huh?

So, I realize that we have been pretty absent in the blog world. I know this because I've gotten lots of questions about my facebook statuses (or would that be stati?) Lots to tell you, so go get a drink, run to the bathroom, grad a snack... I will break this up into "Parts" - which are kinda like chapters, but this isn't a book and chapters seem to indicate that you may never navigate away from this page. Here goes.

PART 1:
Jonas' final diagnosis in the hospital was bronchiolitis...viral infection in the bronchials. Symptoms were classic of this virus. After we resumed our normal routine last Monday, I was talking to a co-worker who asked how Jonas was doing. At the end of the conversation, she asked me if we had ever had him tested for Cystic Fibrosis. Well, no, we haven't because we don't know ANYONE in either one of our families who have CF. Her husband has CF, and she was just wondering because Jonas had RSV in early December and then this bout with a respiratory issue. I think she meant well, but it put me into freak-out mode. I immediately googled CF and called Paul. We read and re-read the symptoms and saw how Jonas matched some of them...respiratory problems, low weight gain were the main ones. Jonas was to have a follow-up appointment with the Dr. that Wednesday (this is last Wed.). After the dr had listened to his chest and checked him over, she said he sounded great. I asked her about cystic fibrosis at the end of the appointment. She didn't seem too worried at first since Jonas had been sick at all the "right" times - meaning during the respiratory illness season. But, she said he did match the profile and ordered a test. To test for CF, they collect sweat and analyze the salt content. Right after the dr, Paul met us at the hospital where we had the sweat test done. There is a new pediatric pulmonologist in town (she is the only one in Lubbock) who came about a month ago and lowered the standards of the test. Therefore, what used to be normal was now borderline, etc. The new borderline started at 30, and Jonas was at 37. Since he was in the grey area, he had to have another one done. So, I took Jonas last Friday for the second sweat test. This time it came back at 42. I started getting worried. Paul was a little more calm. We finally were able to talk to the dr on Friday night (I need to tell you that this dr is filling in for our regular dr who is on maternity leave). She absolutely scared me. You see, while we were getting the first test done, the lab technician told us that in the last month 85% of the kids tested came back borderline or higher...that is a large number considering that only about 30,000 people in the entire US have CF. So, we were a little suspicious, but the dr pretty much refuted that. The dr told us that we either needed to have one more sweat test conducted or we needed to have a DNA test done. Over the weekend, Paul and I began leaning toward just getting the DNA test so that we would know for sure. We were really scared. On Sunday (after I had vowed not to look at the Internet any more), I found an article that discussed the types of sweat test that are used to detect CF. Wait a minute - types of test? I started putting the pieces of the puzzle together. Our lab report said that Jonas had been given the sweat conductivity test which has a different set of normal values. The more we researched, we realized that what it looked like was that the test given in the lab was being interpreted by the wrong set of of values - the sweat conductivity test was being interpreted by the sweat chloride values. So, Paul went to the hospital yesterday morning to find out some answers. He finally got in touch with the medical director of pathology for the hospital who was VERY concerned to say the least. He really thought that the lab report listed the right values but that maybe the test listed was wrong. The more he looked into it, he found that Jonas had in fact been given the sweat conductivity test NOT the sweat chloride test, and the numbers of 37 and 42 were sweat conductivity results. HUGE MISTAKE!!! So, Jonas is fine...we are so thankful! The medical director was so apologetic and was no doubt contacting the hospitals lawyers. There are many children who this would have affected, and we are the first to have caught the mistake. We think the pediatric pulmonologist lowered the standard based on the sweat chloride test not knowing that the lab couldn't even conduct that kind of test. What a crazy experience! Praise the Lord with us. We were pretty desperate and leaning toward devastation that Jonas may have this disease.

Part 2:
I have a new job! I have decided to leave my job as the Assistant Director of Admissions at Texas Tech to stay home with Jonas. There is a whole lot surrounding this decision. Most of the decision is because I want to be with Jonas, but there is also a certain amount of frustration that has gone unresolved with my job. I am really excited and really nervous. My last day is March 6. I will continue to work for my office as a consultant, so I will have some business contact. We are super excited to see what life looks like.

Well, you made it. Thanks for hanging in there. We are off to Houston this Thursday for some much needed rest and restoration. I am looking forward to having a Valentine's date with Paul! We'll post pictures soon - I promise!

home

Well, we've been home from the hospital since Thursday afternoon. Jonas showed enough improvement for the Dr. to release him. He is still having a little trouble breathing when he is playing...he breathes harder, more rapidly like he is out of breath, but he definitely feels better.
I have a few thoughts/observations about this whole experience...

1. We have amazing friends and family. Since we are so far away from our biological families, we rely on our friends to be family to us. They brought us meals, came to visit, texted and called, prayed, brought Jonas gifts, etc. We have experienced community at it's best.

2. Hospital "beds" make you VERY thankful for your own bed (that maybe you once complained about). The first night, Jonas wouldn't sleep in the crib, so we took turns holding him all night - that meant sleeping in a rocking chair recliner. The second night, we slept head to toe on the twin couch/bed.

3. If you don't have friends that bring you food, eating while in the hospital can be very expensive. I think it should be "on the house" since you eventually get a humongous bill for your stay.

4. We are so thankful for our health and the fact that Jonas is healthy...that he isn't fighting something more serious. Lots of the rooms in the Children's Hospital kept the doors open. When I would walk around just to get my blood flowing, I would see the little kids in the rooms and wonder why they were there. There was a parent who seemed like she had been there a while that we would see in the hall.

5. Our bodies can surprisingly function are very little sleep. We had hardly slept on Sunday night because Jonas was up a lot of the night. Then, Monday night he was up a lot and we finally left for the ER at about 4 am on Tuesday. We didn't go to "sleep" until probably about midnight that night. You just roll with the punches. We hardly expected to be admitted to the hospital when we walked into the ER.

6. I don't envy pediatric doctors and nurses. When they had to put in an IV into Jonas while in the ER, they tried at least 5 times in his arms but his veins kept collapsing. Even though we were really frustrated (and really sad that Jonas was so frantic), we could tell the nurse was really sad as well. Finally, they were able to put the IV into a vein in his scalp. This was by far the worst part. I don't know if it is as hard to stick an adult 4 or 5 times as it is to stick an 8 month old that many times. Our nurses were great and really cared for Jonas so well.

7. Jonas is so brave and was really good through this whole thing. He was confined to his bed, an exesaucer, and the recliner next to his bed because of the stuff he was hooked up to...IV drip, pulse/ox probe, and oxygen. He is normally crawling all of the place. He did really good to just play in the crib or sit our our lap and play. He fussed a little but not uncontrollably. We have a pretty good kid.

Here are some pictures of "discharge day"

"Welcome to the Hotel Covenant"

Tuesday morning Jonas woke up crying at 1:30am with a bunch of snot. Normally this wouldn't be a big deal, but he was taking short, shallow, fast breaths. I gave him one of his breathing treatments from when he had RSV this past December, but after an hour we were back in the same place again. The on-call pediatrician recommended that we go ahead and take Jonas in to the hospital. After the ER gave Jonas a couple of different inhalation treatments they admitted him to the hospital. Unfortunately, after 4 failed attempts to start an IV in his arms (torture for him and us!) they finally ended up putting it in his head (sounds worse than it is).

The blood and mucus tests that they ran to identify the typical virus culprits all came back negative. So, they've been giving him breathing treatments every couple of hours and have had him on oxygen to help boost the level of O2 in his blood. The Dr wants to keep him until tomorrow (Thurs) to see if some of the wheezing in his lungs will dissipate before releasing him.

He's in good spirits and we are getting sleep wherever we can, so hopefully we will be able bust out of this joint soon!