Cardiologist, pulmonologist, opthamologist and triple scope...

In that order, all within a week! 

CARDIOLOGIST

We met a new cardiologist, Dr. Rob Puntel, who comes to Prescott once a month. It was nice not having to drive 1 1/2 hours for one appt. the appt. went really well. He did an echo and instead of having it done and reviewing it, he stood right there and showed me exactly what was going on. Ruby's ASD, (atrial septal defect or hole in her heart) was 7-8mm and is now 3-4mm. I pretty much teared up when he said that. It was the first time that after hearing a diagnosis it actually improved!  He said there was still a chance it could close up (best case scenario), but that it will never increase in size. He also said he wasn't concerned about closing it up at this point. He'll monitor her until about 8 and because she is female will close it up because later in life if she gets pregnant, the increase in blood flow can cause more blood clots and they can pass through that ASD and cause problems. 

He also said her tribeculations were really of no concern and we should follow up in 6 mos. she also has a small PDA (patent ductus arteriosus) which every baby has until a few days after birth. Ruby's didn't close and is so minimal that it was overlooked on her first 2 echos. The result of the opening mixes oxygen rich blood with oxygen poor blood causing strain on the heart and lungs. Hers is so minimal, it is not a concern and we are cleared for being put under anesthesia for the next 6 months.  

Such good things to hear. 

PULMONOLOGIST

We then saw Dr. Rao, our pulmonologist a few days later. Just a follow up, which went well. Ruby had just gotten over being sick and was on oxygen for 3 weeks and still sounded really congested, so she put her on an anti-inflammatory M-W-F for one month to calm down her airways. Orher than that, no big news on her end.

OPTHAMOLOGIST 

We have been going to Dr. Plotnick (Dr. O'niel's partner that specializes in glaucoma) every 2 weeks since she got her shunt put in in November. Her pressure has been 3 since a couple of weeks after surgery. While low, he never made it sound like a big deal and just ends with (it's about a 10 min. appt)

"Alright, well, I'd like to follow up and look now under anesthesia".  I am thinking, "huh?" He said it as if it's like another 10 min. appt. and as if there is so etching wrong that he needs to check because the pressure is low. He said he wants to make sure that all is well with the eye and if so, the pressure of 3 is ok for her.  If it's not, I don't know what...I feel like I left thinking what just happened here? It was such a surprise that he threw out anesthesia like it's no big deal. That's kind of a big deal to me and to Ruby, poor girl, who has gone under anesthesia at least 7 times now. Knowing that it's not the most fun thing in the world, my heart hurts to have it happen every time. So that will be in a couple of weeks. 

AERODIGESTIVE SCOPE

We have been so blessed to be able to be a part of this Aerodigestive group so that the ENT (Dr. Page), the pulmonologist (today it was Dr. Woodward) and the gastroenterologist (Dr. Ursea) can each do their scope one right after the other to determine what the next actions are. I don't know answers I was hoping for, well, yes I do. I was hoping that Dr. Page would tell us that her cleft was healed and that we could go home and throw the feeding tube/pump out the window. If only...

So each Dr. came out when they were done explaining their findings. Dr. Page was first. He said the cleft was still deep and the tissue around it didn't look healthy and pink like it should. Not something permanent, but something that we need to work on before more can be done. He also said that the left airway still seemed like it had something sitting on it, making it more constricted, causing her loud breathing. It's something that with time will get stronger and bigger and because she is holding her own on oxygen, there isn't a need to do drastic surgery to fix it. He also put tubes in her ears, which we knew would be coming...she still had fluid in her ears since birth and while it didn't ever cause an infection, it may have had an affect on her hearing. Now we will be able to hopefully take a successful hearing test (cross your fingers). 

Dr. Woodward was next and said she had a lot of congestion and secretions. He cleaned her out (which I can majorly tell as she is sleeping next to me SILENTLY sleeping). I asked him about deep auctioning on a regular basis (where they put a small suction tube up through the nose and down the throat). He said he doesn't love that because you are going in blind and have no way to know if there is any damage being done.  I asked him about something called thevest.com, that I read about on a laryngeal cleft Facebook page I am on. He said it would probably benefit her and he'd start working on the order right away. 

Dr. Ursea, looked throughout her stomach and could tell she has no allergies (which is great) and put in a probe testing her reflux issues. We are staying 24 hours and will log when she eats, sits up and lays down and has reflux. So far because she's been so tired from anesthesia, we have had no issues. Let's see how the next 18 hours go and that they can get a good idea of her reflux, where it comes from, where it goes and how acidic it is. 

I am so tired. It was an early morning this morning and I pray Ruby gets good sleep tonight for me. I don't love staying in the hospital and am so paranoid about being here during RSV season that I asked that everyone in the room gown up, wear gloves and masks so that there is less of a chance that she leave with a sickness. Let's hope that works and we stay well the rest of the season!

A few pictures from today's scope:

WE LOVE THIS LITTLE SWEETIE MORE THAN WE COULD EVER IMAGINE!!