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Chronic roll call!

  1. Ms. RV

    pear / 1930 posts

    @ValentineMommy: Our your sons showing any symptoms? You will be in my thoughts!

    @jhd: The new hospital (we are scheduled for transfer tomorrow) is less than a mile closer to home, but still closer! I am going to be losing my three free meals per day, which is probably good for losing my pregnancy weight

    Failed the second swallow study, now on the schedule for a g-tube.. but they won't do it until 5 weeks after his heart surgery. I really wonder if the ng-tube is impairing him. He does great for about 2mL, then he starts to hold the liquid before he swallows. He ends up needing to breathe and then aspirates. The endoscopy showed his esophagus was irritated from the ng.. maybe once it is out he won't be hesitant to swallow.

    EEG was clean. It turns out what the OT thought was a seizure was typical newborn behavior. I haven't seen her since. She must be really embarrassed.

  2. jhd

    coconut / 8078 posts

    @ValentineMommy: thinking of you. I think I shared we are looking at the same diagnosis for both of our boys. If I can be of any support please reach out.

  3. jhd

    coconut / 8078 posts

    @Ms. RV: I hope the transfer goes smoothly tomorrow!. And I’m so glad that eeg was normal. Will they allow him to continue to work with liquids of any kind? My older son needed his milk thickened but then did well

  4. jhd

    coconut / 8078 posts

    @ValentineMommy: thinking of you! I hope the appointment went ok today.

    @Ms. RV: thinking of you too! Did the transfer go ok? Were you able to travel with your son?

  5. Ms. RV

    pear / 1930 posts

    @jhd: The transfer went well! I could have travelled with him, but the new hospital is only 3 or 4 traffic lights down the road so I just road in my car. We are not allowed to work on any liquids until his stridor/breathing get better. Thank goodness daycare is on board for using his g-tube.

  6. ValentineMommy

    pomelo / 5791 posts

    @Ms. RV: DS1 doesn't have any symptoms, other than the facial features....but then again, he looks just like me (and I have it). DS2 does have some of the features, and I would not be surprised if he also has it. Good luck with the g-tube, and keep us updated!! So glad the transfer went well!

    @jhd: Thank you! The blood draw for the boys went better than expected (DS2 didn't even know it was happening). Now we are in the dreaded months long wait for the results. They take so darn long! After that, I'll be scheduling an appointment for me and whichever kids are diagnosed to go to the Stickler clinic in Boston and hopefully get more information.

  7. jhd

    coconut / 8078 posts

    @ValentineMommy: the waiting is so hard. But I’m glad the blood draw went well.

  8. jhd

    coconut / 8078 posts

    @Ms. RV: so glad it went well! I hope you get settled into the new hospital and things continue to go well!

  9. Ms. RV

    pear / 1930 posts

    @ValentineMommy: Months to find out? That is horrible! Why does it take so long?

  10. ValentineMommy

    pomelo / 5791 posts

    @jhd: Thank you!!

    @Ms. RV: Right? It's crazy. Apparently most genetic testing takes a long time, especially the more "rare" things. The doctor told me that they wait until they have a bunch of different peoples samples looking for the same thing before they run the tests, so the sample can just sit there for a few weeks until they have enough to run the test.

  11. Ms. RV

    pear / 1930 posts

    @ValentineMommy: That makes sense. It stinks though!

  12. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @ValentineMommy: so sorry to hear this, and about the long wait! Hope you get the info and resources you need soon.

    @Ms. RV: Ah, swallow studies. You may not be off base in suspecting the NG isnt helping, we had nurses tell us that as well. Getting a g tube was the best possible thing we could do for D, i have no regrets. Please let me know if I can answer any questions! He got it placed at 6 weeks old.

    @jhd: How's little guy doing?

    Doing alright over here, D switched to inhaler (+ chamber thing) from nebulizer and its so much easier to fit it in the day!

  13. Mrs. Smoothie

    blogger / cherry / 174 posts

    @Ms. RV: Just checking in on the board and glad to hear the recovery is going well. Feeding is so tricky. I remember our little guy just didn't have any energy to eat post surgery for a few weeks because he was trying to heal. After a few weeks, he wasn't lethargic anymore and his feeding improved. Although, I wish I had pushed for a feeding therapist earlier. Sounds like you are dialed into the help and services you guys need.

  14. Ms. RV

    pear / 1930 posts

    @Mrs. Tiger: I am actually excited about the g tube because that means he will be able to come home. And thank goodness daycare is willing to work with it. Silly question.. I am guess t-shirts plus pants are better than onesies so there is easier access?

  15. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms. RV: well, you actually dont want easy access, since you dont want other kids/him to mess with it! How often will he be getting feeds? You can just leave the extension on and string it out the leg of his onesie/pants.

  16. jhd

    coconut / 8078 posts

    @Mrs. Tiger: he’s doing great! Thanks! Getting things moving with early intervention and he has a few big appointments in July but he’s eating and sleeping so well and just the happiest baby!

  17. Ms. RV

    pear / 1930 posts

    @Mrs. Tiger: Oooh.. such a good point! Even at three weeks old we have to worry about him pulling out his ng because his hands just go everywhere. I am guessing he will be getting eight feeds per day because that is what he gets through the ng now. That might be increasing though because he is not being satiated currently but they can't up his volume because too much fluid will stress his heart.

  18. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms. RV: Then I would definitely put him in a onesie and stick the extension out the leg. You can take off the extension whenever there will be a long break between feeds (ie at night) to further lessen the chances of anything pulling out.

    You can see in this first pic (http://www.hellobee.com/2015/07/02/how-to-change-a-g-tube-pack-an-emergency-swap-kit/) how I would recommend taping the extension to give you some slack in case it gets pulled. Try to experiment with different tapes to find the kind that irritates his skin the least and then ask for that one from your supply company

    Also all this stuff (http://www.hellobee.com/2015/01/22/12-must-haves-for-babies-and-toddlers-with-feeding-tubes/) still applies although these days I also use parafilm (https://www.amazon.com/Parafilm-Roll-250-Length-Width/dp/B005KDF3X6) in replace of the cloth line covers (to secure the extension to bag) overnight since D can unbutton the other cover! It's like scientific grade saran wrap, but super strong and cheap.

    @jhd: awesome, that's so good to hear!

  19. hellobeeboston

    honeydew / 7235 posts

    @TemperanceBrennan: Did you daughter ever get the celiac diagnosis?? just curious! I have it, was diagnosed about 15 years ago, my sister has had it for about 18 years....

  20. anonysquire

    cantaloupe / 6910 posts

    I haven’t checked in for a while here! So originally I had just one chronic child, my baby who has dwarfism. But now we’ve added a couple of other diagnoses with him: central sleep apnea, failure to thrive and aspiration. He’s headed for a feeding tube which we knew but still feels sucky. Right now he’s in feeding therapy after his failed swallow study. He’s had pneumonia 5 times this year and I just want him to feel better.

    And then in December, my 3yr old decided to stop eating. He’s had chronic bowel issues since birth but has been able to maintain his 15-20th percentile pretty well. But then in December when he stopped eating he fell right off the chart to below zero. He’s lost 7lbs since then. He’s now had a NG tube for a month and hasn’t gained weight. We go in tomorrow to get his surgery date for the gtube. He’s 3.5 and 19lbs and has no energy. And the little bit he does eat it goes straight thru him. There’s def some malabsorption issues going on with him. And this isn’t typical toddler tantrum, refusal to eat. This is refuses to eat for 7 days. Not even a bite or sip.

    Anyways, life feels a little hard today. But I’m sure tomorrow will be easier

  21. jhd

    coconut / 8078 posts

    @anonysquire: gosh you are dealing with a lot. I’m so sorry. I hope you can get the help you need for your sweet boys!

  22. Ms. RV

    pear / 1930 posts

    @anonysquire: How are you feeling? I can't imagine how stressful it must be having two LOs that are so sick DS had an NG tube placed at 10 days old and then a G tube placed about three weeks ago (he is almost 10 weeks). Does your DS have overnight feedings? Are they continuous? I realize our LOs are vastly different ages but I feel like DS was gaining weight a lot better with only bolus feedings. It seems like his overnight feed goes straight through him.

  23. luckygirl

    grape / 75 posts

    @anonysquire: that all sounds very hard. I hope that your boys start improving and that you are able to find support to help you through this. Please keep us updated!

  24. anonysquire

    cantaloupe / 6910 posts

    Hey ladies! My 3.5 year old ended up getting his gtube 2 months ago and it’s pretty good so far. There hasn’t been any weight gain, but no giant losses so it’s ok for the moment? I don’t know haha!!

    My 20m old goes in this week for his gtube surgery. Where my 3.5 has an eating disorder, my 20m old is a champion eater. But he aspirates when he drinks and he’s had pneumonia 7-8 times this year and his lungs are in awful shape. Just thinking happy thoughts over here before I have a mental breakdown! But this too shall pass! How is everyone doing?

  25. Ms. RV

    pear / 1930 posts

    G is doing amazing! Since I last posted he has graduated to seeing cardiology every six months! We went to ENT today and found out his vocal cord is no longer paralyzed (but is sluggish). It is meeting the right one it just slower. He will be getting a swallow study in three weeks. He has a cold now or else he would have had it done today. He has doubled his discharge weight and is no longer failure to thrive.

    We did hit a new complication. It turns out he likely has nerve damage from his forceps delivery. His right pupil is smaller than the left and the eyelid is a little droopy but thankfully his vision seems normal.

  26. luckygirl

    grape / 75 posts

    @anonysquire: So now both of your boys have gtubes? How did the surgery go for your 20 month old?

    @Ms. RV: Glad to hear that G is doing great overall. Do the doctors have any idea if the nerve damage will impact anything beyond his eye?

    Not much new to report on our end. My LO had a good summer. He had a foot injury at one point and still complains about his feet hurting at times - which his doctors said is common with his orthopedic condition. Now as the weather gets cooler his legs tend to start to hurt more, making it harder for him to walk (and causing him pain), so we will be starting up aqua therapy again, and using the NSAID medicine more.

  27. anonysquire

    cantaloupe / 6910 posts

    @luckygirl: yes the older is because he won’t eat, and the younger is because he aspirates. Never expected this life haha. Anyways surgery was good, he came home and then went back to the ER 5 hrs later with pneumonia. He’s still pretty miserable with the pain and has no energy to move now that we’re home, but hopefully he will heal quickly!

  28. anonysquire

    cantaloupe / 6910 posts

    @luckygirl: aww poor guy!! That’s awful that he’s having so much pain!

  29. luckygirl

    grape / 75 posts

    @anonysquire: Glad to hear the surgery for your younger son went well. That is awful about him getting pneumonia right after though! It sounded like he's had it a lot this year? Is the gtube supposed to help with his lungs and getting pneumonia since he won't be aspirating into them? Or is there anything else the doctors can do that can help him avoid getting so sick?

    We haven't been able to get to the hot therapy pool this week, which usually helps. So yesterday after he was limping after school, I let my son eat snacks in the tub and listen to an audiobook, and he stayed in there for well over an hour! We'll see if hot water in the bath for an extended time can help a little.

  30. Ms. RV

    pear / 1930 posts

    G had a follow up today with feeding/swallowing (which consisted of five people watching him eat and take a bottle) and he officially graduated and does not need to go back. Then we went to ENT and they said the same thing. Provided wait gain stays good and there are no serious respiratory infections, we will be getting the g-tube out in March!

    That will make cardiology his only specialist.

    @Mrs. Tiger: G's button fell out last weekend. (It had developed a bad leak). Thanks to your blogs I more or less kept my cool.

  31. tiramisu

    apricot / 409 posts

    @Ms. RV: Yay!! That's great news!

  32. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms. RV: ugh sorry to hear that! The first time is always the worst. Were you able to replace it yourself?

    So happy to hear about his progress! Fingers crossed for us D's G tube will stop being used in February.. and if that goes well will be removed a few months later

  33. Ms. RV

    pear / 1930 posts

    @Mrs. Tiger: Yes! It came out while OH was cleaning around it on the changing table. He said completely nonchalantly "hey, it came out". I immediately ran downstairs for the spare and DD started screaming because formula started to pour out of the stoma. The four of us were all fairly traumatized

    That is great news about D!!! Do you know how long you'll have to wait before it is removed? Is it going to be as simple as taking it out and letting it close or will it be more involved?

  34. jhd

    coconut / 8078 posts

    @Ms. RV: that is wonderful news!!!!

    @Mrs. Tiger: Go D! So exciting!

    Our boys are doing really well. T has made HUGE progress in speech this year which makes me hopeful that although people have brought up the idea of a second palate repair surgery maybe we won’t need it. I’m terrified of going through that again with him! G is growing and eating so well. He’s much more excited about eating than T ever was, which makes me hopeful that we won’t struggle as much with eating after his palate repair. The only thing we are struggling with at the moment is keeping glasses on a baby. He just wants to eat them! ;).

  35. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms. RV: lol it gets easier, I promise! Re: D, I have no idea, they tend to not talk about the future. I would assume they will wait at least 3 months before removing and that he may need a stitch or two, given he'll have had it for over 5 years. He is anxious to get it removed which is helpful for getting him to eat enough!

    @jhd: so glad to hear! Eat baby eat!

  36. Ms. RV

    pear / 1930 posts

    @jhd: That is awesome news!!!

    @Mrs. Tiger: Any tips on getting an almost seven month old to not pull on his button? He used to leave it alone as long as he had a onesie on but lately I swear it is his favorite "toy".

  37. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms. RV: how is he messing with it through the onesie? Could you go down a size in onesie so it's snugger? I tried wrapping his tummy with that colorful wrap stuff they use after blood draws but it scrunches up, would not recommend. I never used the belts but it may be worth pursuing:


  38. Ms. RV

    pear / 1930 posts

    @Mrs. Tiger: Fabric is his favorite toy right now. He loves feeling the texture. So he feels a bump in his onesie and just keeps fiddling with it. We tried smaller onesies and wrapping it with sticky ace bandages and he only grabs at the button more. He seriously puts his hand on it and yanks If he wears a hoodie or a button down over his onesie he doesn't seem to yank so much, but daycare is so warm he will just get overheated if we dress him like that every day.

  39. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms. RV: woof that's a tough one! I would prob just check his balloon daily to be sure its inflated enough and carry a change kit around everywhere, hopefully he learns its uncomfy to pull out a fully inflated tube

  40. lilyofthewest

    pear / 1697 posts

    Hey chronic mamas. I know some of you have seen from other threads that I have a new baby who has been in the NICU for 6 weeks. We don't know whether we will ultimately be taking home a kid who is generally healthy and relatively typically developing or a kid with mild, moderate, or severe chronic challenges.

    Right now he's got low passive tone and feeding difficulties. There's no consensus about whether it is due to a congenital neuro problem, a hypoxic injury, a genetic problem, or lingering recoverable or largely reversible effects of prematurity and a week of critical illness with severe respiratory distress.

    We expect to have answers about some of the differentials within the week; others may not be apparent for weeks, months, or years. Did any of you experience similar periods of limbo? I feel paralyzed about how to plan for his future (and my future!). Was there anything that helped?

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