Wednesday, August 3, 2016

Post Dental Work

We have a brave  boy !  John was ready to leave for the hospital at 8am, kind of excited about it, even  though we didn't have to leave until 10 am.  Good thing he's not that much of an eater because he did not ask for food or drink at home or at the hospital until 1pm and that's when he got the versed medicine to help him with separation anxiety and he was off to the procedure.

It brought on many memories sitting in that waiting room that I did not want to relive and it didn't make it any easier knowing it was only for dental work this time.

Waiting in Dad's lap

John was in good spirits and by the time they had to take him he was so drugged up that he did not cry or wasn't even phased that the anesthesiologist took him away from us, he was practically sleeping.  When we walked into pre op there was a game and two matchbox cars waiting for him, courtesy of Child life department, so that made it less scary . We played one round of pop up game, then some Legos and then with Play dough. We were scheduled for 12:15 but of course they were running behind (hospital time, we like to joke) and they took him around 1:15.  Before that we discussed the procedures with our dentist, Dr. Lubas and the anesthesiologist, who is very familiar with heart kids, as she works with for pediatric cardiac kids only.

All drugged up Jasiu

We were escorted to the waiting room and had some lunch in the waiting room. Then I went to pump and came back and still no word from the OR. Then around 3:30 they came and called us that they were finished. We talked with Dr. Lubas. John had 2 palpitations (sp?) and all the fillings and 3 crowns put in. ( I need to take a pic of those but they are silver).  All went well as scheduled. Thank God!

Next only one parent was allowed in the phase 1 recovery - immediately out of the OR. As soon as I entered the double doors I heard Jasiu, not crying rather coughing. He does this if his throat hurts he coughs. He was quite polite about it and covered his mouth every time he coughed. I asked if he can get water and they allowed it, it only slightly helped. Then the anesthesiologist asked if he likes popsicles?  That calmed him down immediately and she even brought two ! So that helped his spirits and throat, I call that a win, even though it was such a bright orange (read artificial color and most likely flavor).   After about 15 minutes we were escorted to another phase 2 recovery room and dad joined us.

The phase 2 recovery he got some juice, vitals were taken a few times and then finally he was ready for discharge, it lasted about 45 minutes. Finally the IV came out and we were discharged around 5pm.  All in all not terrible timing.

In the last 3 hours Jasiu had some chicken soup, yogurt and bread dipped in milk so his appetite is slowly returning.  Only restriction we have is no swimming and bike riding due to anesthesia needing to wear off completely over the next 24  hours.

Then we are on to regularly scheduled activities.   Kindergarten in 2 weeks !!!

Now we have movie night and then off to bed. Thank you for all the prayers.

OR sooner than we thought-- Dental Issues

As we have been reminded time and time again, nothing is "easy" with HLHS kiddos, dental work included !

Two weeks ago we had a pre Kindergarten dentist appointment and we learned that between his last appointment a year ago (my bad), John has acquired 7 cavities !    SEVEN ! 

I don't know whose fault it is at this point, could be that he loves lollypops and bites them and we have only slightly limited their existence in John's diet, could be that his teeth have been exposed to sugary syrups from all the meds he has had in the past and his teeth enamel is weak, could be that he inherited my terrible teeth genes, or could be that we allowed him more often than not to brush his own teeth lately, mostly since his last appointment.  Anyways, it is what it is and we have to fix it. 

For a normal kid, say Emily, whose one cavity we already fixed last week, you get some numbing gel, get a local anesthetic shot and the dentist fixes it right in the dentists office, no big deal. But for a cardiac kid, one who is on aspirin, first the kid takes a dose of antibiotic for the cleaning and dental exam, just in case prior to the appointment.  If a cavity exists and has to be fixed, we would have to stop the aspirin for 7 days prior to getting the tooth filling. Since John has 7, this means they would have to fix it two at a time, so that would be off of aspirin for a minimum of
 weeks at a time, for someone who depends on the aspirin medically, that is beyond the comfort of our cardiologist, so we have to do it all at once -  IN THE OPERATING ROOM  , UNDER GENERAL ANASTHESIA ...

Did I say in the Operating Room with a breathing tube down the throat administered by the pediatric cardiac anesthesiologists, same ones that did his open heart surgeries? Yes the same ones.

When I heard this I almost threw up right there in the dentist office. I was/ am not ready to send him to the OR again, not even for dental work. 

I was assured that it's very routine, we should go home the same day and all will be well, but this is still a big deal to us .

We go in for this today . Please send a prayer for John and for a successful procedure with no complications from either the anesthesia, from the dental work  and for his spirit. He not phased by this at all since he doesn't remember the last time he was in the OR. He knows hes going to the hospital and will have his teeth fixed but probably doesn't realize what that all entails. That is a good and bad thing, I want him to not beg for the candy and soda, but I don't want him to be terrified of the hospital - it's a fine line. 

I will keep the blog updated.

Saturday, July 9, 2016

Semiannual Update

So this is a looooong overdue update.  Haven't updated since February and we have been busy, so we will have one long one. 

1. Today Jasiu had his semiannual appointment with cardiology. His LAST semiannual as he just graduated to ANNUAL appointments !!! Mama is more scared than Jasiu.  He did great at the hospital and confused it with "mom's hospital" (I'll get to that soon). He walked in like a boss, went straight for the toys in the waiting room to wait his turn. Then he walked in and got his height, weight and vitals. He was perfect for EKG and echo as well, at this point John is a pro and such a good boy. He is almost a full pediatric bed in the room, so that's huge for us.  The echo and EKG were read and Dr. H said all looks great, no changes in leak, still mild and function is great and there is no narrowing in any of the areas that possibly could narrow. Then he said we can see you in a year, unless John says something is different or we notice anything off out of the ordinary ! WOW one whole year to see cardiology. This is huge for us. Labs went decently well and the blood draw caused just a few shed tears but nothing a new LEGO set couldn't fix.

with Dr. H.

EKG Time

Getting an Echo like a boss

2. This week marks 6 weeks that Jasiu is a big brother, for those readers that are not on Facebook, I don't think I even shared the news on the blog.  Baby Dominik was born on May 25 and Jasiu became officially a big brother, a job he doesn't take lightly. Emily being a big sister AGAIN, is also very excited, "even if the baby is a boy he's still cute " (her words).  Baby is heart healthy above all else, we had two fetal echos and I insisted on an echo after birth and they are all good and normal.  Baby is doing well and we are all adjusting to being a family of 5. The true test will be when the kids go back to school and I go back to work, but all will  be well I'm sure.

Maternity Session

Maternity Session

Jasiu enjoying being a big brother in awe...

All three kiddos

3. Jasiu is registered and getting an eye exam and another dental exam all in preparation for KINDERGARTEN !!! Another milestone in this HLHSers journey. I can't explain how excited we are that he gets to cross this milestone off his list come mid August. He knows almost all of his letters and numbers to 10 and can verbally count until 20, he is a very smart boy and just as his sister has a remark for almost anything you tell him. He negotiates well with Emily to get what he wants.

Overall, as always, no update is a good update, means that nothing out of the ordinary medically is happening, and since we are on a good streak, we like to keep it that way. We are living as normally as possible with a kid with half a heart, which for us only means that we work hard to remember morning meds, and the fact that we sometimes have to force out our blueberry out of the pool to warm him up. He tends to get cold and lips and nail beds are quite blue, even pulse ox was at 75 for about 10 minutes once, but once warmed up, it got right back up to his usual 95 range.  Other than that we have a typical mischievous 5 year old who has lots of energy, gets in lots of trouble and thinks up of the coolest Lego creations all in that little head and heart of his.

4 th of July Weekend

This is a tired Half hearted boy at 2pm after a long weekend - nap time deserved (rarely happens these days)

We keep praying that things stay this way and keep thanking God for this miracle that we are able to enjoy another day.

Thursday, February 25, 2016

~ FIVE ~

"Am I a whole hand now?" came yelling into my room this morning at 6:30. 

This little boy is super excited to turn 5. 

I am amazed at the energy and enthusiasm this kid has. He is strong willed {read: stubborn}, funny, and just amazing.  I need to start keeping better track of the blog but life gets in the way and we are perfectly fine with that.

We beat the horrible statistic we were given and I feared from the day of his diagnosis 75% of HLHS kids make it to their 5th birthday! It seems like a lot, but not what you want to hear when your dream up of your perfect little baby.  But here we are and feeling blessed !

We will celebrate this Sunday with a LEGO party and celebrate each and every day as we have been trying to since the day he was born.