First Day of (relative) Freedom

Today was our first full day out of the hospital! We enjoyed it! We traveled to an undisclosed location (not far from the hospital), ate a delicious bbq lunch, played at the park, had ice cream and visited with family. It was fun! We are getting the hang of the IV medication and think tomorrow will be much smoother. We've got it all figured out, just learning how to time everything for the most possible sleep! Speaking of which, we both woke up feeling absolutely exhausted this morning. We missed the nurses! The hotel bed was like sleeping on rocks and we both had sore backs and necks today. Dan said he was wishing for his hospital bench!

Yesterday after the home health nurse showed up an hour late to train us, we joined the Rollers for dinner before they had to pack up and head home. Drew fell asleep in the car on the way home and slept through his oral meds, IV meds & dressing change. I guess he was tired! Ava slept with my parents in the hotel room right next door and we could hear her singing herself to sleep past ten o'clock!

We were very sorry to miss our friends' wedding today. Congratulations to Tony & Kristina! We wish we could have been there to celebrate with you today and look forward to seeing all the pictures!

Drew passed out at the hotel

Self portrait

Drew showing us his IV eclipse ball

Enjoying some ice cream in honor of Kate

Walking with John

Post-Op Day 35--We've Left the Building!

Woo Hoo! We're out of there!

Drew was acting really cranky this morning and I was afraid he was trying to get sick just when we were about to leave! Luckily he seems fine now and hopefully he was just as tired of being in the hospital as I was. We had to have them change the dressing on his PICC line before we left and that was pretty traumatic as usual. Lots of tears and screaming, but we kept telling him it was the last thing he had to do before he could go to the hotel. Except, then his line came out a little bit so they wanted to do an x-ray to make sure it was still in the right spot. I swear it took forever! The last hour was the slowest! I finally went out to go for a walk and of course, the second I left they discharged us! So now we're all at the hotel and I'm just trying to get as organized as possible. We are waiting for the Home Pharmacy people to come deliver our supplies and then teach us how to give the antibiotics.

Drew gets his IV linezolid at 7 am, 3 pm and 11 pm and his IV Ceftriaxone is at 9 pm. His oral medications, Lasix and Aldactone are at 8 am and 8 pm. If we have any free time in between we can visit some local attractions and we are to "use our discretion" about where to go. We are still suppose to be careful about crowded places because of the risk of infection. When I asked about our radius of how far we are allowed to go the attending doctor said "we have a don't ask don't tell policy, just don't tell me where you're going." So I won't!

Our schedule for next week looks like this:
Monday, June 30th: 12:30 cardiology clinic for them to check the incision
Thursday, July 3: 7:30 CT, then an x-ray, 12:30 appointment with cardiology, then hopefully removal of the PICC line and freedom to go home!

We've met some wonderful people at the hospital and I will continue to think of them even though we won't be seeing them everyday anymore. Since we have to stay local I plan to do a little shopping and bring some joy to those families who are still in the hospital or still waiting at the RMH. I'm near tears just thinking of the love and encouragement we've received since we've been gone. Thank you everyone! We couldn't have done it without you!

Drew and Kiersten, our favorite NP

Last x-ray

Last pizza in bed

Drew riding into the elevator

Drew is outside of the hospital!

Family Photo

In the car

Back at the hotel

Post-Op Day 34

We had a great day today!

Ava and I had baths and got ready at the hotel. The first thing she says when she wakes up is "I go back to hospital?" She loves being with her brother! So we got over there around 9:30 and then the kids played in the play room. Today Dan made the most beautiful and complex train track! I told him he should be the volunteer track builder at the UCD play room when we get back to town. Then we got a surprise when Grandma and Grandpa arrived before noon! They were on the road at 5:30 this morning to come visit us and help out with the kids. Drew jumped up to give Grandma a hug when he saw her.

Then, we had a visit from the Home Pharmacy people and Dan and I learned how to flush a line and change the cap. We're that much closer to being actual nurses now. Tomorrow we have a nurse coming to teach us how to administer the IV antibiotics and someone else to deliver our supplies to the hotel! They expect to discharge us around 1. Yay! I cannot wait! I will be sure to let everyone know once we are out of the hospital. We might need a moving van to get all our stuff out of that room!

Drew and Ava playing a game with Grandpa

Drew playing with his squirt gun outside

Mommy & Drew snuggled up outside

My fancy calendar--it's a good thing we're leaving tomorrow or I would have had to make another one!

Post-Op Day 33

We had a pretty good day today, despite Drew not being in the best of moods. Lots of playing in the play room and riding bikes. The big joke today was how Drew is a "phantom patient" because he's never in his bed. That sounds like a good reason to send him home to me!

Speaking of which, we got the approval of surgery to be discharged to the hotel. They want us to stay local and check in once a week with the PAs. They will schedule the CT for two weeks after this latest round of antibiotics started, which happens to be July 4. We'll be celebrating our independence from the hospital here in Palo Alto. That's better than celebrating inside the hospital so I'll take it. Now we just have to get everything squared away with the pharmacy, the home health people, and the people who need to teach me how to give the antibiotics & manage the PICC line. They are planning to send us home on two IV antibiotics plus two oral meds (lasix and aldactone). The word is we'll be sprung by Friday, but you never know...

Ava and I are back at the hotel for the night. Dan is taking the night shift at the hospital and is relieved that we have our old roommate back (we had one night of a crying baby). Isaiah is a sweet 17-year old boy who is now waiting for transplant. His family is so sweet and friendly and we are glad to have them back as roomies. And they like it cool just like us!

Drew and Ava at pet therapy last night

Drew and his trains

Drew's arm wrapped up for bathtime

Post-Op Day 32

Good afternoon!

I took the night shift last night and gave Dan his first night of sleep at the hotel with Ava. They had a good night and so did we. It's not so bad sleeping here, if you don't mind lots of interruptions. We have a sweet 17 year-old roommate, but I think he's moving down to the PICU tonight and we're getting another roommate.

This morning the surgical PA came in to do the dressing change. She thinks it looks really good and we are no longer packing it. In fact, she said we only have to do it once a day now. Yay! So I tried to convince her that they should let us leave. He's only on two IV antibiotics, everything else is oral and the dressing change is just putting a clean piece of gauze over the wound. I'm pretty sure I can manage that. Even if they make us stay locally and I have to bring him in every day, that would be better than staying here. So I mentioned this to the surgical PA, the NP, our nurse today and our social worker. It sounds like most people think we could work something out, but we have to hear what Dr. Hanley thinks. Here are the options I've heard:

• discharge us to RMH or hotel. They would have to change one of the IV antibiotics to oral and then teach me how to give the other one. We would have periodic appointments for them to check the wound.
  
• discharge us to RMH or hotel, and have us go to the "day hospital" for IV therapy. I guess it's like an outpatient clinic or something.
• discharge us home, probably with one IV antibiotic and one oral, and do follow up care with Dr. Mainwaring at Sutter.
• keep us here forever and ever.

This could occur soon, or in a few days, or never. They might want to do the CT before we leave, or after two weeks, or never. Everything is up in the air until we hear from Dr. Hanley. I'm hoping we hear from him sooner rather than later.

Today our pastor, Kevin, came to visit us. We had a fun secret excursion (I dressed him in street clothes so they wouldn't try to stop us from leaving) to the duck pond/fountain, ate some yummy tri-tip sandwiches and had a nice visit. Then we had some time in the play room, watched another dinosaur movie, rode bikes and saw the trains. The more I see Drew just acting like a normal kid, the more convinced I am we need to get out of here!

Nice looking incision

Secret trip to visit the ducks

Don't we look like a normal family visiting a pretty fountain?

Post-Op Day 31

Hello! Sorry for the lack of posts for the past few days. I was out of town (and had a fabulous time) and Dan said he was too exhausted after chasing Drew around on his bike with the IV pole all day.

So not much has been going on around here. Just IV antibiotics, dressing changes twice a day and figuring out ways to pass the time. We tried to get into the Ronald McDonald House, but have heard that it's nearly impossible, so we are staying at a hotel at a discounted rate. We were staying at Kathy's house, but since Scott is home from college and is working we thought he should have his room back. And now he's sick, so it's a good thing we have another place to stay. Plus we are keeping Ava with us more and trying to re-establish somewhat of a routine for her.

Today Drew got to take his first real bath in a month! He had been getting sponge baths in his bed, but his incision is healed enough now that he can take a bath in waist deep water. We did have to rig something up to protect his PICC line from getting wet, but I forgot to bring my camera in the bathroom. I'll try to remember next time. For now I'll leave you with a picture of Ava's nap in Drew's room today. It only lasted a half hour, so you can imagine how she was the rest of the day...

Post-Op Day 28

Today we switched up the antibiotics. I guess three weeks of vancomycin is enough. It's time for the big guns. Drew is now getting linezolid, which apparently can treat MRSA and vanc resistant bacteria. Sweet. He is also still receiving the cefotaxime. The new plan as of this morning is to treat with these two antibiotics for two weeks then do another CT. If the "abscess" is the same size or smaller they will send us home with another two weeks of oral antibiotics. If not, I guess we reconsider surgery. We also heard the x-ray from this morning looks great. Which we could have guessed since his oxygen is back up at 98 or higher. We noticed Drew's teeth have been looking gray and today they looked even darker. The NP says it's from the iron he's taking, so now we are supposed to mix it with juice and have him drink it through a straw so it doesn't coat his teeth.

Drew enjoyed some good play time today and created the biggest and longest train track ever! Ava got to spend some time playing at the hospital too, but she prefers to play in the kitchen and make us sandwiches that are "really hot." She got a much needed haircut today. Her bangs look really short, but I guess at least she can see now and it will grow back quickly. She is spending the weekend with Heather & John. I am going to a bachelorette party in Tahoe on Saturday night so Dan & Drew will be on their own until Sunday evening.

There were some fun things that happened today. The NP hooked me up with a massage from one of the therapists who works with the kids on this floor. It was only a fifteen minute chair massage, but it was really sweet of her to arrange it for me and I enjoyed it. This afternoon there was a harp player right outside our room and Drew was very intrigued. Later he went out the door looking for the "heart." The only other exciting thing that happened today was our A/C war with our roommate. I don't know how it is possible in this heat, but apparently they were freezing all night. The thermostat is on our side of the room, but their nurse must have come over and turned it up to 80 degrees. Dan woke up really hot and changed it back to 70, not realizing that they were cold. Then they complained all day about how cold it was and had engineering come check the thermostat (which was still set at 70). We've reached a happy medium at 74, but we won't be sorry if they get discharged tomorrow and we can keep ourselves cool and comfortable again.

Drew checking out the harp

Ava's new haircut

Post-Op Day 27

Dr. Hanley came to see us today, and it was the talk of 3 West. Our nurse had never even seen him before and was asking me what he looked like! The great plan we've been waiting to hear is to wait and see. Are you kidding?! I hate waiting! Dr. Hanley says that it's very difficult to tell a normal pocket of fluid that is present after surgery from an infected pocket. He doesn't want to jump right into surgery unless we are sure that there is an infection, because it would mean cutting through his incision that we already know is infected and that would not be a sterile situation. We could use an ultrasound and a needle to try to suck up some fluid and culture it, but even that would require a good amount of sedation and the abcess is right next to his heart so there is some risk in doing that. So the idea is to treat the infection we can see, since we're not going home until that is taken care of anyway. That means we continue the IV antibiotics and recheck the wound every seven days. Once it looks good enough to discontinue antibiotics we hang around for a few more days to see if Drew develops a fever, his white blood cell count or CRP levels increase...basically we wait and see if he gets sick. The attending cardiologist on the floor was also here and said that sometimes these infections take 4-6 weeks to treat--we are finishing our third week of treatment.

So, I asked about transferring to a hospital in Sacramento so we could at least be closer to home. Dr. Hanley didn't like that idea a whole lot. He said he feels responsible for Drew's care, that Drew has a very complex cardiac repair, and that here Drew has doctors that know him the best. While he doesn't think there is a very likely chance that Drew will take a sudden turn for the worse, if he does he would like him to be here. I'm not sure that I agree that we've got the doctors that know him best here, since our cardiology team at UCD has been caring for him for four years, but I guess he probably does know the inside of his heart the best. So I asked if it was possible for us to go to Sutter (which I'm not sure that it would be with our insurance) since Dr. Mainwaring is there and was present for Drew's surgery. Dr. Hanley said he would feel more comfortable with that if that's what we want to do. So we have to decide and if we do want to move forward with that plan they have to check with Dr. Mainwaring and make sure it's ok with him (I think it is) and that he's not planning any vacations or anything. Dan and I need to discuss this in further detail before we decide what to do.

Also, the ID (infectious disease) doctor came by after we had our talk with Dr. Hanley and pretty much said he disagrees. He thinks it is an infection and that surgery is the best treatment, but he will defer to Dr. Hanley and try to tailor our antibiotic therapy as best he can. He didn't sound very confident in that plan though.

In other exciting hospital news, Drew had two friends come visit today. Jacob, Eben and Drew had a lot of fun together. It was great to see Drew acting so much like his normal self, running around chasing them, being silly and riding his bike. He also had fun this morning with his squirt gun outside shooting all the plants and trees. And he got to go the gym today for his PT and got to play with an obstacle course, throw and kick a ball and play basketball. I'm telling you, this kid is ready to go home!

Drew outside with his squirt gun (thanks Kathy!)

Drew, Eben and Jacob watching a movie together

Post-Op Day 26

In case you're checking to see if we've got a plan yet, we don't. Dr. Hanley was doing one of his super long unifocalization surgeries today so we didn't get a chance to talk with him or hear his opinion yet.

So not much going on today besides IV antibiotics and some good time in the play room. And a visit from Kathy and Baby Isaac! Kathy you are so sweet! She brought a bunch of toys over for Drew to play with and then sat with him while Dan and I took our third break outside of the hospital together in 27 days. We just headed over to the shopping center and got a snack, but it was nice to be alone together even for a little while. It was funny though when we were leaving and I said to the nurse, "this is my friend from the internet that I just met yesterday. She's going to stay with Drew." She looked at me like "really?!"

After dressing change this morning Drew played at preschool for a while. Then rode his bike around a little bit. He ate a great lunch of pizza then went to the play room for a while and played with trains and made some buttons. We went to see the train and played a game by the fountain. He hung out with Kathy and watched a movie and colored in the giant coloring book she brought him. He ate an awesome dinner of stuffed shells then went and played some more! They had pet therapy again today and there were 7 dogs and 2 rabbits! I forgot to bring my camera but they did take some polaroids that we got to keep.

The dressing change this evening went well and we measured the wound again and it is now only .5 cm deep, which means it is healing! Here is a picture:

And to make up for the yucky picture, here are some cute ones of us having fun outside.



Thank you everyone for your kind words and encouragement and prayers. We really appreciate it and feel amazingly calm as we await "The Plan."

Wednesday Morning

I hesitate to post this because we are still not certain what the outcome will be. But I figured I might as well take you guys along for the roller coaster ride so you can hear everything that we hear.

We got the results of the CT scan, and it doesn't sound very good. There is a good size abscess underneath the sternal wall. Dr. Hanley (surgeon) and Dr. Lewis (immunologist & infectious disease) still need to review the scan themselves, but after getting the report from radiology it sounds like there are a couple of options.

One might be to go back to the OR to drain the abscess. I can not even fathom this possibility right now. That means another open heart surgery, another intubation, more chest tubes, etc. Basically starting over from square one. If this is the case I will request that Dr. Hanley is the only person whose hands are inside my child, since I'd like to minimize the possibility of anymore raging infections.

Another possibility would be some serious antibiotics for 4-6 weeks. I don't think I can stay in this room for another 4-6 weeks. I will go crazy. They will wish I was gone.

Of course, there is also the possibility that they will review the CT and come up with some different course of action. Who knows? That is the fun of being in the hospital.

So please pray for wisdom for the team of doctors that will be making these decisions. Please pray that we will be able to stand firm and endure whatever the future holds for us. And pray that our faith remains strong. I will update again tonight when hopefully we will have more information.

Post-Op Day 25

Another agonizingly slow day.

Apparently the doctors don't even bother to do rounds anymore. Seriously, the team did not come in today, but I did talk to the NP. She said they did round as a team, but didn't go into everyone's rooms because the attending who's on is also the chair of some department and there is a crisis going on in the hospital so he had to be in meetings all day.

The immunologist did come by to see us though and had some interesting news to report. He says that the T & B cell subsets they did all came back with normal results. Not just normal for Drew, but NORMAL results. As wonderful as that would be Dan and I can't help thinking they must have mixed up Drew's blood with some healthy kid's. His t-cell percentage which had gone down from 38 to 36 last time we had it checked in January was 55 this time. It just doesn't seem possible it could jump 20 points when it normally only fluctuates by 2 or 3 points at a time. Dr. Lewis (I think) also recommended doing a CT scan to see if Drew has a puss pocket. Sounds lovely. His concern is that the antibiotics may be working for now, but if there is a pocket his infection will come back once we stop antibiotics. Also, they cultured his wound again (it looks much better, more like a scoop now instead of a tunnel) and are hoping that once it comes back they can customize our therapy even further and possibly shorten our hospital stay.

Haven't heard how the chest x-ray looked this morning, but he has been off of oxygen all day and is satting right around 93-94. Dressing change went well and we used only half his normal doses of lortab and ativan because we don't want to over-medicate him or turn him into a drug addict. He was scheduled to have his CT at 6:30 and had to be NPO (no food or drink) since 2:30. About 6:15 they came in and said that radiology won't put contrast through his PICC line and wants a peripheral IV. This is after they've given him benadryl and he's sleeping peacefully & would totally lie still for the scan. I say that is very poor planning. Dan and I were upset, but decided they could do one try for the IV. They got their best person and three more nurses and almost got it on the first try. I allowed one more try and I'm glad I did because they got it. He was very upset though, as you can imagine. Waking up immobilized with four people holding me down and wielding needles would upset me too.

Anyway, we went down for the scan about 7:40 and thank God, he slept through it! He barely moved when we laid him on the tray and then again when we picked him up when it was over. We won't have results until the morning, but either way I'm glad it's over!

Drew wearing his own pajamas

Reading with Grandma Kathy

Ava having a turn in Drew's bed

Drew going in the CT machine

He looks so small in there!

Post-Op Day 24

Snuggle Soft

Not too much news to report today. The doctors didn't even make it to do rounds until 5:00!

They said we will continue both antibiotics and check the wound every 7 days. I said, if what you mean by every 7 days is, we wait 7 days then you tell us we can go home, that sounds good. Otherwise not so much. So we're officially hanging out with this plan until next Sunday. Which will make a whole month since surgery. Ugh.

Good news includes:

• the surgeons don't believe the bone is infected, which was a concern of the immunologist
• Drew got taken off of oxygen today twice, but is currently getting blow by because he's hanging around the low 90s
• Ava is feeling much better
• we all survived another day

Post-Op Day 23

Drew and his Daddy

So after we found out Ava is sick this morning, I went to the grocery store to get her some pedialyte and some gatorade and talked to her on call pediatrician. After dropping that stuff off with Grandma Kathy, I came rushing to the hospital to try and make it in time for the dressing change. Apparently some important surgical PA was here and didn't want to wait for me to arrive or the half hour for Drew's meds to take effect. I didn't make it in time, but Dan said it went well and he did it quickly. The PA did say that Drew's incision looks "very reactive." I'm not sure what that means, but it doesn't sound very good to me.

Then I decided it was time for Drew to have another "bath." As I was carrying the tub full of warm soapy water to his bed I dropped the entire thing on the floor! Water went everywhere! At least we know the floor is nice and clean now.

Soon after that the team came in to do rounds. And the attending doctor had some interesting things to say. He said "we are in no way in control of that infection" and "nowhere near close to discharge" and "at least another week on antibiotics." Very encouraging. When I asked if it might be possible to transfer to our home hospital he said that the surgeons would probably not approve that with his infection the way it is, and there is a small chance they might want to open up the incision again, in which case they'd want us here.

My big Father's Day plans were to have our whole little family together and order pizza and have a little picnic outside. Since Ava is throwing up, we adjusted the plan and ate pizza with Drew's grandpas in the day room. Dan also got a special Father's Day key lime tart from the hospital. And one of the nurses (not ours) had the nerve to complain to me that she was working on Father's Day! I'm pretty sure she's not a father, I'm guessing her kids haven't been stuck in the hospital for close to a month, and I'm thinking she's being paid to be here so I was having trouble feeling sorry for her.

The immunologist did call yesterday and say she would come by today. I am very anxious to have her see Drew's infection and get her opinion on how things are being done here. So for the rest of the day we are waiting to see her and waiting for the play room to open and just hanging out.

Happy Father's Day to all the dads and grandpas out there. We love you!

Grandpa Mark, Daddy, Grandpa Dave and Drew

Dan enjoying his tart

A quick update & a funny video

I was planning to arrive to the hospital early and try to at least pick up a card & some coffee for the most amazing father & husband for Father's Day. But, my plans were thwarted when I found out after my shower this morning that Ava had been throwing up since midnight. Poor baby. This is her first sickness and I heard her throwing up with Grandma Kathy and she was saying No more and I don't want to! I called her doctor in Sacramento and they said this throwing up thing is going around and she should stop within 6-24 hours and to just give her clear fluids the rest of the day. So the post on what a great dad Dan is will have to wait, but just know that he is the only father that I see here sleeping at the bedside every single night. I think he's on Day 17 of sleeping in the hospital.

Here is a video we took of Drew high on his meds last night. He is so goofy!

Post-Op Day 22

Drew had a pretty good day today. We had a lot of visitors and he had a good time playing with everyone. There was one incident when one of the child life specialists kicked our friends (one of whom is a child life specialist that works with heart kids at another hospital) & their therapy dog out of the hospital that had me pretty upset, but besides him being a jerk, our day was pretty good. We made a trip to visit the train, a trip to the gift shop, spent some time in the play room and doing pet therapy with "Stanford approved" dogs.

Medically, today we added back another IV diuretic, Diuril, and another IV antibiotic, cefotaxime. At rounds they said that the effusion "doesn't look a lot worse," and that we probably weren't going home in the next few days, which is no surprise to me. They still don't have the results from the blood work back yet, apparently it takes a few days. Drew has been on between .5 to .75 liters of oxygen and satting between 94-97. He did well at both dressing changes, but the skin around his incision is looking kind of an angry red color (warning, there is a picture to follow), which is not great news. We have now been on IV antibiotics for 13 days, you would think the infection might be getting under control by now. His cough sounds awful, but he's not sick or contagious, it's just his lung being crowded by fluid. I hope and pray that the fluid is eradicated quickly.

Siri, Matthew and their rogue dog, Greta, visit with Drew

Drew's angry red infected incision

Grandpa Mark enjoying pet therapy with Drew

More pet therapy (I think I need margarita therapy)

Drew's Sunday school teacher, Miss Marisa

Ava blowing bubbles on one of the patios at LPCH

Drew being goofy and putting the cannula on top of his nose

Saturday morning update

I will post another update later this evening, but I have pictures and some news from yesterday.

The big news is that we escaped having to insert a chest tube, at least for now. They increased his IV lasix and we are hoping that will do the trick. Also his oxygen was weaned from 1 liter to .5 liters and he's been satting at 97-98, which is great. He has been coughing a lot and had sort of a rough night, but we think it's because of the effusion. I've been asking for an immunology consult for about a week because of Drew's infection and they keep putting me off. I finally called our immunologist from UCSF yesterday and she gave me some advice. She said that she likes to put her immunocompromised patients on two antibiotics to make sure they have adequate coverage and that she would have infectious disease look at his wound if it didn't look better by Monday. After I told the docs here that I called my immunologist, they finally consulted the one here. She actually has privileges at UCSF and is going to look up Drew's old results and she is supposed to see us today. They did some blood tests last night and they might decide to give him IVIG depending on the results.

Yesterday Drew's buddy Jonah came to visit and they had fun together. Jonah especially liked how Drew's bed could move up and down. They also visited the library together. Grandpa Mark also came up to stay for a few days and Drew had fun with him too. He was in a pretty good mood yesterday until about 5 when he was acting pretty tired. He fell asleep at 7 and slept most of the night, aside from coughing fits. We had an awesome nurse last night, very type-A, just how I like them! She even measured how deep Drew's wound is and it is 1 cm. It will be nice to have a number to compare it to later. That's all for now, I'll post an update later today after rounds.

Drew visiting with Carly

Drew sleeping sideways again

Mommy and Ava got matching princess necklaces

Drew hanging out with all his dinos and his favorite snack

At the hospital library with Jonah

Ava riding Drew's bike

Drew checking out the gift shop