The Glenn Surgery Date

Yesterday was a very long day at the hospital.  I got there at 9:30am and wasn't finished until a little after 3pm. Yesterday was Dylan's sedated echo that his Cardiologist ordered for him at his last Cardiology appointment. Poppo went with us this time :-)   We were also scheduled to see Dr. El Said after Dylan's echo to go over his echo and to go over the results from his 24 hour Holter monitor that he did last week.  We arrived at the hospital at 9:30 for a 9:45 check in time for a 10:30 appointment ......... why we have to check in so early beats me, but whatever.  They called us back shortly after 10:30 and we did his weight and height check before we went back to his Echo.  Dylan weighs 5.392 kilo's ...... which is about 11lbs 8oz  and he's 23in long <3
Once we got back to the Echo room, it was the whole paperwork, explanation, yada yada yada.... While we were doing his weight check and paperwork and all that, Dylan's Sat monitor kept going off because his sats were dropping below 75, so when we were filling out the paperwork, the lady told me that she wanted the nurse to come examine him first because with his Sats dropping, they might not want to put him under sedation.  By the time the nurse came to check him out, Dylan had started to fall asleep.... and when he's sleeping, his Sats go back up to the 80's, and his heart rate slows down, so the nurse said she was ok with putting him under sedation with the Sats being in the 80's.  Dylan was already falling asleep, so the nurse said since he's falling asleep, she just might give him half of the sedation dose and let him sleep........ I told her that would be a mistake :-)  I said " He might be falling asleep right now.... but the minute you try putting that blood pressure cuff on his arm, he's gonna wake up, and he's not gonna wake up happy..... and the sedation meds don't last long on him.... with the full dose, he still woke up before the echo and EKG were done last time" .......... so..... she gave him the full dose... and I was right... he was out of it, but as soon as she grabbed his arm to put the cuff on him, he tried to pull it back.... he wouldn't open his eyes, but he was trying to fight it, and he started to wake up right as they were finishing his Echo.

Dylan passed out after the meds kicked in <3

After his Echo, we had to wait for about 45 minutes until it was time to see Dr. El Said, so my dad and I just walked around the Hospital to keep peanut calm.... we started to head towards the NICU just for old times sake, but I checked my facebook notifications on the way, and I saw that our friend Lisa was in Radiology with Evan, which was one of Dylan's NICU neighbors, so we turned around and headed to Radiology to visit with them for a bit.   We walked around a little bit more until Peanut fell back asleep, and then we went to wait for our appointment.

We got called back to see Dr. El Said a little after 1pm.  The first thing she said when she walked in was " He looks bluer" .....  She had the results from his 24 hour Holter monitor that he did last week and she started to look at that, and said " Yep.... he's a little Tachycardic ..... His heart rate is a little to fast for my liking."  She asked how he was doing, so I told her about his Sats starting to be more in the high 70's now, and dropping into the low 70's at times.  I also told her how he has been sleeping a lot ........ as in sometimes he'll fall asleep at 3pm and not get up until 6am the next morning. I try to get him up, change his diaper and keep him up, but he'll cry and fuss until I let him go back to sleep.  So this was her plan:
1.)  Stop the medicine Periactin that he was on for his tummy because it can increase the heart rate and make him sleepy
2.) Stop the lasix ( not exactly sure why)
3.) Stop the Enalapril which was helps with is blood pressure because...
4.) We are starting him on Sildenafil which will help open the vessels in his lungs which will also hopefully help with his Sats .... and it also treats the blood pressure
5.)  Start Digoxin to help lower his heart rate.

AND we have a date for his next heart surgery ( the Glenn).  Dylan will be having his Glenn on September 1st.   I guess Dr. Lamberti had originally put him on the schedule for September 9th, but Dr. El Said keeps asking him to push Dylan up on the schedule because she doesn't really want him waiting that long to have the Glenn.  She told me that we will try this combo of new meds to see if that helps with everything, and if it doesn't and Dylan's Sats continue to decrease before surgery, she said that he might require oxygen at home, or she will have to admit him, and they will have to do the surgery emergency based. We started the new meds last night, and we have to go back Thursday morning to see Dr El Said to see how the meds are working............. I really hope they start to work..... I don't know how long it takes for them to work, but so far I haven't seen a change.... his monitor was still going off a lot during the night for him being under 75, and when he was awake this morning, his Sats were still dropping to the low 70's with his heart rate still in the 160's and 170's .........  He woke up at 5:30 this morning and was asleep again by 7:30am ........ so we'll see as the day goes on and tomorrow if the meds are going to make a difference I guess.

I feel sick .... I can't eat much, and I just feel sad.  I know that Dylan is ready for his next surgery, but I'm not :-(   I'm not ready to hand my baby back to them, I'm not ready for them to stop his heart and cut him open. I'm not ready to see him hooked up to all those wires and to see him be intubated with all the chest tubes again.... I'm just not ready.  I'm not ready to not be able to hold my little guy for probably at least a week. I'm not ready to have to be away from home again, living in the hospital.  I can't wait until this is over and we're past this and we don't have a looming surgery over our heads for another couple of years. I can't wait until we're past this and Dylan starts crawling and walking, and he can play like a "normal" boy .... not having to be in the hospital and going to doctors appointments every.single.day  for awhile.....

I'm scared...... I read a lot of good success stories and it gives me hope......... but unfortunately in our Heart Community ..... for every success story... there are about 5 that are not so lucky.  I've read about little warriors that fly through their Glenn and are home within a week.......... but then I've read about ones that flew through their Norwood, which is supposed to be the hardest one to get through, and not make it past their Glenn...........  ANYTHING can happen... and that's what scares me the most..... I know he's a very strong boy, I know he's a fighter, but sometimes that doesn't matter...... sometimes life just isn't fair and things don't go the way you want them too or the way should.  I realize that it's true in the every day world, even for a baby or person who isn't sick ........anything can happen to anybody.... but it's just a little more scary in this Heart World.

Dylan will be 5 months old this Thursday. He's getting SO big.  He's smiling so much and talking up a storm. I love his little voice <3   I think we're gonna take him to get some professional pictures taken this weekend for his 5 months.  I hope the little bugger smiles for them ;)

 

As always, we are so thankful for everybody who keeps Dylan in their thoughts <3  Thank you!