So the swallow study did not go well at all. He was aspirating, quite a bit. It is unsafe for him to have anything by mouth for now. We are not sure if he's having difficulty now because of the rsv issues or the seizures causing neurological damage or maybe a combination of both. Either way, he has to be fed by a ng (nasogastric) tube for now. They want to put in a gastrostomy tube, which goes through the abdomen into his stomach, but he's been through so much and he does not need anymore stress on his little body. Plus, anesthesiology wants him to be symptom free from the rsv for 6 weeks. They plan to do surgery in about a month. I am still hesitant about doing the surgery in general though. I feel that Nick has had a setback from everything he's going through and I feel that he can recover and return to feeding by mouth, but it will take some time. To me, putting in a g-tube is a permanent solution to a non-permanent problem. Maybe I'm wrong and he will need the g-tube long term but I feel that he deserves a second chance and time to recover from everything he's been through. They plan on doing another swallow study in 6 months, I think I might try and push for another one earlier. I don't want him to loose everything he's learned, from all his oral skills, then have to start all over when they think he's ready. We will work closely with occupational therapy to keep developing his oral skills while he's using the ng-tube and hopefully he won't loose anything he has learned so far. We have been trying to do a gastric emptying test for a couple days but he has too much barium in his intestines from the swallow study to do the test yet. They will try again tomorrow morning to see if they can do it. Otherwise, it's another appointment we'll have to make.
But the good news is we get to go home tomorrow! We are so happy to get out of here and get home and try to get things back to normal before possibly having to go back for another procedure....
Thank you everyone for all the prayers! We appreciate every one.
Stick to your guns Mama! You know Nikolas best and he WAS eating just fine before he got sick so there is a decent chance he might again if he has some time to recover.
ReplyDeleteMost everyone was positive Mason would get a trach and that I was just deluding myself and avoiding the inevitible..but here we are going home with no trach!
IF Nick needs a gtube later then it's nothing to get one.
Looks like we will both be going to Disneyland on the same day! So happy for you.
Give Nik some love from CA for us!
If he has RSV and issues breathing because of it, swallowing will not take precendence over breathing. I would get him cleared of the RSV and demand a swallow retest before putting a g-tube in. The g-tube is not a bad device. It helps the kids get nutrition, heal and gain strength - and can be removed rather easily, and the hole closes up in 5-6 hours.
ReplyDeleteWhen Andi needed heart surgery and was laboring breathing because of her heart, she couldn't coordinate breathing & swallowing as needed, because she was breathing so hard. She ended up with aspirated pneumonia because of it, and as you know - it's one giant step backward.
Post-surgery, Andi also had her O2 increased slightly here and there. It takes time for the body to heal, and it sounds like Nikolas is having to heal from a lot!
Did Nikolas participate in synigis? It's a shot to help prevent RSV for medically fragile kids. Just wondering if that was offered to you. If not, someone should get their head tore off, which could be therapeutic for all you've been through.
Hang in there!
Anna & Andi Bean