So Mr. Jaime and I spent the afternoon...literally ALL afternoon at the airway clinic. We saw several doctors, including Pulmonary, GI, Rehab, and ENT...we also saw a nurse practioner and a speech therapist. Having said all of that...here is what we learned....
Pulmonary: Jaime's culture from his bronchoscopy came back positive for 3 different things including a pneumococcal influenza. I can't remember the others, but they aren't treating him for anything specific at this time, as he's already been on antibiotics and steroids. Speaking of...his "steroid weight" today was 24lbs! Woohoo...now if only it would stay that high! We all know it won't, but it was nice to see for once! :) Jaime also has bronchialitis and he has some inspiratory stridors (which basically means he has an addition noise sometimes when he breathes in). He also has some inconsistent wheezing. The bottom line is Jaime has asthma. No biggie, we can handle that. He does have a pretty crappy upper airway, so respiratory infections...or increased secretions will get him in trouble almost every time. He just doesn't have the reserve that "normal" kids have. We did add another inhaler today. We were supposed to get a chest x-ray today, but it was getting late, so we'll be doing it tomorrow.
GI: Jaime is to have 1 to 3 cap-fulls of Miralaxx daily. We are going to keep him on just the Pediasure with fiber and not mix it with high cal boost. We're going back in 3 months for a weight check with her. Jaime is still having lots of issues with solids and constipation. He's great if he doesn't eat, but when he does, even the very minimal amount that he eats (like 2 baby carrots) he gets really constipated. We just need to try to find that fine balance.
Rehab: Today's addition to clinic was a rehab physician. He's there to look at the whole child developmentally. He watched Jaime walk and act in general. You know how I'm always saying that Jaime is a monkey? Well, this dr. stated that there is a direct correlation between hypoxia (lack of O2) and hyperactivity. (GREAT, two little monkeys in my house!) We'll see how all of this pans out in the future, but we definitely have a terrible two year old in our house! This dr. also said that Jaime should be evaluated now by the feeding clinic. This would require seeing 2 more drs. and several more therapists. He said the sooner we start it the better! We'll see! The final thing this dr. did was give me a prescription for medication to help Jaime sleep. I haven't gotten it filled yet...I have mixed feelings about it. This medication is used to treat seizures and is a form of Valium. He said it's safe in the dose that Jaime would be taking and it's non-habit forming, I just don't know if I'm up for drugging my kid like that, but I have it if I change my mind.
ENT: No ear infection! Woohoo! However, the doc did say that if and when he gets one that he will probably bleed from his ears. From what he said it's part of how the gunk fills up in the ear and lots of the gunk is blood and Jaime being a hemophiliac...this will increase the blood. He said that normally when an ear tube pt. has an ear infection the parents just start the ear drops without an appointment, however in Jaime's case, he will need to come in to make sure the bleeding is controlled (which will be done with Factor) and to check that the tubes will still be in place. He said the bleeding could cause the tubes to shift or fall out! NICE...his NP and I were mad that he shared this "minor" detail today instead of on OR day! I would have been horrified if I saw blood pouring out of his ear! WOW! Having said all of that...his right tube looks great, his left one is blocked with wax! ARGH! He's been rubbing that ear, too, I bet it feels funny.
We were supposed to have another hearing test today, but as with the chest x-ray it was getting late, so we're going to try to do it tomorrow, if not tomorrow early next week.
Speech: Jaime will be having another swallow evaluation on Monday. This is because going back to his lung gunk, he must have aspirated at some point, maybe several times, who knows, but the gunk got there somehow and not all of it was airborne. It's been about a year since his last one, so they want to do another one. We'll see how it goes...hopefully it will be good!
I think that about sums up this afternoon. I think we're due back to the airway clinic in 6mos. The drs. get together at the end of clinic and create plans for us and send us a detailed letter with what we're to do next in terms of follow up. It's really a nice idea to have everyone in one place on one day, but it does make for a very long exhausting day for us!
Still no word from Cincy yet as to when they want us to come back down there! I've had a few email corespondents with Jaime's surgeon down there, though. This weekend (weather-permitting) we're looking forward to going down to Columbus for my commencement ceremony. My sister is planning on having a party for me at her house...I'm sooooooo hoping the snow lets up before Sunday so my family can safely travel to be with us!
GI: Jaime is to have 1 to 3 cap-fulls of Miralaxx daily. We are going to keep him on just the Pediasure with fiber and not mix it with high cal boost. We're going back in 3 months for a weight check with her. Jaime is still having lots of issues with solids and constipation. He's great if he doesn't eat, but when he does, even the very minimal amount that he eats (like 2 baby carrots) he gets really constipated. We just need to try to find that fine balance.
Rehab: Today's addition to clinic was a rehab physician. He's there to look at the whole child developmentally. He watched Jaime walk and act in general. You know how I'm always saying that Jaime is a monkey? Well, this dr. stated that there is a direct correlation between hypoxia (lack of O2) and hyperactivity. (GREAT, two little monkeys in my house!) We'll see how all of this pans out in the future, but we definitely have a terrible two year old in our house! This dr. also said that Jaime should be evaluated now by the feeding clinic. This would require seeing 2 more drs. and several more therapists. He said the sooner we start it the better! We'll see! The final thing this dr. did was give me a prescription for medication to help Jaime sleep. I haven't gotten it filled yet...I have mixed feelings about it. This medication is used to treat seizures and is a form of Valium. He said it's safe in the dose that Jaime would be taking and it's non-habit forming, I just don't know if I'm up for drugging my kid like that, but I have it if I change my mind.
ENT: No ear infection! Woohoo! However, the doc did say that if and when he gets one that he will probably bleed from his ears. From what he said it's part of how the gunk fills up in the ear and lots of the gunk is blood and Jaime being a hemophiliac...this will increase the blood. He said that normally when an ear tube pt. has an ear infection the parents just start the ear drops without an appointment, however in Jaime's case, he will need to come in to make sure the bleeding is controlled (which will be done with Factor) and to check that the tubes will still be in place. He said the bleeding could cause the tubes to shift or fall out! NICE...his NP and I were mad that he shared this "minor" detail today instead of on OR day! I would have been horrified if I saw blood pouring out of his ear! WOW! Having said all of that...his right tube looks great, his left one is blocked with wax! ARGH! He's been rubbing that ear, too, I bet it feels funny.
We were supposed to have another hearing test today, but as with the chest x-ray it was getting late, so we're going to try to do it tomorrow, if not tomorrow early next week.
Speech: Jaime will be having another swallow evaluation on Monday. This is because going back to his lung gunk, he must have aspirated at some point, maybe several times, who knows, but the gunk got there somehow and not all of it was airborne. It's been about a year since his last one, so they want to do another one. We'll see how it goes...hopefully it will be good!
I think that about sums up this afternoon. I think we're due back to the airway clinic in 6mos. The drs. get together at the end of clinic and create plans for us and send us a detailed letter with what we're to do next in terms of follow up. It's really a nice idea to have everyone in one place on one day, but it does make for a very long exhausting day for us!
Still no word from Cincy yet as to when they want us to come back down there! I've had a few email corespondents with Jaime's surgeon down there, though. This weekend (weather-permitting) we're looking forward to going down to Columbus for my commencement ceremony. My sister is planning on having a party for me at her house...I'm sooooooo hoping the snow lets up before Sunday so my family can safely travel to be with us!
Jared showing me his rocket set from Uncle Scott...check out Jaime's face in the background...ha!
Jaime's first "big boy" bath, last night-no bath seat! He LOVED it!
That's all for now folks...stay warm, it's a chilly one!
Hey Sheryl,
ReplyDeleteThis is going to be a long comment...but on the off chance that our experience might help you...
We have similar asthma issues with Owen, he also had bronchialitis at about the same age as Jaime, no aspirations or pneumonia though.
We are just now really getting a good handle on his breathing at 3 1/2. Whenever he catches a cold it goes straight to his lungs. We would go straight to a rescue inhaler (ventolin) that we could use every 4-6 hrs and we would do a puff of Qvar. This never seemed to be enough and he went through 200 puffs of a rescue inhaler in about 2 months.
We finally took Owen in to an Asthma specialist and he upped Owen's Qvar dose to 2 puffs twice a day that he would stay on through the holidays and potentially longer if needed and we noticed an immediate improvement. We have only used the rescue inhaler twice in almost 2 months and he has had one cold in that period that really didn't bother him. Prior to that he had 8 colds in 2 months, each one going straight to his lungs. This was the same period we went through the 200 puffs of rescue inhaler.
Anyway...not sure if that is helpful or not, but once we figured out the right combination for him it made a world of difference...now maybe we'll see him get past 26 lbs...
Good luck with the rest of Mr. Jaime's appointments!
darcy
Wow Sheryl! What a day you had!! And poor Jaime .. he can't be very happy with all the drs. :( I hope this all gets better and easier for all of you! How is Jared w/ all the appts for Jaime? Is he ok or does he get cranky about them too?
ReplyDeleteWith the weight- if it makes you feel better, Kayla last weighed 21 lbs.. i'm sure she is back to 23 lbs now.. but her and my almost 5 month old (Kayla is 2 months away from being 2 years old) wear the same size diaper! I think Lily is almost 20 lbs! So I hear ya on the weight thing!!
Really praying things get easier for you and your family! All those appts must suck!