Well, we have Gannon home but the Gannon that is home is not the Gannon we sent to the hospital. It’s okay…we’re thankful for what we have but we are hoping he will get back to normal.
He has an Ng tube and does all his feeding that way. Gannon isn’t swallowing on his own yet.
He is totally not himself. He’s… low energy. He’s whiny. He’s hard to please. He doesn’t manage his emotions. He’s not content. He’s hard to understand when he talks. He is not the easygoing guy he was.
It takes three hours at this point to do a feeding and he needs them four times a day…YEP, 12 hours a day just to eat. By the time one feeding is done, another needs to start.
Worse is that Gannon is very traumatized each time a feeding starts. He cries and fusses. We have tried explaining that it’s just a feeding and he doesn’t have to have the tube inserted again…just that his shakes have to go down the tube. He hates it. His fear makes it miserable for everyone.
We still need to try to get him to swallow and he can try and eat food even with the Ng tube but Gannon even with his best efforts, can’t swallow. We’ve bribed him with so many things…no luck. Kalissa even tried to get him to eat his favorite ever Chick-fil-A sauce but he doesn’t swallow it. He voluntarily puts it in his mouth. He voluntarily tries…but it doesn’t go.
We are told this is all temporary…but, we still have to plan for the worst just in case.
There are a whole host of things that are being worked on.
-He needs a medical equipment place. He needs a pump as feedings take way too long.
-How does he get back to school? The feeding stuff needs to be figured out first. There is a backpack his pump can go in but all of that needs a doctor’s orders. So that’s all called in and now the wait for supplies is on.
-Will he need a nurse at school? Can the school nurse handle this? How does all of that happen?
-follow up appointments need to be scheduled and Kalissa is off maternity leave starting in January.
In the meantime…
-Their dog has cancer and has to get a cancerous lump removed. She goes to the vet today
-We all feel like we are not giving Kalissa’s other boys, Anders and Carver, as much attention
-Kalissa is sleep deprived
-Christmas is around the corner. We have nothing done.
-We all struggle with “are we babying Gannon too much?” or “are we not tough loving enough”. He is so incredibly needy.
-we encourage Gannon to try food but then he has cough fits…but if we don’t try to encourage him, he’s never going to be able to swallow and we’ll be at this forever.
We never feel like we’re doing the right thing.
Yesterday morning Kalissa called me and I had to go to their house to help her. It was just too much. Later in the morning, Kelli had to go over and help so Kalissa could get out the door and to the doctor. It turns out Gannon has an ear infection on top of everything else.
The poor boy just can’t catch a break.
We’re all on the struggle bus. I’m so impressed with Kalissa…Craig too. They are doing a great job…but it’s a really hard job with few moments that we feel like we really are doing the right thing. It’s all just a lot of muddling along. There is a ton of trial and error in this as it’s new uncharted waters…none of us have done this before.
My heart goes out to parents who deal with these kinds of things on a daily basis. Whew…we had no idea. We are so lucky that we are told this is only temporary…for many, it’s not. We are doing the best we can and learning so much as we go.
We really appreciate any thoughts and prayers you can send our way. We were so naive went we thought all we needed to do was get home and things would be so much better. Yes…it is better but not the better we anticipated.
As always please check Kalissa’s blog for the very latest. You can find that link HERE.
Whoever would’ve thought that such a simple thing as tonsillectomy/adenoidectomy could turn into such a challenging thing for not only the patient but everyone around him. Good grief, I feel so bad for all of you but on the bright side, there are so many of you to chip in and help whenever you can that hopefully that eases the burden even a little. Sure hoping the swallowing/coughing issues along with the ear infection are all resolved soon and life will get back to ‘normal’ or at least some degree of normal.
Your family are in our prayers…
Ya’ll are seasoned Moms. I don’t believe you can make a wrong decision-you’re doing what seems right in the moment. Even your RN daughters are flying by the seat of their Mommy pants! I know it’s hard to be there, and hard to be away (having cared for Mom). I wish I weren’t so far away. I’d do a 10 hour nightshift so that everyone could sleep soundly (friends always said having a RN with their sick kiddos allowed them to relax). Any chance a RN family friend could give 1 night’s reprieve?
I sure hope they get a pump fast. There are a bunch of enteral feeding pumps for sale out there under $100.
Hang in there Joey. Sending cyberhugs and prayers for all of you!
The pump for feeding came today so that is one thing that is going much better. Now we’re trying to figure out something for his ear infection. The meds aren’t cutting that currently. UGH. Day by day!!
My heart breaks for you
Praying for you all. You are doing the best you can! And continued prayers especially for Gannon as he recovers.
I am praying for his healing, wisdom for his doctors, peace and comfort for all of you. That little guy has gone through so much in his young life. It was good to see him smile today. He is a tough little guy.
You can be so thankful for your family, they are amazing and strong. God has truly blessed you.
Prayers, hugs and love to all of you. <3
Such a struggle! Hope things get better soon!
It might be time to reach out to a community group for help. Maybe a Church group. Even though it is not Hospice, they might be able to point you in the right direction. Take care of yourself. Prayers for all
Continued prayers for the families.
I will continue to pray for Gannon and the family. I think you guys are doing the right things. I think you just love on him all that you can. When the professionals get involved and start re-teaching him to swallow, I’m sure they will guide you in the right things to do. It sounds like everyone in your family is doing what they can. It’s a great support system. I appreciate the updates! Hang in there!
Heartbreaking to see such a lovely family going through this. I remember when my niece was having the same trouble getting her five year old son to swallow after a tonsillectomy until she walked in one day to find he had stolen his baby sisters dummy/pacifier and it worked. Hope he is better soon and you can all have a wonderful Christmas. Cheers Ros
Still sending prayers for everyone. I don’t know what you all have tried, but when I’m facing an issue like Gannon’s, it helps me to hear how others have dealt with it. I just used the search bar on Facebook and came up with this link. There were 3 different groups, and this one is the biggest. I hope it helps! https://www.facebook.com/groups/2477650763/
Janelle
How special that you found this Facebook Group!!!
I looked at it (did not sign up) and I expect they will find some ideas or help in knowledge about Gannon’s situation!!
Blessings.
Carolyn
I passed this to Kalissa. THANKS!!
I can’t remember how old Gannon is…sorry. If he’s at an actual public school, contact the school district. Explain what is going on. Some states have teachers/paras (tutors) that could go to the home and help him with his schooling. I would also reach out to your local church about help. Are there any retired medical professionals that could help? Network…post it on FB or other social media in your area. Prayers for Gannon and the family.
Gannon is in preschool. He’s holding his own in class so for now, we’re okay. We’re going to hit it hard after Christmas if he’s still having issues.
Praying for Gannon and all the family. My heart breaks. I can’t imagine what everyone is feeling. Hopefully the therapist will be able to get him to swallow.
Continued prayers for your family and the medical staff treating Gannon. You all are doing your best and your family supports each other so well. Kramer Strong!
Feeling so bad for all of you. Praying that Gannon shows some progress soon. You are all such smart ingenious people, I am confident that you will conquer these challenges.
Continuing prayers for Gannon and your entire family while you go through this. I wish I lived closer so I could be of more help. Please keep us updated, but we understand if you are unable to blog as much as usual.
Remember the people in Whoville. It isn’t the fandoozles that make up Christmas, it is the love that lives in each one of us. The Christmas where things went low key (yes, even for the kids) was one of the best memories from my youth. So you don’t do all the traditional things. Do a few things you love and move on. Our Christmases have never gone back to the hustle and bustle and we don’t miss the pressure. This can be as wonderful a Christmas as any, because you are all together.
Jo, I commented on Kalissa’s post yesterday about a possible fix to Gannon’s swallowing issue. Sometimes there is an issue in the throat after being intubated…my therapist told me yesterday (I talked to her about Gannon) that she had a patient(an adult) with a feeding tube who hadn’t been able to eat at all since he had surgery. She checked out his neck and found a bone that had been twisted..put it into place and he was fixed. This won’t be noticed by doctors…you need to go to a functonal medicine practitioner. All of this is very gentle…I don’t have my note with me at the moment but look up Gillespie procedure…I gave a practitioners name in my other note and more info. I pray you can get Gannon some help without putting him though another surgery. Praying for little Gannon!
We will check this out. Thank you.
Such trials! You all are in my prayers.
Many prayers for Gannon and everybody….. Don’t think I can begin to “imagine” all the problems for all of you– poor Gannon!! Really, how can anybody know what goes through his mind?? I had wondered if he was coping with the saliva , thinking maybe that would go down–but not even that. I hope that there’s help and healing soon for him.
Sending prayers to your family and hugs to sweet Gannon
Jo, imagine all this going on without you…no babysitter, no extra driver, no cook of dinners and desserts. No encouragement for them, assuring them it will be ok.. don’t ever think you’re not doing enough. It’s not your job to solve the problem. It’s your job to do all of the above, and that enables all of them to carry on. Don’t ever think you’re not doing enough. You’re doing exactly what you should be. When my brother was 5 his appendix burst. He missed Christmas and a whole year of school. None of that mattered. You’ll all get thru it. Lean on God, he is there waiting for you.
Oh Jo, I really feel for you all. Poor Gannon, he must wonder what the heck is going on, it must be really scary for him. All you can do is just keep on doing what you’re doing – loving on him and helping him feel safe. My heart goes out to you all xx