Sunday, December 27, 2009

Augustin Joseph has arrived!












Welcome little Gus! Born Sunday, December 27th, 2009 at 10:24 am weighing 6lbs. 11 ounces and measuring 19 inches long.



Saturday, December 26, 2009

Stay Tuned....Baby News Coming

Merry Christmas to all. As Christmas festivities wind down we are really feeling the countdown to grandparenthood. Please join us in prayers for a safe, peaceful birth for our little grandson. He was "due" on the 23rd but we are all happy to have spent Christmas at home instead of the hospital.

Tuesday, September 1, 2009

Buddy Walk

Here's our Buddy that makes this fun day (and so much more) possible for us....Michael!
Bernadette (left =) and Clare (right) very busy putting Buddy Walk tattoos on about a gazillion kids and adults.

Peter, the master face painter two years in a row now.






The oldest (Jen) and youngest (Michael) of the Sherman clan.




Big brother Dan helping Michael get all the high fives he can fromthe volunteers who line the walk.





This is the forst year Michael actually walked for part of the walk.























Dan and John walking with their buddy. Mom pushing the empty (except for junk) stroller!
































Great picture if Dan wasn't looking over his shoulder at the fire truck. He'll be driving one of those soon!












Big sis Mary who will get after me for chopping her head off in this picture.
We had a great time. This walk was a special goal of mine before I had my surgery. I wasn't absolutely sure I would be able to make it but am thrilled to say that not only did I make it to the walk, I walked the entire course, and had energy to volunteer as well as enjoy the party after the walk. My new (and very expensive :) ) heart parts are working just fine.
Barb












Sunday, July 19, 2009

I'm not the only patient here

As always, the Shermans don't see the pont in underdoing anything. Here's a rundown on who feels crummy and why. John and Bernadette are coughing but mainly at night. This all began before I went to the hospital and they finished a round of meds which left them feeling better but still coughing-a lot. Then there's Clare who also began with fever and sore throat and meds before my surgery. She's back down with the same. Yesterday Mary jumped in to join the fun with a fever. . All of this adds up to way too much to deal with around here but we plan to get everyone looked at again and hopefully on the mend. It's bad enough that these kids have to be of more help than usual to mom at this point but to be sick in the middle of July just stinks. I hope to soon be posting that everyone is happy, well and back to feeling like playing.

I really haven't ventured away from the house yet in the week I've been home. I'm actually kind of looking forward to my appointment on Tues. just to get out. I have been walking in the house and doing stairs. I haven't walked outside as of yet because I don't want to get so far away that it is hard to get back. That is a project for this week though.

My incision is healing beautifully. In fact whoever closed me up deserves whatever they pay him and more. I dare say, you may not even be able to see much of a scar from this in the future. Despite being a very long incision it is VERY thin with no stitches on the outside. Very good work by someone indeed!

I told Gil yesterday, I feel like a baby. I really need two naps a day. This is so hard. I'm not a napper let alone more than once a day. My job around here very often includes rousing various teenagers from one couch or another at any given time of the day. It goes totally against my grain to be the one lounging. I know...enjoy it while it lasts...I will try.

Michael has been so sweet through all of this. He has recently realized that I have a boo boo and is very concerned about it. I was afraid of what it would mean not to be able to pick him up but so far that hasn't been an issue. He's becoming more and more independent and there is always someone here who can grab him if the need arises. He loves to entertain us by having anyone who's near sit down and then he does his rendition of certain songs and breaks into some dance moves too. He's a riot. He's also becoming more verbal in stating what he needs or wants which is helpful at this time. The only thing Michael gets shorted on around here is outings. It's usually simpler for errands, baseball games etc. if he doesn't come along. Yesterday, though, Jen took him and John to McDonalds for lunch and today Gil took him and a couple of the kids to the mall just to play in the play area. A couple outings just for him without anyone else trying to get "something done" at the same time.

I've had some ups and downs with pain medications which leave me feeling awful like this morning. I ended up substituting tylenol for my usual narcotic and ended up in a cold sweat and almost passing out. I hope to have these things come to an end soon and get back to a little more of a "normal" me very soon. They say I will feel better than ever eventually. Being patient as I can here.

Thursday, July 16, 2009

9 days post op

I am going to attempt to type a little each day just to kind of keep the days straight here. I'm still at the point that I don't really care if I forget this whole experience, but I know at some point it is going to drive me crazy trying to piece the time together.

I've been home since Sat. night and coming home itself felt heavenly. I mad a mistake during discharge complaining that the pain meds were making me too sleepy. They switched me to something not as strong that didn't have the sleepy side effect. BIG mistake! It took me a few nights of misery to realize that sleepy at this stage isn't a bad thing. We called the surgeon yesterday and long story short I am back on the right pain meds and had a much better night last night. My friend who is a nurse practitioner was wise to point out to me that when they cut the sternum open every breath is a movement and pain control is important for the first two weeks. Needless to say I'm watching the clock (thanks Chris!).

It was wonderful to have Judy (Gil's sister) drop by and lend a hand with lunchtime today. Thanks Judy! We have been blessed beyond belief by family, friends' and neighbors' care and concern.

This is going to be slow and this is in part why I am writing. I think it might help me in a week to look back and see the progress made. So here goes the whining part of what exactly hurts and what this feels like.

The ten inch cut really doesn't hurt belive it or not. The smaller horizontal incision near my right shoulder hurts much more. That is ewhere I was attatched to the heart lung machine. The pressure is worse than the pain. I feel pressure from my shoulders to my waist and it is impossible to take in a full breath. When pain med runs low it is painful to breath. I keep getting very lightheaded/naseous and experiencing some visual disturbances which are very annoying. Periodic sweating episodes make me wonder if I have a fever but I think it is my body getting rid of some fluid. I just went up a flight of stairs this afternoon and felt a tightness in my chest. The other day I was ambitious and tried to begin my cardiac rehab excercises and got that same very tight feeling. I need to learn how to start slower. That's not really my thing. I slept in the recliner for an hour this afternoon and felt awful afterwards. I'm just not accustomed to laying around and just plain don't like the way it makesa me feel mentally. Physically, right now, I have no choice. Lat night was much more comfortable but I was still awake a large amount of the night which I guess can be common. Not hurting in the middle of the night was a God send though and I'll take it.

My time is up comfort wise. More tomorrow.

Barb

Sunday, July 12, 2009

I'm home with a mended and grateful heart

At the peak of a dose of vicodin, combined with another pain med, I am able to sit here for just a quick moment. What an adventure indeed! I will type more down the road about what this surgery entailed.

I appreciate all who have been checking in here as it would be impossible for Gil to keep in touch by phone with all of our dear friends.

It seems that my dear husband has been enjoying his first adventure in blogging. Didn't I put someone in charge of hitting him over the head with his laptop if he posted pictures of me? I'm too stiff and sore to do it myself now so....oh well.

Thanks for being here for us.

Barb

Saturday, July 11, 2009

Day 4 - Going Home

Day 4 is a bit of a misnomer. It is really Day 6, in that there was one day of pre-op, the day of the operation and 4 days in the hospital post-op. That said, I'm pretty sure that no matter how much one wants to go home after an operation like this, even if the patient is ready, the family isn't sure that the patient is ready. At least, that is how I felt.

The day was a series of small victories. After giving 11 vials of blood for a genetic testing study, by mid-morning, Barb called to say that her blood count was low (somehow not surprising) and that they may have to give her blood. In that case, she might not be coming home today after all. They took another sample around noon and by 2 pm she was cleared for discharge. About 3:30, the nurse came in to remove all the heart monitoring equipment and various leads and then Barb took her first shower - which went swimmingly (pun intended). She said it felt great (also not surprising). After her shower, she dressed in her own clothes, also a glorious feeling and we waited for the nurse to give us her discharge instructions.

About 4 pm, the nurse came in with a ream of paperwork, including a wad of prescriptions, a list of other otc medications to purchase and of course all the going-home instructions. At about 4:30, transport arrived to wheel Barb to the door and it was time to say goodbye. For my part, I don't want anymore of us to have to experience all this fun, but if you gotta do it - these folks certainly seem to know what they're doing. - Gil

Friday, July 10, 2009

Day 3 - A Little Better Today

I gave Barb a little time this morning to get "settled" and when I arrived about Noon, the nurse practitioner was there to remove the pacemaker leads that were installed just in case they were needed. A couple of snips, and a wincing tug later, the leads were out. Before I got there Barb walked a little more than the night before - all good signs that recovery continues!

As expected, Barb is still having a difficult time eating, even though she is hungry. The nurse in the ICU class told us that this is common - so not alot of breakfast or lunch got eaten. I brought her a raspberry froozen fruit bar and she ate about half of it. About 4:30, I left to take John to his baseball game, while Barb picked at dinner. When I returned about 9:30, our friend Laura was there to visit and cajole Barb to eat more. I was sent to the cafeteria for a smorasbord of desserts and returned with a banana, a few different cups of ice cream and a cup of frozen lemon ice and a cup of fresh fruit chunks. By this time, Barb admitted to actually being hungry and actually ate the whole banana and a fair portion of everything else. I guess the "dinner compartment" was closed and the "dessert compartment" was open. We had a nice conversation with Barb and tucked her into bed about 11:30, after her last dose of pain meds began to work.

We've been told that once the pacemaker leads have been removed, discharge can occur in as little as 24 hours. - we'll see. - Gil

Thursday, July 9, 2009

Day 2 - Misadventures in Patient Care Coordination

Today was interesting and challenging on many levels. Whereas the Cleveland Clinic is world famous for its surgeons and surgical outcomes, particularly in matters concerning the heart, it sometimes gets knocked for less than stellar palliative care...cases in point:


Barb was whisked away for a chest x-ray and returned to her room, before I arrived this morning. When I arrived at 10 am, she said that she was not allowed to eat because she had to get a CT scan - they took her at about 10:30 and returned to the room at about 11:45. Still, she had not eaten since dinner the night before...at a time when she was absolutely supposed to eat to gain her strength. When we came back to the room, I immediately asked the nurse for some food for her, citing the obvious need. The nurse said "Oh, the lunch tray will be coming any minute now, I'll bring you some applesauce", in a sort of tone that doubted my word about Barb's need for nourishment. Sometime inbetween all of the tests, her catheter was removed and she was "free to go". She just had to get to the bathroom - which means standing and walking. She did!! At this point, since I still had John with me from the night before, and reasonably convinced that Barb would be fed, I took John home.


While I was at home, I got a teary call from Barb at around 3 pm that she just returned from the worst echo-cardiogram session ever. Worse yet, she still had not eaten!! Barb proceeds to describe the echo: The technician, who apparently thought that she looked much younger than she is, made a very strong point of telling Barb that she could not help her up onto the table, or off of the table, nor to maneuver on the table, because of her bad back. "you know, I may not look like I'm nearly 50, but I've been doing this 20 years", she said. According to Barb, she was deluded. Then, t0 make matters worse, this technician kind of "eeewwed" at Barb's various surgical scars (which frankly are not bad at all)...clearly this woman is not cut out to deal with post-operative patients.


At this point, I was boiling mad - vowing to drill all sorts of holes in all sorts of people...etc., but Barb convinced me to calm down (for now). Her lunch tray arrived around 3:30, 1/2 of a turkey sandwich got eaten - all of this really leaving me to wonder who is responsible for coordinating patient care?? Still a question in my mind.


I got back to the hospital around 5 pm, just in time to see the dinner tray arrive - go figure. Beef stew. Naturally, she wasn't hungry yet - so when I went for my dinner around 7, I picked up some soup and her favorite greek strained yogurt with honey for her, from the cafeteria. She ate some of it. Enough to say she ate. Then, she declared that she wanted to take a walk. The nurse checked her blood pressure, gave the OK and suggested that she use the IV pole for additional support.
Barb walking in the hallway!!

She walked about 20 feet in either direction of her room and, exhausted, went back to bed! Her pain is in pretty decent control in the 4-6 (out of 10) range mostly. Wow, what a day! While I don't think Barb will be running a marathon tomorrow, I'm reasonably sure that she'll be able to sustain more strenuous activity. - Gil

Wednesday, July 8, 2009

The Next Day - Into the Step Down

Arriving at 10:30 am as per our instructions, we entered the ICU to find Barb alert and practically ready to transfer to a step down room. By about 12:30, the transport team wheeled Barb's bed around the 6th floor - from the ICU portion to the step-down unit. When wew got there, they transferred Barb from the ICU bed to the step down bed and the nurse got her all hooked back up. Dan stopped by at 1:45 on his way to work. Colleen, Mary, Clare and Bernadette came to visit at 3:30.

You can really tell when the pain meds begin to wear off...and when they begin to work. Barb got some rest after the first group of kids left and when dinner arrived she ate significantly more food than lunch. Good girl!!

Jen, Anna, Pete and John came at about 8:00 for round 2. John was a little restless probably because he spent the last 2 nights at his best buddy (and Godbrother), Paul's house.

All the kids got to see the rooftop pavilion with its spectacular views of downtown. - Gil

Tuesday, July 7, 2009

The Big Day - ICU Adventures

Note edits below in RED - I remembered these items after posting

After meeting with Dr. Svensson, Beth and I went to Mass in the chapel, giving thanks to God, for guiding the surgeon's hands. It was incredibly hot in the chapel, save a small area where there was a portable air conditioner. I promptly sat right in front of it's vent so as to take advantage of the slight cooling it provided. Needless to say, Father turned the AC off, immediately upon his arrival. It was a sweltering, but Blessed experience.

(I had the rest of this updated at 1:30 am...then my hotel internet connection *&%$'ing bleeped off and my edits were lost. I hope I can remember it all)

After leaving Mass, Beth and I went to lunch, where I proceeded to spill tomato florentine soup on her shoe, making her look somewhat like someone who was standing next to the wrong person at a rock concert. Around 2 we checked in at the ICU and were told that someone would take us to Barb's bed. There are four ICU units, all sort of "dormitory style", and quite identical looking. Our guide led us through the doors - foam in, foam out (with the super-duper antibacterial foam) and proceeded to take us to the bed of some 60+ year old man. Our first thought was that Barb was given a gender-changing operation, with aging included...not so, we were in the wrong unit. Whew! Had me nervous for a minute.

We arrived at Barb's bedside to a mass of breathing tubes, IV's, other injectable devices, drainage hoses an a lot of beeping and wierd noises. Behind all of that though, Barb looked beautiful. Because she was breathing very well at this point, the nurse had begun the procedure to remove the breathing tube, which means turning off all the sedatives and pain killers, so that she can be awake enough to truly breath on her own once the tube is removed. The breathing tube became more and more uncomfortable for her, as she emerged from the sedatives. Also, she recognized the pain (9 out of 10). At one point Barb tried to sign that she was in pain, but in my utter stupidity, I could not make it out. She was given a pen and paper and she scrawled the word pain on it...but they could not give her more pain medication until the tube was removed. At some point, Neil, the bed nurse, said "hey, are you going to be here?" "Sure", we said. "Good", he says, "I'll be right back" and he disappeared for 15-20 minutes...so basically, he left me and Beth in charge - not the brightest move, in my estimation.

About 4 or 4:30, they kicked us out (which they did for each and every sterile procedure) so that they could remove the breathing tube. We were visited by a young lady, who, though VERY pregnant, could not have been older than 12 (to our eyes). Turns out, she was the respiratory therapist, much older than 12, who was going to remove the tube - except that she would require a step stool to reach Barb's tube... Turns out, she went to lunch and another therapist actually did the deed. When we came back in, Barb was talking (with quite a rasp) and pretty cogent; so much so that she told me to stop saying that "she looked better this time than after the hip operation". Over the next couple of hours the nurse got her pain under better control and by 6 I was falling asleep, leaning on the bed rail. At that point, Beth and I left, went to our respective hotels and got a snack and a short nap.

When we returned at 8 pm, Barb was awake, pain under reasonable control (5 out of 10) and she was taking small quantities of ice chips. At this point, Barb began asking about the kids, wondering what they were doing and suggesting what they should be doing - in other words, clearly her condition was improving, as she was beginning to micromanage the activities at home, from her ICU hospital bed. The bed nurse thought that she would be transferred to a step-down room by noon on Wednesday (7/8). When we left at 9, Barb was sleeping - beautifully. - Gil

The Big Day - The Surgery

So, during the ICU class, I found out that the first incision was at 8:05 am and that the major portion of the surgery began at 9:45 am. During the class, the nurse indicated that the surgery would probably take 5 hours AFTER the "major portion" began...meaning 2:45 pm. Imagine my surprise when I was called to meet with Dr. Svensson at 11:05!!!

Beth and I went up to the appointed office and waited...and waited...about 15 minutes a volunteer named Herb came up to us and asked how our procedure was going? It took a few minutes to convince Herb that Beth was not the patient, but once we got that straightened out, he appeared to really NEED to help us with something. Lovely tea, hot chocolate...he finally moved on, but it was an awkward moment.

About 11:40 Dr. Svensson showed up and we sat down. He said everything went well, exactly as planned. He told us about Barb's calcified valve, which was somewhat worse than originally thought, but not to worry, he put in a "size 25 cow valve", which is a little larger than normal, but this is better, in case a subsequent valve needs to be put in. He also said that they put in a longer tube than anticipated to include more of the arch area of the aorta. This was due to the fact that the aortic wall was much softer than he originally thought it would be...meaning closer to rupture than he thought in the assessment. All in all, he thought it went very well, and that full, prompt recovery is likely. - Gil

The Big Day - Off to Surgery


The appointed hour of 6:00 am had come and gone - Barb, Beth and I patiently waited, then at 6:30, the patient transporter arrived with the bed to take Barb to surgery. Once we arrived on the 4th floor,

A very encouraging sign on the wall outside the operating room doors


Beth and I were instructed to go to waiting room J1-2 and to check in there. At J1-2 we were issued a pager and informed about the patient support class that takes place at 9:30 or 10:00. - Gil

The Big Day - pre-op

It is 5:30 am and Barb's sister Beth and I have just arrived. Barb's sleep was short and puntuated by hourly visitors (nurses). So, we're all waiting for Barb to be whisked away...

Monday, July 6, 2009

At the Hospital


Barb and I have been sitting in her pre-op room since 1 pm, having waited over 2 hours to get this lovely room assigned. It is 4:30 now and we are still waiting for the ever-important fluids to be administered by the ever-so-busy admitting doctor...he or she has already been paged 4 times. My normally jovial and affable self is seriously challenged right now.


Barb in the pre-op room - probably checking on the kids...


Oooh a doctor just showed up - but I suspect the wrong one. I'll update more later. - Gil

Sunday, July 5, 2009

Heart Surgery

I set this blog up last fall, as you can see, in order to share the more joyous family times with friends and family. Unfortunately our newest adventure isn't the summer vacation we would have chosen but here we go anyway.


A little background for anyone wondering....When I was 11, I was diagnosed with aortic stenosis or a heart murmur as it was called back then. It was diagnosed actually on the day of my hip surgery I had as a child. I was followed closely by the top cardiologist at Rainbow until somewhere in my teens and wasn't given any precautions other than antibiotics before dental work.

Life got wonderfully busy and full with children. Fast forward to 2004 when we were blessed with our littlest guy, Michael who was born with Down Syndrome. As many kids with DS are, he was born with some pretty major heart problems. We were lucky (I mean blessed ) enought to avoid open heart surgery but did manage to spend a huge amount of time in cardiology offices. When he was almost 2, we had switched cardiologists. While this new doctor was taking down our family history he was the one who was very alarmed at the fact that I had been diagnosed with aortic stenosis and had not been seen by a doc for it in about 20 years. He urged me to follow up on it asap.

My first follow up was uneventful but a year later, the new doctor in the practice told me that with aortic stenosis I am at risk for developing aneurysms in the aorta. My other risk factor is that my dad actually died from a ruptured aortic aneurysm.

In Feb of 2008 I elected to have my hip replacement surgery. Prior to this surgery, I had to be screened by the cardiologist. At this time, it was found that I do have an aortic aneurysm which measured 4.5 cm. This size is considered stable and I was o.kd for surgery.

Follow up in April of 2009 showed that the aneurysm had grown to 5.2 cm. I was then referred to a surgeon as this is considered rapid growth and the size is considered surgical. The stenosis of the valve has also worsened. The fact is that the valve would need to be replaced within the next couple of years even if the aneurysm did not exist.

So, since May we've been surgeon shopping and just processing all of this in general. In order to be seen at the Cleveland Clinic, I had to send them all of my test films for review. I expected to get a call back from them to schedule an appointment with the surgeon I had found there. I did get that call but the appointment they offered me was pre op testing and a surgery date of July 7th.

Shocked we were but went through with the testing saying the whole time that we were at the CC really only to find out if this was truly necessary now. We were assured that if there was any doubt that it was necessary, we would be given the option to wait a while.

After 3 intense days of testing, we met with Dr. Lars Svensson, who not only told us that that it would be very unwise to wait he also told us that the aneurysm actually measures 5.7 cm. The risk is that the aorta could rupture and the survival rate from that kind of event is very low. With my stenosis creeping into the moderate range at 1.2 cm I am feeling some symptoms set in. Once symptoms set in with the stenosis, survival is limited to just a few years without valve replacement.

So, the fact is that I have 2 conditions. Aortic stenosis which causes some symptoms and requires an aortic valve replacement soon after symptoms appear. Then there is the aortic aneurysm which has no symptoms but carries with it the risk of sudden rupture. For this they will replace a portion of my aorta with a dacron tube.

I will be admitted tomorrow July 6 to the Cleveland Clinic. They like to start IV fluids the day before this surgery. Surgery is scheduled for July7th. I am expected to be in the hospital for about a week.

Gil will update this site from the hospital during surgery.

Thank you to all who have prayed for us already. I can truly feel the support of those prayers. Please pray for Gil and the children as we go through this very scary week. Anyone who knows me knows that the hardest part of this for me is being away from my family especially my little Michael. I am so blessed to have the family that I do who love and support each other, but as mom I can't help but worry about each and every one of them. Your prayer support for them during this time is very much appreciated.

The absolute highlight of my 4th of July yesterday was my time spent in front of Our Lord at the Poor Clare Chapel. I felt assured during that visit that I am in His hands and all will go well.

I promise to use some of this time to offer prayers for all of you and your intentions. Thank you all who are here for me and my family.

Barb