the process of preparing for open heart surgery. I came home yesterday to a message from our heart surgeon's nurse. Talk about hitting you like a ton of bricks. Guess I have been pretty good at burying the surgery deep in my mind..almost forgetting it was coming...talk about bringing you back to reality! Parker will have a sedated echo on October 5th and we will have our surgery consult right after the echo with the surgeon. All of this means that within a few days after the echo we will have a surgery date and be in Texas Childrens Hospital. The timing is all in God's hands, but one of our prayers will be that we will be home before Madeline's birthday on the 22nd of October. So now we wait in this land of "limbo" trying to live normal lives, but knowing his surgery is still pending. One of my blog friends' sons just had successful surgery (her son was born 1 day before Parker) and her story has given me new peace and strength. Thank you Adrienne and Bennett!!! God is so good!
Many of you have asked how Parker is doing and the news is...great! He is much more aware, alert, and charming all! People always comment how hard it is to believe this little boy could have medical needs. We give God all the glory! We don't have a scale at home to weigh him, but I know by the fatigue in my arms, neck, and back that he is gaining! He is not on any medicine and we are so thankful!
Our next Cardio appt is Aug 28th, then an appointment with the specialty Down syndrome clinic on Sept. 1st. Please continue to pray for Parker to gain weight, have no symptoms of cardiac or pulmonary issues (no meds please), and for peace for Mike and I as we prepare for his sedated echo and surgery. If anyone has advice for us on what to ask the surgeon, please send them our way. We know some of you have traveled this path before and we are anxious to hear from you!
Be blessed and hug your family tight today!
Lara
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Hey Lara, I know it's scary waiting and wondering how it will all go because you just never know how things will turn out. I think what I would ask the surgeon is exactly what they are going to be trying to fix because I never really asked that, I was just kind of like, just fix it and I don't need the details. But now, there is some small leaking of one of the valves which the surgeon and the cardio told us can happen and it's very hard to prevent that but I just feel like I need to know more. I don't think it's anything they could've prevented because the valves are the tricky part with this type of surgery but I want to know where does that leave us. We have a follow appt. with the cardio next week so I will ask him. Also I had no idea that they can still go into CHF! What?! I thought having this surgery fixed all of that! Apparently not, so you may want to ask about that. I guess technically anyone can go into CHF. Another thing I was not aware of was the atelectasis which is the small pockets of the lung which sometimes don't fully inflate after surgery which is why Bennett had to go back on O2 after not having to have it. It seems like a set back but I guess it's very typical for it to happen since infants can't cough or move around much to get all of the fluid out after surgery and being on the by-pass machine during surgery. It may not happen to Parker and it's not like they can get sick from it but it kind of caught me by surprise since I thought he was doing great and then his O2 sats dropped. They are back up in the 90's but we still have to do the chest PT to get his lungs cleared up. I will tell you that when Bennett was in surgery I received this email from a girl that was also in the same hospital with her son Liam that had the same surgery 2 days before only his was not successful and he was on life support! Talk about reading something at the wrong time- I freaked! But that is rare and you can't let your mind drift to those scary places. Liam is slowly doing better- off life support but still on the breathing machine-please pray for him! Okay, sorry for the super long comment!! I should've just emailed you!
ReplyDeleteWe're playing the waiting game too. Trying to arrange care for our 3 yr old while Max is in the hospital for his surgery coming up September 3rd. I'm curious to ask how cautious we need to be afterwards about germs, taking him back out into public places, etc.
ReplyDeleteHi Lara,
ReplyDeleteWe went through a double heart surgery last year to fix a problem with my daughter's aorta and she also had a complete AV Canal defect repaired.
The details were actually quite frightening and I tried not to think about them. I did ask what the ideal outcome of the surgeries would be and what types of things might go wrong. I also wanted to know if there was any chance that any decisions would be required of us once surgery started. Take a notebook with you for keeping track of your questions and answers.
Parker is a handsome boy and you have the perfect verse for him up in the corner.
Feel free to email me if you ever feel like you want to talk more about surgery or anything else.
Open heart surgery is no fun, that's for sure! If you haven't visited downsyn.com yet, it would be my first suggestion...lots of regular posters have had open heart surgery performed at the very hospital you'll be receiving your care at. The parents posting there are a huge support and will give you information specific not only to Parker's procedure, but also to the physicians you'll be working with.
ReplyDeleteWe'll be thinking of you as the day approaches and will be cheering all of you on!
I have been thinking about your and your family, glad I came across your Blog to keep in touch. Your kids are beautiful. I wish all the best for Parker and his surgery. Sending you big hugs and much love.
ReplyDelete