Monday, August 31, 2009

Better and Better Every Day

Today Jack (otherwise known as Super Why) seemed to have a really good day. This picture is with his favorite nurse, Laura, who he got to "surprise" with his Super Why disguise. Elijah and I didn't get up to the hospital until after noon, but Josh had some good news for us when we arrived. This may be more information than some of you want, but Jack had his first bowel movement this morning (since pre-surgery). This is one of the things that we had been waiting for him to do before we will be allowed to go home, so it was good to get something checked off. We also are having almost no problems getting Jack to take his medicine now, due to an interesting solution. We're now mixing all of his medicines into an ounce or so of Sunkist orange soda... that's right - Mommy's beverage of choice. Which is of course what makes it special and acceptable and he drinks it immediately with no whining. So whereas I'm not exactly thrilled about sharing a soft drink with my three-year-old, it's SO worth it to avoid the torture.

The only medicine that is still giving us a little bit of a problem is his new potassium. It tastes really terrible, and we can't mix it with soda. It has to be diluted into 4 oz. of water or juice, and he refuses to just drink it fast through a straw. So we have to squirt it, syringe by syringe, into his mouth and convince him to swallow it quickly. His last dose actually went really well, but it's not much fun. The problem of him spitting out the hydrocodone has basically been solved by him feeling fine without it. Right now he's only taking regular ibuprofen for pain and seems to be staying comfortable.

After lunch today, we got to take Elijah and Jack back to the playroom. They both had a really good time. Elijah played with a twisty ramp for cars and a rocking horse, and Jack got to paint a couple of pictures and watch the cranes work outside the window. They also both enjoyed singing songs with another little boy who came into the playroom... I can't decide if Jack is going to be a future musician or just a preschool teacher. He led the whole room in singing "The Wheels on the Bus" and "If You're Happy and You Know It." Jack was too busy playing today to take a nap at all, so I'm hoping that he will get a good night's sleep tonight.

Jack has also made friends with a couple of little guys on the floor. They both have baby sisters who are the patients, but we've had a little Cozy Coupe/ Big Wheel pack cruising the halls. The thrill (of course) is crashing into each other. Boys are boys, even in the hospital. He's already looking forward to getting to go to the playroom again tomorrow and riding the police car some more.

Sunday, August 30, 2009

A Busy Day for Everyone

Josh and I got away from the hospital long enough to go to church this morning -- we are so blessed to have grandparents here who were willing to watch both grouchy boys at the hospital. Five of our friends were baptized this morning, and it was so awesome to get to be there with them. I think it was especially cool to see some of them getting baptized by our former apprentices, who are now leading this small group... pretty incredible to see so much growth and obedience.

When we got back to the hospital, Elijah was sleepy (and fussy) and Jack had been pretty non-compliant. He's still having a lot of issues with taking his medicine, and it seems like it's getting worse rather than better. We can usually get him to take it without spitting it out or vomiting, but it still involves lots of screaming and holding him down (definitely a two-person job). But please pray that he will stop being so resistant to this; it's definitely the major area where we need him to do things differently. Unfortunately, it isn't helped by the fact that they seem to keep adding more medicine.. they just decided to start giving him potassium orally because his level is very low (this is pretty common when you're taking diuretics). It has a reputation for tasting awful too, so that won't help.

Jack did quite a bit of walking (a whole lap around the floor) and even went to the playroom for a while with Elijah. He also got to repeat his police-car ride around the hallway this evening. He ate fairly well and took a nap for about 3-4 hours this afternoon. His chest tube output seems to be slowing down, so we're hopeful that they will be able to remove them soon. We also found out that they will not be increasing his fluid restriction levels anymore, and that he will probably be restricted to this amount for 12 weeks post-op. So even after we go home, he will be allowed ~1 liter each day. We're praying that he will get used to this amount so that it won't really be much of an issue.
Please pray that he and Josh will have a good night of rest tonight, and that he will start to realize that it's easier to just take his medicine than to resist so strenuously.

Saturday, August 29, 2009

Hoping for a Good Night

I'm back staying with Jack at the hospital tonight. He has finally fallen asleep after not taking a nap all day. He has been so much more active and enthusiastic today, and I think he was just to busy to fall asleep. But he finally ate some macaroni and cheese and settled in to watch Lightning McQueen... it seems like just being still and quiet for a while put him over the sleepy edge.

It was an incredibly positive day, but I'll share a few low points as well. Josh's mom had to head back to Amarillo this afternoon... Jack's response after they left for the airport - "Where's my friend Grandy? I want her to come back and see me." Also, he had to get his IV replaced this evening, which wasn't fun (took 2 sticks...), but they sent two burly guys from the Kangaroo Crew to do it. He seemed to respond better to them than he might have otherwise, and they were very gentle and competent. He's doing better taking the oral ibuprofen (orange-flavored), but he's still really fighting the oral Lortab ("green stuff"). The last time that I gave it to him, he held it in his mouth while screaming and made himself gag. Luckily it was just a little bit of the dose, so after he rinsed his mouth out, we then made him take the rest. It wasn't fun. But hopefully we'll keep making improvements as he realizes that we're not going to stop expecting him to take it.

I included the picture below of Jack and baby Avery at the special request of Josh's aunt, and also because so many of you have asked how I'm feeling with limited sleep and an abnormal schedule. So here you can see that she still seems to be growing just fine (!!) and kicking around like her normal busy little self. I went home last night and got some great sleep and a long shower, and our night nurse is reputed to try hard to group all the things that have to be done at night... we will both get a lot more sleep if we're interrupted fewer times. Thank you so much for all your help and thoughts and prayers. We're doing so well, and I think it's only going to get better.

Up and Moving

Jack has been doing so much better today... like night and day. He's so much more himself, playing with toys and saying funny things. We think this is mainly due to him actually taking his doses of pain medicine last night and today. This morning he walked with Daddy and his grandparents all the way to the water fountain and nurses' station. He has also had some visitors, which he was actually excited about. Ms. Ruth brought him a big, bandaid-shaped "Boo-Boo Blanket" (with a pocket full of lollipops), and Ms. Kelly and Tyler came a little later with a new toy bus and some bus cookies. Laynie and Josie didn't get to come in (a little too much coughing and sneezing), but we got to take another walk out to the nurses' station so that we could wave to them on the other side of the counter. He followed that up with a nice long ride in the "police car," traveling all the way around the floor. So we're definitely hoping that we're at a nice turning point and that things will be much more pleasant from here on out.

Sun is up on a New Day

Jack and I watched the sun come up together this morning. We had a productive night. He was able to keep down some of the new meds he was given. He ate some banana and had a popsicle. Jack walked out of his room with me, though that was the last thing he really wanted to do.

He slept a good part of the night away. I felt lucky to get his thumbs up. Everyday his personality comes back a little more.

It was a strugle to get some of his meds down. We think he associates the liquid medice with vomiting and really fights having to take them. It is good practice in parenting, but it will rips my heart out.

His breakfast just came in and he was real excited. He decided to eat some biscuit and honey followed by yogurt. By far more food than he has eaten in the last 4 days. Hopefully this becomes a trend.

Goals for today are to walk more and to keep the meds down. His spirit really has picked up this morning.

Enjoy the Gig'em picture.

Friday, August 28, 2009

Today's Forecast: Mostly Grouchy with Scattered Smiles

We hope you enjoy the picture, but it's not particularly indicative of how the day has gone. Josh just told him to smile so we could show the picture to his buddy Laynie, so I guess this is his attempt to charm the ladies. It looks a lot better than the moody, grouchy face that he has mostly been showing people today, so I guess we were lucky to catch it on film.
Jack threw up again today, once while trying to eat some watermelon, and later when we were giving him some oral medicine today. This one was especially frustrating after Josh was able to convince him to take some Tylenol this morning without any screaming. Our nurse has tried to reassure us that this really isn't abnormal for someone who has had surgery like him. So we're trying to be patient and let him recover at the rate that he is comfortable with... which of course is difficult because mostly he's uncomfortable, because he's refusing to take his pain medicine. But they have restarted some IV pain meds, so we're hoping to get him walking a few steps this afternoon.
The best news of the day is that they were able to remove the biggest chest tube (of three) and his pacing wires. They also put the remaining tubes onto small bulbs rather than the big machines that they were attached to before. This makes him a lot more mobile... right now he's napping on the couch by his Tutu. He didn't love the tube removal process, but he should be more comfortable overall now. He's also very disinterested in walking -- he keeps telling us that he doesn't know how anymore, and that we need to pick him up. But he has at least taken the few steps from bed to couch a couple of times.

Thursday, August 27, 2009

Two Steps Forward, One Step Back

The day started off well. Getting to move to the 15th floor and getting up to walk to the door and back were highlights of the day. He also is very happy he doesn't have to wear the oxygen in his nose or keep the blood pressure cuff on his leg all the time..Later on, Jack decided that he "really" did not want to take his oral pain meds, and got rather upset about it. In his over-excited state, he threw up the spaghetti he had finally eaten. We really want him to stay ahead of the pain and this does not help much.

He has been a real hero through it all though, with glimpses of the cunning Jack we all know and love. He is on major fluid restrictions, but he can eat pretty much anything. He said he'd eat the pineapple on his tray. He picked it up and then drank the juice out of it as if to say "so there". Always trying to make a deal to his best advantage and giving a good smile when he's happy.

Our prayers for tonight:
- For Jack to graciously (well...with as much grace a 3yr old can muster) accept his pain meds
- For Jack's tummy to accept meds, food and nourishment
- For Jack to sleep well and be cooperative with the nurses and doctors
- For Mandy to sleep well and know intuitively what Jack needs
- For the Doctors to know what Jack needs
- For us all to Praise God for his Grace and Sovereignty

Our praises for today:
- Whoop! For leaving the CVICU and moving into the 15th floor with a bed for mommy next to Jack
- Hurray for walking to the door and back
- Yippee for going potty (seriously...)
- Praise for Jack's great sleeping opportunities today
- Awesome Loving God, Parents and Friends

May you all dream of buses and Pooh! (of the Winnie variety)

Moving Day

We're all moved to the 15th floor! He seemed to enjoy getting to see all of us in his new room, including Elijah. Jack also ate about 13 grapes this morning. Please pray that he will be able to keep those down and that we can get him up for a bowel movement sometime today. He learned today how to push the buttons on his bed to make his head and knees move up and down, so that's helping him stay a little more content. And he was actually interested enough in the idea that we gave him a new Duplo bus to play with. Right now his bus is watching him eat a few bites of pineapple and some vanilla pudding. He was very happy to get to take the oxygen out when we moved as well. His oxygen saturation is still not quite as high as we would like, but it's staying in an acceptable range. Sorry about the not-so-great picture... I knew that y'all would want to see him with no cannula in his nose and check out his new bus. But he's not really interested in smiling and looking at the camera at this point. Maybe we'll get a better one tomorrow. :-)

Plan for Today

When the doctors did their rounds this morning, Dr. Heinle told us that he would be moving out of the ICU today as long as he's keeping liquids down, which we haven't had any problem with - he has only thrown up when he has eaten. It will be nice to be in a room with his own bathroom and where we can all sit in there together, rather than being limited to visiting him two at a time. We have enjoyed really great care up here, and he does get more of his nurse's attention. But we're hoping that overall it will be a good move.

Jack slept pretty well last night. He got a dose of Ativan to help him sleep around 11, then woke up to urinate at 2:30 (right before they were about to reinsert a catheter because it had been a while). Good timing, Jack. He watched a movie for a little while, then got another dose of Ativan. He was still asleep when I came in at 6:30 a.m. The waiting room has good recliners for sleeping, so Josh is there now trying to rest after being in with Jack all night.

Please pray that Jack will feel like eating something this morning and that he will hold it down without any trouble. Also pray that we will be able to wean him off the oxygen while keeping his blood oxygen level in an acceptable range. The nasal cannula really bothers him, and he's so ready to be able to take it out. Please pray as well that he will be more interested in getting out of bed, even if just to sit in a chair. He needs to start moving around some. Pray too that Josh and I will be patient with each other and in consistent agreement on how best to take care of Jack, dealing with his discomfort and unhappiness.

Wednesday, August 26, 2009

Sleeping for Now

Jack is asleep right now. He has had a pretty exhausting day, with pretty much one discomfort after another. His nurses had to do a lot of tugging and squeezing on his chest tubes, which is not the most pleasant experience but needed to be done to clear some clots. After that he would cry every time that particular nurse came in, "Don't hurt me! Don't hurt me!" So he has definitely needed a lot of reassurance today that Mommy and Daddy are making sure that the nurses aren't doing anything that won't ultimately make him get better, even if it doesn't feel great right now. He ate some pears this afternoon but threw that back up also. So right now we're pretty much just doing little sips of juice or water, and he's been started on some anti-nausea medicine.

Josh and I will be taking turns staying in the room with him tonight so that he's not by himself. Hopefully he will have a much better day tomorrow. Luckily he has the same nurse tonight that he had last night. He seems to trust her to take care of him, which is nice and reassuring for him. Please be praying for both the eating and pottying to improve. It seems that both of these things need to be happening before he will be moving downstairs. Please also pray that he gets some good rest tonight. I think that would do a lot to improve his irritability tomorrow.

Not feeling too great

Jack has continued to not appreciate his fluid restriction today. Just to give you a clear idea, his current restriction is 20 oz. of clear liquids - all day. I think Jack usually drinks that much by breakfast on a normal day. So his constant request is juice and water, and he hasn't been easily satisfied by the periodic sips that they have allowed him. He was able to eat some applesauce this morning and then some yogurt a little later, but he didn't keep the yogurt down. So please pray that his tummy settles down enough that he feels like eating some more and hopefully going to the bathroom.

They were able to remove the lines that they wanted to (central line, arterial line, and his foley), so he was able to get out of bed and sit in my lap for a little while. He also is unrestrained now. They have been weaning his oxygen down slowly, which he seems to be tolerating well. He has been basically disinterested in toys, books, or movies; he pretty much just wanting Mommy and juice. They've taken him off the scheduled morphine and are just giving it as needed now. There is definitely a balance between trying to control his pain but keeping him alert enough that he will start getting up and walking some today. Please pray that we will be able to distract him from the lack of drinks and get him interested in moving around. We will most likely still be in the CVICU overnight.

Morning in the CVICU

Jack is doing well so far this morning. When we came in at 6:30, he was awake and told us that he wanted us to go away and let the doctor (actually his nurse Linda) take care of him and make him feel better. So he apparently got along fine with her last night. But once he got used to us being there, he was glad for me to give him his two sips of juice. He is tolerating liquids well, though he's much more fluid-restricted than he would like. He is still on morphine, so he's basically in and out of sleep more or less all the time. He also got some applesauce for breakfast and will get some yogurt in a little while. We're hoping he will even get to fill out a menu for his lunch.

He still has lots of lines and tubes, but they're hoping to start getting some of those things out, like his arterial line, central line, and foley catheter. He seems uncomfortable at times (especially if he coughs - just imagine), but I'm sure the discomfort will be easier to tolerate if he can move his hands and eat/drink when he wants. Please pray that we'll be able to get as many lines out as possible today so that he be getting out of bed. They are also talking about the possibility that he will be out of the ICU this afternoon if he continues to do well and there is a bed available downstairs. We're definitely hoping that will work out so that I will have a bed to stay with him tonight.

Tuesday, August 25, 2009

So good to see him

Jack is doing so well. He has opened his eyes a few times, but not really woken up yet. Every doctor and nurse that has checked him out has said that he's basically doing the best he possibly could. He still has several lines in him and three chest tubes, but they were able to remove his breathing tube in the OR and will be weaning him off the oxygen overnight and tomorrow. Whenever he wakes up enough, he will be able to try some ice chips and then progress slowly to some other clear liquids from there. Please be praying that his little tummy handles this well so that he can have some juice and then food sooner rather than later. Josh and I will probably be heading down to the RMH to sleep in the next hour or so.
Please pray that we all sleep well and that Jack doesn't wake up agitated and upset. If he does, they'll call us to come up and sit with him a little while. They can also give him more sedatives as needed. We're hoping that he sleeps well tonight and is feeling like getting up and moving around tomorrow. Please pray for Linda, his nurse tonight, and Dr. Nelson, the attending cardiologist, that they would be able to keep him resting comfortably and soothe him easily. Also, Josh's dad is traveling back to Amarillo tomorrow, so please pray for traveling mercies as he's having to head back to work with his grandson in the hospital. Thank you for all your prayers... we believe that it makes such a difference to Jack everyday.

He's done!

Jack is out of surgery. We just finished talking with the surgeon who said that everything went as good as it could. The repair itself was straightforward with no complications, and they didn't have any problem with excessive swelling (can sometimes keep them from being able to totally close up the incision). Right now the anesthesiologist is sitting with him to try to get his breathing tube out before he leaves the operating room. They prefer to do this as soon as possible, but will do it later as needed. Dr. Heinle even said they may be getting him out of bed as early as tomorrow. We should get to see him in the Cardio-Vascular Intensive Care Unit (CVICU) in about an hour.

Thank you for all your prayers... we couldn't have asked for it to go any better than it did. Please keep lifting Jack up. He will be uncomfortable and probably very crabby when he wakes up this evening, so please pray that we can regulate his pain appropriately to keep him as comfortable as possible. Hopefully tomorrow morning he will be in a good mood and ready to move around and eat something. Another prayer request: he will be on some fluid restriction for the next day or so, and he's very much a juice drinker. So please pray that thirst won't be an issue. We so appreciate all of you.

Surgery Update

We just got our first update from the surgical staff. At this point he is not yet on the heart/lung bypass machine. The trickiest part of this surgery is simply getting through all the layers of scar tissue from his previous surgeries. That's been done, and he should be on the bypass machine with the actual repairs being done. Josh and I just found out that we have a room at the Ronald McDonald House in the hospital for tonight, which is fantastic. That gives us a place to sleep with a real bed and our own shower, but within minutes of Jack in the CVICU. Elijah came up to the hospital at lunch time today with Josh's parents and had a good time playing and getting lots of undivided attention from us and his grandparents.
We're giving thanks right now that Dr. Heinle has made it through the most difficult part, that Jack's having no problems so far, and that Elijah has had a good day. Please continue praying for ease in the surgery, for our patience and trust in God, and that no complications develop.

Jack is in Surgery

Jack was taken back to the operating room at around noon. He did very well this morning... didn't seem to be anxious or hungry. He was happy to watch PBS Kids in his hospital bed while we waited for the surgeon to finish his first case. He did have to take off his Super Why costume eventually and wear his "hospital pajamas" instead, which he was okay with. We did get one last shot in his mask before he went back. The anesthesia team gave him some oral medication to make him sleepy first, so he was already slurring his words and saying silly things before we even kissed him goodbye. They will be coming to the waiting room every two hours to give us updates, so we'll be sure to post as we hear how he's doing. So far everything is going great.

Please be praying for Dr. Heinle, his heart surgeon, and Dr. Andropoulos, his anesthesiologist, that they would be attentive, skilled, and aware. Please pray for the nurses as well - I just didn't catch all their names.

Monday, August 24, 2009

Super Why's trip to the hospital

Jack's pre-op appointment today was a little long but overall went well. My mom made him a Super Why costume that he just HAD to wear to the hospital today, so of course he totally charmed all the nurses... not to mention everyone who saw him in the hallways and elevators. Today Jack had a chest x-ray and an EKG, met with anesthesia and cardiology, got his ears and throat looked at several times, and had blood drawn. He was unenthusiastic about getting his blood pressure checked, but he actually did surprisingly well with the needle stick. He also had a teaching time with the Child-Life Specialist. She talked to him, using a doll, about what would happen tomorrow and what things he would see (tubes, wires, bandages) when he wakes up. He was mainly interested in whether he would get red, sparkly shoes like the doll's shoes along with the tubes and stitches.

Tomorrow Jack will be the second surgery of the day. We have to be there at 9:30 a.m., so the surgery will follow after that. We will post another update on here after they take him back to surgery so that you guys can be praying. We really appreciate all the help, encouragement, prayers, and support that we've received from those of you here and farther off. It is so good to hear about all the people lifting Jack up. Josh and I will be staying at the hospital tomorrow night, and we're so blessed to have all four grandparents here to stay with Elijah and take care of him so that we can focus our attention on Jack right now.

Please pray tonight that everyone gets a good night of sleep, that Jack isn't bothered by hunger and thirst tomorrow morning (no food after midnight; clear liquids until 7:30 a.m.), and that no more urgent cases arise overnight, which could result in bumping Jack to a later time or day.
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Wednesday, August 19, 2009

A Baby on the Way

I realized that I don't update my blog enough. I think that I've said that before. I noticed that not only did I make no comment on Elijah's first birthday (in March), but I've also failed to mention that we're having another baby. In about 9 weeks. So if you don't already know this news, then I definitely don't keep in good enough touch with you. Give me a call sometime. Or get a Facebook account already.

Here are the pertinent details.
We're having a girl. That's exciting.
She's due on October 18th.
Her full name is Avery Noel Turner.
And here are some pictures.