Cleared for take off!

John has been doing great. He is full of energy and as inquisitive as ever. We have been trying to keep him at home, away from crowds to avoid catching a cold, but otherwise we have had a very normal schedule. John has been lucky enough to have an excellent homeschooling teacher come three days a week. He just loves her and has been keeping up well with school. We have had dinner with all his grandparents, Uncle Ted and Aunt Gloria several times. The homeroom mom from his Kindergarten class organized several families to bring us dinners and come over for short playdates/visits. He just loved getting to see his classmates and played beautifully with all of them.
Today we had our follow up cardiology appointment. He had an EKG and echocardiogram, as well as being examined by his cardiologist. He has been cleared to go back to school full time starting Monday. We got all the school paperwork done and delivered too, so I'll be taking him to school on Monday. Hopefully we'll get him back on the school bus for Monday afternoon or Tuesday morning. I think the worst part will be getting me back to work - I've liked being a stay-at-home mom!
The next challenges will be getting him back on an earlier bed time and wake up schedule. We need to review what a regular school day will be like. Hopefully he will be perky enough to go back to Lithuanian Saturday School next weekend. We also need to plan his sixth birthday for later this month. He has been talking about a pirate themed party for months, but recently mentioned wanting a Star Wars party. I think we'll go with the pirate theme since Mom has already designed a treasure chest cake and wants an excuse to make it.


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John heals quickly!

John is back to his old self! We knew he was going to do well when we were walking to the car to leave the hospital and he started pointing at everything asking "What's that?" "What's that?".

His appetite is good, he is playing with his toys, and acting perfectly normally. His only required medications are a one week course of furosemide and some iron supplements which he will get for a couple of months. We can give him Tylenol or oxycodone as needed. He doesn't want either one much, but we have been giving him the oxy at night so he can get a good nights rest. He has had Tylenol a few times - like once or twice a day at most. If I had had that surgery I'd still be wincing with every breath and popping the pain pills right on schedule!

We spent Sunday and Monday just hanging out at home. Lots of playing with toys and watching Mickey Mouse/Calliou/Jake and the Pirates. He was so energetic, I emailed his home school teacher and she was able to see him on Tuesday afternoon.

Tuesday morning we went to the pediatrician to get his chest drain stitches removed. He was very scared about that since pulling the drains at the hospital was rather painful. He was a trooper! The doctor said he looked great and all his vital signs were good.



Just a quick nap before dinner!


We had dinner at his grandparents on Tuesday which he enjoyed - he loves visiting them. On Ash Wednesday we were getting dressed for church and he announced that all his shoes were too small. As we were picking up Grandma and need to hurry, we just picked the ones that he would tolerate and hit the road. At church he was very well behaved, loved getting ashes and all the ladies at church fawned all over him. We then went to the mall to get new shoes. We had never had his feet measured - last summer we just tried on shoes until we found the right size. Turns out he went from an 8 to a 9.5/10 in only six months!
Grandma treated us to lunch at Nordstrom's which he really liked. Then a quick trip to the grocery store and home. After playing with his toys for an hour he wanted to play outside. We took a wagon ride to grandma's as the weather was nice. I had hoped that we would give some of his stuffed animals a ride in the wagon, but he decided to join them and let mom give them all a ride over and back.



Today will just be a play at home day. Tomorrow his home school teacher comes for a visit - he just loves her and she is excellent!

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First day at home

We all slept great! John ate half yogurt and half a donut. Nana spent the night, some got to visit with her in the morning. We had a lovely quiet day just reading the paper, catching up on mail, finishing the unpacking. John had a nice bath and finally let me remove a few of the band-aids. He still won't let us cut off his hospital bracelet. He played with his toys, watched movies and only had one dose of Tylenol for any pain. We unwrapped a box that came from my cousins Cathy and Ted - they sent a lovely prayer shawl from their church and John started to wear it immediately.




Mom got to go to the grocery store and we had roasted chicken stuffed with sausage stuffing for dinner. The little guy loved his usual chicken leg. Grandpa, Grandma and Uncle Ted came by for homemade apple pie and the grandparents stayed to play cards for a little while.
We cannot believe how quickly he is healing, how mobile, strong and resilient our little guy is. Now if we could just get those hospital bracelets off of him!

Home

On our way to the car, we gave the nurses on PCRU and PICU chocolate which they all seemed to appreciate.



John climbed into car seat, got out of car, climbed to second floor and climbed into bed all by himself. Nana Mary Lynn was visiting with my folks, so she stayed to see us. All the grandparents came by to see him and gave lots of hugs and kisses. Grandpa even brought ice cream and strawberries. Mom and Dad unpacked a little. We let John have ice cream and strawberries with juice box while watching The Mickey Mouse Clubhouse. Feels great to be home!
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Location:Acorn

Day four - we are going home!

John and Mom slept in! Dad got here around 5:30 am and hung out in the lounge until 7:30 or so. We woke up for morning vitals and he was able to pee!
More doctors came by and said that we were getting an echocardiogram and then, maybe, going home!
Our roomie got discharged so we had a private room for a little while.
Dad brought mom a bagel and diet Dr. Pepper for breakfast. The little guy ate an egg and a third of a yogurt for breakfast. We watched movies and napped the morning away. Uncle Ted came over for lunch and found us in the small playroom checking out all the toys. We had lunch in the room and Ted left when we took off for the echocardiogram. We all fell asleep after the test while waiting for transport.
When we got back to our room, we had a new roomie. They certainly don't let the space stay empty long.
Our little guy was able to pee again! Then more movies and more doctor visits and more encouraging intake of fluids. Then we got the good news that we were being discharged! John ran a load of stuff to the car while we waited for the paperwork. The nurses arranged for our prescriptions to be filled, so we can pick them up here before we leave. Once we get the discharge paperwork we will be heading home. They have already set up our follow up appointments with our pediatrician and our cardiologist. Can't believe it went so fast and very thankful that it went so well. Now several weeks of rest and recuperation at home, then back to school and work.
Many thanks for all the prayers. We look forward to seeing everyone soon.

Day three - wrapped up

John was thrilled with the hard boiled egg for breakfast and even ate a little pizza for lunch. His appetite hasn't been as good as usual but improving. John had his two chest tubes pulled and didn't like it one bit! I couldn't believe how long they were - no wonder he was uncomfortable.
He ate an egg for breakfast, pizza and broccoli for lunch. He is Unable to pee, so they straight cathed him twice. They did a bladder scan and everything is ok. We saw lots of docs - hospital cardiologists, icu fellow and residents, pain management team, surgical team, etc.... We spent most of the day in the PICU but got moved to the third floor before dinner. We had been told we would go to the fourth or sixth floor but they were packed and he is in good enough shape to head to a even lower level. As soon as we got to our room, as part of the settling process, he went to the bathroom and peed! The child life specialist came by and gave him a big truck to play with. He ate a little dinner and watched a couple of movies before bed. He fell asleep around 10 pm and they woke him up at 11 pm for meds and a bathroom trip. He peed again! Looking forward to a good night's sleep. John went home and I got the bedside recliner.

PICU progress, day two- continued

We spent the afternoon dozing and had visitors! My folks, John's mom and Aunt Gloria all came by for a visit. They only allow two visitors per patient, so they had to take turns. John was very drowsy but was happy to see everyone.
John watched a little TV. But really spent the day dozing.
John did get a dinner tray which looked remarkably good, especially considering it is hospital food. He only ate one carrot slice and half the tiny carton of ice cream.

Day three - progress!

John looks great! He's having some urinary retention due to the pain meds, but we are going to work on that by pushing fluids. He should get the chest tubes out today and get moved to a regular floor. Overnight he got the arterial line pulled and his surgical site bandage changed. The surgical site looks good but he wants to pick at it. He is a little allergic to some tapes and got a little blister at one site.




Daddy got to the hospital at 0530. Mommy got to sleep in the mommy dorm. It's an old hospital room with four chairs that fold out flat in curtained areas. There is a shower! So mommy is rested and clean.
We found that John got a new blanket and two matchbox cars. The blanket is red, black and taupe fleece with big red tractors on it. We will get to take it home too.
Nursing change of shift is in progress, three doctors have popped by and we are expecting the whole gaggle of docs soon. John is looking forward to his boiled egg for breakfast.

PICU progress!

John slept as well as possible. Mom read a good spy novel all night and took a couple of naps after dad got back this morning. The doctors started arriving at 0600 and the big group of all of them made rounds at 1000. John asked the doctor for hot cocoa! They have removed the foley catheter, the rectal temperature probe and the IJ central line. He got a nice big cup of warmed chocolate milk and sucked it down.




We got moved to another spot in the PICU and might get moved to a single step-down room this afternoon or tomorrow morning. Mom is hoping that we move to the single room today so she can sleep In a recliner or bed.
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Looking good!

John is in the PICU and looking great! He is very groggy but will open his eyes and whisper a little. The surgery team said all went well and that all the nurses are charmed by him. He will be in here overnight and possibly all day tomorrow, then off to a regular room. His nurse, Kate, is very nice. We will get a new nurse at 7 pm for overnight. Mom can spend the night in a dorm-like room downstairs. Dad will go home and get some sleep. Tomorrow we plan to be at the bedside by 6pm for rounds.

He just asked daddy for some water! He can't have any right now and hopefully the pain mess will knock him back out.

Many thanks for everything. The prayers and good thoughts worked!


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Waiting almost over!

He was taken off bypass at 3:30 and the surgeon came out to see us at 3:45. Our little guy did very well and the repair is done. They will try to extubate him in the OR or might wait until he is settled in his room. We can't wait to see him!
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Location:Johns Hopkins

Just waiting.....

Had a nice morning at home. We all slept in a little, got showers, mom and dad managed to sneak in a bite for breakfast, then took off for Hopkins. No traffic issues, found the correct entrance to the huge Hopkins complex and found the pre-op area easily. The little guy was a charmer as always - chatting with the resident, fellow and attending anesthesiologists. They have lots of toys which he checked out and the child-life specialist explained lots of what was going to happen. We got a scrub suit for his special bear so he keeps introducing everyone to his doctor bear. The big apple circus clown care came by, and he danced with them and squeezed their red noses. He loved the hospital pj's and socks - called them his doctor clothes. He was very brave but got a little concerned once he was on the operating table. He fell asleep quickly with the gas and we were able to kiss him. They gave him a bear while they were attaching all the monitoring equipment which they will put an ID bracelet on and a bandage to match his.

We grabbed a quick lunch, took a walk to put his clothes in the car (felt great to get some fresh air) and are now hanging in the waiting room. We got to the hospital at 10:30, they took us all to the OR at 12:30, and the surgery started at 1:50. He went on bypass at 2:20. They have a great system to keep families apprised of the progress.

All the good thoughts, prayers and support has been amazing and most appreciated.












Thank goodness for free Wi-Fi at Hopkins!

It's Been Too Long & Rescheduled Twice!!! - part 3....the final chapter!

Part 3 - the final chapter!!

Was baptized and behaved beautifully throughout the ceremony and lunch afterwards. He pointed out that his ceremonial sash was bigger than Msgr. Sal’s.

Thanksgiving with 30 family members (including 5 cousins around his age).  He managed to eat almost a whole turkey leg.

Going to the Lithuanian Embassy for a lovely Kucios (Christmas Eve)/Hanukkah event.

Being in the Lithuanian School Christmas pageant dressed as toy soldier and singing a song about snow.

Getting spoiled at Christmas with tons of affection and some toys.  His favorite gifts were a pirate ship, a Buzz Lightyear and a tie!  He actually loved all the clothes he got and wanted to wear them all, but he really insisted on wearing the tie with his turtleneck all day long.  He wants to be Santa Claus - insisted on wearing a red shirt almost every day in December, with his Santa hat and carrying a sack.  He also got to see the National Christmas Tree and see his Dad in action at work!

Going out to eat at various types of restaurants from McDonald’s to The Candlelight Inn and behaving properly and cleaning his plate.

He will eat anything and wants to try everything on the table.  Some of his favorite choices are cold beet soup, brussels sprouts, shrimp, sour cream, cottage cheese dumplings, fish, yogurt, Chinese food, chili, pizza, any fruit or vegetable, spaghetti with white clam sauce, donuts, pate, and ice cream.  He loves milk with or without chocolate syrup.  He has had some soda and been to McDonald’s but only as an occasional treat.

He is now fluent in English and can write his name.  He loves being read to.  Before he could speak English, we would read to him in English, then he would insist on “reading” the story back to us but would do so in Lithuanian.  Now he re-tells the story in English.

Hopefully we will be able to keep the surgery appointment on February 14th.  We will update this blog with progress reports from the hospital  (got the computer problem figured out!).  Thanks to everyone for all the support prayers, gifts, help, suggestions and encouragement.  We love being parents and have been so blessed to have such a sweet, smart and compassionate son.

Just some pictures of us doing family stuff!

Visiting Mom's firehouse for their Open House

Going to the Mt. Airy Firemen's Carnival.

Bringing Mom flowers!!!

Getting used to having kitty cats.

Visiting Dad's "office".

Visiting the Howard County Fair

Playing with Uncle Ted