Malachi update: They were successful with the central line insertion. Originally, they were planning on doing a more permanent line, but there was some debate as the time for surgery drew closer. When they were told that his urine culture had been positive for bacteria growth, they quickly decided a temporary line should be in place as the more permanent is more of a risk for infection. The neonatology staff is still hoping that this will not be a long-term thing by any stretch and that they will be able to resolve his crazy heart rate business from today.
At this time he's still paralyzed as the meds they gave him for surgery haven't worn off yet. so he's stable... intubated... paralyzed.. the usual post-surgery routine. He will only be paralyzed until his meds wear off though. It won't be a three or four-day stretch of time like it was after his open heart surgery. Also, the plan is for him to be extubated as soon as he can tolerate it.
This is definitely not how we were planning on today going. We were not expecting ANY of this. It's one thing to have a couple days to prepare yourself for an upcoming surgery (and even then it's not easy). Needless to say, this was rough! I really broke down crying when I handed my baby over to the nurse to get him ready to be intubated. Looking back, I think the staff thought I was solely upset and distraught with the fact that he needed to be hooked up to the ventilator again. Honestly, I was fine with him being back on the vent. (Don't get me wrong, I hated seeing him gagging and coughing on it now that he's had it out for almost two weeks, but I could handle that). I was having a hard time dealing with the fact that the problems that have been "fixed" with his heart and with his nose and with his trachea/esophagus aren't over with. He had being having some weird heart rhythms and that sort of thing, but they seemed to have been resolved. I was just completely blindsided by this. Hopefully tomorrow I can kind of see what the plan of action is for the next few days to a week. I know on his agenda (before this event) he had a bronchoscopy, a dye study (for reflux), and then probably G-tube and tracheostomy. We HAD been thinking the week after Christmas, now I'm not so sure, so we'll see.
Thank you for your continued prayers. We have been encouraged by the kind notes and comments we have received throughout the day. It's amazing to know that we are not alone in this. In the words of a close family friend's daughter (4 yrs old), "We need to pray for Baby Chi because he is sick and needs God's help." Amen!
Found your blog through Amber Price...who found you through Victoria, "Moriah's Mom". My son barely got out of the hospital last year in time for the holidays after his 4th heart surgery. I will keep you and your entire family in my prayers.
ReplyDeleteI found your blog off of the Charge listserv and have been following your story ever since. I check in and pray for your sweet little boy and your family on a daily basis. I have a son with Charge that is seven years old. I will continue to keep ya'll in my prayers and I added his prayer pic to my son's blog for other's to learn of him and pray for him as well.
ReplyDeleteKim
Hi My name is Amber...found you from another blog,
ReplyDeleteI just wanted to offer you encouragement...Remember God is there. He is with you and with your sweet "Chi" each step of the way. You can't see His hands at work, but they are moving! There's a guardian angel there...just maybe Chi's big brother, Jordan? :) Don't put anything past our Maker, He loves you that much! Hang in there, stay positive and know that Chi's name is being sent to Heaven by many.
Big Hugs and Prayers sent to you,
Amber K
Just wanted to say you have our prayers. We have a little girl 5 years old who has CHARGE. Her first several months were really hard.
ReplyDeleteMarilyn, mom to many in Texas