Joshua's Pulmonologist Appointment

Today was a big day for us as far as feeling like we are finally headed in the right direction. Our doctors have been great as far as building up a file of tests and procedures that need to be done, but today was the day to finally have the big bright light shine on it all. At least for me. It's been a lot for my NON medical brain to take in and comprehend. I'm thankful John was able to be there with us today.

We finally saw the pulmonologist today. He was quite impressed with Joshua's case and the battery of tests we've already completed. That helped him to speed things up I believe. Thank God my sister is here pushing and helping me SO much.

So... he added another diagnosis to the bunch. As well as the pulmonary hypertension and chronic obstructive asthma, he has added COPD, Chronic Obstructive Pulmonary Disease. It's all kind of the same thing but then again it's not. He also confirmed Joshua's lungs are only working between 40-50% and that they look like the lungs of a 60 year old man who has smoked for 40 years. He said the damage that has been done cannot be repaired but the function of the lungs can be improved.

As expected, he added medications to be taken daily. They are Advair, Singulair, and Pro-Air, as well as a nasal spray. When he listed them orally to us, Joshua said "wow, sounds like I'm gettin' a lot of air." :-)

He wants to do a right heart cath and ordered additional lab work (some which were a little alarming but he says not to be worried), as well as encouraging us to get the sleep study completed, which just happened to be our afternoon appointment today.

So.. we went to the sleep clinic this afternoon and Joshua was evaluated for a sleep study. The doctor there firmly believes he does have sleep apnea and we've scheduled the study to be done next Wednesday night. He also mentioned him having his tonsils removed and possible sleeping with a CPAP machine. So it looks like there is much more to come. I'm not at ALL wanting to have the tonsils removed so we'll have to really get more info on this one.

Thank you for praying for our sweet son. He is such a great kid and we love him so much. Please pray for his peace of mind today. He was on the phone in the car with his best friend and I could hear apprehension and concern in his voice telling his friend about it. Of course, he still has an awesome outlook on it all but I'm not sure he totally understands what this means long term. We are all still figuring that out. I really hope God will shine through us as we continue on this very uncomfortable journey.

Joshua - Update 4

We had Joshua's follow up with the cardiologist Thursday. The holter monitor was normal. The labs still show the elevated hemoglobin levels and his oxygen levels are low.

So... there's nothing more to do with this doc until after we see the pulmonologist, which is Friday the 20th in the morning. We are also seeing the sleep study doc that afternoon for evaluation.

It's raining today and rather dreary outside. Makes for a tired sleepy afternoon.

Hug your family tight!!

Joshua - Update 3

Well... we saw the ENT yesterday and they ordered a sleep study to be done.

And FINALLY........we have scheduled the appointment with the pulmonologist!!! WOO HOO!!!

But... it's not until Feb 20, but at least it's on the books.

I spent the day with my sister going over paperwork and applications online for future need for Josh. We'll see how all that goes. I just despise the mumbo jumbo of medical paperwork. Thank God my sister get's it! Thanks Heather!!!

I hope you all are having a warm, wonderful day!

Joshua - Update 2

More testing completed this week.

He just finished wearing the heart monitor. He thought he was Iron Man wearing all the wires. I guess once a sci-fi junkie, always a sci-fi junkie!

We had more testing done this week, including a blood gas draw which is slightly painful. It goes into the artery in the wrist, through the muscle to monitor the oxygen levels in the blood.

Our insurance does not have a pulmonologist for us to see, so we are waiting to hear from their rep as far as how they are going to take care of getting us into one. ugh!! I don't enjoy the insurance game.

As of now, the only treatment is to use an inhaler four times a day to open his lungs and help him breathe.

We go back to see the cardiologist next Thursday and we have an appointment with an ENT doc to discuss the asthma options. I'm not convinced we really need to see the ENT but with the problems regarding the pulmonologist, I guess it's better than nothing. So we'll see.

Thanks again for your prayers for Josh. He really is an amazing kid.

Joshua - Update

Here is an update on what is going on with Joshua.

We went back to the cardiologist to get the test results. Here is what they are saying:

1. Severe Lung Disease
2. Severe Secondary Pulmonary Hypertension
3. Chronic Obstructive Asthma

They basically said he has the lungs of a 60 year old man with emphysema.

He still has really bad varicose veins in his legs but they are not going to address these until his lungs are stable.

Right now we are going for more testing and labs as well as being referred to a pulmonologist. They will be able to really get through the nuts and bolts of this. We really don't know what the treatment or plan is for now until we see the pulmonologist.

For right now, he is on NO activity. Nothing. Running, PE, riding his bike, etc.

Thank you for your prayers. Please pray for wisdom for the doctors and for Josh's anxiety over all this.

Please also be praying for my friend whose newborn baby is in critical condition in the NICU and on life support.

Joshua

It all started with me just walking into his room. He was getting dressed.

For those of you with teenage boys, you know that you really don't see your son without pants on. For the record, Josh rarely wears shorts as it is too, unless he's in water.

So... I noticed these large, protruding, grossly rope looking, bulging veins in his legs. His left leg only below the knee, and his right leg from the calf to the thigh; I was shocked and asked him what was wrong with his legs (was I really expecting an answer here??). So, I called the doctor to schedule an appointment.

The doctor was concerned with the legs, therefore referring us to a cardiologist. (Note for later: he told me Josh was in the 5th percentile for his weight but no concern was mentioned.)

Last week we saw the cardiologist. After giving him the medical history on Joshua, (which is no easy task mind you), he examined Josh. He asked about all his scars on his ankles, asked about his breathing, asked why he was life flighted back to MU at 8 months, and other various questions.

The doctor then proceeded to make me feel like a horrible mom because Josh is so underweight. This is something I've always thought was normal for Josh and NO doctor we've been to, (including our family doctor), has ever been concerned given his medical history. I told him I always thought this was normal given his start in life, but he informed me Josh should be caught up by now.

After speaking with our family doctor again, he informed me that babies at 24 weeks gestation, back in 1990, did not live so there really isn't much history or information on the books as to what is considered normal. It's like Josh is a medical guinea pig in some form or another, and he told me to not worry about that for right now.

So back to the cardiologist appt... he did an EKG, then another EKG, and then ordered an ECHO to be done. I've never watched an echo, nor did I realize they last can for an hour. After the ECHO, the doctor came in and was speaking with the tech. I started writing everything down they were saying because I was starting to freak out. The doctor told me Josh has increased pressure in his right ventricle. He said he believes there is a blockage somewhere but it's not in his heart, most likely the lungs. He said he is thinking Severe Pulmonary Hypertension with some type of possible heart disease. He also noted Chronic Obstructive Asthma as a diagnosis too. He ordered blood work, x-rays, and a pulmonary function study to be done.

We just completed all the tests this week and will be back to the doctor next Wednesday to find out what is going on. I'm very concerned but am trying to just give this to the Lord and know he has a plan for all this and is not surprised about it. But I am.

Josh is doing okay right now although he is having some anxiety at night (or he's allergic to the cat Alex got for Christmas), but we're thinking it's anxiety. He is able to calm down once we do some deep breathing together, and sleeps through the night. I told him it's my job to worry and his job to get good grades, so we're gonna go with that for now.

SO... with all that said... please pray for Joshua to be calm, for the doctors to know how to best treat him, and for God to heal him.