as I say to my dad at the end of every conversation; "I love you. I'll talk to you later.". His reply never falters, in words of Louie Ciampi "God willing."
It is a question my siblings and I uttered countless times on trips taken in various wood paneled station wagons throughout the 70s and 80s.
As a mom and aunt I have heard similar anxious inquiries time and time again.
I should start by saying Vivian is well. She went back to school today and had a great day. The thoughts and prayers sent to her were and are appreciated.
My mind is occupied this evening with thoughts of the man who without I quite literally would not be here. A few days ago my dad stopped at my house as he does quite often. As he stood in my driveway telling Mike, Vivian and I about the visit he had just had with my mom it became obvious that something was not quite right. He passed out I was able to catch him and support him while Mike ran to call for an ambulance. Within seconds he was back. Mike hung up thinking the call had not connected. He had no memory of what happened and could not believe what we were telling him had really occurred.
He did not want to go to the hospital... "What will I say to the doctors? It's silly. That did not really happen!" After what seemed like an eternity of me yelling for him to get in the car and him trying to get around Mike and I to get into his own car a police officer who had been dispatched due to the hang up 911 call dialed from our land line stopped to see if everything was alright. Mike explained what had happened and the officer asked my dad if he wanted him to give us a ride with the promise we would get there "really fast". This was enough to get him into the car...
Anthony and I escorted him to the ER. He wanted to go to Mercy. He was seen very quickly and had various tests. He probably horrified the nurses and doctors with his unusual sense of humor. After just a few minutes he proved the old adage "Doctors are the worst patients." He wanted to leave and was trying to make alarms go off by holding his breath, removing the pulse ox clip, etc. After an hour or so he told the nurse he wanted to leave. Shortly thereafter the doctor returned and gave him two options.
Option 1 the commended option stay and have more tests done or Option 2 go home follow up with his cardiologist. I don't think the words had been fully spoken before he had the electrodes off and started trying to remove the IV. Clearly the doctor did not realize who he was dealing with. That and the fact that if he was released quickly he would not miss the 515 mass at St. Peter's.
The nurse came in and removed the IV and accepted his hug and "God bless" as he sprinted out the door...
We went to church followed by a Father's Day Eve dinner at his house. Marianna, Joanna, Carla, Anthony and I along with our families had a great time and the best gift was all 6 of his children went to church with him! He had a busy Father's Day with visits followed by dinner at Michael's with his family.
Today he was busy doing errands with Carla. Marianna was visiting this evening after her last day of school. She was in another room and when she walked back into the room he was in he told her he had just had another "episode". No big deal. No need to bother Michael and certainly no need to go to the hospital. As they sat there he had another episode at which point he agreed to go to the hospital.
Marianna took him to Brighton Medical, which in case you were wondering is no longer an ER. He was hooked up to monitors and was in the process of being given the option to be transferred to a room at Maine Med or go home. At that point he had another "episode". This time it was captured by the EKG.
His heart "paused" for 10 seconds. No more options 911 was called.
He was transferred to Maine Med via ambulance. He had another pause upon arrival and again as we were with him in the ER. The cardiologist came in to explain an emergency procedure would be done to put in a temporary pacemaker. Most likely after a few days a permanent on will be installed... Shortly before being wheeled away he wanted to look at Mom's picture which he keeps in his wallet.
The procedure was fairly quick. We were able to see him as he was wheeled by. He was settled into his room and we were able to visit. He looked great and was talking and joking per usual.
I looked up towards the door to his room. As I did so I let out a loud gasp. There is a plaque over the door inside of his room that reads "Gift of Patricia". I think I can safely speak for all six of your children when I say thank you Mom, thank you for this gift.
I cannot count the times in my life that I have heard "God only gives you what you can handle." So I am asking tonight... Are we there yet?
Good night and as I say to my dad at the end of every conversation; "I love you. I'll talk to you later.". His reply never falters, in words of Louie Ciampi "God willing."
Sunday, June 9, 2013
Home again
Sunday, June 9, 2013
I hope the lack of posts has not caused any concern. I was having technical difficulties.
Vivian was released from the hospital Friday afternoon.
Thursday was a long day. Vivian was feeling really yucky. She was not eating or drinking and was only talking to Mike and me. We felt bad for the nurses and doctors because they wee trying everything to get her to talk and tell them how she was feeling but she would not.
Her meds were changed from IV to oral... Everything tasted gross so she was not happy. We basically had to restrain her for each time she was scheduled for meds. Her anxiety level was high and she ended up getting sick after almost every dose... She was in a great deal of pain but was not taking meds at all...
Late Thursday afternoon she was switched back to IV meds. She complained that the IV was burning. At around 1 am one IV was moved and the meds were delivered through the other. She was still upset and at around 430 am the second IV was removed because it was not working.
Friday was much of the same. She really wanted to go home and was not about to do anything the nurses or us asked her to do in the hospital. Dr. Wilson had already been in to see her and she was cleared to leave based on our comfort level. After much discussion and knowing how obstinate Vivian can be we opted to take her home. Friday night we were having some regrets because she was still not taking any meds but she asked for pizza for dinner and ate 3 pieces followed by dessert.
Saturday she agreed to take Tylenol and Advil throughout the day. She was much more herself and after a huge struggle took a shower. The amount of iodine around the incision area and in her hair was amazing. After several shampoos it is still in there. We took a walk as far as a neighbor friend's driveway and came home. She ate a good dinner and slept peacefully.
Today she is like a different kid. She is totally herself has had no Tylenol or Advil and walked to a friend's house two streets away. Other than guarded movement she seems like she did last Sunday. We are sure there may be a few more bumps but if she continues to progress like today we may be able to send her back to school ahead of our goal!
We have had a lot of well wishes, visitors, and gifts but what we are most grateful for is the love and support everyone has shown us.
We have been asked a lot throughout this experience:
How do you do it?
Really, the only thing we can say is we just do. We have no choice but to believe the outcome will be positive; there is simply no other choice.
Why you again?
I wish we knew, but, we cannot wallow in self pity. We have no control over things like this and cannot waste our energy on the whys. It is what it is...
How can you be so calm?
We are really good actors.
Don't get me wrong we do not want any more challenges.
I hope the lack of posts has not caused any concern. I was having technical difficulties.
Vivian was released from the hospital Friday afternoon.
Thursday was a long day. Vivian was feeling really yucky. She was not eating or drinking and was only talking to Mike and me. We felt bad for the nurses and doctors because they wee trying everything to get her to talk and tell them how she was feeling but she would not.
Her meds were changed from IV to oral... Everything tasted gross so she was not happy. We basically had to restrain her for each time she was scheduled for meds. Her anxiety level was high and she ended up getting sick after almost every dose... She was in a great deal of pain but was not taking meds at all...
Late Thursday afternoon she was switched back to IV meds. She complained that the IV was burning. At around 1 am one IV was moved and the meds were delivered through the other. She was still upset and at around 430 am the second IV was removed because it was not working.
Friday was much of the same. She really wanted to go home and was not about to do anything the nurses or us asked her to do in the hospital. Dr. Wilson had already been in to see her and she was cleared to leave based on our comfort level. After much discussion and knowing how obstinate Vivian can be we opted to take her home. Friday night we were having some regrets because she was still not taking any meds but she asked for pizza for dinner and ate 3 pieces followed by dessert.
Saturday she agreed to take Tylenol and Advil throughout the day. She was much more herself and after a huge struggle took a shower. The amount of iodine around the incision area and in her hair was amazing. After several shampoos it is still in there. We took a walk as far as a neighbor friend's driveway and came home. She ate a good dinner and slept peacefully.
Today she is like a different kid. She is totally herself has had no Tylenol or Advil and walked to a friend's house two streets away. Other than guarded movement she seems like she did last Sunday. We are sure there may be a few more bumps but if she continues to progress like today we may be able to send her back to school ahead of our goal!
We have had a lot of well wishes, visitors, and gifts but what we are most grateful for is the love and support everyone has shown us.
We have been asked a lot throughout this experience:
How do you do it?
Really, the only thing we can say is we just do. We have no choice but to believe the outcome will be positive; there is simply no other choice.
Why you again?
I wish we knew, but, we cannot wallow in self pity. We have no control over things like this and cannot waste our energy on the whys. It is what it is...
How can you be so calm?
We are really good actors.
Don't get me wrong we do not want any more challenges.
Wednesday, June 5, 2013
Day 2
As expected today was not that wonderful...
We started the day at 4 am with a CAT Scan. Since Viv is not a cat lover the name alone was scary. The movement from the bed to the wheelchair was not great. She was really nauseous... After the CAT scan she slept for a little while. She was visited by Dr. B, Dr. Anson and Dr. Wilson this morning. Dr. Wilson showed her a picture of her brain now that it has more room. It is pretty amazing looking at the before and after pictures of her brain.. She felt pretty terrible most of the day... Around 3 pm she got to move from ICU to Barbara Bush. She misses her little brother. He is hanging out with Uncle John so she had us call him to request a visit from Jonah (and Louie).
We are hoping tomorrow will be better.
We started the day at 4 am with a CAT Scan. Since Viv is not a cat lover the name alone was scary. The movement from the bed to the wheelchair was not great. She was really nauseous... After the CAT scan she slept for a little while. She was visited by Dr. B, Dr. Anson and Dr. Wilson this morning. Dr. Wilson showed her a picture of her brain now that it has more room. It is pretty amazing looking at the before and after pictures of her brain.. She felt pretty terrible most of the day... Around 3 pm she got to move from ICU to Barbara Bush. She misses her little brother. He is hanging out with Uncle John so she had us call him to request a visit from Jonah (and Louie).
We are hoping tomorrow will be better.
Tuesday, June 4, 2013
Out of surgery
We got to the hospital at 9. Viv dozed off a few times in preop. She went in to surgery at around 11 a.m. and got out around 230 p.m. Dr. Wilson said she did amazingly well. She is sleeping now but was able to talk to us. She immediately asked what time it was. She was in a lot of pain and has had some meds to help. She has a mini reverse Mohawk.
We are pretty much staring at her, watching her sleep like we did when she was born.
More later!
We are pretty much staring at her, watching her sleep like we did when she was born.
More later!
Monday, June 3, 2013
On the road again…
Before talking about our new journey, I think it is
important to mention the road has had some twists and turns since the last
update. We have had some challenges, lost
some important people along the way, most notably my mom. We have also made some great new memories, friendships
and had some wonderful things happen.
We have watched our children grow into amazing little people. Their personalities have morphed in a way that usually has us laughing, or wondering how they have become so smart, creative and insightful. At other times we wonder how we are going to get through everyday challenges of being a parent such as a stubborn stage, tears before school, refusal to wear insert clothing item here, etc… without our heads exploding! It is hard to fathom that Vivian is about to complete Kindergarten and Jonah will be starting in the fall.
When we started this blog almost 5 years ago we never
imagined we would be faced with a detour like the one we are faced with today.
Our children have been relatively healthy; rarely do they get sick other than a runny nose now and again. We were slightly alarmed when at Vivian’s 6 year appointment on Valentine’s Day Dr. Christine Bennett, known fondly in our home, simply as Dr. B noticed a curve in her spine. She wanted it to be looked at more closely.
The following week we met with Dr. Michele LaBotz and an
Xray was scheduled. The results came in
the next week; it appeared Viv had Juvenile Idiopathic Scoliosis. Rare for age 6, the curvature measured
approximately 35 degrees thoracic and 20 degrees lumbar. Dr. LaBotz referred us to Dr. Philip Anson,
as the degree of Vivian’s scoliosis was more severe than she typically treats. We also contacted Boston Children’s hospital
and set up an appointment there with Dr. Lawrence Karlin.
This certainly became more alarming, however, as we have
with most challenges we are faced with we started researching… We found some great information on the
Scoliosis Research Society website. http://www.srs.org We were prepped and ready to meet with Drs.
Anson and Karlin. Based on the visits
with both a plan was set in place for Vivian to begin wearing a brace to help
limit the progression of the scoliosis. Dr.
Karlin strongly recommended a MRI be done to insure there was no other cause
for the curve. Dr. Anson agreed and we
moved forward.
Vivian was measured for a brace and was able to choose a design for it. She was quite pleased to find the wide variety of choices and immediately chose pink with hearts of various colors. She began wearing the brace May 13th. The transition to the brace went much better than we had anticipated. If you are reading this you probably know Viv is a rule follower (with everyone except Mike and me!) At her brace fitting her Orthotist, J.P. Donovan said 21 hours of brace time per day and more if tolerated she was all ears! The brace has not slowed Vivian down; she is able to do most things including her favorite, monkey bars with no issue. She has adapted quickly to the few challenges she has encountered.
On Thursday, May 23rd we were off to Maine Med
for an MRI which was done under anesthesia.
She was pretty loopy after the MRI but all in all it was a
non-event. She was back to school the
next day and we celebrated Memorial Day with a fun three day weekend.
Tuesday, May 28th Dr. Anson called to let us know
that the MRI was not normal. Vivian was
diagnosed with Chiari Malformation. Dr.
Anson had already contacted pediatric neurologist Dr. James Wilson on her
behalf. The following day Wednesday, May
29th we met with Dr. Wilson.
He explained what was going on and recommended surgery, although the
surgery is not emergent it is necessary.
We decided not to hesitate.
Vivian will be admitted to Maine Medical Center tomorrow morning to undergo a Craniotomy, posterior fossa decompression. Some websites we have looked at that explain the surgery and the condition include http://www.mayfieldchiaricenter.com/ and http://www.wichiaricenter.org/
We are very thankful that Viv has not suffered any of the
neurological symptoms that can accompany Chiari Malformation. We feel fortunate to have had the care of each
of the doctors she has seen. We are
remaining positive and trying desperately for her and Jonah not to be aware of
our fears.
Just to be safe Jonah will need to be checked as well. Vivian, as any sibling would, has been
torturing him with the information that when he wakes up from anesthesia he
will have a needle in his arm. As soon
as he has moved on to something else she mentions the MRI again… His response is typically “I don’t have a
crooked spine. I’m NOT having a MRI!”
We are lucky to have an amazing support system of family and
friends to help us along the way.
Please keep her in your thoughts. We are aiming for a daily
update as time allows.
Gilda
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