Trip to UF and Updates on Joshua

We had our monthly trip to UF this week. It was a good visit. Most of the same but a little deeper conversation.

Joshua's pressures look the same still. There is still no improvement on the meds. They are going to give him two more months on the meds he is currently taking before adding a new one on top of it. The new one they will add in two months, if things don't improve, has just been approved by the FDA. I don't remember the name. It will be taken 4-6 times a day and is inhaled.

We have a hard enough time getting his three times a day meds in so we are also getting him a medical watch. It's one he can set alarms to (like his cell phone) but it has 10 alarms on it. I'm going to set one of them to say "give your mom a hug" or maybe "unload the dishwasher" or possibly "start your laundry". Hmmm.... many options here!!!

No really, I am hopeful the watch will be a better reminder than the cell phone. If he doesn't hear the phone alarm, for whatever reason, (usually it's in the car or needs to be charged, or he's outside), then he doesn't remember the meds.

Joshua has been having nose bleeds almost every day the last week and a half. I took him in to see an ENT here in Jax. They said he has a "small bleed in the lower, left turbinate." Did you know we have turbinates?? He treated him with Affrin hoping to get the vessels to constrict and said to watch it and treat as needed and then start moisture therapy once it stops for three days. Then we are to follow up with him in 4 weeks. Well, we haven't had three days yet so we are going to start the moisture therapy anyway.

We also saw a pulmonologist in Gainesville for the first time. Dr. S was great. It was quite a L O N G visit. It seems to take F O R E V E R to give someone new all of Joshua's medical history. Not to mention all the copies we have of labs, meds, tests, etc. We were in her office for 3.5 hours. UGH!

So... after speaking with the doctors at UF, they want him to go back to ENT before the 4 weeks. They want us to discuss POSSIBLE removal of the tonsils. The risk may be too high for Joshua to have this done. Pulmonary hypertension patients are not great candidates for any type of surgery requiring anesthesia.

For now we will wait for the appointment to see the ENT and then the three docs will get together and discuss what will be best for Joshua.

Also, we are holding off on the CPAP with oxygen until we see the ENT.


One more thing... could you please pray for a sweet family in our church whose 2 year old son passed away. He had Leigh's disease. It's a bittersweet time for us. We know baby Mack is able to run, laugh and play now, but we sure wish we could see it ourselves.

Thanks so much for your continued support and love of our family.