Tuesday, January 29, 2008


The teams from UCSF and UCD conferenced today. I got a call around 10:30 from our cardiologist. The consensus seems to be that Drew can and should have a two ventricle repair! This is wonderful news, what we've been hoping and praying for for the past four years. You'd think we'd be jumping for joy, but things are complicated. We are confused and are still seeking out second opinions. Drew's records are still being collected to send to Dr. Hanley and should be sent out by next Monday. We have also made an appointment for a consultation with Dr. Raf, a surgeon at UCD, on February 11.

The concern is that his surgeon at UCSF has had two chances to do a repair on Drew and hasn't done it yet. Which makes us wonder why he hasn't done it, and if he would do it this time. It raises a lot of issues for us. If all the doctors say the same thing this time, how do we choose? If the two new doctors say that they could have done a repair as an infant, does that mean we should leave the hospital, surgeons, nurses, and staff that we've come to know and be comfortable with? Will insurance pay if we go to Stanford? If Dr. Raf can do the surgery at UCD, why did we get transferred to UCSF when Drew was an infant? Why wasn't he our surgeon to begin with? As you can see, there are more questions than answers and we are just trying to figure things out right now. As usual there is more WAITING. I hate waiting. Perhaps that is the lesson here. Learn how to wait.

Anway, Drew stayed home sick from preschool today, but now I am wondering if he is really sick. He's a little sniffly, a little more whiny, has had an occasional low fever (does 99.5 even count as a fever?) and that's it so far. I guess we're better safe than sorry, but staying cooped up in the house with the kids in this weather is no fun. We've seriously been watching movies all day today!

Drew's birthday is coming up in less than two weeks and I still have no plans for a party. I have a great idea for a party, but the place is not calling me back, and is seeming like it isn't meant to be. I might have to throw something together at the last minute.

Friday, January 25, 2008

Second Opinion

I spoke with Dr. Hanley this morning. We only talked for about fifteen minutes, but he seems very sweet and so humble! He apologized for taking a day and a half to call us back (I'm sure he's quite busy!) and then he introduced himself and said he didn't know if I knew his name (of course I do!). So he asked me about Drew and I gave him the information that I know. He said he could not give me an official opinion until he sees Drew's records and the images from his caths and echos. But, he did say something a little bit troubling. He said, based on the information I gave him, he's surprised that his surgeons haven't already done a repair. He went on to say that in his practice, he probably would have done it neonatally. This information literally made me sick to my stomach. To think that Drew could have had only one surgery that he would have no memory of! That would have been wonderful. But there is no sense in worrying about what could have happened. What's done is done and we need to move forward from here.

After I got off the phone with Dr. Hanley I called our cardiologist and asked him to begin the process of sending our records over to Stanford. He asked what Dr. Hanley said and after I told him, he said that he wanted to discuss it with me in clinic, but that he basically shared the same opinion. He's contacting UCSF to ask them to send what they have, he's sending what he has from UCD and we'll see what everyone says. UCSF conferences on Tuesday and Stanford conferences on Wednesday, although they may not have all of our information before then. So, it's more waiting. That seems to be a theme lately.

In related news, we have been waiting for four years for all of Drew's teeth to come in and the last two have finally made their debut! I just noticed it today, but the two teeth that Drew has been missing are now coming in. I was so excited to see them! But it also makes me a little sad, because I'm so used to his little smile the way it is. He'll be so grown up looking now.

Thursday, January 24, 2008


I called Dr. Parrish on Tuesday and found out that they normally confer with UCSF on Tuesdays (not Fridays, like I thought). They were scheduled to discuss our case that day, but the surgeons were called out (probably to do some lifesaving surgery) before they got to us. They have Drew on the schedule for next Tuesday. So we have more waiting. We decided to cancel Drew's appointment for Thursday because he doesn't need to be seen, really the doctor wants to talk with us about the surgical plan. We decided we would talk on the phone after Tuesday's conference. The big question will be, do we want to get a second and possibly third opinion? Dr. Parrish says we need to say to him "we want a second opinion" because it is not his place to suggest one, although since we have been discussing it he told us he thinks its a good idea. As he said, "if I were going to have them cut open my chest, for the third time, I'd want to be sure I had more than one guy's opinion on it." Which is where this interesting story comes in...

After we got home from the hospital last weekend, Dan says to me "Oh I forgot to tell you what my dad told me while we were at the hospital."
"Oh, what's that?" I say.
"I guess someone he works with at the Gallery, her father is a pediatric cardiothoracic surgeon at Stanford."
"What?!" I gasp. "Are you serious?"
"Yeah, his name is...Dr. Hanley?" he says as though he has no idea who that is. "She said he would be willing to talk with us if we are interested. I have his email and phone number."

OK, so I guess my husband doesn't follow the heart blogs much, but still, he has no idea who THE DR. HANLEY is? He is like the man of pediatric heart surgery. He is a world renown heart surgeon. He was formerly the chair of pediatric cardiothoracic surgery at UCSF before he left to help Stanford begin their program. He pioneered the unifocalization surgery. And apparently, his daughter works with my father-in-law. Is that insane or what?! So we put in a call to him and are waiting for a call back. That makes the second opinion decision a little bit easier I think.

Tuesday, January 22, 2008

What's next?

I've been hearing this question from family and friends and the answer is we still don't know. The teams from UCSF and UCD usually conference on Fridays, but since our case was on Friday I doubt they had a chance to discuss it. We have an appointment with cardiology on Thursday, and I don't know if they will have any information for us then either. I will be calling Drew's cardiologist today though, because he should at least have the results and can share what his opinion is. I think it may be better to take Drew to the appointment on Thursday and just talk to the doctor on the phone on Friday. He's old enough now to understand some of what we're talking about and I don't want him to be scared. This cath is the first time that we had the doctor explain the risks and sign consent in another room. We really need to be careful about what we say in front of him.

Since Friday I have been waiting for my very bad day to happen. So far I have avoided it. It is my hope that since today we will be resuming our normal activities I may not have one this time. What a blessing that would be! Thank you to our wonderful friends and family who have watched the kids, made us dinner, and let us know they cared. Your support really means a lot to us.

I've had this rolling around in my head for a few days now so I think I'll just get it out now. Right before our appointment someone asked me if the cath is a big deal. And while it's not a big deal in the way that having my newborn sliced open, his chest cracked and his heart stopped is, it is a big deal. This time I was not as worried about him physically, although there was a small seed of worry that he'd be ok. (This was not helped when the doctor explained that they might tickle his heart and cause it to beat an extra beat which would require them to shock him out of it, or that they might puncture his heart causing it to bleed requiring emergency surgery, minutes before they took him up to the cath lab.)

The bigger issue for me is the potential long-term emotional damage that this is causing in my little son. And the fact that I can't do anything about it. This was the first time that Drew was scared before we left. He cried in the car and said he didn't want to go to the hospital. I just realized that he grinds his teeth in his sleep. My poor kid, who is the tender age of 4, is so stressed about his little life that he grinds his teeth at night. When we got home from the hospital Friday night we tried to discuss what happened that day with him. I asked him if he remembered what happened and he said "I was scared. I was scared of the operation." I tried to reassure him that it was ok to be scared, but that it was over and he was safe now with his mommy and daddy. But it breaks my heart. The things I have to say to him, that I never thought I'd say. As I explain that it's ok to be scared and angry and sad, but that being brave means doing what you have to do anyway, it hurts me. It's all I can do not to cry while I say it. And then there's the IV issue. God, that is by far the worst part of any of this. This time we were waiting in the hallway for them to get it placed. Well after three tries they gave up and did the procedure without the IV. But we had to hear him screaming while they tried. That is the only time I cried that day. Listening to them torture my child, powerless to stop his pain.

Anyway, things went pretty well with the cath, we got favorable results and we did get to go home the same day. But it was still a traumatic event. I am immensely relieved that it's over. And just enjoying the few days we have before we know when the next battle is coming.

Friday, January 18, 2008

We're Outta There!

Yay! We were discharged around 5:30 and made it back to Grandma's house by 7:00. Drew woke up around 3:00 and watched a movie and just held some chicken nuggets in his hands, but didn't eat them. He woke up saying his neck hurt and his tummy hurt. Got him some tylenol for the neck and some goldfish for his tummy. He drank a lot of water and was pretty whiny. But he's happily watching yet another dinosaur movie on Grandma's couch now. We plan on staying here tonight and getting some good rest. Then we'll head home in the morning where my mom is waiting to take over caring for us.

Thank you all for checking in on us. We really appreciate all the prayers and support.

Now, I'm off to have a well-deserved beer.

Me and Drew watching a movie when he woke up. He wanted me to "hug him closer."

Just after Drew opened his present for being so brave. He looks excited, doesn't he?

Getting ready to leave the hospital in the wagon

He's Finally Back!

I don't know about you, but that seemed like a really long 4.5 hours.

My sweet boy is back in his room, sleeping like an angel. I can't tell you how relieved I am to have him back next to me! We talked to the cardiologist who said Drew did well and they got everything they needed to see. He said he got the needle in right away and injected the fentanyl before they inserted the catheter. They had to go through both his groin and his neck to see all the parts of his heart. And even though we're not getting our hopes up yet, he did say he didn't see a reason a repair couldn't be done. The doctor wants to get an echo before we leave and if they can't see well enough with that he'll want an MRI. He wants to get all the info we need to decide which surgery is best. He also said the pressure in his pulmonary artery is lower and that Drew is ready for surgery no matter which one they decide to do. So that's all good news.

Now he has to stay here for 6 hours for observation and he has to keep his legs straight that whole time. We're not even suppose to let him sit up to eat, he can only lift his head. That sounds like it will be difficult so I hope he sleeps most of that time. We have chicken nuggets and goldfish waiting so he has something he loves once he wakes up.

Here's a picture of my little guy resting.

Thanks so much for your thoughts and prayers!

He's in the cath lab

Drew's in the cath lab right now. He was a little trooper this morning, although a little whiny. He didn't want to come to the hospital and he kept asking for a snack. Once we got into our room he did ok with the medical bracelet, leads, thermometer, blood pressure, etc. He didn't want to take his medicine and it tasted yucky. He watched his dinosaur movie on the laptop and got really sleepy from the versed. Then we went to the cath lab.

Things didn't go as well up there. They couldn't get the IV in and we had to listen to him screaming from the hallway as they tried three times. That woke him up so he needed more sedative. They are going to have to start the IV in his groin where they are threading the catheter and then give him the IV sedative. Poor little guy. It was breaking my heart.

But he's in there now and we have the pager. They will page us when they are through, it will probably take about 3 hours. We are going to go get some breakfast and coffee. We'll update when we know more.

Thursday, January 17, 2008

We're Off

We've packed our bags and are ready to go. I haven't heard so much as a cough, seen a drippy nose, or heard a sneeze. It looks like things are set for tomorrow. We're heading out pretty soon to Palo Alto to stay with Grandma Kathy and then we'll leave early tomorrow morning for UCSF. Please keep us in your prayers! I'll post from the hospital tomorrow.

Tuesday, January 15, 2008

More Cath Info

Drew's heart cath is set for this Friday. I talked with one of the cardiologists from UCSF this afternoon and we are the first case of the day. That means we need to be in admitting at 6:45 am with no food after midnight and no liquids past 5:30 am. I think it's good that we're the first case because hopefully Drew won't have a hard time fasting since it's so early and he's not used to eating that early anyway AND we are more likely to be able to go home the same day.

I've had lots of mixed emotions lately (what else is new?). Last night after Dan confirmed to me that his mom will be able to watch Ava for us on Friday I sort of lost it again. Just the thought of packing our suitcases again, driving out to Palo Alto again, reading Franklin again, explaining to Drew that we have to go to the hospital even if he doesn't want to again, spending the week away from our friends & activities AGAIN was more than I could take. I am tired. Tired in my heart. Weary. I told Dan that I just want to have a normal life. And even as I said it, I knew that I don't get to have a normal life. As Dan said, this is our normal life. Well I hate it.

But it's nothing another day and a little perspective didn't cure. Another heart mom I know posted some links of some blogs of heart kids who need prayer. I know I shouldn't have, but I visited their sites. And while usually this is a very bad thing for me (I have a hard time compartmentalizing and often really FEEL the pain someone else is feeling) it made me realize that I am lucky to be where I am. Things could be much, much worse.

These two verses helped me get to a better place today:
Come to me, all you who are weary and burdened and I will give you rest.
Matthew 11:28

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7

Sunday, January 13, 2008

Ladybug Shower

One of my very best friends is having her first baby, a girl, this February. She is actually due on my birthday! So we are in SoCal and we had her shower yesterday. I wanted this to be the best shower ever, because she is such a good friend. She's thrown me a bridal shower and two baby showers and is so creative she made each event really special. She also took two weeks off of work when Drew was born and stayed with us in UCSF to lend her support and love. And she makes the six hour drive to visit the kids at least a couple times a year. So I wanted it to be perfect!

We had a delicious brunch including a yummy egg scramble, cheesy potatoes, stuffed french toast, bacon, sausage, fruit, juice and mimosas. We worked on a scrapbook of advice & encouragement for the new mom, played some fun games, then opened presents and had cupcakes. It turned out very nicely and I think everyone enjoyed themselves. She got a lot of little girl clothes! And today she is having her family shower (which I'm also attending) and she is sure to get lots more stuff that a first time mommy needs. Unfortunately, my camera ran out of batteries during the shower so I don't have very many photos, but here are a few that I got:

Some of the decorations

Me and Jamie

Some guests working on the "words of wisdom" album

Ladybug cupcakes (I made those ladybugs out of chocolate)

Chocolate covered carmel twist pretzels (party favors) & the invitation

Thursday, January 10, 2008

January 18th

January 18th is the new date for Drew's cath. I finally got the guts to call UCSF yesterday and they were able to schedule it right away. I give it 50-50 odds of actually happening on that day. It's next Friday, so we won't be going to preschool next week. We're already missing church because we'll be driving down to So Cal and back. Keep your fingers crossed Drew gets healthy and stays healthy until then.

Wednesday, January 9, 2008

No New Date

It's been a while since my last post. We are just hanging in there. Drew is doing better, still coughing, but no fever since last Friday. We are still doing breathing treatments a couple of times a day, but he seems well. He went to preschool yesterday, which he was so excited about! So was I! My mom got him a dinosaur movie and dinosaur book so we've been doing lots of dinosaur activities lately. I still haven't heard from UCSF about rescheduling the cath, so I guess I should call them soon. I kind of don't want to.

I've been busy this week getting ready for a baby shower I'm hosting for a very good friend of mine out of town. We are going to be making the six hour drive down to Southern California again this Friday. It's a little bit crazy, but she's that good of a friend. :)

Ava got a much needed haircut today. She was really looking raggedy. It's pretty cute. But you can be the judge.

And here's a picture of Ava helping Drew with his breathing treatment. What a good helper!

Friday, January 4, 2008

Feeling a Little Better

Last night I had a massage at Mellow Me Out. It worked! Everytime I get stressed or anxious I hold my tension in my neck and shoulders. Sometimes I don't even realize I'm stressed until I start to feel sore. Anyway a friend met me over there and the masseuse did a great job focusing on my problem spots. I felt much more relaxed when I got home.

But it was short-lived because even though Drew had motrin two hours earlier, his fever was still 101.1 at 9:30 last night. He was coughing a lot and even threw up a few times from so much coughing. We did breathing treatments every four hours. Around six am he sounded so bad I thought if we can make it two more hours I will call the dr and take him in right away. But after he woke up he looked a little better. Not quite so much coughing, no fever breaking through and he wanted to play and eat and drink. Unfortunately the fever came back (101 at 11:30) and we were supposed to bring him in for bloodwork. I got him a reprieve though, and we have permission to watch him until tomorrow. If he still has a fever tomorrow we will have to bring him in.

So he's feeling a little better, which makes me feel a little better. I even got the Christmas decorations down and the kitchen cleaned up today. I finally got the energy to call the cardiologist about rescheduling the stupid cath and he made me feel better too. He is such a nice man. Anway, for the first time since Wednesday I feel like we may be able to avoid the hospital this time. So keep your fingers crossed!

Thursday, January 3, 2008


We went to the doctor this morning and she said Drew's lungs sound clear. (Funny because his cough sounds awful.) She thinks he might have an ear infection now so we are getting antibiotics for that. She also said if he does have a bacterial pnuemonia the antibiotics will treat that too. When we got there this morning his fever was 102.6 and it wasn't quite time for his next dose of motrin yet. His sats were the same, around 78. We are going to continue breathing treatments every 4-6 hours around the clock, continue motrin around the clock and start the antibiotics. We are also pushing fluids and spending lots of time watching The Land Before Time. If he still has a fever tomorrow he may need to have bloodwork done and probably another chest x-ray.

While we were there I had her do an RSV test. If he has RSV I want it documented so I can raise hell with the insurance company who denied him his shots this year.

Here's a picture of my hot, red-faced little guy sitting on his couch bed with his dinos.

And a picture of Daddy reading him Franklin Goes to the Hospital at UCSF

Wednesday, January 2, 2008

The Long Version

What a long day!

I barely slept at all last night, I was so anxious about the cath and whether or not Drew was sick. He had started coughing yesterday, but just a little bit and with no other symptoms. We drove out to Palo Alto, but with a feeling of dread. Then he seemed to stop coughing for a few hours. Then it started up again. He went to bed and slept fine all night, no coughing. Woke up with the alarm at 5:45 so he could have his last liquid of the day (you have to fast before the cath) and started coughing again. We called UCSF, they told us to come in. I wish they would have told us right then that they wouldn't do the cath. But they didn't. On the way in, Drew was sad. He kept telling us he didn't want to go to the hospital, he wanted to go back to Grandma Kathy's. He also told us he was hungry. Then thirsty. We had to tell him that he had to wait until after the cath. It was hard for me to hear.

Then the cath was cancelled. We took him to breakfast at Crepeville right by the hospital. Put money in the meter. He had silver dollar pancakes. After breakfast we were walking out to the car and the meter maid was standing there about to place the ticket on our windshield. I said "It's not even out yet!" and she looked at me and replied "yes it is," placed the ticket on our car and drove away. And it was more than I could bear. I started crying, not because of the ticket, but just because of everything. I tried to control myself, and I finally stopped. My despair was replaced with apathy. I didn't care about anything. I was rescheduling the cath in my head, two weeks-my friend's baby shower, two weeks after that-Drew's birthday, two weeks after that-my birthday. We'd probably miss everything.

I didn't want to go home. Laundry was waiting. I still need to take down the Christmas decorations, and put the kids new toys away. I would have to take care of the kids, cook dinner. It all seemed too overwhelming. I experienced a roller coaster of emotions on the 2 1/2 hour drive home. I felt like I could not do one more hospitalization, not one more cancelled cath. I felt like I had been knocked down and I had lost the will to stand up again. I told Dan I didn't want to do this anymore. He said no one in our situation wants to do this. You just have to be brave. Like Franklin. I almost said something inappropriate about Franklin, something that involves alliteration, but I didn't. At one point Drew heard me crying to Dan and said "Mom. Why are you whining?" Then my sobs mixed with laughs. I didn't know how I felt anymore. After a while I'd feel strong again. "I'm a phoenix, rising from the ashes! I will do this, and I will do it with a good attitude. I will make a plan, I will be in control." And so it went, back and forth, despair and determination.

When we got home around 2:30 I took Drew's temperature. 100.7 I decided to call the doctor because I would be very upset if we waited til 5 and he got worse and we ended up in the ER. We were back in the car by 3 with an appointment at 3:30. By the time we got there his fever was 102, sats were around 78. The doctor heard a crackle in his lung. I hate crackles. She ordered a breathing treatment then checked his sats again. Still about the same. She ordered a chest x-ray. I really hate chest x-rays. It almost always means pneumonia. And pneumonia almost always means the hospital. Luckily, she did not see a pneumonia on the film and we have another appointment to see her in the morning. We're not totally out of the woods though, because often pneumonia doesn't show up on the x-ray right away. Tonight we are going to give breathing treatments around the clock.

While I was gone with Drew, Dan cleaned up the messy house and had dinner ready for us by the time we got home. He also had a glass of wine waiting for me. What would I do without him? No matter how bad things get, how overwhelmed I feel, he is always right here with me. And I am so thankful for that.

So, that's the long version. I'll post again after our appointment tomorrow.

Cath Postponed AGAIN

It's a long story, but the short version is Drew started coughing yesterday after being healthy & very careful for two weeks. We called UCSF this morning and they said to bring him in and they'd check him out. We were admitted, sitting in a room on 7N, had vitals taken and filling out paperwork when a doctor came in and said if he's sick at all we can't do the cath. Hmm, sure would have been nice if you said that when we called this morning before we drove here. Anyway, emotions are high, but we're headed home and will probably be taking him to the doctor today or tomorrow. More later. Oh, we also got a parking ticket as we were walking to the car after breaking our fast with Drew in SF.

Tuesday, January 1, 2008

Happy New Year

Have you ever wondered what it's like to have a child with a heart defect? I read this essay on the Hearts of Hope blog this morning and it really struck a chord with me. I guess part of the reason is because while everyone else is celebrating the new year, we are preparing for Drew's heart cath tomorrow. It's funny, I was totally ok with this until we got home yesterday. Then I started feeling overwhelmed, depressed, angry, etc. As I was putting Drew to bed last night I laid with him until he fell asleep. Then I stayed a little bit longer, just holding him, listening to him breath. I whispered to him that I loved him. And that I was so sorry for everything he has to go through. And I just laid there and cried. On New Year's Eve.

But I am looking forward to the new year. Dan and I are both turning 30 this year. With each passing year the kids grow and change so much and I look with anticipation at what the future holds for each of them. This year promises to bring many good things for our family. But I also know that it's not going to be an easy year. We will likely have Drew's third heart surgery in the spring. I'm sure there will be other hospitalizations. There will be colds that will make me wonder if and when it will turn into pneumonia. There will be events we have to miss because we can't take a chance with Drew getting sick.

This morning I was reading Franklin Goes to the Hospital to Drew. I told him that we're going to the hospital tomorrow and he has to have something called a heart cath so the doctors can see if his heart is healthy. He told me "it hurts me at the hospital." And I had to just say "I know it does, honey. But the nurse will give you medicine so it doesn't hurt as much." I told him he can choose what to bring. He wants to bring his dinosaur that walks, his pillow and his dog that he sleeps with. We're also going to bring quiet games and movies for him to watch when he wakes up and has to lay still. He's the second case of the day tomorrow and we will be checking in at 9:30 a.m. Please keep us in your prayers. I will post updates from the hospital.