Saturday, May 31, 2008

Post-Op Day 8

We didn't make a lot of progress medically, but we did make some good improvements in attitude today. Drew got to visit the playroom for the first time today, and he played for about an hour. He played with the rice table, some hotwheels and he played Candy Land with two little girls. Then we went to visit the train for a few minutes before returning to his room.

We spotted a few spontaneous smiles today, a few at the playroom and a few while watching some favorite movies. The nurse even saw one and exclaimed "there's a smile!" To which he replied, "NO!" We are still hearing quite a bit of that word and a new heart-wrenching phrase he picked up, "you're hurting me." He was up a lot more today and really enjoyed playing with the dinosaurs that Baby Isaac sent all the way from Las Vegas. Thanks Rollers!

Drew was down to .15 liters of oxygen, which is such a tiny amount that we convinced the nurse to turn it off. So far he's holding steady around 95%, which is amazing! Hopefully we can get rid of the oxygen altogether. The pulse ox leaves burns on his fingers and toes so we've been moving the sensor every day. He's still been getting burns so we're trying to move it around even more, but if he doesn't need the O2 anymore, he doesn't have to be on that monitor all the time.

Have a good night and we'll see you all in the morning!

In the playroom

With Grandpa at the train

Out of bed, reading with Daddy

Saturday

Unfortunately there is not much news to report today.

The chest x-ray does look better today than it did yesterday, but his chest tubes put out 130 and 140 mls each yesterday. They generally don't talk about taking them out until he is around 45 mls per day. So it seems we have a way to go. Which is really disappointing because I think that is what is causing him the most pain right now. And the coughing. And when we make him move.

PT came in again today and wanted him to walk. Again he only walked a few steps (maybe 5?) and sat up for a while in a special chair. Then we took him on a wagon ride to see the train. He was in the wagon for about twenty minutes. As soon as we got him back in his bed he fell asleep. He's been asleep for close to two hours. I don't know if it's normal for him to be so weak. Part of it is probably that he's not eating very well either. I don't know if he's eaten anything today. He did drink some hot chocolate.

I'm feeling very frustrated today. These darn chest tubes are really holding us up. Drew keeps saying he wants to go home, and it breaks my heart every time I have to explain why we can't. He's becoming more and more irritated by nurses, RTs, PTs, etc. This is stuff that didn't use to bother him and now he cries and says it hurts. Please pray for his comfort & strength, that he would be motivated to get up a little more, and for fast healing.

We also got a roommate today. I feel I can't really complain because we were lucky enough to be alone for two whole days & nights. But, it is louder and this kid has about six people with him at all times. I hope Drew can still get the rest that he needs.

Friday, May 30, 2008

Post-Op Day 7

After rounds this morning the only orders were to have Drew get up and move around more. So pretty much everything else is the same. He still has 2 chest tubes, an IV and his pacer wires. Still on .25 liters of oxygen. Still holding all vital signs stable. He is now on only tylenol and motrin for pain and I think he's doing pretty good with that. He is also getting lasix orally and simethicone for gas. It crossed my mind that he may not need any medication when we go home. How amazing would that be?

Drew walked for the first time today. He had a lot of help from mommy & daddy, the PT and the nurse. It is quite the ordeal to get him in and out of bed. Can't lift him under the arms for six weeks, so we have to scoop him in sort of a chair sit. Then someone has to be in charge of the chest tubes, making sure they don't catch on anything and that his feet don't get tangled, and someone has to be in charge of the oxygen, for the same reasons. He only walked from his bed to the door and he did not like it! He had a single, sad tear running down his face.

I think this may be the hardest part for me. Making him do things that are uncomfortable, maybe even painful, but doing it because it will make him better. It is good for his lungs to be moving around and also for drainage for the chest tubes, which we'd like to get rid of. But he cries and shouts (quietly) and kicks his little legs. Poor guy.

He's been eating better, but still not normally yet. After his short walk and lunch he took a two hour nap, and so did we. Unfortunately he slept through the hours the play room was open, but we will try and make it tomorrow. We still don't have a roommate yet! It has been wonderfully peaceful in our room. Drew keeps asking if it's raining because of the bubbling sound from the vacuum for his chest tubes. It is a relaxing sound.

After he woke up we got him up and into the wagon. We went for a walk on the roof where Drew saw a helicopter and a couple of airplanes and finally got a little fresh air and sunshine. We met another nice family up there who's 5 year-old son was diagnosed with leukemia three weeks ago. Drew and Cameron had a good little walk out there. Then we took him to see the train on the first floor. That may be our motivation to get him standing and walking. He stood up to watch it for about 10 seconds, then sat upright on my lap for a good twenty minutes. This is great progress for him!

Taking some steps

Sitting up and playing with some toys

Outside on the roof

The sun was getting bright

Watching the train

Friday Morning

The first thing that comes to my mind right now, is that one week ago today we were anxiously waiting as we had just sent Drew off to surgery. Can anyone believe that was only a week ago? It feels like it could have been months ago to me. I am so glad to have him sitting next me, awake & eating bacon (that's good for your heart, right?) and watching dinosaur videos. No, he's not happy, but when you think about it, what does he have to be happy about? He's only four, it's not like he understands the concept of enduring the pain and indignities now because he will be so much better off later. He only knows that he has pain, he can't be held by his mommy & daddy, his voice is weak and we can't understand what he wants most of the time, he doesn't have the energy to get up and play, or even sit up by himself, he has to wear a diaper even though he's potty trained, and it takes at least 2 or 3 people to help him get on the potty. Throw in a poke for a blood test this morning, and waking up to two nurses bugging you and I can't say that I would be smiling either.

But, he did have a very good night and slept most of the night. Still no roommate, so Dan had some good peace & quiet too. Praise God for that! He ate some breakfast--bacon, a couple bites of muffin, some grapes and one piece of cantaloupe. He also drank most of his chocolate milk this morning. Haven't heard any plans for today, but I imagine (and hope) they'll take at least one more chest tube out. He is down to .25 liters of oxygen and still satting at 98! Still the only smiles we see are forced, when we ask him to say cheese for the camera.

Here are some pictures from yesterday, as promised:

Kristen & Shae bringing Drew some dinosaur presents

Drew and Shaelyn

Saying cheese for the wagon ride

Drew going for a ride

Shae is pulling and Ava is pushing

Thank you Vanessa for the balloons!

Eating some breakfast

I want to say thank you to everyone who has been by to visit, sent cards & gifts, brought meals and remembered us in prayer. I am trying to make a list of everyone who has been so thoughtful and generous so I can send thank you notes, but I think it is inevitable that I will miss someone. Just know that it has touched us deeply to feel so loved and cared for by family, friends, and people we haven't even met. It brings to mind one of my favorite verses:

2 Corinthians 1:4-5
He comforts us in all our troubles so that we can comfort others. When they are troubled we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ.

Thank you for comforting us.

Thursday, May 29, 2008

Post-Op Day 6

Just a quick recap because I am exhausted.

Drew is down to .5 liters of oxygen. He still has two chest tubes and one IV.

His attitude is slowly improving. He had a fantastic day today. His little friend Shaelyn came for a visit and he really enjoyed having her here. He even asked to go out of the room, so he went for his first wagon ride this evening,with Shae pulling him! This room is such an improvement on the ICU. We are in a two bed room, but we haven't had a roommate since we've been here. Let's hope we don't get one in the middle of the night!

OK, I'm going to go back to Kathy's house (Ava is still staying with my mom & dad at the hotel), for a completely uninterrupted night of sleep! I can not wait! Dan is going to sleep on the comfortable little bed right next to Drew. I promise some adorable pictures of the wagon ride and visit with Shae in the morning. Good night!

The Big Move to the Third Floor

Handsome boy after spongebath and "hairwash"
Drew stands up on the scale in an attempt to get his weight
The wonderful Dr. Hanley posing with cutest patient

I am currently writing to you from the third floor. How awesome is that?!

We moved this morning BEFORE lunch time. On the way out we saw Dr. Hanley. I asked him to swing by for a picture and he said he was just on his way to see us! He came by after we moved rooms and we snapped this picture:

Before we moved they took out his arterial line in his femoral artery and the IJ (which I think means, intrajugular line).

This is Grandma (Andrea's mom) taking over the post for now. Andrea had to leave for a well deserved and therapeutic back massage. Dan is hopefully napping with Ava or at the very least getting a shower. Their good friend, Bekah, and I are keeping an eye on Drew. She had to really twist my arm, of course. He is resting very peacefully after moving to the third floor, having endured a very long day of having physical therapy, sitting up and standing up for the first time, getting a sponge bath, having his hair washed and sitting on the potty with positive results. Just as he was through with all of that and looking like a clean, handsome little man, the respiratory therapist came in to pound on his chest. He completely ignored her and continued to watch Dumbo while she did it, but showed his independence by refusing to flow bubbles for her. We'll work on that later. He was a trooper through it all but is so happy to just be left alone. My job was to make sure he took plenty of fluids and he is obliging by sipping on his drink of choice, chocolate milk. I'm sure Andrea and/or Dan will fill in more details later, but I will post some pictures from our very eventful day. As a side note though, we were very encouraged last night when Andrea's cousins, Heather and John came to visit and read Drew "Where the Wild Things Are" he actually was interested in hearing the story and pointed at the picture and said, "Max!" Encouraging, because mostly he likes to ignore us as much as possible, but his sweet little personality is breaking thorugh!

Thursday morning

Drew had a very good night last night. He was able to sleep for about five hours straight. That should help him a lot. He still doesn't feel like eating much but that should come around soon enough.

Things seem to be moving a lot more quickly this morning. After my three hour nap I got to Drew's room and they had already removed a chest tube. Then the attending came by and wrote orders to pull the arterial line in his groin and the line in his neck. And, depending on the bed situation upstairs, we may be moved to the general cardiac floor later today.

Andrea was able to get some sleep last night and it helped that there wasn't anyone else in the room talking to her at midnight. Hopefully, this was the last night we will have to stay awake at his bedside because on the other floor a parent can actually sleep next to his bed in a pull-out chair.

Thanks to everyone who has been supporting us and praying for us. We definitely feel the love.

Wednesday, May 28, 2008

Post-Op Day 5

Here's the wrap up for the day.

Drew is on 2 liters of regular flow oxygen, still 100% oxygen. He got the RA line pulled today which meant I could get in his bed with him! I still can't really hold him yet, but only because he's big and heavy and the chairs are not really accomodating. He still has all three chest tubes in, but we think they'll pull one in the morning. They said today that we are "candidates" for moving to the floor tomorrow, but not sure what we have to achieve to get there. Sometimes it is just a matter of bed space. Drew is still coughing, but it is encouraged because it's good for his lungs. I decorated his bed a little this evening so now there are some pictures of him and Ava for him to look at and some cards that his friends made, and the blanket that Child Life brought in.

He's in a little bit of a better mood than this morning. He drank one 5.5 oz can of apple juice all day and a few sips of water. He ate maybe a handful each of cheerios and goldfish, a few bites of jello and almost one whole chicken & spinach ravioli. He has been watching lots of movies and will occasionally let us read him a book. I saw him grin once at his nurse when he asked him for a high five. Ava seems like she has a cold so she hasn't been at the hospital today. Which is a bummer, because they've both been asking for each other. Maybe she can come in just for a minute tomorrow.

We ran into Dr. Hanley in the hallway today. He was doing one of his 12-hour unifocalization surgeries today. I told him I'd like to get a picture of him and Drew before we leave and he said "ok, maybe when he looks a little better. And me too, I'm pretty tired." I guess 12 hours of saving a baby's life takes it out of you a little bit. I am just so impressed by him every time I see him. And also a little intrigued by the fact that he's always wearing his sport coat over his blue scrubs. Even in his Stanford faculty photo.

I'm off to bed. I don't think I'll have a problem tonight since I am exhausted! I also have my sleep mask, earplugs, and xanax to help me fall asleep. Kate is here to help Dan stay awake for his shift until 3 am, and then I'll be on until morning. Good night!

Me and Drew, together again!

Grandma and Drew

Drew loving his dinosaur from GiGi and Grandpa Oddone

Isn't Drew's new dressing the best?!

Drew's voice

Here is a video from yesterday for those of you who said you wanted to hear Drew's voice. This was yesterday when all he still couldn't have water yet. He wasn't very happy. It sounds a little bit better today, but still small and quiet. He's been doing a little better this afternoon as far as his spirits go, but still definitely haven't seen a smile out of him.

video

Wednesday Morning

Good Morning!

I hope you all enjoyed a good night's sleep, because none of us did! Drew didn't sleep very well at all, at first for only 20-30 minutes at a time, and then for up to an hour at a time. Dan did the first shift and I tried to sleep from 10:30 pm to 2:30 am. The sleep room was freezing, but I was by myself at first. Then just as I was falling asleep around midnight, this dad came in and started talking to me! I think I may have gotten two hours of sleep and then woke up again because he was snoring! Tonight I'm going to have warm jammies, earplugs, and sleep medication. I came and relieved Dan and he got back around 6:30 this morning. He didn't have a problem sleeping, but still feels like four hours isn't quite enough.

Drew doesn't seem like himself. At first I thought he was drugged, but he hadn't had anything for a while. I asked the nurse about it, and she said it could be all the sedation meds he was on when he was intubated taking a while to wear off. I think it might just be his way of dealing with things. He is blocking everything out. He won't answer us when we ask him questions, he doesn't want to play with toys, watch movies, and now he doesn't even want to drink his juice or eat his yogurt. It's really hard to see him so sad, but I guess I wouldn't be very happy either if I was in his hospital bed. Child Life came by and brought him some toys and a blanket and he responded to her a little bit, so maybe he's just mad at us for bringing him here.

They plan to take the RA line out this morning, but we're still waiting on platelets from the blood bank before they can start. I think they've also turned his oxygen down a bit to 4 liters. That's all for now. Please pray for Drew's little spirit.

Tuesday, May 27, 2008

Post-Op Day 4

Doesn't Drew look so peaceful in this picture?

What an exciting day we had! Drew was allowed to have one ice chip at a time five hours after he was extubated at 4:30. Then he got to have tiny sips of water starting at 7:30. It was hard having to take his cup away when he was so thirsty, but they have to start slowly to make sure his stomach can handle it. He hardly slept at all today, but he is sleeping now and has been for about a half hour now. I hope he sleeps for a few hours at least. Right now he is on six liters of oxygen, down from 10. His oxygen sats are 97, heart rate is 128, blood pressure is 96/62.

We moved into another little pod on the CVICU today. There are still four beds in this room and we are with all babies. So far they are behaving. There is a 2:1 patient to nurse ratio here, which means Drew is not as critical. He was wanting to sit up and move around a lot. He kept asking to get out of bed and have us hold him. We can't until he gets his RA line out, since it goes directly into his heart. It sounds like they will pull it sometime tomorrow, as well as a chest tube or two. That should help him to be much more comfortable. They are also going to allow other clear fluids if he wakes up tonight and are ordering him a breakfast tray for the morning in the hopes that he'll be ready to eat. I think tomorrow he will be feeling so much better!

This is the silver dressing covering his incision. Drew's got bling.


He looks scared in this picture, but it's because we had to hold his hands away from his incision. It is supposed to remain sterile. But you can see how nice it looks.

My sweet friends Rose & Deanna drove up to visit today and were lucky enough to be here on extubation day. Which means, I hardly spent any time with them, because Drew kept me on my toes. Speaking of toes, they did force me to have a pedicure and manicure provided by them. I tried to object, but Dee said she'd just sit by my feet until I let her do it. Aren't they the sweetest?
OK, good night everyone. Dan and I are taking shifts at Drew's bedside while the other one tries to sleep in the communal parent sleep room. I don't have my earplugs, so it should be an interesting night.

THE TUBE IS OUT!!!



Yay! At 11:30 the tube came out! So far everything has been smooth. He looked pretty uncomfortable for a while there (the tube can be irritating), plus they had to turn off his IV pain meds because they can depress the respiratory system. They had to wait a little while to give him anything, but they gave him some fentanyl and versed and he calmed down.

Since then he's been awake nonstop. He's been moving around a lot, making himself comfortable. We had the Fox and the Hound on and he was watching it a little bit. He was really sleepy at first. They gave him these lemon flavored swabs to suck on and he really liked that. He's been talking to us and it is so good to hear his little voice! Now he really wants water, but he can't have any for four to six hours. That makes him mad! His voice is still very soft, so even when he yells he's not very loud. He does have another fever, so we are praying that goes away soon.






video


DeAnna and Rose here -Andrea had to go back in with Drew as he was asking for her, but she wanted to get this post out to all of you. So she asked us to post some pictures from this morning and the video. She gave us free reign of her blog and we wanted to take this opportunity to let you know how amazing Dan and Andrea are! We know you already know this! They are awesome parents, they are so calm during all of this. He is awake and thirsty, moving around a lot and they are so patient and loving and are taking care of his every need. Either Dan or Andrea are now in with him at all times, right now they are both with him. They wont be leaving him alone for a second. One or both of them will be with him at all times from here on out. They are glad that he is awake and talking and are finally able to communicate with him. He has turned a major corner today!!! Praise God!!


Tuesday morning

Drew had a boring night. Just what we like to hear!

This morning we brought Ava over to my mom & dad at the hotel. It was nice to wake up with her and get her dressed and ready. They are bringing her to the hospital "preschool" today. I think she will enjoy playing and being with other kids.

When we got here around 8 the good news was that Drew's left lung reinflated so they cancelled the bronch. Yay! There is a new team on this week and when they rounded this morning they decided to try and extubate today! I am cautiously optimistic about this. I can't wait for him to be extubated, but I don't want to be disappointed if things change.

That's all that's really going on around here. I'll definitely post a picture once that tube is out! For now here's one of Ava visiting Drew this morning.

Monday, May 26, 2008

We got Drew all snuggled in for the night. They restarted his feeds (they stopped them at 5 am) and he's got his Veggie Tales going, so hopefully he will have a peaceful night.

And here's a cute picture of Ava enjoying her chow mein with us last night.

Doing Better

I'm feeling much better now. Thank you all so much for your encouraging words. It means a lot to us. I had some friends from my life group drive up today and they took me out to lunch and ice cream! And they brought frozen meals from our church family. Mmm, we can't wait to eat them! Before they left we also had some prayer time for Drew. So that was refreshing. Thanks for making the long drive ladies!

TNLG ladies

They did the bronchoscopy around 11:30 and sucked up some good secretions and this one crazy looking clot. There was another really big one in there, but they couldn't get it out. They put some bronchozyme on it to try to loosen it up and scheduled him for another bronchoscopy for tomorrow.
Setting up for the bronch

A very flattering picture of the back of the doctor and the RT during the bronch

The x-ray a few hours later looked better. Since there was no talk of extubating today they restarted his fentanyl drip (for pain) because he was requiring doses every hour. The fever is back under control. I was feeling like not much progress had been made, but the nurse did point out that the diuretics are working and Drew's fluids were negative today, and that is good news. There was one scary episode where Drew's heart rate went up into the 180s (he's been in the 130s) for six minutes, but the doctor just watched him and it went back down on it's own. I told the doctor he might have to stand at the foot of Drew's bed and just watch him so he behaves. Dan said he thinks Drew was just showing off what he can do with his fancy new heart.

Dan took Ava home to put her to bed tonight because she has been missing her mommy & daddy. He is going to stay with her and Grandma Kathy and I will go home later after visiting with Drew for a while. Most of our visitors will be back to work tomorrow so it will be quiet around here. My mom is going to watch Ava tomorrow, but we're not sure if it will be at the hotel or at Kathy's house yet. Oh, I forgot to mention that I did bring Ava in to see Drew yesterday. She had been asking about him so I took her back to see him. She said "Drew sleeping" and "owies right there?" We told her that he did have owies but he had medicine to make him feel better. Then she got kind of scared and said "no want to go there" so we took her back out. She asked again for him later and we brought her in again, with similar results. Hopefully he'll get the tube out soon and then he won't look so scary to her.

Here's a short video of the beginning of the bronchoscopy:

video

Monday Morning

I woke up at 5:45 again and called to check on Drew. The nurse said his night was "not bad." No changes really, still breaking through from time to time, but he also had a fever. The tylenol study is over, so he's not getting it intravenously anymore, but they did give him an oral dose through his ng tube. They are probably going to do a bronchoscopy today to try and see what the problem is with his left lung. They can also use that to suck up fluid or clots that they might find, so it might help him.

We got here at 7:30 and the new nurse, Jessica, was suctioning him. He's coughing a lot, even though he's not really waking up and it looks very uncomfortable. He also can't make any sound with the tube down his throat so it looks sort of like silent convulsing. They gave him more fentanyl and versed because he just couldn't get comfortable. And his fever spiked to 102.5 despite the tylenol so now he's on a cooling blanket. The nurse said his x-ray doesn't look very good, so I doubt there will be talk of extubating today.

I feel so weak today. I felt that way even before we got here. This is taking longer than I anticipated. It's frustrating. And they always make it sound like extubation is just around the corner. If they said it will be 3-4 days from the beginning it wouldn't be so hard to handle. I hate to see him uncomfortable and I know the coughing is painful. I haven't even been here an hour and I've had to step out of his room twice to have a good cry. I guess I was due.

So please pray for the fever to go down, for no infection, for the fluid in his lung to disappear, and for his comfort. I've been picturing him in the arms of Jesus while he's unconscious and keep asking Him to return Drew to me when he's ready. Please pray for my strength, I feel like a crazy person today.

Sunday, May 25, 2008

Post-Op Day 2

The chest x-ray they did at six looked just like the one they did this morning. Not extubating tonight. Since the x-ray this morning they increased his diuretics so now he is taking lasix and diurel to try and increase his fluid output and draw the fluid out of the lung. Sometimes they say his lung is collapsed, so I don't know which it really is, or what the difference is. Still doing the chest PT every four hours. He's been resting pretty comfortably all day, I think he only broke through the sedation 2 or 3 times all day. We had Nicole for a nurse this morning, then Rosalina again at 3, then Andrew again at night. I love them all. I couldn't be happier with all the nurses and RTs we've seen. They all seem very knowledgeable and compassionate. One of the RTs today let me listen to Drew's lung so I could hear how "course" he sounded. Rosalina gave me a compliment and said I was very good with Drew, calm and not scared. I help with all his treatments, whether it's suctioning or CPT or just moving his position and changing his linens.

I've been doing pretty good with everything, but tonight I just miss my boy. I've been with his body, but I miss his little personality, his beautiful eyes, cuddling with him. I just want to crawl into his bed with him, but I can't. I guess the silver lining of him not being extubated yet is that he has more of a chance to heal and for some lines to be removed before he is awake. Hopefully that means he'll be in less pain when he is finally awake. They did say they will probably pull one of his chest tubes tomorrow and remove his atrial line (an IV that goes directly into his heart).

One more night of good sleep outside of the hospital. Hopefully THIS is the last night we'll be sleeping away from him.

Not much news

Not much going on around here. Drew is just resting, he's hardly broken through at all with this new drug. They started chest PT this morning, which basically looks like pounding on his chest to loosen up any secretions in his lungs. They say it's not painful, but it doesn't look fun. Drew has a slight fever (99.3) so they are doing some cultures, but don't expect anything to be wrong. It's typical to have a fever now. OK, they are about to do the therapy so I'll write more later.

Not yet...

The doctors came by and decided not to extubate yet. I am really disappointed. It's so hard to wait. But when the tube comes out I want it to stay out, and it really has only been 36 hours or so since he's come back from surgery. The reason they are waiting is that his x-rays are showing some fluid in or around his lungs. There is some concern about reperfusion because since his surgery his lungs are getting more blood flow than they've ever seen and his body needs to adjust to this anatomy. They plan to do another x-ray around 6 tonight and see what it looks like. Then they'll decide if they want to extubate tonight or tomorrow. In the meantime they are starting some feeds through his ng tube, so at least he won't be hungry when he does wake up.

Some verses I've been meditating on:
2 Corinthians 4:18
So we don't look at the troubles we can see now; rather we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
2 Corinthians 13:9
My grace is all you need. My power works best in weakness.
Romans 8:18
Yet what we suffer now is nothing compared to the glory He will reveal to us later.
Psalm 27:14
Wait patiently for the Lord. Be brave and courageous. Yes wait patiently for the Lord.

Sunday pictures

They started the propathol at 7 and now we are just waiting for the docs to come by and let us know when he can be extubated. He is totally sedated on this drug, so he is comfortable. I got to put a little aquaphor on his lips (they were dry), put a sock on his free foot, and placed his doggy in his bed with him. I know he might not know the difference, but it makes me feel better. :)

I 've been having my own version of church this morning, listening to worship music on my ipod to block out some of the beeping & reading through my Bible for words of encouragement. I am going to listen to one of the older sermons that I've missed later today too. Someone give Eric & Cortnie a hug goodbye from me!

Here's some pictures from last night and this morning.

Drew wanted to sleep on his side like this. It looks uncomfortable to me, but that's how he sleeps at home.

This is his right foot. He's got two IV's in his little foot.

This is him this morning with his doggy.

And here is a video I took of how noisy it is in here! I hope it works.

video

Sunday morning update

We had another really sweet nurse last night, Marissa. She took good care of Drew. I credit her with saving Drew's life because she found a large clot in Drew's arterial line. It would draw blood, but she could only push back a little bit. She finally pulled back a lot, and this long stringy clot came out. It's probably due to his positioning, he was laying on his side most of the afternoon. But still, not only could we have lost that line, it could have caused a problem. So we were pleased with her from the beginning. While we were there last night Drew woke up around 10 and tried to turn over onto his stomach! All three of us were trying to stop him and turn him back over, and prevent all his tubes and wires from getting pulled. It also looked like he was reaching for his breathing tube, but he only wanted to scratch his nose. Marissa helped him scratch his nose and asked if that was better and he nodded his little head. She also told me earlier while we were eating he woke up and she asked him if he had owies and he nodded yes. She gave him more fentanyl and versed each time. There is something about that that makes me sad. I guess just that he is more aware and can answer questions, but can't talk. We stayed with him until 10:45 or so and he was resting comfortably when we left.

We stayed with Kathy and both slept well. I woke up at 5:30 and couldn't wait until the alarm went off at 6 to call and check how Drew's night went. Marissa said he woke up three more times and seemed to be more uncomfortable when he woke up. She gave him three more doses of versed & fentanyl. She said she was able to comfort him and he would go back to sleep. They turned the vent down to 40% oxygen and 10 breaths per minute, and he is over breathing the vent, so that is good. The respiratory therapist (RT) thinks that Drew is ready to be extubated. He's had less secretions overnight. For now the plan is to give him propathol (a shorter acting sedative that doesn't affect respiration) at 7 so they can turn off the fentanyl and versed drips. That will allow him to wake up enough to have the tube out and breathe on his own. After that they will give him hourly doses of pain meds, as needed, instead of a continuous IV drip. We will be there at 7:30 after shift change and see what the plan is.

A quick update on Ava:
She has been having the time of her life playing at the hospital and at Grandma Kathy's house. We have her other grandma and grandpa, two great aunts & an uncle, my cousin & her husband and Uncle Scott all showering her with love and letting her get away with whatever she wants. I told them it will take us months to undo the damage they are doing! An example. My aunt gave her a piece of a chocolate chip cookie. Ava didn't want only a piece of a cookie and flung it down on the table. So my aunt gave her the rest of the giant cookie, you know, as a reward for being so polite. Then as she is eating the cookie she says " chocate. I yike it!" She is so sweet and it is nice having her around to liven up the place. She has been asking for Drew, but I haven't wanted to bring her to see him yet. I think once the breathing tube is out we can put a blanket over his body so she won't see all the tubes and let her see where he is. He will probably just look like he is sleeping.

Saturday, May 24, 2008

Post-Op Day 1

Drew's had a pretty quiet day. Still fighting the sedation. But not requiring as much meds quite as often. He did get some ativan this morning. Stats have been stable all day. The vent settings haven't been moved today, they don't want to push him. Our nurse has been awesome. Her name is Rosalina and she's been working at Stanford with cardiac kids for 30 years. Here is an example of her awesomeness: the respiratory therapist came in with a student who was about to listen to Drew with his stethoscope and the nurse stopped him in his tracks! She said "don't touch him, he's resting!" We finally found a CD player and now Drew is listening to his Veggie Tales CD. I know it might be a coincidence, but I swear he's been resting better since he's been listening to Bob & Larry. I did have a moment where I had to get out of the hospital immediately. Nothing was wrong, I just felt like I needed to run out of here! So my cousin and I went on a walk to find a Jamba Juice, and ended up walking about 3 miles. It was a good break.

We are about to go have dinner, since it's shift change and then we'll be back to hang out for a while. They don't plan to extubate until tomorrow, so we think we will sleep at Grandma Kathy's house tonight. Once Drew's extubated he will require much more of our attention so we need to rest up for tomorrow. Thanks again for your thoughts and prayers. We really appreciate it!

Saturday morning update

Got here early to see Drew, and his poor night nurse is still here. Andrew is taking care of him and doing a great job, but they are short-staffed so he is staying on until 11 am. Drew looks good today. He doesn't really look swollen. His stomach does look thin to me, but Dan pointed out that he hasn't eaten in two days, so I guess that makes sense. All his vitals look good. When the doctors came in to do rounds they were pleased with how things are going, but there is some fluid under his right lung so they are inserting another small drainage tube (a pigtail) right now to remove that fluid. The other two chest tubes haven't been putting out much fluid since last night, so that is good. He is still breaking through the sedation, but not as often. He did wake up a little bit this morning and looked like he was trying to sit up and reach for us, but he calmed back down and went back to sleep and they gave him more medicine. They will try to extubate him today or tomorrow, but I'd be happy if they wait til tomorrow so he can stay more comfortable. I put up a picture of him today so the nurses and doctors can see what he really looks like and that he's a real person and not just a patient. Oh, Dan noticed the last name of the intensivist and it turns out he went to high school with his sons, and his mom taught them math! So now that we have a connection with him, hopefully he'll take even better care of Drew!

Here's a couple of pictures for you.

These are all the IV meds Drew is on. Each one of those little pumps at the top are a different medication. The ones I could read are: milrinone, fentanyl, versed, dopamine, epinephrine

This is my sweet boy today. He got a cool Cars no-no. If you're wondering if he's cold with no blankets, he is, but they want him on the cool side for a while after surgery. He's still laying on the cooling blanket.

Good Night

Last night when we went back in to see Drew there were still a lot of people in his room getting him stable. He had a little fever, likely the body's response to the trauma of surgery and bypass, and so they put him on a cooling blanket. He is also in another research study on IV acetaminophen so he's getting that every 6 hours which should also help the fever. His main issue has been staying sedated. While we were in there he kept opening his eyes and sort of gagging on the breathing tube. They hadn't gotten the IV drips of fentanyl and versed yet and he was breaking through the sedation. So we decided to wait and come back when there were less people in the room.

We went back around 9 and stayed with him for about an hour. He was doing well. They had to push the breathing tube a little further down because it was starting to come out (probably from the gagging). I asked them to play his Veggie Tales CD when things settled down and to take care of his little crusty mouth. It gets very dry when the tube is in and it looked uncomfortable to me. When we were there the second time his heart rate looked better and his temp was normal. They promised they would keep him sedated and asleep so we went back to the hotel to sleep, probably our last time sleeping in the same bed until we get home.

We slept really well last night, but I awoke with a start this morning and just had to call and find out how Drew was doing. The nurse said he had a good night, he was stable all night. She said they'd been trying to keep him sedated, but he was hard to sedate. I guess he would wake up a little bit, but she would tell him to go back to sleep and he would listen. He also threw up once last night, so they put in an NG tube to drain some of the bile that was in his stomach and gave him some anti-nausea meds to make him feel better. I'm glad I wasn't there when that happened, I imagine it would be pretty scary to see someone on a breathing tube throw up. They have also turned down his ventilator rate and oxygen, so he is doing more of the work on his own.

Our plan is to be there by the time shift change is over at 7:30. Once we hear from any doctors we'll let you know what the plan is.

Friday, May 23, 2008

Out again

Dr. Hanley & Dr. Mainwaring came out while I was grabbing a bite to eat in the cafeteria. Dan talked to them and they explained that it was not an emergency trip back to the OR. Drew had not come back to the ICU yet, they were still watching him and said that they saw he was bleeding a little more than they like after surgery. So they reopened him, and cauterized some of the collaterals that were "oozing." He didn't have to be on bypass again. They said he has been and is still very stable. We should be able to see him soon. We've now been at the hospital for over 12 hours, and it's been ten hours since we kissed him goodbye. Thank you for your prayers and encouragement.

Update: We went in to see him briefly and will go spend some more time with him in an hour after they've got him all settled in his room. Here's a couple of pictures from when we saw him. They are a little bit scary if you haven't seen this before, but to us he looks good! And, I took a picture of his oxygen sats at 100%!



Please Pray--He's back in the OR

We waited an hour and went to the CVICU to see Drew. He wasn't back yet. They said to come back in twenty minutes. We waited another LONG twenty minutes and he still wasn't back. The intensivist said Drew was having complications and he was back in the OR. Dr. Hanley was with him and that's all the information he had.

About fifteen minutes later the Dr. came back and said Drew is having bleeding complications. They have opened him up again and are working to stop the bleeding. It could be an hour or two before he comes back out.

These kinds of ups and downs are the hardest to take. We thought we were about to see our boy safe and in the ICU and got very unpleasant news instead. Please pray for the doctors to stop the bleeding and for Drew to come out of surgery safely. Please pray for our strength, as it is wavering.

He's Out!

Drs. Hanley and Mainwaring just came out to speak with us. Drew is out of surgery. They said we can see him in about an hour. He did great! I hugged them both!

They ended up using a human valve that is large so they think it will last a long time until it needs to be replaced. They closed the VSD. I am having trouble remembering what else they said, but they are very pleased with how the surgery went. Their biggest concern in the next 6-12 hours is bleeding, but they don't EXPECT any problems.

So that's it for now. We can't wait to go see him. He will probably be completely out and on the ventilator at least until morning.

Praise God!

Still Waiting...

We're still waiting...But we found a beautiful courtyard outside with a fountain! It's very peaceful and we are surrounded by family and friends. We should hear something around 2 and we'll post something when we can.