It never ends...

[micki]

We took Russell to ER last night at 3:00am.  He was admitted with pneumonia.  The poor kid can't seem to get a break these days.  When we arrived at the hospital his O2 was only 65 and heart rate of 150.  He was in pretty bad shape. 

[Secondgen]

How long will he have to stay Micki? We will definitely say a prayer for him.

[micki]

Thanks Dave, I'm not sure.  He is on 6 liters of oxygen and still only staying in the mid 90's.  He's still quite short of breath and breathing very labored.  They did a CT of his lungs which showed some chronic changes from the past.  That was kind of discouraging.   

[Secondgen]

What do you mean by chronic changes?

[micki]

Even though he has never smoked his lungs look like he has smoked all of his life.  It's not really emphysema, but has that appearance.  He was born premature and has had lung problems all his life due to that.  However with the exception of being hospitalized with pneumonia 5 years ago he has done pretty good.  for the past several years.  We aren't sure why the sudden change.  I'll be talking with the Dr's this week to find out more of what's going on and why. 

[Secondgen]

Keep us posted. Remember the best thing that we can do is take it to the Lord in prayer. He can make a way where there is no way, regardless of what the doctors say.

[micki]

Things have been very up and down with Russell.  He got pretty bad but we "think" he is on the upswing now.  We really don't know what is going on though.  He may have a broncoscope tomorrow depending on how he is doing by then.  The Dr. said if he isn't a lot lot lot better by tomorrow they will do it, but, they would prefer to wait until he is better and then do it.  The biggest problem is they really don't kow what is wrong with him.  They are running several tests.  His CT showed enlarged lymphnodes on his lungs.  That's not a good sign.  Because of that there are a few types of cancer that they are considering.  They are doing some specific blood tests for that but unfortunately we won't know those results for at least a week or longer.  There are some other lung diseases that could be the cause and again they are running some specific tests for that.  The advantage to doing the scope tomorrow would be that they can biopsy his lungs and we could get some answers faster.  The down side is he could get sicker in the process.  So they are hoping he makes a fast recovery and can get home get better and then start a lot of testing that would normally be harder for him if he stays this sick.  Needless to say it has been a giant roller coaster for us and for Russell these past few weeks.  I think I'm ready for this cloud to move on now.             

[micki]

Randy just called and said Russell's O2 was at 99%!  That's a good sign!!! 

[micki]

Well, we brought Russell home today.  He was able to get off the oxygen.  Makes me a bit nervous.  All of the possible "bad" blood work has come back and is all negative!  That is a huge relief!  He will have another chest CT in 3 weeks.  They may still have to scope him and possibly take some biopsies.  We should know more then.  Thanks to those that said prayers and thought about us. It's been a very exhausting and trying week.   

[Secondgen]

Whats the word on Russel Micki any updates?

[micki]

He saw the family Dr. yesterday.  He still has some wheezing in his lungs.  He did say that even though the blood tests that were done for the bad things were negative that doesn't always mean it's correct.  That was kind of a let down.  He is scheduled to have a CT on May 3rd then we see the lung Dr. on May 7th.  If there are still enlarged lymph nodes he will have a scope and biopsy.  We still don't know why his lungs suddenly became emphysema like.  Those are questions for the lung Dr. in May.  There is also the possibility that he had such a bad infection which caused the nodes to be swollen in the first place.  That would be my hope and they would then be gone with the next Ct.   

Thanks...

[micki]

UPDATE:  Unfortunately the news isn't very encouraging.  Russell had a repeat Cat Scan last week. We saw the Dr. today.  He said it looked a "little" better in terms of congestion but he definitely still has the lymph nodes.  He needs to now have his lungs biopsied however he is sick again...  He started running a fever yesterday.  They put him on antibiotics and steroids and I am to call him next Monday to let them know if he is better.  If he is they will then schedule the biopsy at that time.  I was concerned about having to wait yet another week. It's already been a month.  The Dr. said he could end up a very sick man if they do the biopsy right now.  So really we have no choice but to wait until next week.     

[Secondgen]

Thats not what we were wanting to hear, but its not in our hands. Have faith in the Lord. We will continue to pray for Russell, and your family for strength. On a lighter note I was driving by The Lube today and saw Randy fightin with the mower, hope all turned out well. Tell him that I said hi. Talk to ya later Micki.

[micki]

Thanks Dave.  He was fighting with the mower???  He better not break my tractor! 

[Secondgen]

 

[micki]

It hasn't been easy the last four days.  I called the Dr. office last Friday to tell them Russell is better and lets get this scheduled.  Apparently the Dr. never charted that he wanted to do the biopsy so they couldn't schedule it until they talked to him.  Of course he was off Friday then he didn't get to the chart until this morning (Tuesday).  Needless to say I have made several phone calls to his office and made known I wasn't too happy with putting this off any longer.  Russell finishes his antibiotics tomorrow and my guess is has a week or less before he starts getting sick again (if history repeats itself).  But they were able to get him scheduled for this Friday morning.  I don't know that ewe will know much until next Tuesday or Wednesday but at least it's a start to finding out what is going on.  This has certainly been a test of my patience!  Russell has dealt with this much better than I have.     

[micki]

Russell had the bronc and biopsies today.  He tolerated the procedure well.  We of course won't know the out come of the biopsies until Tuesday or Wednesday.  the Dr. did say that his lungs look like that of a 60 year old man.  He also said they are very very weak.  He had many many pockets of mucus that needed to be cleaned out and he did that.  He said he will most likely need to have this done possibly as much as once or twice a year.  He also has to stay on prednisone for another month.  Once he is at his peak in terms of lung health they will do some lung function tests for a base line.  They will do lung function tests 3-4 times a year to see how his lungs are doing in terms of deterioration.  If he can hold his own we can wait for aggressive treatment.  If however he shows a rapid decline we may have to look at some drastic measures including lung transplant.  He will also have another CT in the next 2-3 months to compare with what we have seen on the last two.  He is also very susceptible to any infections.  The second he feels like he is getting sick we are to get him on an antibiotic and steroids.  Of course he cautioned us with the use of the steroids.  He also will have to do at least 4 breathing treatments every day for probably the rest of his life.   

[ohioreef]

Tell him to hang in there, he's in our prayers.

[Secondgen]

Have you gotten him to a church house yet? Thats where the healing begins. There is a great one on Looney Road in Piqua no more than 5 to 10 minutes from your house Micki. We will continue to pray for him as well. All things are possible with God.

[micki]

Thanks to both of you. 

[micki]

The Dr. told me if I haven't heard from him by Thursday to make sure to call him.  So I called Thursday morning. They said he would call me after 3:00 that day. Of course he never called.  I called on Friday morning.  They said to call back at 1:00. I did they said he would call me when he was finished with that patient.  I called back at 2:00 they said he was almost finished with a procedure and would call me as soon as he came out of the room.  Finally at 2:45 he had a nurse (or someone, I'm not sure she knew exactly what she was doing or saying) call me to say the biopsy showed inflammation consistent with asthma.  When I asked what exactly that means she said I would need to come in for a follow up appointment (something I would have thought he would have wanted us to do in the first place).  I said that would be fine I would like to see the report and talk it over with the Dr.  She was going to schedule an appointment when I heard the Dr. say something then she asks how Russell is doing. I said fine right now, but he will be off the higher dose of steroids next week.  The Dr. then told her just to schedule a pulmonary function test in 2 weeks.  She passed that on to me.  I asked where that would be done, going to said there in the office.  She said she would get a date and let me know.  I reminded her to have a sign language interpreter there.  I hear her say ok I'll get an interpreter.  Next I hear the DR. say something to her ( I couldn't understand him), she says oh he wants it done at the hospital not here.  So fine do you set that up do I call what?  She tells me to call the hospital and tell them when I want to come in.  I ask what department I call etc. She him haws around and finally tells me to call the main number and ask for registration and to make sure they will have an interpreter.  By this time I realize the only reason he hasn't seen Russell back in the office and the only reason he wants the PFT done at the hospital and the only reason we have done everything by phone (taking anywhere from 1-3 extra days to get the information conveyed) is because the Dr. doesn't want to pay for an interpreter!  I'm livid by this point!  After I hung up I called our family Dr. and got an appointment for Tuesday morning. I then called Yacoub's office and asked them to fax the report to our family Dr.  We will get the report Tuesday morning and have him refer us to another Dr.  Russell will obviously have a long term relationship with a pulmonoligist and I refuse to do that over the phone because they won't do what the law requires.               

[verper]

Yeah, get a different doctor.  My wife has gone through more than a few to find a caring, understanding, and competent one for each specialty.  Although I'm not sure if just being cheap isn't worse.

[micki]

I know it's a close tie cheapness or understanding.  Either way it's very frustrating.  The past few days Russell has had to increase the amount of breathing treatments he's used so I think we need to find someone soon.   There has also been a polution index advisory as well. I'm hoping that is the main reason.   

[micki]

Here is the latest.  I'm really getting fed up with this crap!

We saw Dr. McNerney yesterday our family Dr.  He said he would consult with the other Dr.s to get a Dr. they thought was good enough to take care of Russell.  They called today with an appointment with Dr. Sickinger.  Long story short, I called Dr. Sickinger to make sure there would be an interpreter at the appointment.  The lady in the office was very RUDE!  She said they don't do that and would have to page the Dr. to see if he would but she was sure he wouldn't.  Of course he said no. She then called my family Dr. back and was RUDE to them as well and cancelled the appointment. I then called them back and asked questions to get a for sure answer that they cancelled his appointment because he is deaf and needs an interpreter.  She said that's right!  I said ok here's the deal we are prepared to file a law suit because that is discrimination and against the law.  I would like for you to call the Dr. and let him know that we are prepared to do that and WILL do that if necessary.  I wanted to give him one more chance.  She called the Dr. then called me and he still said no.  She said because he hasn't seen him he has established no relationship with him and they have the right to refuse to accept a new patient.  I said that's not true. You scheduled an appointment with him and blatantly cancelled it because he is deaf.  I very calmly said I was sorry to hear that and I had hoped for some good quality care from these Dr's because I've heard good things about them.  I then said I will call my attorney tomorrow. 
 
A few hours later the business manager at our family Dr. called back and talked to Randy.  She said Dr. Sickingers office called and said they had contacted their attorney and they will see Russell on June 26th as planned.  I have to be honest, I'm concerned about the care that he will now get from this Dr.  There are no other Dr.’s around that my family Dr. feels comfortable sending him to.  We are basically between a rock and a hard place now.     
 

[ohioreef]

They scheduled the appointment so that they have their butts covered. If you cancel now, they are still covered under the law.

I do share your concern about the level of care that he will receive now.

[Secondgen]

It could work the other way to in that he will treat him with good care because he knows that you will not put up with any funny business. I do hope Russell gets the care that he needs to get well. I will be hoping, and praying for ya'll. Try to stay on the positive side though I know its hard.

[micki]

UPDATE:  We are now on our 3rd Dr. refusing to get an interpreter.  I wasn't sure where to turn. We were leaning towards the Columbus area but wasn't sure if we needed to head there just yet.  A friend of mines son is an internal medicine Dr. in Cincinnati.  He offered to look at Russell's films and give us an opinion.  I sent all of the X-rays and CT scans and Biopsy reports to him. He called me Monday night and we talked for an hour or so.  Some of what he said was exactly what the first pulmunologist said. It felt good to validate what we had already heard.  He said if he didn't know Russell was only 23 years old he would have thought (based on CT) he was a 60-70 year old person that has smoked all their life.  His lungs are that bad.  So I asked what direction we should take.  He too said he felt like Russell might very well be looking at lung transplantation down the road. He said if it were his son he would without a doubt head to Ohio State.  It just happens that my sister in law is a respiratory therapist at Ohio State University hospital.  I talked with her and she did some checking for me and got the name of the head Dr. of the pulmonary clinic.  Her boss talked with him and he said he would be more than happy to have Russell come down there!  So my family Dr. now has that name and is starting the referral process.  We will hopefully be heading to  Columbus soon!  The timing is good.  Last night we had to take Russell to ER again. He was fine at 1:00 when he left work.  I came home at 5:00 and he had a 102.8 fever and was having trouble breathing.  He wanted to wait until this morning to call the Dr.  I finally convinced him if we go to ER we can get on some IV meds and hopefully come home but if we wait he would most likely be admitted and have to stay.  Turns out I was right. They did some IV antibiotics and steroids and we were able to come back home. Had we waited I would bet my life he would be staying in the hospital right now.  From what the pulmonary Dr. told us after his scope and biopsy, we need to get him on something as soon as he feel the first bit of distress.  He said for now that might be what keeps him out of the hospital. 

[micki]

The latest: Well we spant another 6 hours in ER on Friday night.  Same stuff different night!  Is it July 26 yet???  I just hope we can get some answers. 

[mhhauser321]

Hope He gets better I know if I were in your feet, I would need the support

[micki]

Thanks Matt.  We have a lot of supportive family and friends.