There's a Fungus Among Us (Paecilomyces To Be Exact)

On Sept. 23 Collin developed a pneumonia in his left lung despite the IVIG infusions that he had received.  He was hospitalized and the doctors decided at that time to do a bronchoscope and see exactly what was going on his lungs.  They also did sinus surgery to open them up more and put another set of tubes in his ears. 


The day after surgery
 

He was sent home with a PICC line in his arm so he could receive IV antibiotics for three weeks to kill the bacteria in his lungs, sinuses, and ears.  They told us a couple of weeks later that a fungus had grown from the mucous they took out of his lungs, but they didn't think it would be an issue.  He began to put on weight and seemed to be developing into a strapping young man.  Then on the evening of Thurs. Oct. 25 he started spiking a fever, among other symptoms.  I was on the phone with the doctor off and on through the weekend thinking it was a viral infection and we could get him through it with Tylenol and Motrin.  On Sun. evening his fever went up to 104.1.  We knew at that point that there was something more going on.  On Mon. we took him back down to Joe Dimaggio's Children Hospital where he was once again diagnosed with pneumonia.  An infectious disease specialist was called in to review his case.  We learned that the fungus they found is actually quite common, it is found in the soil and therefore quite an easy thing for a boy to come in contact with.  The problem is that it has been known to cause severe complications in people with immune deficiencies.  So much for my theory in raising boys that "a little dirt builds the immune system".   The doctors now believe that the fungus is causing the repeat pneumonia's.  He was put on strong anti fungals as well as antibiotics in the hospital.  They are in the process of regrowing the fungus so that it can be tested to make sure the meds he is on are effective to kill it.  We absolutely hate the amount of strong medications he is having to take, but we have no other options.

Red Man's Syndrome from an antibiotic

Collin's Not So Common Variable Immune Deficiency

Our tiny little bundle

On June 23, 2001 we welcomed our second son into the world.  He was born four weeks early due to complications with the pregnancy.  He was a tiny little thing, but from the very beginning he had a drive to survive.  By the time he was six months he had his first respiratory infection and began nebulizer treatments.  Since we were living in TN at the time and it was winter we didn't think much of it.  In June of the next year we moved back to FL and his respiratory issues seemed to clear up for awhile.  At the age 2 1/2 we started becoming concerned with his speech delay.  After consulting with his pediatrician we began some intense hearing tests.  We were told that he had permanent hearing loss and was only hearing about 20%.  Around the same time we were also told that he was autistic, had ADHD, and some other disorders such as sensory integration dysfunction.  While none of the tests showed fluid on his ears, the ENT decided to go ahead and put in ear tubes since he was having to remove his tonsils and adenoids anyway.  When he came out to talk to us after surgery he told us he had never seen so much fluid on a child's ears.  It was packed in so tightly that it wasn't detectable on the tests.  After that he was a new child, behaviour wise.  He continued having speech therapy and we felt like he had been given a new lease on life.  We were dismayed when his ears continued to become infected.  He was the kid who always had cotton balls sticking out of his ears.  A couple of weeks before he turned 3 he had his first verified pneumonia.  We were leaving for a missions trip to Haiti and ended up in and out of the doctor's office the week before we left.

In Haiti 2004

The next few years we dealt with repeated ear infections and respiratory issues.  He was diagnosed as being allergic to just about every environmental trigger possible and with asthma.  We were told that they were the cause of the repeat infections.  The poor guy had mucous pouring out of some orifice on his head at any given time.  He took antibiotics off and on to keep things under control and we were told that was all we could do.  Things leveled out that way until the summer of 2011 when were were on deputation.  While we were doing some sightseeing in Boston he became very ill and ended up being diagnosed with pneumonia in his right lung.  He was treated and we went on our way.

In Boston summer of 2011

  That next school year was miserable for him.  He coughed and wheezed almost constantly.  He was off and on antibiotics and in and out of the doctor's office.  Towards the end of the year Harold flew a pediatrician from Samaritan's Purse to Haiti.  During the flight Harold went back and spent some time talking with him about Collin.  He suggested what we had already been thinking, that we needed to see a pulmonologist.  We made it our goal for the summer to get his pulmonary health up to par.  The first visit we were surprised to see how poor his lung function was.  A chest x-ray revealed lots of mucous pooling in his lungs.  He started on some new meds and seemed to be getting better.  We thought "whew, now we're getting somewhere".  He started the 2012 school year with a bang.  Two weeks into the school year he became very ill and we ended up in the ER where he was diagnosed with a severe pneumonia.  After hearing his history and seeing that he had a pneumonia in the exact same spot as a few months before the doctor ordered a CT scan and lots of extra blood work.    The CT scan revealed  bronchiectasis (scarring) in his right lung and a very suppressed immune system.  They now believe that he had pneumonia in his right lung for over a year.  We were told that we needed to get him in to see an immunologist ASAP.  The next week we saw Dr. Gary Kliener, who is now our hero, for the first time.

Dr. Kliener

  After spending an immense amount of time reviewing his history and blood work he told us that he believed Collin had Common Variable Immune Deficiency, an immune disorder that affects 1 in 50,000 people.  His immunoglobulin level was extremely low, causing him to be unable to fight off all of the germs he came into contact with.  It mainly affects the lungs, ears, and sinuses causing them to be infected almost continually.  This explained why he could go off a round of antibiotics and two weeks later be sick again.  The only treatment for the disorder is to have intravenous immunoglobulin infusions every 3-4 weeks.  While it is hard to know that this is something that, unless God intervenes, he will have to deal with for the rest of his life we are relieved to know that there is a treatment for him and hopefully with time he will grow stronger and stronger and be able to live a relatively normal life. 


During his first IVIG infusion

Haiti Earthquake

Many who don't see my Facebook page have been interested in knowing what is going on with our work at MFI since the massive earthquake struck Haiti two and a half weeks ago. I have many stories to share, but very little time so I thought I would add a couple of links on here to keep you up to date with our lives. Harold handles much of the logistics and humanitarian efforts at MFI so he has been nonstop busy. I have a feeling that our world will be forever changed by this catostrophic event.

Click here and scroll down to hear an interview Harold did on Moody radio.

http://www.mbn.org/genmoody/default.asp?SectionID=BBEB0643894748C9A140DF94338651A0

To learn more about MFI's partnership with Hendrick Motorsports, click here.

http://www.nascar.com/video/cup/2010/speed/highlights/01/2

When The Fire Fell

As most of you know our family spent three weeks at the beginning of this summer doing deputation. We always set out ready to make memories and have exciting adventures. This year we got more than we ever expected. The second weekend of travelling we were ready for a little down time, the plan was to get caught up on sleep and laundry. The church we were scheduled to be at that Sun. morning had an empty parsonage that they offered to us for the weekend. We arrived Fri. evening, had a nice dinner and then kicked back for a relaxing evening. It began to storm outside, which was fine with me cause the sound of rain on the roof just puts me right to sleep. We were sitting in the living room just about ready to head off to dreamland when we heard, felt, and saw a huge explosion. Everything went black, I could hear kids in the midst of nervous breakdowns, but couldn't find them. My first thought was that it was an earthquake, until my dear husband said, "I think we just got struck by lightning". Since the storm seemed to be almost over Harold went out and turned on the lights in van to give us some light. When he shone the lights on the side of the house this is what we saw.

The lightning had dug up the ground,

blown up the phone box,

knocked the door open and the light off the wall,

and turned part of concrete steps into rubble. When we went back into the bedroom, which was on the other side of the screen door and steps, we found this hole in the wall and my suitcase which had been leaning against it knocked over with the contents spilled on the floor.

I almost immediately smelled smoke, but we thought it was just left over from the lightning strike. Harold found a breaker box, flipped a few breakers and the lights came back on. We figured the worst was over so we tried to get our petrified children calmed down so we could get a good night of rest. When we woke up the next morning we immediately began to smell smoke, as we went to the front of the house it got worse. Harold called the pastor who assumed that it was left over from the lightning strike. We left for a few hours to get some laundry done. When we came back the smoke was so thick in the living room that we didn't let the kids go in. Around the side of the house Harold found this hole with smoke billowing out of it.

Harold found access to the attic, but couldn't go up without a wet rag over his face. He found a pole outside to shimmy up on the roof to open the attic access. He quickly realized that it was more than he could handle and called the pastor who called the fire department. Basically what happened is that the lightning came in the phone box, travelled up to the attic, went into the electric lines, set the insulation on fire, and then went back down the wall in the bedroom and exited out the wall and into the steps. All night while we slept the insulation directly over our heads smoldered. The firemen asked for copies of our pictures since they had never seen anything quite like it before. We can now say that we slept all night in a burning house. Looking back we can so clearly see God's hand of protection on us. It doesn't make sense that none of the wood caught fire, there were boards that were charred and too hot to touch, but no flames.

Awhile back a heard someone talk about making a photo album for your kids with pictures of times God had intervened on their behalf. You can pull it out when they are discouraged or start to doubt as a reminder of God's faithfulness. These pictures definitely make the book.

ABC Song (The Two Year Old Version)

Yes, yes I know I've been strangely absent from blog world. Partly due to Facebook and partly due to not being able to find the time. There have been many blog worthy events that I just haven't had time to sit down and put into words. Truth be told I really miss it and am trying to get back into it. As an example of how mixed up and crazy life is right now here's Dylan singing his ABC's. Kind of like me he's having a hard time figuring out how everything is supposed to fall into place, but as we all know life goes on and in a couple of years he'll know them by heart and won't miss a beat. Hopefully I'll do just as well learning the life lessons that I'm being taught right now. I'll try to return soon. Until then please enjoy this jibberish that we call the ABC Song.

Authority Structure

Last night during church Collin became very dehydrated. He asked Harold if he could go out and get a drink. He was told "no" very authoritatively. It is the opinion of my dear husband that we don't walk out of church unless not doing so would draw even more attention to our pew than walking out would. Thinking that my heart might be a little softer than Daddy's he turned to me and whispered "can I go get a drink". "Collin", I said, "Daddy just told you no". "Yeah, but you're older than him so you're in charge", he whispered back. Now I just have to convince Harold that those sixteen months that I was on the earth before him helped me to develop a vast wealth of knowledge that he needs to dip into. Leviticus 19:32 is now my favorite verse, "Rise in the presence of the aged, show respect for the elderly and revere your God". For some reason he still clings to Ephesians 5:22, "Wives submit to your husbands as to the Lord". Oh well I guess I'll give in to him since his scripture seems a bit more relevant to our relationship, and I really don't want the responsibility. I'll just constantly remind him of the advantages of being married to an older woman. In this picture, that was taken this past weekend, we were called the "old(er) love". I think that means that he's catching up with me anyway.

Hymnology

Last night during congregational singing one of my sons, who shall remain unnamed, looked up at me and said, "Who's Spiro Rinco?". "Who" I asked. "Spiro Rinco" he said. "What are you talking about", I innocently inquired. This was the reply, "We just sang there's a glorious church without Spiro Rinco, I want to know who he is". While trying hard to contain my laughter I explained that it was "without spot or wrinkle". When we got home I told Harold what had happened, he was highly amused because as a child he thought it was "Monce, Puerto Rico". This reminded me of wondering for years what a "Willie Race" was. I always thought it was "one glimpse of his sweet face, all sorrows Willie Race". I'm glad that at some age we learned to pay attention to the words in the hymnal.
I know that some of you have similar stories. Please share!