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I did get some good news today. They want LO to get tubes asap and the ENT at the surgery hospital is willing to put them in during the cleft repair surgery based on recommendations from our doctors here at home. She's also going to coordinate everything so we don't have to do any extra travel & we can just take care of all paperwork etc on surgery day.
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@jhd: awesome! When's the surgery?
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@Mrs. Tiger: Second week of January.
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@jhd: Yay! That's a win!! And being able to save more anesthesia is a really good thing. Do you have to travel very far to get the surgery done?
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@Mrs. Twine: It is 3.5 hours away. The same surgeon who did his jaw surgeries & we like him. There's an awesome Ronald McDonald House that has become a second home!
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@jhd: That's wonderful. I'm sure it's nice to already be familiar with the place and have positive feelings about the doctors and specialists who will be involved. I hope it goes perfectly.
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@jhd: that's great! Please remind us when it's coming up so we can throw some good vibes your way. I like the surgeon who did D's gtube, intestinal takedown & reconnection too, he seems like such a sweet man and I feel at piece knowing he's caring for D (or in reality, overseeing a resident). I hope it's the same Zen feeling for your surgeon!
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Did everyone have healthy and happy holidays? I sure hope so!!
My husband was able to take some time off work and we really enjoyed our time together as a little family and with extended family and friends.We are traveling today. Pre-op appointments are tomorrow and surgery is Tuesday. I'm anxious, but at the same time ready to get it all behind us.
I hope everyone is doing well!
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@jhd: I'll keep your LO in my prayers--and you and DH!
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@jhd: fingers crossed for you guys! Hope it goes seamlessly. Will he have to be admitted afterwards?
We're doing good, no complaints. We a GI appt on Wednesday, the first since I got my butt handed to me for not following their directions and him not gaining, I hope it goes well! D also finally saw a pulmonary doc who has him on two different nebulizer meds (pulmocort and atrovan) to try to get rid of that congested sound. So far the jury's still out, but it's been less than a week...
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@Applesandbananas: thanks!
@Mrs. Tiger: thank you! Yes he will most likely have two nights in the hospital after. I hope the GI appt goes well this week!!
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We are here and settled in at the Ronald McDonald house. I seriously don't know what we would do without this place. Pre-op stuff took forever but went well and surgery is scheduled for bright and early tomorrow morning.
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@jhd: I missed this thread until now - I hope everything is going well for you guys! Keeping you and your LO in my thoughts today that surgery is going well.
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@spaniellove: thank you!
Surgery was long and he's stuck in recovery until they find an available room and we can only see him one at a time. It's been one crazy thing after another today! But surgery itself went very well. -
@jhd: so glad the surgery went well! I've heard good things about the McDonald houses, I'm glad it's a comfort to you guys. It sucks you could only see him one at a time! Was it because he was still in the recovery area?
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@Mrs. Tiger: yes they didn't have any peds rooms available so he was in recovery for about 3 hours.
his nurses are great and the surgeon has been by to check on him but he's in a lot of pain. hoping tomorrow goes better! And good luck to you for that GI appt tomorrow!
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@jhd: How is he doing today?
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@spaniellove: he's had a really rough day completely refusing to eat BUT one of our SLP friends from the NICU days completely saved the day. She had some great tricks to get him eating. So here's hoping the good eating continues. Thanks for checking in on us!
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We are just waiting on discharge paperwork!
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@jhd: so glad you guys are going home! Home is always the most comfortable
When do you have to trek back for follow ups?
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@Mrs. Tiger: first follow up is in two weeks. Yay for home!
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@jhd: Hooray for being discharged!
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we made it home! a few drama filled moments when we realized they didn't give us our prescriptions at discharge...that took about 10 phone calls and lots of stress to resolve. eating is a real challenge and he just won't take a bottle. it probably hurts too much. so we are feeding with spoons, cups, and whatever works. we had several good feedings today and a few wet diapers so we will call that a victory and hope for another good day tomorrow!
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@Mrs Green Grass: you have mentioned before that you added extra calories to your LO's formula. How did you do that? We may not need to do this but I just worry and want to know what all my options are!
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@jhd: yay for home! Ugh I remember those panic moments as you transition back to home... Hope you have a pharmacy that delivers, that's been crucial for us! Have you tried straw cups? D skipped bottles totally but got the hang of a straw pretty quick.
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@Mrs. Tiger: he's not allowed to use a straw until his mouth heals some. Hopefully once he gets better he will be able to learn to use one though. I'm not sure if he will ever want his bottle again.
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@Mrs. Tiger: and wow I forget I live in a small town until I hear about pharmacies that deliver...we don't have much delivery around here besides pizza lol but my parents are close and they deliver!
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@jhd: just saw this. How's it going?
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@lizzywiz: so much better!! thanks for asking! He has his 9 month well visit tomorrow and a follow up with the surgeon on Thurs so they will be able to tell more but I think he's healing well. He still can't handle eating from a bottle so I'm feeding him everything from a spoon, but hey whatever works!!
How is your LO doing?
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@jhd: yay for the good recovery! You sound so upbeat- I hope you keep feeling the good vibes
Here is to a stellar follow-up!We are doing ok. Still lots of respiratory illnesses but in my perception they are less severe than what we have gone through in the past. She also had a bout with strep that complicated things because it made her tonsils balloon to roughly the size of the Goodyear blimp, which further restricted her breathing, but we didn't have to go inpatient, which was great!
My struggles right now are 1) still missing SO much work. 3-4 days a month minimum. Ugh. 2) She has been on steroids, antibiotics, etc. most of the last 3 months- looking forward to a time when she won't be so medicated. -
@lizzywiz: That sounds so tough. I hope for some very uneventful weeks ahead for you!
I'm feeling pretty positive. Recovery was a lot tougher than we expected but he's really doing well this week. Our pediatrician was super happy with his progress this am which makes me feel good. And no weight loss so I am really proud of that!
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@jhd: you should be proud. Seriously. You made it happen spoonful by spoonful!
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@jhd: yay! one spoon at a time... no weight loss is awesome! pat yourself on the back
@lizzywiz: glad they are getting less severe. sorry you're missing work, I know it's tough. I'm part time (ever since I came back from maternity leave with D) and can tell I'm getting mommy-tracked, but what can I do. D also will be on a ton of meds forever - ugh! Poor little guys/girls.
I'm still riding the "D is walking in a normal frametime" high. I am concerned that he's duckfooted (sorry, can't remember the technical tern!) on one side (which we've noticed since he started cruising at 11ish months) and am hopeful it's just a new walker thing and that he won't need corrective shoes (or worst case, surgery).
his nurses are great and the surgeon has been by to check on him but he's in a lot of pain. hoping tomorrow goes better! And good luck to you for that GI appt tomorrow!
How is your LO doing?
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