Thursday, April 26, 2012

Robot Day 2 and Home!

When we last posted Henry was napping nicely in his 9th floor ICU room.  A few hours later they told us that we would be moved to his new room soon.  Before we left, though, we noticed he was starting to be a little upset again and we found he still hadn't gone to the bathroom on his own and his bladder was getting large and hard again.  The nice day nurse Betsy gave him a quick catheter (first try!) and provided him some much needed relief before heading down to the 6th floor.

Henry must have thought he was in a parade while being wheeled through the ICU, to the elevators and to his new room.  He was sitting up and very smiley.  The new room was certainly much less fancy than his ICU room.  It was a big space shared by four patients, separated by a few little walls and curtains.  Henry made his grand entrance into his section of the room and found his entourage waiting there!  The day nurse (Annie...she was awesome!) was amused to see everyone there waiting for Henry.  It was nice, though, to have family there so we could take turns being with Henry, eating, etc.

Around 3:30 they came and removed the chest tube that had been used to drain the excess fluids from around the area where they put in the pacemaker.  There was a surprising amount of tubing in there!  We were excited to have the tube removed because it meant that Henry could walk around.  He kept telling us "down, down" but when he was finally down to walk he wasn't too happy about it.  We persisted though and managed to walk to the play room....which we found out had just closed!  Ack!  So back to the room for books, DVDs, toys, etc.

Here is Henry, happy to be in his new room:

Our families left around 8 or so and we settled in the room for the night.  Henry was off of the IV pain meds and was taking some by mouth.  It must not have tasted good because he was not a fan of it!  Poor kid was also constipated so the night nurse had to give him a little help.  Later he drank some milk and we though he was ready for bed.  Apparently he had other plans... For some reason he would not settle into a deep sleep.  He would doze off and then his whole body would jerk and he'd wake up upset.  This went on for hours.  Eddie and I finally started doing shifts so that we could at least get some sleep.  We let the nurse know what was going on and one of the cardiologists on call came in to see Henry.  She was great with him and after looking told us the sleep issue may be his reaction to pain meds, being overtired or being "hyper-vigilant" (meaning he was paranoid someone was going to poke or prod him). 

After what seemed like a long night the sun was coming up, the day nurse returned (we really liked her).  She got us started with his prep to go home!  His bandage came off his chest and we were able to see his incision for the first time.  It is very thin right in the middle of his sternum and about 2-2.5 inches long.  They use stitches much like plastic surgeons use so the scar should be very thin.  Once he was de-bandaged he had an EKG, echocardiogram and chest x-ray that the surgical team reviewed to make sure things were going okay.  We were pleased to find out that things were looking really good (a few different doctors remarked about how well things had gone) and that he'd be released around lunchtime! 

But before we left we had one more projectile incident (fun!) but he finally dozed off after it.  So while we waited to be be released he slept on Eddie's lap and then mine.  One of the last things they did for Henry was disconnect all of the IV tubes and sensor cables.  Henry was really glad to be "freed" of all of the IV tubes because that meant they could take off the little boards that were holding one wrist and the other elbow straight.

We packed up our belongings, changed Henry into his "real" clothes and headed out to meet Eddie's dad who drove us home. 

Here is Henry in his cool dude sunglasses, happy to be going home:

We got back around 1:30 and we were so happy to be home!  Henry seemed to be happy to be home too.  He drank a little juice and then needed a nap.  He took a nice nap in his crib while Eddie showered and I snoozed. 

My mom made a delicious meatloaf dinner for us and we enjoyed it.  Even Henry felt up to sitting at the table like a big boy and had a few bites of food. He really perked up after dinner and enjoyed playing "catch" with Ding Dong (my mom) and then went nuts when Aunt Kitty brought him balloons!

Here is Henry have some fun at home:

We gave him his first dose of antibiotics and quickly saw them again as he did his Exorcist impression. (Poor kid!)  We got him cleaned up and did bedtime as usual.  He was fussy on and off while sleeping and Eddie and I were thankful that my mom had a "sleepover" with Henry and kept him calm so we could sleep.  We did have some "fun" in the middle of the night when Henry had some milk and promptly did another Exorcist...all over my mom!  Thankfully we all have a good sense of humor about everything and he was cleaned up and back in bed in no time.

This morning he was cuddly when he got up and had some quality time with Eddie on the couch.  He perked up again and played with some puzzles, his dry-erase board, etc.  MomMom and PopPop came for a visit and he liked having them here.  They played with his piggy bank and threw the ball around.  MomMom even got him to eat a little lunch!  It was a small victory until we tried his antibiotics again....same result as last night after just one little taste!  (The texture is kind of gritty.)  I put the rest of the dose in a spoon with some apple sauce and we had good results.   We gave him some milk and he was down for a nap. 

It's nice to have him back at home and getting back to his normal everyday activities.  Tomorrow we'll be able to give him a shower, which should make him feel much better!  We are just hoping his appetite and "drive to drink" (a phrase one of the doctors used...made me laugh a little) return some more and that he can keep his medicine down.

Thank you again for all of your support and kind words!  It has made a huge difference for us!

Tuesday, April 24, 2012

Henry's Robot Adventure

Yesterday morning Henry got up around 7 but we didn’t have to leave the house until 10 so he got a lot of running around the house time. We also let him take one last bath since he’ll be on showers only for a few weeks. He was a happy camper and was in a good mood the whole morning. We loaded up the van (who knew we needed so much stuff for a short hospital stay!) and headed into the city. (We being Beth, Eddie, Henry, Grandma Pat Pat, Grandpa, Ding Dong, and Grandad.) We got to the hospital around 10:40 so he had time to run up and down the ramp in the lobby, which is his favorite thing! A little bit before 11 he said “bye-bye” to the grandparents and we headed up to the surgery floor.

Henry was thrilled to be in the waiting room as it had a plethora of fun toys, including two cars to drive and bubbles! He got checked in and changed into his tiger scrubs, which were so big that they looked like he was wearing Hammer Pants! We then waiting for a long time in the waiting room since Henry’s surgeon was in another surgery and then they had to prep the OR for him.

Once they were ready we got to go into a little room where Henry got to watch TV and have some “happy juice” to make him calm and sleepy. When it was time we got to put in some fun scrubs, hairnet and masks and go with Henry into the ER to be put under. Here is Henry right after his "happy juice":

By this time he was a little loopy from the “happy juice”. The gas they used to put him under had a cherry scent and he kept trying to licking the mask, which was hilarious. It didn’t take him long to fall asleep at all. Once he was out we left him and headed up to waiting room with the grandparents. (Beth’s note: I was much more calm and okay than I thought I would be. I didn’t even cry when we left him!)

We thought that the procedure and recovery wouldn’t take long but we were wrong. It ended up being about two and a half hours before we were able to see him. We were told what elevator he would be coming out of, but didn’t realize the elevator opened on the front and the back and we missed him coming on the floor and when Beth’s dad asked he was already up in his room and we were able to go in. We spent a little bit of time with the two of us with him. When we got to the room he was still in the big transport bed, had on the full oxygen mask and lots of tubes/wires and looked really tiny. He hadn’t really come to from the anesthesia until we got there so we were the first people he saw when he woke up. Beth got to hold him while they changed out the big bed for a crib and then we put him back down for a nap. Beth’s parents come in for a few minutes, followed by Eddie’s parents and then we all hung out some more.

From 4-10 we mostly just hung out with him while he was in the crib. He was awake on and off, managed to have some juice but was most content when he was asleep. His surgeon and his electrocardiologist came by to check on him and both reiterated that the surgery went well. They were able to place the pacemaker with only one incision, which they didn’t think they’d be able to do. (His surgeon was pleased about this but did note that it meant less cool scars for Henry to impress the ladies with later!) Karen, Mike, Ellen and Meredith joined around 6 to spend some time with Henry and with us. We took turns going to grab a bit to eat and split the group between his room and the waiting area.

During the course of the evening the nurses kept checking his diaper to check for urine but didn’t feel any. Apparently it is common for little ones to “forget” how to go to the bathroom after they’ve been under. Henry was one of those kids. As it got closer to 9 it became more evident that he was very uncomfortable while awake because he wasn’t able to go to the bathroom. The nurses tried pouring water from one container to another, putting his hand in the water to splash around and washing him with a warm cloth- but no luck. The first catheter wouldn’t take and so they switched to a smaller size which needed to be run 3-4 times before finally taking and giving Henry some much needed relief. (He had been holding in an impressive amount of urine!)

By the time this was done, everyone except Beth’s parents had headed home. They took up residence in the waiting area for the night and we crammed into the tiny window-side sleeping area. (It was cramped but had an amazing view of the city!) Henry slept from 10-12, was up for about 30 minutes and then slept until 7 this morning. He slept through the alarm that went off once an hour when the medicine ran out. We would wake up, watch the nurse change things out and then fall back asleep for 45 minutes before being woken again. Beth is confident they should be able to set the alarm to only ring outside the room- that would have been nice. The only good part of waking up every hour during the night was rolling over and looking out the window of the city at night. The clouds cleared up and it was a really beautiful sight. We noticed that they don’t keep the Empire State Building lit all night, which probably save them a bundle on their electricity bill!

Here is a bad cell phone photo Beth took this morning of the view:

Henry was a bit more himself at 7 am when he woke up. Over the course of a few hours he was taken off his pain IV and the catheter was removed. The doctors did some testing of the pacemaker which went well and then they did some general examination type stuff. We got Henry to have some sips of apple juice, a few bites of yogurt and a couple of ounces of milk. He read some books and provided the animal sounds he loves to do and that made us smile. He got especially excited about a new book that Meredith had brought him that had jungle animals driving a jeep!

Here is Henry relaxing this morning with what we've been calling his "bad spray tan" (the leftover stain from the iodine they cleaned him with before surgery):

We found out from the doctors that because of the chest tube and some antibiotics he still needs via IV, he’ll have to be here at least another night. Unfortunately we will be moved to the 6th floor at some point during the day and would lose much of the amazing view we had of the Hudson and midtown Manhattan.

Around 9:30 he was getting fussy with the milk and up came the milk, yogurt and juice he had during the morning. He was covered in it (and still smells bad a few hours later!) so when he got cleaned up we used it as an excuse to move him into the rocking chair with Eddie for a bit and then to Beth and then after he fell asleep we moved him back to the crib where he is as of now (11:00 am Tuesday).

We are thankful that our families and friends can be here to support us and those that aren’t here support us electronically on Facebook, email and text message. We feel so lucky to have such amazing and thoughtful friends. Being on this floor (cardiology ICU) with so many very sick kids really brings Henry’s situation into perspective. Sure we’d rather him not go through this and have to deal with a pacemaker for the rest of his life…but it could be much worse.

We will post again when we have more updates.

Thursday, April 19, 2012

Pre-Op Fun

Well, it's official...Henry is a trooper! He sat patiently and quietly through an EKG, a long echocardiogram (ultrasound of the heart), bloodwork, chest xray, general health check AND a urine collection (you can imagine what that may involve with a 20-month old....I'll just say glorified ziploc). We got there a little before 8:30am and finished at 12:30...a long morning for anyone! The doctors and nurses all couldn't believe how great he was and he made a lot of people smile today. I'm hoping this is a good indication of how he will be on Monday when he has his surgery.

My (Beth) parents made it up here yesterday and so got to come with us to Henry's appointment today. It was nice to have them along so they could see the facility before Monday and to help keep Henry occupied. After the tests were all done we hit up a little pizza place near the hospital and enjoyed some NY pizza before heading home.

I hope to continue to keep the blog updated (hopefully with some pics) next week as we will have internet access at the hospital.

Thank you all for your thoughts and support. It's been more helpful than you know!

Saturday, April 14, 2012

Robot Update

Yes, that's right...the subject of this post is "Robot Update". Why? Since Henry's a little young to understand much of what is going on we decided to introduce the idea of the pacemaker to him as a "robot". We taught him where his "robot" will go and he'll say "robo" and point at his tummy now.

We went into the city yesterday and met the surgeon that will be implanting Henry's pacemaker. The meeting started with the surgeon's assistant giving Henry a new puzzle to play with during the meeting (and take home!). The surgeon himself was great and we really enjoyed the meeting, especially since he had a pretty good sense of humor (i.e. comparing the anaesthesia/pain meds to a "five martini breakfast" for Henry).

Some fun facts we learned from the meeting:

-The prep for the surgery will take longer than the surgery itself (30 minutes).
-Pacemakers are no longer the size of the Gutenberg Bible and in a year or so (after he grows a little) you won't be able to see or really feel the pacemaker under Henry's skin.
-Henry will not be able to be a welder when he grows up (Sorry, Dickie!). Apparently the sparks from the welding can interrupt the function of the pacemaker.
-Henry won't be allowed to "hang out" between the sensors at the front of stores that tell the stores if people are shoplifting. (He is fine to walk through them...he just can't stand there for long periods of time.)

After we met with the surgeon his assistant took us on the tour of the floor where Henry will stay after the surgery. The rooms are spacious and there is a nice little lounge for families. (It has a beautiful view of the city, by the way.) Each room has its own computer outside of it with monitors and patient information for the nurses and doctors to see.

We also got to see the playroom, which had a neat aquarium and lots of toys. While we were there Henry got two other puzzles and a toy horse trailer to take home! Hopefully Henry won't expect these sorts of gifts every time we go to the doctor now!

We have really liked all of the doctors and staff members that we have met and like the facility itself. Because it is a Children's Hospital the decor is really awesome and includes a lot of displays with books, paintings from different stories, lots of colors, etc. Henry especially likes the ceilings in the elevators. We feel very lucky to be able to have Henry being taken care of in such a great place.

We head back again next Thursday for some pre-op tests like x-rays, EKG and blood work. My parents will be up by then and will join us on that trip and then we'll head out and about in the city for some sightseeing with them. Hopefully the weather will cooperate!

Tuesday, April 10, 2012

Easter Fun

We took some time to celebrate spring as a family since Eddie actually had some time off from work and reffing!

We headed over to Abma's Farm on Friday to see the animals and, we thought, to see the Easter Bunny. The Bunny was not there but we did enjoy seeing the pigs, sheep, goats and chicks. Henry enjoyed running around and got a big kick out of feeding a goat some grass.

On Sunday morning Henry found that the Easter Bunny had come to our house and brought him a few little goodies, including sunglasses. He liked to say "Duuuuude" when wearing them since we told him he looked like a cool dude.

Later in the day, Henry had a little Egg Hunt at Eddie's parents' house. Of course, Henry's favorite part was dumping all of the eggs out of his basket.

It was a really nice weekend, especially since Eddie was able to spend a lot of it with us.

Thursday, April 5, 2012

More Details: Henry's Surgery

First, thank you all for all of your kind words and support since we posted about Henry's upcoming surgery.

We found out yesterday that Henry's procedure will be on April 23rd and will last about an hour. He'll have to stay at the hospital for one or two nights. (It just struck me that his room might have a really neat view of the city depending on what side of the building it's on!)

We will meet his surgeon next Wednesday and then he'll have some pre-op tests (I think an ultrasound, x-ray and things like that.) on the 19th.

For those of you who can only picture Dick Cheney when you think of pacemakers, I give you the following:

List of Celebrities With Pacemakers That Are Cooler Than Dick Cheney:

-Julie Bowen (Claire Dunphy on Modern Family)

-Roger Moore (even though he's an inferior Bond, I'll count him as cool)

-Elton John

-The kid from the Volkwagen Star Wars/Darth Vader commercial

Monday, April 2, 2012

Update: Henry's Heart

First, let me apologize for how long it has been since the last blog post. I am not sure I’ve ever gone so long without a post!

We’ve been pretty busy with things like swimming class, storytime at the library and enjoying unseasonably warm weather! We also took a family trip to Boston! (Well, Eddie had a conference to attend and we tagged along with him!)

Besides all of the fun, we’ve also been dealing with some challenging news. We found out from Henry’s cardiologist that his condition has progressed (and not in a positive way). His 24-hour monitor revealed that he is experiencing some breaks/pauses between beats both during his waking hours and during sleep. She said that this was a sign that his condition was worsening. She brought his monitor results to an electrophysiologist for review as well. He concurred that this change in his condition was not a good sign and said that it meant that Henry will need to get a pacemaker.

Getting that news was not easy. I was pretty upset the morning that we found out but was glad that Eddie could leave work to spend the morning with us. We also had the Boston trip right after to help to distract me while we waited for our appointment with the electrophysiologist. (I’m sorry if you are reading this and are surprised we hadn’t shared this then. We didn’t want to tell too many people until we had some more information about everything that was going on.)

We had our appointment with the doctor this morning at the New York-Presbyterian Morgan Stanley Children’s Hospital, which is part of Columbia University Medical Center in New York City. It was a nice and easy drive to get there, which is great. Henry was a patient little patient while they hooked him up for a quick EKG reading and then took his blood pressure (one cuff on each arm and leg!). The doctor/electrophysiologist was very nice and explained everything in a way that made it easy to understand.

Basically what is happening with Henry’s heart is that the nerve that communicates between the two halves of the heart isn’t doing its job all of the time, which means the bottom half of the heart (which pumps the blood out to the body) sometimes forgets to beat, sometimes for a few second at a time. This is, obviously, not good. Because there is no way to repair this nerve, the pacemaker will help the heart when it doesn’t get the signal to beat.

The pacemaker is about the size of a half-dollar (but a little thicker) and has two wires that connect t the heart (one on each half). It will sense when the top part of Henry’s heart sends the electrical signal for the bottom half to beat and if the bottom half is being lazy, it will give it a little jolt to remind it to beat. (I always thought the pacemaker was just an ongoing thing but it only activates when it is needed.) The device will be implanted in his belly for now and in 5-7 years he’ll get a new one that will be placed up by his shoulder.

The neat thing is that technology allows the pacemaker to give out information about how often Henry’s heart is having the signal issue, what the batter y life is like, etc. There is an external device that we can hold over where the pacemaker is and it will gather the information. We will be able to call the doctor’s office, hold the device to the phone and it will transmit the data. This means we only will have to go in twice a year to have things checked out in person.

Short term effects of having the pacemaker put in: Henry will have a few days in the hospital, won’t be able to do swim class or baths for a few weeks, and he can’t play dodgeball. Seriously, the doctor said this…as a joke. :-)

For the long term: In 5-7 years he’ll get a new pacemaker. He won’t be able to play contact sports. (I’m not so upset about no football but no baseball catcher is a little sad…he can’t be like daddy.) He’ll need to get new pacemakers every so often but knowing how quickly medical technology moves by the time he’s an adult they’ll probably have some robot pill that will do everything.

I’ve got to say that today’s appointment was a lot easier than the original phone call we got saying that he’d need a pacemaker. I feel better having information. (I had been on a self-imposed Google and WebMD ban so that I wouldn’t get freaked out reading about everything that probably didn’t even apply to Henry.) The staff members at the hospital were great and I really felt at ease about everything.
We don’t have the exact day for the surgery yet but it will probably be sometime in early May.

Thank you to all of you who have shared your concern and kind words of support. We feel lucky to have such great friends and family in our lives.