The other evening, Shawn and I were up late (okay, 9pm counts as late for us!) and a show called "Mystery Diagnosis" was on TLC (The Learning Channel). It often showcases people that go through journeys with medical conditions that are hard to figure out by doctors because they are rare or mistaken for something else. Well, Sunday night, there was an "episode" about a tiny baby boy that from the moment he was born was irritable, fussy, and cried all the time. He had violent vomiting and
diarrhea for an infant and doctors kept shrugging it off as a virus or food allergy. Besides the
vomiting, the case sounded extremely like Logan's- a very fussy, inconsolable, sick baby that doctors were simply ignoring the parents. I really felt empathy for those parents and Shawn and I both kept saying how mad it made us that we were made to deal with stuff for so long with Logan. It was unacceptable, yet as parents trying to do our very best, we didn't know what else to do.
Most of you know Logan's story and I don't have enough time or energy to relive all that, but what really burdens us these days is the guilt we feel sometimes for not "firing" his
pediatrician sooner. We both also struggle with anger sometimes over what we went through with him and how little we were helped and were even ignored or shrugged off as over-protective or over-reactive parents. When Logan was born, he immediately was a different child than his older brother. He came out screaming with a vengence that we had never seen before. He was inconsolable and spent much of his hospital time in the nursery because he simply exhausted us with his wailing and fussiness. His pediatrician at the time put him on a medicine to fight off infections and would tell us that that was the reason he was so fussy because the medicine was making his stomach irratable. And, when asked questions, he didn't have any straight-forward answers for us or even refer us on. Finally when Logan was about 6 months old we started seeing the specialists that were giving advice in his case.
As most of you know, Logan's medical records became "LOST"???? in the midst of all these questioning times and that was when we realized that his doctor did NOT have the right objectives in treating Logan or he was WAY over his head and not humble enough to admit that he certainly didn't know what to do. And, looking back at the medical records that we are lucky enough to have, there is just an overwhelming amount of frustration and guilt that rushes over us as we again question if we did or are doing the right things. We have NO idea why Logan's gone through what he has, but it just seemed a little odd (looking back) that our neonatologist was painting an incredibly grim picture whereas when Logan was born, his ped doctor acted like he was a perfectly fine baby. He never once listened to us and how Logan was so much different than a normal baby. I thank the doctors up at Children's Mercy for really putting into perspective some of Logan's issues.
So, a couple weeks ago, Logan needed help in the bathroom to clean himself up. So, when he bent over, I saw a LARGE (size of my fist) dark bruise over the area where his kidney was AND it was on the left side kidney which has been known to be the worse of the two. As much as I wanted to panic, we had it so instilled in us from the moment he was born to NOT over-react and to not worry about things. What was weird was the fact that we could NOT see the bruise very well as Logan took a bath or was running around the house in the middle of changing clothes, so we hadn't noticed such a large bruise. But, when he bent over, it was VERY noticeable and I wasn't as concerned until Shawn told me that it was directly over the area that his kidney was, so like a normal, caring mom, I became a little worried.
Below are Logan's kidney scans when he was first born (vertical pics) and when he was 4 months old (horizontal pics). As you can see, a normal kidney would have just an outline of black to define that space, but his kidneys both had fluid in them, the left more so than the right, which was what caused so much ruckous before he was born.


So, upon watching this show about parents going through about the same thing, and researching some more, and the bruise on the kidney, I weighed Logan on our scales- he weighed 25 pounds! To put that in perspective a little bit- he's about 36 inches tall and weighs a little bit more than some one year olds! Usually when kids turn about a year old, they weigh 20 pounds, sometimes before a year old and sometimes a few months afterwards. And, since the kidneys play a key part absorbing important vitamins for growth, I'm wondering if we should do something more or have a renal test done again to see if his kidneys are getting better or functioning better than we were told they were.
We have a WONDERFUL doctor right now that has Logan in his care and he knows what we've been through in regards to losing records and going through frustrating times with the ped doctor. So, I'm wondering whether to let it rest and just be thankful that things are as normal as can be or should I raise concern based on the vague memory that a doctor told us a few years ago that Logan should have renal scans done every year to monitor the function- but . . . . somehow that information got LOST in the records as well as other vital information that pertained to the management of Logan's care. And, as Logan got so many new clothes for Christmas and is approaching another milestone birthday- YEAH 4 years old- it's becoming so much more noticeable that his size and weight difference isn't much more than his 10 month old brother.
Some say I think way too much, but I know that God entrusted these kids to Shawn and I to take care of them to our best of our ability and I'll be darned if I fail at that! Our kids haven't had a voice and for the first 3 years of Logan's life, I had to battle and fight for him to get the treatment that he needed to make him better (which thank the Lord, he is doing SOOOO wonderfully today!). So, I'm off my soapbox and theraputic writing for tonight. I'm hoping things become more clear and it becomes more obvious. I'd like for a doctor to just show us pictures of his kidneys now and say, "don't worry! these are perfectly normal! he'll have no problems the rest of his life with this." until then, I always have a hint of suspicion and worry that just maybe something might go wrong.