August 22

I continued The story about Calev on my other blog- if you want to read it, just click on the link that says "Rachael's space". He's doing great. He just got back on Friday from 5 days at cub scout camp. He had so much fun- this year, being a Webelo 2, they took a five mile hike up Blackcap mountain, and camped overnight. He brought a camera with him, and took 2 rolls of pictures while he was there. I love looking at pictures that kids take- they're so different from ones Richard or I would take as adults- Kids have such a unique perspective.


A couple weeks ago, we went to EMMC for Calev's echocardiagram, and appointment with the cardiologist. It all looked great- no sign of Marfan Syndrome, or anything at all with his heart (except for an innocent murmur). That made us very happy!! At this point, we can pretty much say he definately doesn't have it. There's no specific test for it- they basically look for certain signs, and diagnose based on that. To get a diagnosis of Marfan's, you have to meet 2 major criteria, as well as a certain number of minor criteria. The major criteria are skeletal symptoms , (like arachnodactly, double-jointed, extra tall, and extra-long bones) Cardiac symptoms (aortal dilation, etc), genetic predisposition, eye problems (specifically lens detachment I think), there may be another one- I'm going on memory here. But basically, Calev doesn't have a single one. He does have one of the minor criteria, which was the spontaneous pnuemothorax, but that's it, and not enough to diagnose a connective tissue disease like Marfan's. His doctor still wants us to keep Calev's appointment with the geneticist, and ophthalmologist, though. I don't really see why, but then, I'm not the doctor...


Since his hospital stay, they put him on an inhaler that's a topical steroid. At his recheck appointment several weeks later, his peak flow was still at 200-240. His doctor said it should be up around 350 at his age/size, and was hoping that inhaler would help, and bring it up. Now thay added Singulair to the mix, and we'll see how that goes. They also ordered a Pulmonary Function Test (PFT) to make sure there's nothing else going on. We just went for that on Monday morning. I really want the results, but don't know if they have them yet. I'm glad they did that test- Richard and I had just been commenting that Calev had a lung issue, and it seemed like they were setting him up with a specialist for everything except for his lungs!!


Really, though, at this point I'm not worried. Sometimes these things happen spontaneously, and there just isn't a reason, or at least not a reason that has any lasting effect.





Now that summer is drawing to a close, at least here in Maine, we're doing as much as we can outdoors. We went to Popham Beach yesterday, which was a lot of fun for the kids. Ezra eats an amazing amount of sand there- He actually just uses his shovel like a spoon, and shovels it in. I try like mad to keep him from eating it, but when you're stitting there on acres and acres of nothing but sand, it's virtually impossible. So, I see it in his diapers for a few days afterwards- and let me tell you, sand is HARD to get off with a wipey!!

Beginning of our summer

Over the past couple of months, things have been pretty crazy. Things always seem crazy, but instead of feeling just BUSY, it’s more like I’m consumed. It’s the only way to describe it. While some things seem to start to return to normal, other things come up- so goes life I guess.
One good thing is we’re completely moved, and we have rented out our house in St Albans. One less thing to think about. It’s our first experience being "landlords"- it’s weird trying to pick someone to live in your house- especially a house you did so much work to, and actually care about. Doesn’t help that St Albans doesn’t exactly produce a large pool of prospective renters- being in the middle of nowhere, 45 minutes from both Bangor and Waterville. But, we’re happy with who moved in.
Moving itself seemed like a daily fiasco- as far as finding a house we liked , and the whole mortgage/closing process. It almost seemed more stressful than it was worth at times. I guess that’s the way it goes, right? I heard buying a house never goes smoothly. And mortgage brokers- ugh. I’ll be happy to never talk to one again. They’re no different than the stereotypical used-car salesman. But, luckily, that’s over too.
There’s a lot more I can go into as far as moving, and some of the craziness going on up in St Albans, especially with my mother-in-law, who , to put it very nicely, is one of the most vile human beings I have yet to meet, but I’ll save all that for another time. All I’ll say right now is that I have an amazing husband, who I have a lot more respect for after seeing how he handled all he’s been put through over the last several months. Everyone tells me I got the one with all the looks from the Haviland bunch, but I think I got the one with all of everything. Those of you who have met Richard know what I’m talking about- he’s just the kindest, most easy-going, hard-working guy ever, and the best father in the world.
Anyway, in the middle of all this, Calev has been having some health issues. He’s always had asthma, which seems to have gotten milder as he gets older. As a baby/toddler, he was using a nebulizer all the time, and we had several ER trips over the years. But over the past few years, he rarely needs to use his inhaler. He only starts wheezing if he has another virus or infection like a cold or strep throat. Otherwise he’s fine, which is most of the time.
Around the 3rd week of June, he started getting a cold- no big deal- we had him using his inhaler about 3 times a day just to make sure he didn’t start having breathing issues because he was coughing a little, along with his runny nose. On Sunday, we went to a friend’s house to help out with some gardening, and Calev was hanging around the pond feeding the trout, and catching frogs (he had a bucket with about 30 frogs in it, along with a big bullfrog!!). He was wheezing a little, so he used his inhaler, and otherwise seemed happy and active. Around 1ish we were getting ready to leave. While we were eating lunch, Calev said he didn’t feel well, and that his chest was hurting a little. He was going to stay longer, and go fishing with Richard, but we decided to head home instead so he could relax, etc. So, we hopped in the car and headed home. Home from where we were was about 45 minutes away, along back roads through tiny towns. About 10 minutes into the ride, Calev started complaining that his chest was hurting a little more, and his wheezing was getting worse. I didn’t worry too much. We thought we’d get home, see how he was feeling, and if we thought it was necessary, we’d head over to Urgent Care (it was a Sunday) and Richard would stay home with the two little ones. Calev was okay with that- he said he wasn’t too bad, thought he’d be okay with his inhaler.
That didn’t last long, though. Maybe 10 minutes later, he said it really hurt to breath, and that his chest was really starting to hurt. I was watching him in the rearview mirror, and he was starting to not look so good. I quickly did a mental estimate of how far we were from home (a ½ hour), how far we were from the nearest emergency room (about 35- minutes) and how far it was from home to the ER (about a ½ hour). We could be at the Er in a ½ hour. If we went home first, it would be at least an hour. Was it really that bad to warrant an ER visit? Maybe we just needed to get home, and rest? Was he just panicking, or was he really having trouble? He seemed pretty normal a little while ago- he’s never gotten bad that quickly before...
All that went through my head in a matter of 3 seconds, and the conclusion I came up with was "drive faster". I looked down at the dashboard, and saw the gas light come on. I looked in the mirror again, and saw Calev with a pained look on his face. "Are you Okay?"
"No. I feel like it’s getting worse." Okay, I turned around, and decided to head straight to the emergency room. But I had to get gas first. We were literally in the middle of nowhere, and I was kicking myself for not getting gas earlier when I had thought about it.
After we got gas, I just headed to Pittsfield, which was the closest hospital, even though it was tiny. Calev at this point was complaining a lot more, and I was getting really concerned. I was driving about 75 mph, just trying to get there as fast as possible, and watching Calev in the mirror, trying to reassure him we were almost there. He started crying, and saying "I can’t breath. My chest hurts. It’s getting worse" Richard went into the back to sit with him, I started to get that panicky feeling. He was clutching his chest, and looked pale, and just really bad. He was taking really short, shallow breaths, which sounded very wheezy. And he just had that look- that sort of pale-bluish, lacking oxygen- it’s hard to explain- it just wasn’t good.
I looked at Richard "What should we do? Should I stop and call an ambulance, or keep driving?"
We decided to keep driving, because we didn’t think an ambulance would get to where we were any more quickly than we’d get to the hospital. Also we noticed we had no cell signal where we were, and were near no houses, and miles away from any stores.
At this point, I could feel myself getting more into panic mode, and had to fight to keep my head clear and just drive. I was trying to run through the steps in my head for CPR, because at this point I thought we might need it. The thought entered my head that he could possibly die, and I have to say, it was the most horrible feeling in the world. And I just felt so helpless, because here we were, in the car, in the middle of nowhere, and all I could really do was drive as fast as I could, and get there. Richard was sitting with him, and talking to him, trying to keep his anxiety level down so that his breathing didn’t get any worse. At this point though, it was his chest pain that worse. He couldn’t even lean back slightly because it hurt so badly, and made breathing more difficult.
Anyway, we got there. I ran in with Calev while Richard parked the van with the kids. There was noone around inside. It’s a tiny hospital. So I just rang the little bell until a woman came out looking rather annoyed. When she saw Calev, though, she called for triage right away, and they got him in. The first thing they did after listening to him is give him a shot of steroids in his muscle, and give him a nebulizer treatment. When they listened to him again, they said his lungs sounded much better, and along with the steroids, he should be fine. He was still in a LOT of pain, so they did a chest x-ray. That came back looking clear. In the meantime, though, he was still crying because his chest hurt so badly. He still could only sit straight up because moving at all made breathing difficult, and made the pain worse. The doctor basically said "well, his radiograph is clear, and his lungs sound clear. He may have pulled a muscle" So they gave him some tylenol and ibuprofen, and we sat there and waited another 45 minutes or so. When they checked in again, his pain hadn’t lessened any. He was in more pain than I had ever seen him in. I knew something wasn’t right, but it seemed like the doc and nurses thought he was just complaining. Granted, kids complain, and they don’t know him, but this wasn’t Calev- something else was going on. She seemed ready to discharge us, but Calev was still crying, and in just as much pain as he was in the car. His face also had a swollen look- his jaw line was basically gone. The doctor checked him over again. She started palpating his chest and neck. He was yelling when she got to his neck/ collarbone area. Suddenly she looked at me and said "whoa! I feel crepitice!" She said she thought he may have a pneumothorax, and sent him to get an immediate MRI. Crepitice is the feeling of air under the skin, which feels sort of like rice crispies. A pneumothorax is the medical term for a collapsed lung.
I got a little scared at that, and sort of confused too,. I’m used to dealing with animals, and the only times I have seen a pneumothorax, it was related to trauma, like getting hit by a car. It’s a medical emergency, and we have to place a chest tube in the animal under anesthesia to keep the air from building up around the lungs to that the lungs can expand again. How the heck could he get a pneumothorax?? But, it made sense with the symptoms he was experiencing.
Once the MRI confirmed that he did, in fact, have air in his chest outside of his lungs, the decision was made to transport him by ambulance to Eastern Maine Medical Center in Bangor, because it was a much bigger hospital, had a pediatric unit, and he could get more appropriate care there.
And for now, I’m out of time to write any more, so I’ll let you know the rest of the story later.
Calev is fine right now, though. Back to normal, and having a great summer.