Update on nathan

LKN · #1 01-28-2007, 10:20 AM

Our visit started with my husband finally passing his kidney stone--as we were on our way out the door Thursday!

Nathan's eyes: no immediate surgery, but a return visit in 3 months. Surgery will probably happen when he is 5 or 6.

Nathan's airway: "Remarkable" to quote Dr. C. They were so happy with the progress that no dilitation was done. They just observed. It is still small, but there is about a 3.0 opening which is a big deal! They upsized him to a 3.5 pediatric TRACHOE trach! Barf!! We have a call into our dme for some shileys. I hope they can get us some. Other news--Dr. C even let us try a speaking valve with holes drilled in it to see if Nathan could handle the pressures. This is also a big deal. We were told from the beginning that the complexity of Nathan's trachea defect made valve use highly unlikely. The test failed but we expected it to fail. We will go back in 3 months and do an inpatient valve test, and of course, another bronch. All of this is subject to Nathan's little body doing it's "thing" but we are hoping for the best. The trach will still be with us for the next several years, but we are trending in the right direction!!! Yippee!!

The unfortunate and scary part of the visit was the anesthesia experience. In the 10+ times Nathan has been under it's been a piece of cake. He comes out, cries and wants mommy to rock him. This time he had a "psychotic" event. He was hallucinating and thrashing and screaming. He tried climbing over the rocking chair. He only wanted me, and even with me he went berserk. It was terrifying! They were paging all sorts of doctors to come in and deal with him. They finally figured out that he needs fentanyl in the OR and in the post-op area. As the babies grow they can develop very unpleasant side effects to the anesthesia. Good to know!! So, my advice: ask for fentanyl...and lots of it!

Thanks for "listening"

Melisande · #2 01-28-2007, 10:23 AM

Glad to hear it is good news for Nathan. I hate sedation, but at least you'll be prepared next time.

alissafaith's mom · #3 01-28-2007, 11:11 AM

Glad his airway is looking better!
mandi

lovemymak · #4 01-28-2007, 12:41 PM

I am glad to hear that Nathan has some positives from his trip. I'm also happy to hear your husband passed his kidney stone!

Thanks for the info on the Fentanyl. We haven't had any problems with Keturah, other than the fact that she's had so many of those drugs before that they usually have to give her 6 or 7 times the regular dose to knock her out. We go in on Tuesday for a Bronch and it will be interesting to see what happens. What a scary experience! I'm glad it's over though and you guys have some good things to look forward to!

Sarah

Ann · #5 01-28-2007, 01:28 PM

Sounds like a very productive visit for Nathan. At least going back every couple of months gives you something to look forward to. It's always good to get some news - it helps you plan and gives you the hope you need to keep on keeping on. Glad Logan is feeling better too.

JWorthington · #6 01-28-2007, 02:00 PM

Sounds like good news all round!

Well done Nathan

Good idea about the fentanyl. Glad hubby's better too.

xxxJxxx

annettevz · #7 01-28-2007, 02:21 PM

Great news about Nathan! I love hearing the good stuff!

Annette

hcs_mom · #8 01-28-2007, 06:44 PM

Kristy-

It was so good to run into you! I'm glad his visit was positive. Hannah reacts to anesthesia much the same as Nathan...we have been using fentanyl for about 1 1/2years now. She gets some in the OR when they are done and then they write for 2-3 additional doses in PACU. You may need to ask about fentanyl in pre-opm next time when anesthesia comes by for their pre-op "thing". Remind them of the wild man syndrome and that the fentanyl worked well and you would prefer that he gets it. They are usually willing to comply with your wishes.

Let me know when your next visit is...maybe we could sneak in a zoo trip or something fun!

Jennie

willsmom · #9 01-29-2007, 08:02 AM

Sorry we didn't get to meet this trip. I think both of our little men were keeping us busy. Will does the same thing, they called it emergence delirium. Last MLB he got so wild he busted his own lip horribly. It was so not fun. But it sounds like you got good news out of it, so hopefully more good news in 3 months.

Alex's mom · #10 01-29-2007, 08:28 AM

Glad you received good news! Congrats!