Our growing list of firsts

It has been nine months of firsts. First birthdays, first anniversary, first summer, first Halloween, first report cards, first lost tooth....the list goes on and on.  We can now add our first Thanksgiving to our list. This is not an exciting list of "firsts" like it is with a child who is experiencing their first year of life, but a very sad and painful list of firsts. A list of firsts because it is the first time we are doing things without our "daddy". The first time "mom" is running things (even though I probably did that anyway), but now it's different. I HAVE to run things and I have no one to make decisions with or to even argue with. I. Am. In. Charge. 


It sounds like it would be nice. Always in charge. No other schedules to work around. No one to check in with. It's all about me and the boys. We do what we want and don't have to worry about anyone else. Except there is one big problem. All this so called "independence" really sucks.


I HAVE to be in charge. I HAVE to make all the decisions. (I am really really really horrible at making decisions!) I need another schedule to work around to keep me balanced. I WANT to check in with someone because it means I am missed and cared about. I WANT it to be more than me and the boys.  I WANT to worry about someone else. Life is a much happier place when you have a companion to worry about. It really is. It may not seem like it when you are arguing about finances or how much time you are spending with each side of the family. There are a million things you can argue about in a marriage, but in the grand scheme of life, those "things" to argue about just don't matter. 


If you have a companion to snuggle with, a hand to hold, a shoulder to cry on, someone to laugh with, someone to share opinions and thoughts with, someone to share child raising with......YOU, my friend, are a very lucky person. 


Joe. I need you back.

May 2009

Amazing friends, amazing neighbors (Medical History April 2008-Jan 2009)

This is a continuation of Joe's medical history which you can read here.

When we arrived home from the airport on April 17th, 2008, Jonas was in for a shocking surprise. This was the condition of our backyard when we left on April 1st. Our backyard fiasco started clear back in August of 2006. Our next door neighbors were going to build a block wall fence, so Jonas thought it would be "really cool" if we did too. (Because he had lots of spare time to spend building a fence in between school, work, and not feeling good). To make a very long story short, we ended up hiring someone in September 2007 to finish what we (he) had started. Jonas was no longer feeling well enough to try and finish this major project. But, the guy we hired was a "hit and run" type of fella. He came, he started the job, he took a little more than half the money we had agreed to pay him, and then he disappeared. Stressful? Totally. We kept hoping he would come back, but we never saw him again.

The partially worked on wall behind Sam and Ben is all our so called "fence builder" had done

This is what Jonas saw when we pulled up into our driveway:

My dear friend had put herself in charge of a major project. I didn't even know this was going on and when I got back on April 12th I was shocked when I saw our fence almost finished. My friend had been talking with my mom while I was gone and had arranged an entire neighborhood and community of "secret helpers" to finish our backyard. Jonas was speechless when he saw it. He was in tears and couldn't believe what he was looking at. What is even more amazing is the "secret helpers" didn't stop with just a fence. Neighbors and friends brought in dirt to level our yard, they put in a sprinkling system, they put in our grass, they put together a small storage shed and a swing set for my kids. The kindness and hours of service that were spent on our behalf was so incredibly generous of so many people. Everyday something new was happening in our yard. It looked beautiful! We were so grateful and just amazed at how many people were willing to help with our yard. It was a very humbling experience. It was hard to watch so many people doing things in our yard....we felt guilty..... Jonas especially felt like he should be out there helping. He desperately wanted to be out there with everyone, but he was still really sick. He was so grateful though, and I know he wished he could have personally thanked everyone who had helped with such a huge project. Thank you so much my dear friends and neighbors. We are so thankful for you and you will never know how much you touched our hearts.

These are pictures of some of the people helping to haul all the dirt to our backyard. I wish I would have taken pictures of how many people showed up to lay our sod. There were at least 20 people there helping!

 I don't have "after" pictures, so here is one I found of our yard in June. We were so excited to have a yard for Sam's birthday party!

I need to backtrack and fill you in on how Joe's recovery from the Mayo Clinic was going. When we got home he was still so sick and frail. We had a nurse from Coram Healthcare come to our house a few hours after he got home to show me how to do his IV antibiotics and TPN. I remember feeling very overwhelmed and nervous to be in charge of his medications. I had never done anything like this and it was totally freaking me out. Thankfully a nurse would be coming to our house to change the dressing on his PICC line and access his PORT once a week. I was not ready to take that on. I eventually did it a few months later (because our insurance would no longer cover a nurse coming to our home if Jonas was working) so I was forced to learn how to do it. Putting needles into Jonas the first time was SO scary! After several times I felt more comfortable with it and I actually got really good at it. :)

This is a picture from Feb. 2010, but I wanted you to see what his port looks like. This is after a surgery he had to move his port from one side to the other. The doctors had to remove it because the skin had become so thin that he had holes that wouldn't heal. The needles that are covered with a dressing and the tubing hanging down....yeah.....I put those in. :) I did that every Sunday night for about two years.

From the time Joe got home from the Mayo until mid May I pretty much had to do everything for him. He was so weak and tired. He slowly started to gain weight though and even though he still had severe diarrhea, which was making him dehydrated, we finally got the fluid in his TPN high enough so that it would offset everything he was loosing each day. Getting the TPN to be "just right" was frustrating and a slow process. After several weeks of seeing an Internal Medicine doctor we didn't care for, we finally got into Dr. Penrod at the University Hospital. He was awesome. Taking care of a patient who is on TPN takes a lot of time. Seriously.....not many doctors want TPN patients! They have to check labs weekly and meet with dietitians and pharmacists to get the TPN exactly right. It's a lot of extra work and I am so grateful Dr. Penrod was willing to do that for us. He helped Jonas out so much.

We had so many doctor appointments in the months of May, June, July, and August. It seemed like we had at least one a week and sometimes two. Jonas was seeing FIVE different specialists! He was seeing an Endocrinologist for his diabetes, a Gastroenterologist for his diarrhea, a Hematologist for his low white blood count, a Pulmonologist for his lung infection, and a Immunologist for his Immune deficiency. He was also seeing his Internal Medicine doctor and a dietitian. That's a total of SEVEN doctors that wanted to see him monthly until the end of the summer. Then it went to every two or three months that we saw each doctor. Our schedules were crazy!

I wish I could remember how many ER visits we had after we got home from the Mayo. I think maybe 3 or 4 and they were because of low potassium or dehydration and I can't remember what else.....but it all had to do with the TPN getting balanced with what Joe's body was doing. This is when a journal would be nice. I can't recall so many details about this time and its making me mad! If only I had written in a journal....

Here are some pictures of Jonas in April and May. I still get shocked when I look at them and see how skinny he was. He had literally been starving to death and it makes me so sad to think about that.

In June another amazing service was done for us. Some friends put together a benefit dinner to help us pay for medical bills. The turn out was unreal. It was held at West Bountiful park and it seemed like the entire city was there. The food was catered by Red Flame and there was also a bake sale. It was shocking and humbling to see so many people come to support us. I wish there was a way to thank each person individually who supported us through this time. But how does one go about thanking an entire city and community?! Seriously. I live in an amazing area. We were so touched by the generosity of so many people and I truly want to thank you and tell you how much that meant to us. I wish I had more pictures of the benefit dinner, but here are a few I could find. Look at the line of people waiting for food.....look at the parking lot full of cars. It was amazing. It was touching. It is something I will never forget.

At the end of May, Jonas went back to work. He was feeling better and gaining weight almost weekly. The IvIg he was receiving for his immune deficiency was helping, the TPN was helping his malabsorbtion, the neupogen shots were helping his chronic low white blood count, and the IV antibiotics were helping his lung infection. He was getting better! We were so excited and happy to have a healthy dad and husband again. We tried to put out of our minds that the diarrhea problem was still not solved, but at least it was being treated.....not fixed or cured, but treated.....and that was good enough for now.

June

July

 July

 August

September

November

Things were going great! It just never seems to last very long when it come to Joe's health. This is a picture of Jack's blessing day. On this very day Joe's PICC line was really itching and irritating him. He put some cream on it....nothing too unusual.....BUT if you happen to have a low white blood count and a PICC line that can get infected easily.....DO NOT use cream that the dog has chewed on! Our dog was always chewing on tubes of cream, neosporin, A&D ointment. He loves them. Well, Joe grabbed a tube that Gus had chewed on (I can guess why we still had the tube of chewed cream instead of it being in the garbage. Joe was tired of spending money on new tubes of creams and ointments!) He put some under the PICC line dressing to relieve the itching. Doing that caused him to get an infection. He got really sick and ended up in the Huntsman Hospital. They admitted him to the Huntsman Hospital this time because his white blood count was almost zero. He was admitted on Thanksgiving Day. It was our year to go to the Webster's for Thanksgiving, so he told me to take the kids to dinner and he was going to drive himself to the ER. I didn't want him to take himself, but he really wanted me to take the kids to his Grandma's for Thanksgiving. He had decided to go in because of a fever he had that hadn't gone away for a few days. His doctors had told him that if he ever got a fever over 101 that he needs to come into the hospital. He missed Thanksgiving and ended up in the hospital for 16 days!!

It was a very depressing time for Jonas because he felt ok other than a fever that would not come down. He was so bored and felt like he was going crazy being stuck in the hospital for so long. The first 7 days he needed to be there to get his bacterial infection treated and he also had a fungus in his throat that needed to be treated. But after that it really became a waste of time. After 14 days they finally figured out his fevers wouldn't come down because of all the antibiotics he was on! They took him off two of the antibiotics and his fever finally went away. After 16 LONG days he got to come home. I think this is when they removed his PICC line so he would only have to worry about his PORT. At least he had been in the Huntsman for 16 days and not the University Hospital. Being in the Huntsman Hospital was like staying in the Grand America. It was fancy shmancy. The room was huge, the food was excellent and he could call any time of day to order things, and the TV and movie selection was fabulous. So I guess if anything positive came from this at least he was well fed and entertained!

Jonas was home for Christmas, which I had started to wonder about when he was at the hospital for so long. He felt ok in the morning, but as the day went on he started to feel sick.....again. This is the smile he put on for everyone that day....

......but this is how he really felt. Not that great.

My poor honey! He started to feel really sick by the evening so he didn't come with us to his Grandma's and Grandpa's to visit with his extended family. So now he had missed Thanksgiving with his family and Christmas with his extended family. Such rotten luck. Jonas stayed at his mom's house and slept while we all went to his Grandparent's house. This also happened to be the year of the horrible snow storm that came in on Christmas night. When I left Joe's grandparent's house it was starting to snow. When I got to Joe's parents house in Taylorsville, it was snowing even harder. Joe was too sick to drive home, so I had to do it. Driving at night scares me, so you can imagine how petrified I was driving home in a storm. My hands gripped the steering wheel for dear life the entire way home. I have driven in snow storms plenty of times, but I have never been in a storm that bad. There were some spots where it was a white out and I couldn't see anything. To make matters worse, Jack, who was three months old was screaming in his car seat. It was a horribly scary experience! When we finally pulled into our driveway a hour later, (Taylorsville to West Bountiful is usually a 20 minute drive) I started crying because of how scared I had been and my hands were numb from gripping the steering wheel so tight. I was so thankful we had made it home safe.

Jonas was better by New Years Eve and the year 2009 was actually a really good year for Jonas' health. I will post on that year next time.

Finding My New Normal

"Finding your new normal". This is something you will often hear if you have lost a loved one.  As I sit and think about this statement, I find it a very bizarre statement but nevertheless a very true statement. Bizarre because normal is not "new". Normal is comfortable, reliable, relaxed. There is nothing new about normal. It is old, it is normal!


But, you have to find a new normal because your "old" normal will never again be the same. Things will always be different. Your life will never ever be the same or in other words, "normal." So, the day your loved one dies is the day you begin your journey of trying to "find your new normal". It is not a journey I would wish for anyone.


I am eight months into this journey. Eight months! I can hardly believe my honey has been gone for eight months. It feels like he has been gone forever and yet it feels like it just happened. How am I doing after eight months? It really depends on the day. Life is still a huge roller coaster. I can be completely content and happy and then a thought crosses my mind or someone says something and my mind floods with memories or future memories we should have had. It's not even things said directly to me that get me down, its the things I overhear. It's the "I love you honey" or  the "I will talk to you later". It's the "daddy's home" or "hi daddy" that really makes my heart take a dive. It's the child running to his dad for a hug or the husband with his arm around his wife as they sit next to each other or stroll along the street together. It's the dad cheering his kids on at their soccer games or the husband taking his wife out for date night. But its their normal. It is not mine. It's what I am supposed to be doing, but can't because my normal changed on February 22, 2011. So how do we go about finding our new normal? Good question. Anyone, anyone, anyone? Bueller. Bueller. Bueller. Yeah, I obviously don't have a clue. But, we do a little of this...

I cheer Sam and Ben on at their soccer games.....

We go camping with fabulous friends....

I spend lots of volunteer hours being the PTA Treasurer, I taxi kids to lessons, I do homework, reading, and bedtime. I (sometimes) make dinner, I do laundry, clean bathrooms, and work on de-cluttering projects. I go grocery shopping and referee fights. I try and keep the garage organized and the yard looking nice. I wash the car and pump up bike tires. I play games with my kids and have family prayer.


Reading over this list, life seems pretty normal. Except.... its not because we do all of this without Jonas. So, I guess in conclusion, finding your new normal means going on with your normal life.... just differently.


 Well. That. Makes. Perfect. Sense.


Lucky me though, I have a wonderful dad that helps me with yard work and car washes. Brother-in-laws that fix things, install new things in my house, and play with my kids. Sisters that babysit all the time for PTA meetings, appointments, and alone time for myself. I have Joe's family who are always so concerned about me and are always willing to help me anytime I need it.  I have an amazing mom that helps me with everything I can't do on my own (which is a lot) and neighbors and friends that care about me and help me with finding that "new normal" I am searching for. I couldn't make this journey alone and for all of you I am truly grateful.


I suppose I will continue to do my normal things......just a little different.

A marvelous time, a BIG crash and burn...

So I went on the most fabulous girls trip with some good friends of mine. We laughed, we talked, we laughed, we talked.....seriously so much fun! And we just happened to be at the happiest place on earth....yup.....I was in Disneyland. Without my children! It was such a different experience. I love Disneyland and I love being there with my kids. I actually felt pretty guilty going on a trip to a "kid" place without my kids. But I really had a blast and got to experience Disneyland in a way that you just don't get to do when you have kids. I got to go through ALL the shops and there are lots of them! I got to eat with adults which meant I was having "adult" conversation and I was enjoying ALL my meals. It was quite heavenly. I ate at restaurants that I didn't even know they had and the food was wonderful. I got to go on rides that my kids never want to and I went on space mountain three times in a row! I love browsing through stores and one day I spent two hours just wandering. It was awesome. I thoroughly enjoyed myself. But then.....I had to come home.....and its been rough.


Of course I missed my boys and I was so happy to see them. But coming home to reality kind of sucks. I started to feel it on the plane. We left California in bad weather and came home to Utah in bad weather. It kind of set the mood for my "return to reality." I haven't had much motivation to get things done. My suitcase is laying on my floor still packed, I finally did a load of laundry tonight because I had to, my kitchen is in disarray, I have been doing lots of crying but not much of anything else.


 I did, however, put up Halloween decorations. I did more decorating this year then I ever have.....I think because I am still trying to avoid getting back into my routine of doing everything alone. Jonas loved Halloween and I think he would have really liked the decorations I did in the house this year. I miss him so much. Is it possible that I still can't believe he is really gone? Will I ever believe it?  I sit and re-live the last three months of his life and I still don't believe it really ended with him dying. He always pulled through when he was so sick. The doctors always made him better again. He was never 100%, but he got through it. How is it possible that he didn't make it this time? I just can't believe it. I don't want to believe it. It's just way too hard and way too sad.

Mayo Clinic part 2

To read part 1 click here


I guess I am finally going to force myself to finish our Mayo Clinic experience. It has been hanging over me since I wrote part 1 and I really need to get it out of my head.


Jonas was admitted to the hospital in the early morning hours of April 4th. Late in the afternoon of April 4th they admitted him into ICU. His electrolytes; (examples of electrolytes are calcium, magnesium, potassium, and sodium) were jumping all over the place. They felt he needed to be monitored more closely until they got them regulated. Electrolytes keep the body's balance of fluids at the proper level and help maintain normal functions, such as heart rhythm, muscle contraction, and brain function.


Jonas was released from ICU in the evening of April 5th. He had spent a little more than 24 hours there and they were able to stabalize him  and felt comfortable about sending him back to his 7th floor room.


Joe's mom flew in on Saturday which I was so grateful for. She stayed with me in the hotel and we took the shuttle back and forth to the hospital together. It was such a relief to have someone else with me that could help me remember all the medical tests the doctors were going to do, to help me remember what questions to ask, to have someone to share this hard time with. I am so glad she came. Jonas was so depressed at this time and was so frustrated that no one knew what was going on with him. To say the least, he got pretty grumpy and onery at times! I am so glad Kathy was there to help me and Jonas through those days.


Kathy kept an online journal while we were there. I wish I would have done that! But here is what she said on Saturday, April 5th:

4:30pm - Dr. Tong came to discuss the planned testing and scheduling.  He was as thorough and upfront as he could be.  He told us of the Doctor’s and their specialties that had been to see Jonas or were on the team.

Doctor teams are:

*Primary (Internists) - Dr. Agrwal, Dr. Wilson Tong, Dr. Khan, Dr. Gill, Dr. Schuster,

   Dr. Bravo

*GI - Dr. Miller

*Hematologist - Dr. Prommer

*Endocrinologist - Dr. Cook

*Infectious Diseases -  Dr. Vikram

*Allergenist/Immunologist - Dr. Lewis

Much testing will be done including some repetitive testing of SLC’s if needed.  Possible tests include: Bone marrow, sinus scan, broncoscopy, colonoscopy and more blood tests.  There are other tests but I just can’t remember them.  Dr. Tong just came in and said they are doing blood tests that are going to require A LOT… I mean A LOT of blood and hopes a transfusion will not be necessary.  I (Kathy) stepped out to talk to Dr. Tong alone.  I told him how down and discouraged Jonas is and asked what I could do to help.  He said be prayerful… he is in God’s hands.  They are going to do all that they possibly can to get to the bottom of this.

Kathy did such a good job of summarizing our days in her journal that I think I will let her journal do most of the talking in this post. :)

Monday, April 7, 2008

12:00pm - Brit and I arrive at the hospital to find Jonas eating lunch and in good spirits.  Once more,  Dr.  Tong (internist), was in to see Jonas before we arrived.  Dr Cook (endocrinologist), came in to discuss Jonas’ sugars and says he is doing well with his diabetes.  About 1/2hr later, Dr. Karlin (hematologist) came in.  She is working with Dr. Prommer and discussed and asked lots of questions pertaining to tests that were done in  SLC.  They going to do a bone marrow biopsy tomorrow.

2:45 Dr. Argwal (Head Internist), came in and she as well as the other Doctors are requesting test results from SLC doctors.  They are having a hard time getting them which makes me mad because it is so important.  If by tomorrow they don’t receive the test results they need we will see what relatives in SL can do to expedite this.  Otherwise…. they are going to have to redo some of these tests which are not fun (colonoscopy, endoscopes and  possibly the broncoscopy).  Dr. Argwal suspects that the Micro Bacterium could be in his gut which is causing his diarrhea.  He was diagnosed with the Micro Bacterium  through his broncoscopy in SL back in July of 2006.  They told Jonas at the time that it wouldn’t affect the bowel but Dr. Argwal said that there is a certain Micro Bacterium  that does. This all stems from something in the immune system that they need to get to the bottom of.  Of course this is all speculation until they get test results.  Micro Bacterium is hard to get rid of and Jonas has been on a cocktail of 4 different  antibiotics since diagnoses.  They are worried it has returned.  

4:00pm Jonas, Brit and I went for a short walk then back to the room for Jonas’ dinner.   Jonas had his first meltdown which I knew was coming sooner or later.  He vented his emotions.  I know he is frustrated and scared.  My heart aches for him.  I told him he  could vent at me anytime that he wished.  It was hard to hear though.  At 6:30 Brit and I took the shuttle back to the hotel.

Tuesday, April 8, 2008

11:00am - Jonas wasn’t in the best of spirits.  It was almost a repeat of the night before. Bless his heart.  He is struggling.  But we are doing our best to keep him up.  I believe there were more doctor’s in and out of his room today than any other day since I’ve been here. Two kidney specialists, doctor Cohen and doctor Kekich came into see Jonas.  They think the kidneys are fine.  Everything is pointing to an immune deficiency and they just need to see why.  Tomorrow he’s scheduled for an endoscopy.  He had one done in SLC and the doctors here wanted to see the slides to avoid another endoscopy.  But somehow the slides were lost in SLC.  Again, 6:30pm Brit and I left  the hospital.

This is pretty much how each day went at the hospital. Doctor after doctor would be in to ask many many questions. We had to re-tell his medical history so many times. It was quite draining and frustrating to constantly be repeating ourselves. I know it was a necessary thing though and that they were just trying to solve the medical mysteries of Jonas Webster. (Jonas was called a medical mystery by the doctors in Arizona and Utah). They put Jonas on TPN on Wednesday, April 9th. TPN stands for Total Parenteral Nutrition. Jonas' body had literally been starving to death. He was diagnosed with malabsorption which meant most of the food he ate was going straight through him. His body had not been absorbing any nutrition for several months. Although he had to have been absorbing at least a small amount of carbohydrates because when his sugars got low he was able to drink juice and it would bring up the sugar levels. The TPN would feed his body the essential nutrients and calories it needed to survive.

Thursday, April 10, 2008

11:30AM Brit and I arrive at the hospital and was pleasantly surprised to see Jonas in GREAT spirits and even smiling.  Wow that does my heart good.  He’s doing well on the IV nutrition supplement.  His sore throat could be caused from the oral potassium they’re giving him on top of the potassium IV, so they are stopping the oral.  One thing I believe I have failed to mention is that Jonas is always cold and is continually asking for pre-warmed blankets.  His thyroid is way out of whack which is causing the coldness.  Dr. Agrwal came in to see Jonas shortly after Brit and I arrived.  We discussed several things including his Sinusitis.  He’s got a bad case of it and she  suspects by looking at the cat scan results that he’s had it a while.  He may have surgery for that.  This very well could be the cause of his headaches.  On a lighter note, Dr. Agrwal said that Jonas has probably broken a record for the most blood draws in the hospital.  She said they have easily quadrupled the 18 tubes that were drawn at the Mayo Clinic on his first day.  We all had a chuckle over that one.  At 1:30pm Dr. Whitaker (endocrinologist) came in to discuss Jonas’ sugars.  They’ve been going all over the  board, mostly below normal. They are taking him off his insulin pump because he is  getting insulin through the IV nutrition.  This is a concern for Jonas as it has been his appendage for 10 yrs.  He is also getting his thyroid med through the picc line.  Picc stands for peripheral inserted central catheter.  Having the picc eliminates many of the pokes for blood draws.  There are a few that they’ve had to poke into a different vein or artery.  Not sure why.  He can have this picc line for several months with dressing changes every 3 days.  3:00pm Jonas took a long nap.  At 6:15 Brit and I took the shuttle home.  We left Jonas in better spirits.

At this time the doctors were coming to the conclusion that Jonas had CVID (Common Variable Immune Deficiency).

Common variable immunodeficiency (CVID) is a disorder that involves the following: (1) low levels of most or all of the immunoglobulin (Ig) classes, (2) a lack of B lymphocytes or plasma cells that are capable of producing antibodies, and (3) frequent bacterial infections. A diagnosis of CVID is reserved for those with an undefined B-cell dysfunction.^[1]

CVID is diverse, both in its clinical presentation and in the types of deficiency. Although decreased serum levels of immunoglobulin G (IgG) and immunoglobulin A (IgA) are characteristic, approximately 50% of patients with the deficiency also have diminished serum immunoglobulin M (IgM) levels and T-lymphocyte dysfunction. About 20% of those with CVID develop an autoimmune disease.^[2]

Signs and Symptoms of CVID include:

• Hypogammaglobulinemia: low levels of immunoglobulin G (IgG), immunoglobulin A (IgA) and/or immunoglobulin M (IgM).
• Poor titer response to vaccination with polysaccharide and protein antigens (e.g. pneumococci, tetanus, and diphtheria).
• Recurring infections involving the ears, eyes, sinuses, nose, bronchi, lungs, skin, GI tract, joints, bones, CNS, paratoid glands, etc. These infections respond to antibiotics but recur upon discontinuation of the medications. Bronchiectasis can occur from severe and recurrent lung infections.
• Viral infections that usually respond to antivirals.
• Enlarged lymph nodes, Enlarged spleen.
• Fatigue.
• Abdominal pain, Bloating, Nausea, Vomiting, Diarrhea, Weight loss.
• Malabsorption.
• Helicobacter pylori, Giardiasis, Cryptosporidiosis, Small bowel bacterial overgrowth syndrome, etc.
• Atrophic gastritis with pernicious anemia and achlorhydria.
• Nodular lymphoid hyperplasia of the GI tract.
• Villous atrophy of the small intestine, which can resemble celiac disease.
• Inflammatory bowel disease.
• Aphthous stomatitis.
• Increased intestinal permeability.
• Polyarthritis, or joint pain, spread across most joints, but specifically fingers, wrists, elbows, toes, ankles and knees. In some cases, Mycoplasma can be the cause.
• Children may show a "failure to thrive" - they may be underweight and underdeveloped compared with "normal" peers.
• Candida infection of the lungs.
• Anxiety and depression, usually as a result of dealing with the other symptoms.^[6]

(All the ones I highlighted in red were symptoms Jonas had.)

There were some tests that had to be sent to Pittsburg that would verify if Jonas did indeed have CVID, 

but all of his doctors were leaning towards that diagnosis. I left to come back home on the night of

SaturdayApril 12th. I felt so guilty about leaving Jonas, but I had been away from our boys for 12 days 

and I needed to get home to them. Again, I was so incredibly thankful to Joe's mom Kathy that she was

willing and able to stay with him until he was released.

Tuesday, April 15, 2008

Got to the hospital around 12:00pm.  Jonas was not on tpn (total parenteral nutrition) so he was feeling weak and tired.  They are doing it for some type of test.  I can sure see where it helps him.  He just needs so much nutrition.  Well… Dr. Tong came in to  give us some bad news.  Seems that he has been making effortless phone calls into SLC up to the University of Utah Hospital’s doctors to get one of them to follow-up on Jonas’ tpn when we land.  It’s critical stuff and he can go without it up until the next morning after arriving in SL.  He has not been able to reach anyone yet that can help.  How frustrating is that.  Unbelievable!!!  So as family… we are making calls to get Jonas into someone within his insurance network and it’s best if we can stay with the U of U network.  Jonas is beyond frustration and I’ve tried to calm him to the best I can since I’m so frustrated too.  I did leave him with a smile on his face at 8:00pm.  I just about fell over myself onto a chair and then onto the floor because I was so heavy weighted on my right side with my laptop strapped over my shoulder.  I just bent over  to pick something up and well….. Yup… I just about biffed it.  I really think that’s the biggest smile I’ve seen on his face since being here.  Even a broken arm would’ve been worth it to get a laugh.  It’s 9:15pm here at the hotel and I’m just about ready to turn in.  So… until tomorrow…..

Jonas was released on Thursday, April 17th.

Thursday April 17th

Arrived at the hospital around 9:00am and realized that I had forgotten Jonas black “U” baseball cap.  Oh know!!!!  The shuttle driver (Victor) had already left so I called them to finagle something to get it back.  Unbelievably, Victor returned with the hat and just dropped it off.  I missed him so I didn’t get to tip or thank him.  Hilton Homewood Suites has been awesome.  I’d stay again anytime.  I need to send them a thank you.   I’m thinking of sending them a “Designer cookie” gift.  Now, back with the hospital, arrangements were being made to release Jonas.  This hospital is incredible in how effective and organized they are.  Every base was covered including the nurse that would be waiting for Jonas at his house to give him his TPN.  Tearful goodbyes were  said.  I’m so thankful for these doctor’s and all that they’ve done for Jonas.  He weighed out at 110 lbs.  He has a long way to go but I’ve got faith that all will go well.  He will be on the 1700 calorie per day TPN regiment for at least 3 months.

We arrived at the airport around 11:45.  Our flight takes off at 1:15pm I believe.  Arrived in SLC around 3:30pm.  Jonas was worn out bless his heart.  It doesn’t take much.  We were greeted by Brittney and the boys.  It was cool how that happened.  Jonas, the guy that was pushing his wheelchair and I got on the elevator and dropped a  floor.  As the door opened… there sat Jonas’ little family.  What a great reunion that was. 

I clearly remember when those elevator doors opened and we happened to be sitting on a bench right next to the elevators. We didn't even know he was on the elevator right then. He looked so frail and worn out, but he had tears in his eyes and he was so happy to be home. Sam and Ben gave him a hug and Jonas could no longer hold back his tears. He was still so sick but at least we (kind of) knew what we were facing and that for now the TPN would eventually start to make him feel better. We once again had hope and that was what we needed to get through the next few years. With hope you can get through anything. When Jonas arrived home he saw what our neighbors had been doing for us. We live in an amazing neighborhood and I have the most wonderful friends. I will post about our homecoming soon....


(Note: I was just looking over this post and I think because I did so much cutting and pasting it has made the fonts and sizes very crazy. I have been trying to fix them, but it won't let me. So sorry about the messy looking and hard to read post! Every time I try to make the fonts bigger it changes them back when I publish the post. The same thing happens when I try and change the font. It is driving me crazy so I guess I just have to leave it the way it is!)