Monday, November 29, 2010

Moving along

Things are progressing quite well. Al is moving a little more each day. Today he showered and dressed himself! That is a huge feat. I still have to help shave his head and tie his shoes, but two weeks post-op this is awesome. He even made pizza dough because the girls have been begging for Daddy's pizza.

I have to think two little twinkling voices have a lot to do with how well Al is progressing. Alyssa has been requesting cuddle time with him and Samantha gave a very teary Thanksgiving toast in which she asked that God make her Daddy all better. Let's just say my Dad was chasing the tears down his cheeks. I don't think Al really understood how much this has affected everyone until that moment.

Earlier on Thanksgiving, while Al was napping, Alyssa was in Papa's lap (my dad) and telling him, as best as a two year old can, how Daddy's heart was broken but it is fixed now and he's getting better. It was a very sweet moment. And Alyssa got some cuddle time from Papa.

We had a nice Thanksgiving at our house. My parents brought the food and cooked it here. I so appreciated that! And on Sunday, I got Al in the car and the girls off to my parents house so that Al and I got to go see Harry Potter. It was awesome and I'm so glad he was able to get up and out to see it.

I, on the other hand, took a break on Saturday. While Samantha was off with my mom, I took Alyssa shopping for a few hours. I felt I needed the break and that Al was well enough to be alone. Alyssa really loved it as did I.

Wednesday, November 24, 2010

1st Cardiology Post-Op Visit

Tuesday we went to our new cardiologist in Salinas. Al felt a little guilty about dissing the cardiologist who sent us to Stanford, but I could not stand the guy's drama. His outlook was so doom and gloom--it was too much for me to handle.

The new cardiologist thought that Al looked really well and that he'd recover just fine. I did ask if Al needed to be tested for Marfan's Syndrome. He said that this is a pretty sure indicator that Al does indeed have Marfan's. So a genetic test would be pointless because the greatest risk of Marfan's is that a young person would suffer an aortic dissection.

The Dr. does feel that Al will be able to run again next year. I did ask that he have a treadmill stress test when he is ready to run again. The Dr. thought that was a very good idea.

As Al becomes more active the Dr. will adjust his BP medication but the Dr. was very happy with the current 120/68. So we go back to Salinas next week for an echo to see what the aorta looks like now and how it's all healing. We'll then follow up the first week of January when Al's 6 weeks are up.

Sunday, November 21, 2010

Improvement

Al is getting better each day. His incisions are already healed in some spots . . . he'll only have a small line down his chest when all is said and done.

He's suffering with back pain and some occasional pain in his collar bone. I read the other day that the sternum is sewn together with wire. I guess that makes sense, otherwise how is it possible to keep the sternum together?!

Al is moving around more. He's walking around the house and sitting up for longer periods. He's almost able to sleep normally, which is a blessing because he really does need a full night's sleep. We've resorted to an over-the-counter sleep aid, but it works. He gets almost a 8 hours but he tends to wake up about the time the pain meds wear off.

We're charting (per Stanford's requirements) the blood pressure, pulse, temp., weight, and breathing exercises daily. The blood pressure seems to be good, although Dr. Fischbein wanted the numbers at 110/70. We're getting 120/68 on a regular basis. I believe that the bottom number (the resting heart rate) is the one that is most important. Five years ago his BP was 210/190!!

Al seems to be melting weight each day. He's lost 10 pounds since Tuesday. Of course he was training for the Big Sur Half Marathon (Nov. 14) and may be losing a lot of muscle right now.

We're meeting with a new cardiologist on Tuesday for a follow-up. He's with Salinas' Heart Hospital, which is associated with Stanford. It'll give us greater peace of mind to be with SVMH for his routine care. And next month we'll follow-up with our hero, Dr. Fischbein.

Al is trying to be a little more hands on with the girls each day. Alyssa's been very needy and wants me to hold her a lot. She obviously misses their playtime and visits to the park. Al was daycare two days a week before this happened and Alyssa just loved it.

Samantha is a very good helper for both me and Al. She's so happy to help Daddy.

As for me . . . I'm hanging in there. It's exhausting taking care of Al and the kids by myself. I crash as soon as the kids go to bed every night. I was able to go out for a few hours (kids in tow) today and it felt good. Al and I are hoping he will feel well enought to shuffle to and sit up for Harry Potter tomorrow. We're dying to go see it.

Tuesday, November 16, 2010

Home Sweet Home

I brought Al home today. He improved a lot since last evening. He couldn't sleep so he did two laps around the ICU. He can get himself up out of bed and is moving around much better. Before we left he took his first shower in nearly a week. I'm sure it felt really good. He loved the flannel pants and shirt that my mom and I made for him.

We left around noon. He was nauseated from the pain meds so I stopped and got him a sandwich from Andronico's Market. He ate the whole thing!

The car ride home was okay until we got to about Gilroy where the freeway changes to highway. The road is rougher and uneven. He started to feel sick again. We made it home and he quickly got in bed to stave off the nausea. He fell right asleep. I'm sure he'll recover faster now that he's home and in his own bed.

So next week we'll have a post-op with a local cardiologist and then we'll go back up to see Dr. Fischbein in a month.

Now that he's home I can get some rest and the kids will finally be at ease.

Thank you to everyone for your prayers, words of encouragement, and offers of help throughout all of this. You've made it much easier to cope for all of us.

Much love,

Erin

Monday, November 15, 2010

Almost Here

My brother, Kevin, and I went to see Al today. He was dozing when we got there but wanted to wake so we talked for a bit. He looked really good. His incision was healing very well.

We had meetings with the Cardio Nurse and the Nutritionist to learn about home care. There are a lot of things to monitor each day, but they provide checklists for everything. They talked about discharging him on Tuesday, but he had a bit of a setback this afternoon.

Yesterday he started getting up and walking with a walker. It helped the pain to hold on to something. He was hoping to get a shower today, but had to prove he could walk and stand on his own. So this afternoon they laid him flat in bed and made him get up himself and then walk with the walker. That movement caused a spike in blood pressure and his oxygen level dropped so he had to go back on the oxygen. He was in a lot of pain and it took a lot out of him. Of course, he didn't get a shower.

So I'll find out tomorrow morning if will be discharged. I'd rather that he stay there if he need oxygen. I'm pretty sure he won't come home if this is the standard right now.

Al was disappointed that the man next to him was discharged, but Al is still far behind. My mom reminded me that a lot can change in 24 hours. So we'll see what tomorrow brings.

Sunday, November 14, 2010

Up and walking

Al was downgraded to ICU Level 3 last night and now has access to a phone. As soon as he was settled he called us and got to talk to the girls. He is very hoarse because he had a breathing tube the day of surgery. It takes a lot of effort and a good deal of oxygen to talk too. It scared Samantha a bit because it makes Daddy sound sick.

I didn't go see Al today. We needed a day a home to do chores and recoup. Al was okay with that. Today's 49er game was a good distraction for Al.

I did start to work on making Al some flannel pants and shirts that button down the front. Of course, my mom is teaching me. I figured that Al would much rather have a button down shirt than try to put a t-shirt over his head every day. Plus it gives us easy access to check his surgical wound throughout the day.

Today Al had the last of the abdominal drainage tubes and the catheter removed. So he is now no longer attached to any IVs. He was able to walk a bit today with the aid of a walker. He said it felt really good, but that he could feel his chest where the tubing had been removed.

He hadn't eaten dinner yet because they were planning on a CT with contrast for this evening. He had an X-ray earlier--all part of the normal protocol.

I'm working from Stanford tomorrow--they have wireless access for the families (very nice). I am getting more anxious and worried about his home care so I want to be there when the physical therapist arrives and to talk to the doctor about a few things. I don't know yet what markers he'll need to pass before they release him. Up until now I've been more concerned about the medications and his blood pressure, which is normal (ideal is 110/72).

Al is progressing nicely and that is definitely giving us peace of mind.

Saturday, November 13, 2010

Day 2 of Recovery

So I had kind of a rough evening. The crying thing didn't go so well. Samantha is having a hard time with it and it's hard to watch her cry. She was happy when Uncle Kevin arrived. But he walked into the door and she started sobbing in his arms.

I can't stand not seeing Al so I went up with my mom this morning. Kevin got a crash course in babysitting my girls. (He did fantastic.)

We arrived after 10. He had been moved to another room--still in ICU Level 4. There was one nurse for two patients rather than a nurse for each, so it was a bit less chaotic. He looked a million times better than yesterday. He had only 4 IVs, down from 7 yesterday. He was sitting up a bit in bed since it's terribly painful to lay down. His arms were no longer swollen so he could move around a bit more. He said that he got out of bed and sat in the chair for 2 to 3 hours this morning while he nibbled on his breakfast.

They were hoping to transfer him to the lower level ICU today but they needed to get him off the blood pressure IV and get that controlled with pills instead. They were planning on removing one drainage tube--he has two. Overall he looked really good. He smiled and even joked with us. They kicked us out after about half an hour.

Al said the irony of the entire experience was that he finally found out his blood type--it's "Be Positive" (B+).

Stanford is aiming to send him home on Tuesday or Wednesday. It'll take approximately 6 weeks for the sternum to heal and overall about 3 months until life is normal. The first 6 weeks are going to be the hardest. He cannot lift or drive, of course, but only stand for about 15 minutes at a time. They recommend visits of no more than 15 minutes for the first few weeks after he comes home. He's very hoarse and it takes a lot of energy and oxygen to talk. Even drinking water takes his breath away.

I'm nervous about having him home and not sure yet about the bed situation. I guess we'll get that all straightened out in the next few days. So much to think about . . .

Friday, November 12, 2010

Day 1

I saw Al this morning for a few hours--I skirted the visiting rules for a while--but I got booted at 12:30. He looked good. Last night he was still a little green, but today he had his full color. When I arrived the physical therapist was instructing Al on how to get out of bed. He stood up, clutching a pillow on his chest, and turned his feet to sit in the chair. He was drinking a little bit, but not ready for solid food.

We talked a bit, but he doesn't have the energy or the desire to talk much. He was practicing his breathing exercises and with a dose of pain medication he was able to take deeper breaths, thereby inducing a cough which cleared the fluid in his lungs. Pneumonia is the riskiest part of this whole thing.

He said he felt like he was in limbo between sleep and awake. Mostly I just watched him sleep and kept track of every facial twitch to make sure he was okay. He did crack a smile when I told him that Troy Smith was our new go-to-man for the 49ers.

The Sandra Bullock-look-alike In Flight nurse, Sonia, has been visiting with Al since his trip up. She checked on him last night and today because she has been worried since she picked him up. She even calls me to check in. She brought him a hat with the Life Flight helicopter on the front and "Stanford Life Flight" on the back. Al will wear that one when he comes home.

I had to leave and came home to pick Samantha up from school. I was happy to do something normal. But now I'm finding it very difficult to be home alone with him at Stanford by himself. I feel the need to physically see him and touch him. It's so difficult, but not as hard as not sobbing in front of my kids.

My brother is coming down tonight to help out and distract the kids. I'm thankful for that!

Stanford hopes to move/downgrade him to Level 3 ICU tomorrow.

Thursday, November 11, 2010

One with a second chance at life

Thank you to everyone who has shown concern, extended a helping hand, or just showered us with kinds words and prayers. We are truly grateful and will never forget it.

Here's the story:

Two and a half weeks ago Al landed in the ER with chest pain. I've never seen him in so much pain. They kept him in ICU overnight and performed three EKGs, a CT scan, and an Echo cardiogram. The last showed some enlargement in the aorta. Al does have genetic high blood pressure which we've known about and had treated for 5 years. Who knows how long this went on before we found out.

The day after Al was released from the hosptial we were called to the office of the reading cardiologist who suspected an aneurysm. He had put in a call to Dr. Fischbein, a cardiothoracic surgeon at Stanford and requested an appoint ASAP. This week we were able to get into to Stanford.

On Monday Al had a CT and an Echo cardiogram at Stanford. We met with Dr. Fischbein and at that point we only had back the CT scan which did not show anything beside an enlargement in the aorta (an aneurysm). We were unable to see the Echo because the Dr. sent the Echo off to have a specialized radiologist create a 3-D Echo. Wednesday morning Dr. Fischbein called and told Al that he needed to have open-heart surgery. We immediately went to the local cardiologist who put Al in the emergency room at Hazel Hawkins as we awaited Stanford's Lifeflight team.

Al was at Stanford by 1 and I by 3. Once there Dr. Fischbein was able to show me the 3-D Echo. There were two large tears which cut horizontally across the aorta, just above the coronary arteries. The largest appeared to go about halfway across the aorta. The fluid in is heart was the leaking blood coming from the tears. There had never been an aneurysm--the bulge was the torn tissue.

This morning, Al went into surgery about 7:30. At 10 they had him open and hooked up the heart lung machine. At noon, the surgical team found themselves an hour behind schedule. They found a lot of inflammation around the tears, which indicated that the body was trying to fix itself. It took the team an hour to pull the aorta from the rest of the arteries and heart--the inflammation had caused the tissues to stick together. At 2 they had replaced the aorta and were beginning to reattach his coronary arteries to the synthetic aorta. They also reattached his own heart valve because it was in excellent condition. At 4:30 they had successfully taken him off the heart lung machine and he was able to breathe on his own. They watched to make sure that there were no leaks and began to close him up. At 5:30 Dr. Fischbein came to see me.

Dr. Fischbein said that he was surprised that when they took out the aorta they found the tear measured 270 degrees. They suspected that this started 6 weeks ago. The Dr. is amazed that he was able to stay alive for 6 weeks. By all accounts it should have killed him. Maybe the inflammation kept the pressure under control. Al is just so lucky to have survived this.

I finally got to see him at 6:30. He wasn't conscious, but when I held his hand and touched his face or talked to him his blood pressure rose. He still had his breathing tube in and at least 20 IVs. The next days, weeks, and month will be a challenge, but I am so thankful that he is alive and can be my husband for a lot longer.

I can't even begin to tell you how I feel. I'm thankful and grateful, and elated that I get a future with Al and that our beautiful children have their father. I can't say I won't ever take him for granted, because I'm human after all. But I will try my best to not take him or anything else in life for granted.

Al is a good man. He's my best friend and my partner. He's the father of our children and my rock. And I remind him every now and then that I was head over heels in love with him before we even went on our first date. And the heavens above must agree because I get to have him for a while longer.

-Erin

Friday, November 5, 2010

When life gives you lemons you make lemonade, until you've had enough



Halloween is over-thank goodness. The girls were busy with daycare and school Halloween parties and so were not too upset by a two-block trick-or-treating radius. They completely played the part of the beautiful princess. My mom made their dresses and they are beautiful.


Samantha was Tiana from The Princess and the Frog.

Alyssa was lovely as Belle from Beauty and the Beast.

Now on to the title of this post . . .
Al and I have had a rough couple of weeks. He had a stomach virus with which in combination with a prescription drug caused a severe burn in his esophagus and landed him in the ICU. Talk about scary. Luckily he didn't suffer a tear like we had originally thought. I like the non-life threatening events.

Since he entered the hospital under the pretense of chest pain the hospital was obligated to perform a series of tests to make sure his heart was in good shape. He had an abnormal Echo, but no one was overly concerned. So we went home and then received a call from the reading cardiologist who wanted to see us the next day. This guy was strange to say the least. At any rate he called Stanford. Turns out this cardiologist is prone to severe overreaction and eccentric diagnosis. Just let your mind wander and I'm sure you could come up with a few diagnoses. So now were set and have to head up to Stanford. We're betting that this is related to your run-of-the-mill high blood pressure. We just need to clear out all the ghosts in the closet before we can get on with our lives.

Al is still healing from the burn and has been slowly working back up to a solid diet--his pants keep falling down.

I would like our lives to go back to normal. I want Al to feel better for his peace of mind and mine. I need some sanity back in my life. It's hard being a single mom to three kids (Al included).