Gideon’s World: Days 51-86

Hello World!

It has been a crazy month or so! We hope your new year has been going well.

Gideon has started out the year with a serious focus on his feeding issues. He was declared failure to thrive in early January and went to the hospital to receive nutrition through a NG tube (nasogastric). While he was in the hospital for that visit, we found that delayed gastric emptying was the likely culprit for his loss of appetite. Sadly, as his appetite waned, he became weaker from lack of nutrition, and his feeding ability by mouth waned. He can still eat by mouth, but it takes him too long to finish the feed which means that he ends up using more energy than he receives from the bottle feeds. At first, Gideon had trouble keeping the NG feeds down. This is how we realized he had issue with delayed gastric emptying (AKA gastroparesis). Yet, even after taking care of that issue with medication, Gideon still could not keep his feeds down. After a little experimentation, we found that he also has acid reflux. We did not know this before, because a common treatment for dealing with reflux is thickening liquids. If you recall, when Gideon ate from bottles, it was only level 4 thickened liquids. So, we would not have known he was dealing with this issue at that time. Also, it is likely that his stomach shrunk from eating less over time. Over time, his stomach will return to a normal size.

I was educated on how to give Gideon his feeds through the NG tube and then we were sent home for about a week. We brought RSV home from the hospital and it was fun for the whole family! Just kidding, of course. Gideon was sent home to increase his nutrition in anticipation of a g-tube (gastrostomy) surgery. As shown on the doll, the surgery places that button for Gideon to receive feeds directly into his stomach. In the first picture in the post, you can see the tubing for his g-tube. While waiting for his surgery, I ordered some helpful g-tube supplies that, in my opinion, all parents should have: g-tube belts, g-tube pads, and a tummy time belt. I did lots of research on Amazon and Etsy. I ended up choosing 3 different stores to purchase from. Also, not too long before the hospital visit, we found another must-have for Gideon—an amazing medical alert bracelet. I happened upon Alert Me Bands during an awesome sale they were promoting on Facebook. I absolutely LOVE their bands and HAD to share with you all. I have provided links and pictures for you to review if you are in need of any of these items. They are all well-made and highly recommended. The first 2 pictures below are from the Lil Bayou Boutique, the third picture is from KangaRoo-tique, the fourth and fifth pictures are from That’s Sew Paisley (She uses BAMBOO! I absolutely love this material for breast pads, g-tube supplies, and so much more!), and the final picture is some of the MANY options available from Alert Me Bands. Gideon’s bands turned out beautifully and they are durable.

Now, Gideon has been home from the g-tube surgery for almost a week and he is doing well. So far, we have only used the g-tube belts, because the doctors said we should wait on the rest until the surgical site is completely healed. Everything that we have received from the 3 g-tube supplies shops have done well in the wash on gentle cycle and dried flat on a towel. I find that the belts need adjustment every so often when Gideon wiggles around a great deal. I do not find this to be the fault of the belts themselves. Rather, it seems to be a result of the way in which Gideon uses his body to move around. It’s no big deal and it the belts have definitely kept curious hands away from the button and tubing. The only real problem is when Gideon tries to go too far away from the g-tube machine and its pole.

https://www.etsy.com/shop/LilBayouBoutique
https://www.etsy.com/shop/KangaRootique
https://www.etsy.com/shop/ThatsSewPaisley
https://www.alertmebands.com/

The RSV plague sent our youngest to the hospital on the same evening that Gideon returned home from his gastrostomy surgery. Thankfully, everyone is almost clear of the bug. Gideon has some changes in his life now going forward. Any food by mouth will be for training on the spoon, the Nosey Cup, or using other devices or for pleasure at this time. There’s no longer any fight to take meds or eat. So, in that sense, things are less stressful. He has slowed down on his PT and OT, as some are not safe while he is healing from his surgery. You will notice that the notes are not as involved right now and follow the flow of where we are at in Gideon’s daily life. We hope to titrate him up on CBD and THC in the near future, though it will probably wait until the healing is complete (after a total of 6 weeks). Gideon does not need Miralax anymore, because of his feeds being liquid. This may change when and if his diet changes later. Much of our initial focus will be on creating a plan for feeding therapy, changes to his feeds, and watching his weight. His g-tube feeds are continuous right now (meaning he is supplied formula or Pedialyte 22 hours of the day), but we hope to change over to bolus feeds in the next month or so. Bolus feeds are more like ours—he eats a given amount over a given meal time period. This will give him more freedom in mobility, because there will be less time that he is required to be hooked up to his machine. His movement (as far as moving around the floor and playing on the floor) is very limited due to his continuous feeds.

We hope you have a wonderful Valentine’s Day and that your new year is off to an amazing start!

Thank you for reading!

 

NOTES:

Day 51 (2nd): 1st meds and 1st dose of MJ by 9:30. Leggies, weights, and stretches done by 12:23. Leggies and weights off by 2:16. 2nd dose of MJ by 3:33. Leggies and weights back on by 5:53. Spat meds this morning. Not really up to much exercise. Had 2nd meds. Leggies and weights off by 8:39. Had 3rd dose of MJ. Gideon ate 1 2/3 bottles and around 4 oz. of KF.

Day 52 (3rd): 1st meds and 1st dose of MJ by 9:52. Leggies, weights, and stretches done by 12:36. Leggies and weights off by 3:36. 2nd dose of MJ by 3:56. Leggies and weights back on by 7:08. Leggies and weights back off around 9:06. Had 2nd meds and 3rd dose of MJ. Gideon ate 2 bottles and 5.5 oz. of KF.

Day 53 (4th): 1st meds and 1st dose of MJ done by 10. Gideon had a breakthrough seizure. Leggies, weights, and stretches done by 12:09. Leggies and weights off by 2:30-ish. 2nd dose of MJ by 4:35. Leggies and weights back on by 7:48. 2nd meds done. Leggies and weights off by 9:07. Had 3rd dose of MJ. Gideon ate 2.5 bottles and 6.5 oz. of KF.

Day 54 (5th): 1st meds and 1st dose of MJ by 9:47. Leggies, weights, and stretches done by 12:15. Leggies and weights off by 1:27. Had 2nd meds, but not 2nd dose of MJ. Did have 3rd dose of MJ. Gideon ate 2 bottles and 6.5 oz of KF.

Day 55 (6th): 1st meds and 1st dose of MJ done by 9:53. Leggies, weights, and stretches done by 12:13-ish. He was active for a few reps with his right bicep curls. Leggies and weights off by 3:57. 2nd dose of MJ by 3:56. Gideon had another breakthrough seizure. He did spit out some meds today and for the last few days. I’m just hoping he’s not getting ill, but his appetite has lapsed, too. Had 2nd meds. Had 3rd dose of MJ. Gideon ate almost 2 bottles and over 4.5 oz. of KF.

Day 56 (7th): 1st meds and 1st dose of MJ by 8:25. Leggies, weights, and stretches done by 10:15. Leggies and weights off by 1:15. Went to the GI dr. Gideon is officially failure to thrive. We will be staying in the hospital ASAP. THIS is likely the cause of the breakthrough seizures and so much more. Talk about feeling like you can’t help enough. Had 2 seizures on the way home. Had a 3rd seizure at home. Missed 2nd dose of MJ. Had 3rd dose of MJ and 2nd meds. Gideon helped brush his teeth quite a bit. Had a 4th seizure. Had a 5th long seizure. Had 6th. Given extra dose of Keppra per doc. Gideon ate 2 bottles and 4 oz.

Day 57 (8th): 1st meds and 1st dose of MJ by 10:18. Leggies, weights, and stretches done by 12:08. Leggies and weights off by 3:04. 2nd dose of MJ by 4:20. He had 2nd meds and 3rd dose of MJ. Gideon had a seizure. May have had a second right after. Gave 0.5 mL more of Keppra (per many docs, I can give a full dose extra during seizure clusters). I did not give him a full extra dose because he had just taken his second dose not too long ago and this would bring him up to the proposed dose that the doc needs to “ok”. He had suggested an increase to 2.8 mL, but I have nothing that measures that way. So, I asked him about 3 mL, but I won’t hear back until tomorrow. Had 3rd seizure. Had up to 4 more (some didn’t seem like full seizures) to total 7. Gave rest of extra dose, 2 mL. Gideon ate 3 bottles and 8 oz. of KF!

Day 58 (9th): 1st meds and 1st dose of MJ around 9:45. Spat out some meds. Leggies, weights, and stretches done by 12:04. Had seizure around 3:10-ish. Had 2nd one around 3:35. Had 3rd around 3:39. Had 2nd dose of MJ by 3:46. Neuro just raised his dose of Keppra to 300 mg twice daily. Had 2nd meds at new dosage. Assisted with brushing his teeth tonight. He had more control. Had 3rd dose of MJ. Hand 4th around 11:10 and 5th around 11:11. He had a 6th seizure around 11:13. Had 7th seizure around 11:56. Gave extra dose of Keppra at new dosage. 12:07, another seizure. Gideon ate 1 1/3 and almost 4 oz. of KF.

Day 59 (10th): 1st meds and 1st dose of MJ by 8:55. Leggies, weights, and stretches done by 11:58. Leggies and weights off at 1:21. 2nd dose of MJ by 2:57. Leggies and weights back on by 6:22. Leggies and weights back off by 9:10. Had 2nd meds and 3rd dose of MJ. Gideon ate 1 2/3 bottles and around 3 oz. of KF. Had seizure at 11:10. 2nd seizure at 11:12. 0

Day 60 (11th): Had seizure at 7. Had 2nd one minutes later. 1st meds and 1st dose of MJ by 9:45. Leggies, weights, and stretches done by 12:15. Didn’t record right away, so I’m guessing that leggies and weights came off around 2-ish. Leggies and weights back on by 7:13. Leggies and weights back off by 9:45. Gideon was stealing pizza and trying to eat it! Did not have 2nd dose of MJ, but he did have 2nd meds and his 3rd dose of MJ. He helped me brush his teeth tonight. Gideon ate 2 ½ bottles and 7.5 oz. of KF.

Day 61 (12th): 1st meds and 1st dose of MJ by 10:18. Leggies, weights, and stretches done by 12:11. Leggies and weights off by 2:20. 2nd dose of MJ by 4:19. Leggies and weights back on by 6:28. Leggies and weights back off by 8:30-ish. Had 2nd meds. Had 3rd dose of MJ. Gideon ate 1.5 bottles and 5.5 oz. of KF.

Day 62 (13th): 1st meds and 1st dose of MJ by 10. Leggies and weights on by 12:13. Gideon was not up to much stretching, though. Missed 2nd dose of MJ. Leggies and weights off around 4:30. Leggies and weights back on by 9:14. Had 2nd meds and 3rd dose of MJ. Leggies and weights off around 10:18. Gideon ate 2 bottles and around 4.25 oz. of KF.

Day 63 (14th): 1 bottle, 2.5 oz. Went to the hospital…

Days 64 (15th) through 72 (23rd): Gideon was in the hospital as failure to thrive. He has an NG tube and some added meds. He has delayed gastric emptying and reflux. He will be going in for surgery for a g-tube on Jan. 31st.

Day 73 (24th): Not keeping track of meds here anymore. Started 1st feed around 9:32. Leggies, weights, and stretches done by 1:28. Leggies and weights off around 2:30. Sick with clear sinus mucus and 101.1 was highest fever reached.

Day 74 (25th): My notes may be strange for a while. The transition to using the new equipment and keeping the schedule for feeds has me a bit off. Most meds done by 8:13. 1st dose of MJ done by 8:14. Started feeds at 9. Had 2nd dose of MJ. Leggies, weights, and stretches done by 5:09. Leggies and weights off by 9-ish. Pedialyte 12:14am. Was still warm, very stuffy, but mucus still clear.

Day 75 (26th): 1st MJ by 8:24. Most meds done by 8:27. Feeds started by 8:58. Leggies and weights on by 9:46. Leggies and weights off around 1-ish. Was still warm, very stuffy, but mucus still clear. Pedialyte at 1-ish.

Day 76 (27th): 1st dose of MJ by 8:04. The rest of the meds were done by 8:00. Started feeds at 9:25. Leggies and weights on by 6:15. Some stretches done. Leggies and weights off by 8:54. Gideon was warm, somewhat stuffy, but mucus mostly clear to white. 1st time using Tylenol since being sick tonight. Pedialyte started at 12:07-ish.

Day 77 (28th): Meds done by 8:13. 1st dose of MJ by 8:17. Started feeds by 8:32. Leggies, weights, and some stretches done by 7:37. Leggies and weights off by 9:55. Pedialyte by 12am.

Day 78 (29th): Meds done by 7:30 (same with 1st dose of MJ). Feeds started by 8:33. Leggies, weights, and some stretches done by 9:50. Leggies and weights off around 2:11. Pedialyte by 11:23.

Day 79 (30th): Meds done by 7:27 (same with 1st dose of MJ). Feeds started by 8:09. Leggies, weights, and stretches done by 10:37. Leggies are sore. Arms are good. Leggies and weights off by 12:39. Pedialyte (only 7 hours of 8 due to surgery restrictions) by 11:30-ish.

Day 80 (31st): Surgery day! He did wonderfully.

Day 81 (1st): In hospital most of the day. Took Zoe to hospital tonight as a result of Gideon bringing it home from his 1st hospital visit (the whole family got sick).

Day 82 (2nd): Meds done by 8. First feed started at 8:05. Some stretches, leggies, and weights done by 11:30. Leggies and weights off by 1:32. Gideon stood up and sat up for me as exercise. I was nervous and he seemed tense, too. It is good for him, though. Leggies and weights back on around 4:40. Leggies and weights back off by 6:10. Pedialyte started by 11:45.

Day 83 (3rd): Meds done by 8 and first feed started at 8. Ibuprofen given by 8:08.

Day 84 (4th): Meds done by 7:46, including ibuprofen. First feed started by 7:55. Leggies, weights, and stretches done by 2:26. Leggies and weights off around 4:22. Leggies and weights back on by 7:45-ish. Leggies and weights off by 9:45.

Day 85 (5th): Meds done by 7:45, including ibuprofen. 1st dose of MJ done by 7:47. First feed started by 7:58. Leggies, weights, and stretches done by 11:45. Leggies and weights off by 2:07. Leggies and weights back on by 5:48. Leggies off by 8:38. Pedialyte by 11.

Day 86 (6th): Meds done by 7:40, including MJ and ibuprofen. 1st feed done by 7:55. Leggies, weights, and stretches done by 11:25. Leggies and weights off by 1:55. Leggies and weights back on by 7. Leggies back off by 9:22. Pedialyte by 11.

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