Kellsey's appointment with the pulmonologist went well today. I really liked him. He seemed very thorough! We talked about everything that is going on with Kellsey, he got a complete history on her (well, as complete as I could give him anyway... we don't have too much knowledge about what happened her first 3 years of life.) Her O2 sats were only at 94 today, which, with a heart defect this could be ok, but they do have readings of her up as high as 97 so I'm not sure why she was so low today. The nurse tried several times on both hands and feet. She said they usually like to see it at least 95, but it just was not going to happen!
Anyway, as far as her sleep issues go, he ordered a repeat sleep study for the end of March or beginning of April. He said that even though she was only showing central sleep apnea before, that sometimes in kids with Ds after they remove the tonsils and adenoids they can develop some obstructive sleep apnea... who knew?! So he wants to double check and make sure he knows what we're dealing with before we move forward. A follow up sleep study after a T&A is standard procedure anyway. Then he said most likely she would be started on a C-Pap machine, which is kind of what I thought would happen. We'll see what Kellsey thinks about that!
C-Pap Mask... think Kellsey will wear this every night?!
(Pic taken from a sleep apnea website)
As for her cough, he couldn't get a good listen to her lungs because she was taking such shallow breaths, but he ordered her a chest x-ray and agreed with her ENT that the coughing could very well be due to aspiration. He put her on a course of Augmentin for aspiration and also started her on an Albuterol inhaler 4 times a day for the next 2 weeks. I'm supposed to let him know how she's doing in a few days... he's hoping that her cough will improve. If it does, he's going to start her on a maintenance inhaler. The x-ray came back showing no pneumonia, thank goodness, but it does show signs of asthma, so I guess we'll have to discuss that later. I just found that out via a phone call from his nurse a little while ago. Her doctor mentioned that as a possibility, but it was just a passing, "Or it could be this" type thing and we never talked about what to do if it IS that. We went over a ton of info in a short period of time today!
Inhaler she is on for the next couple weeks...
(Pic from the albuterol website)
SO next is her swallow study on the 21st which will tell us if she's still aspirating. If she IS then her pulmonologist and her ENT will team up and do a bronchioscope where they will put a little camera down her throat and make sure that everything is ok in there anatomically. If it's NOT then they will address how to fix that. He said there were a few things it could maybe be... none of which I remember nor am I going to worry about just yet. Why worry until there's a reason?! He also said there's a chance she may need a G-tube which would go into her stomach and she would receive all her liquids that way... which I was kind of expecting him to say.
G-Tube diagram
(Pic taken from a medical website)
SO all that to say, we are going to sit here and wait. Wait to see if the inhaler helps her, wait for the sleep study, wait for the swallow study, wait, wait, wait. Good thing I'm patient. Not. ;)
On that note, my ear is killing me for some weird reason, so I am going to go lie down and let my hubby take care of me! Hope you all have a good night!
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5 comments:
Syd has the G-tube...I can recommend a good doc out here for that! LOL
That inhaler looks real familiar!Albuterol works wonders. Mom and Dad learned I had asthma when I was younger than Kellsey, so we're all asthma experts in my family! I can't remember if you've had to deal with that sort of medical issue yet, so let me know if you have any "personal experience" questions!
Oh no! Hope the waiting game goes well...I have never have liked that game! I can't imagine trying to get a 3/4 yr old to wear that thing at night! Praying for things to be ok (or as ok as they can be).
Glad Frank is home with you for all of this new stuff ;). Kaitlyn uses an inhaler like that. Are they going to do any allergy testing on her too? We had allergy testing done first. Kaitlyn's action plan is she takes Singulair every night before bed and then her albuterol before physical activity. If she gets a cold then she takes it more often. It has really helped her. Of course I don't know what they'll recommend for Kellsey given her heart issues and everything else, but we had to choose between the Singulair and a steroid for Kaitlyn. I think the doctor wanted the steroid, but Kaitlyn has mild asthma and I truly believe it's caused by her allergies anyways so the singulair made the most sense to me. If it didn't work we would have gone to the steroid, but I didn't really want her on something like that long term. So just a little extra knowledge for you when you deal with the whole asthma thing ;). Hoping it's as simple for her as just needing the asthma treatment though and you don't have to do that tube thing. Oh, and my mom wears the sleep apnea mask to bed. She says that has really helped her a lot, but I think the thing drives my dad crazy, lol. Good luck with all of your upcoming appointments. Sounds like you had a lot to process.
We are just starting up on the sleep machine. We are about a month into it....NO FUN!!! Avery will put it on and leave it on but then when she falls asleep she is still such a wild sleeper that it comes right off and you have to keep waking her up to keep putting the mask on and finally by the time i go to bed i pretty much just end up taking it off bc this mama has to get some sleep too...the dr said that we will go back and do a another repeat sleep study and try to increase it bc right now its not fixing it her sleep apnea 100% only 30% with the machine at a 4. She has obstructive and central sleep apnea..I pray that everything turns out so you dont have to go through it!!!
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