Today’s Unscheduled UCSF Appointment…

Austin has been coughing quite a bit the past week and it is probably the worst cough he has ever had. I brought him to UCSF today so that he could be checked out. He had a chest x-ray, which actually showed an improvement in his airways from the first one he had when he was originally hospitalized. His doctor decided to treat him for whooping cough as a precautionary thing since it has been going around like crazy in CA. He has his official whooping cough test on Wednesday at his 15 month wellness check up with his pediatrician.

He will be on Azithromycin for 5 days and Sulfamethoxazole for 2 weeks.

Austin weighed 22.6 lbs (48th percentile), meaning he has gained pretty much NO weight in the last 2 months at all. His height was a little under 32 inches, putting his BMI to the lowest it has been in over 6 months.  Before going into the hospital his BMI was 48%, when he left the hospital his BMI was 51%, and now his BMI is at a measly 29%.

He has been referred to a GI specialist at UCSF and hopefully we can figure out why he is having so many reflux issues lately (he has thrown/spit up several different times in the past 3 weeks).

Anywho, hopefully these antibiotics knock out this nasty wet cough!!!! Keep Austin in your prayers.

Today’s CF Clinic Appointment!

Today was Austin’s first official clinic visit back at UCSF and it felt like we were right at home! It felt as if we had been going to UCSF instead of Stanford for the last 10 or 11 months! We just love all the people at UCSF!

Anywho, they weighed him in at 23 lb 5 oz with clothes and somewhat of a wet diaper on, which was surprising because I am used to having him weighed naked, but I guess he can’t be weighed in naked for the rest of his life!! The nurse had a tough time getting Austin’s height because he was SO cranky. His BMI is about 55% with today’s weight and his more accurate height from his hospital stay.

Austin’s dietitian upped his does of his vitamin D3 to 2 mL a day because his vitamin levels in the hospital were only 21, lower than the 23 he had at 6 months (they want him at 30 or higher). We are also going to try to add more calcium rich foods to his diet and more FAT. That means more butter, more cream, more fatty oils… The works.

They are slightly concerned about his food intake, since he hasn’t been eating much for the last 4 days. He also has some stomach pain, which could mean he needs a slightly higher dose of enzymes with food.

That’s all I can think of at the moment. We are heading to the Elephant Bar right now for lunch. Hopefully Austin will eat something!!!

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A little update for everyone…

So glad that May is over with!!! As most of you know, almost the first two full weeks of May were spent in the hospital. Austin has been doing well since we were discharged and thanks to 1/4-1/2 a packet of Miralax a day, constipation is definitely not an issue anymore for him!

On May 29th, Tyler, Austin and I drove to Los Banos to pick up our puppy, a chocolate/yellow Labrador Retriever mix. We named him Brody and he will be 9 weeks old on Sunday. So far, Austin and Brody seem to really like one another, although occasionally, Brody can be a little too much for Austin to handle 🙂

The rest of June will be pretty busy for us! Austin will have his first CF clinic visit back at UCSF on Friday, June 13 and from then on out, we expect to have clinic visits once every 3 months. My Aunt Chris and cousin Matthew will be visiting for two weeks from Kauai and my sister Madison will be coming back from Australia on June 17 or so. My brother, Ryan, graduates with his Masters degree in Electrical Engineering from Cal Poly San Luis Obispo too! We have his graduation party and my grandparents’ 50th anniversary parties the same weekend. Austin will finally start swim lessons on June 16, which were originally supposed to be in the beginning of May. He will have them 3x a week for 2 weeks.

Anywho, there is a little update for everyone!

5/11/14 – 10am Update (discharge date set)

WE ARE GETTING DISCHARGED TOMORROW!!! 

So excited! Austin will have his PICC line removed at some point in the morning and we should be discharged by lunch time tomorrow. Austin will have to continue oral antibiotics for another week and neb/vest treatments at least three times a day. He will have a follow-up appointment at his CF clinic in 4 weeks.

That’s all for now!

5/10/14 – 10am Update

So the doctors have been going back and forth about a discharge date for Austin for a while now; first it is maybe Mother’s Day and then they decide to keep him for the full 2 weeks. This morning his pulmonary doctor came in and said so far he hasn’t cultured much other than the high amount of the white blood cells neutrophils, which they expected with the amount of inflammation he has in his lungs.

His doctor then told me that if he doesn’t really culture anything else from his bronch sample, they WILL let us go home a little early, possibly Monday. We are going to discuss setting an official discharge date tomorrow, after his bronch sample has had another 24 hrs to culture.

These guys gotta stop pulling my strings here, giving me hope that we will go home sooner and then telling me it’s not going to happen. I really hope that this time they don’t change their minds again! The weather this upcoming week is supposed to be really warm and perfect for outdoor fun 🙂

Other than the new info about his bronch culture not showing much and the potential earlier discharge date, nothing much has changed. Like I’ve said before, his breathing has improved since we got here and he is noticeably using less effort from his stomach to help him breathe. They seem to think his breathing is starting to slow down a little bit too, but I haven’t really noticed that too much because he goes through so many cycles of really fast breathing and “normal” breathing speeds.

That’s all I got for this update 🙂

5/9/14 – 11am Update (not going home this weekend)

Since Austin’s bronchoscopy yesterday afternoon, he has been coughing a bit more, which was expected. He did well last night and had no fever and no problems with his O2 levels. He is in a cranky mood today for whatever reason, possible a side-effect of being under general anesthesia yesterday. We don’t have too much information from the bronchoscopy yet, except that there was a higher white-blood cell count in the sample taken from his lungs. This indicates inflammation of the lungs and some infection, which he is already being treated for via IV antibiotics. Hopefully we will know more in the next 24 hours.

The worst news we got is that we will be stuck here for another freaking week. Kill me now. I managed to get the nurses to agree to disconnect him twice a day now so he will be IV free from when he wakes up until 2pm and then 2:30pm until 10pm. THANK GOODNESS! It is soooooo unbelievably hard to keep this guy from getting tangled up in his lines when he is playing/running around.

Anyways, we are continuing IV antibiotics every 8 hours and 4x a day breathing/vest treatments. His breathing has improved a lot since we got here (I didn’t even think it was that bad in the first place) and they want to re-check his lungs with an x-ray on Monday.

I’m pretty irritated that we will be here for another damn week. It’s so mind baffling to me that we came in for constipation and expected a one night stay and now there is all this other crap we have to deal with! He didn’t even have any real symptoms indicating any kind of breathing difficulties or infection. This disease is ridiculous and it freaking sucks ass… Sorry, like I said, I am pretty irritated today.

During his morning breathing treatments

During his morning breathing treatments

5/8/14 – Post-Bronchoscopy Update 7pm

Austin had his bronchoscopy around 4pm today and he is now back in his room, eating like crazy since he hasn’t eaten anything since 9pm last night.  The bronchoscopy went well and he did have a bit more mucus in his lungs than is typical and he had some bleeding during the rinsing, which usually indicates a chronic infection of some kind in CF patients. We have to wait 24-48 hours to see what the culture starts to grow, but we won’t know the exact bacteria species for 4-5 days. It is still a possibility of being discharged sometime this weekend!

Austin will have his O2 levels monitored overnight and he may or may not develop a fever at some point as a result of the procedure. He is definitely coughing more, but they said that is expected after a bronchoscopy. Thanks again for all the good thoughts/prayers!

 

 

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