Over the past half year I have often turned to this text to remind me of where my focus should be when I am struggling to understand something that is put before me. We must always remember to put our faith and trust in the Lord, for He is always there, never changing and carrying us through each and every day.
Since I talked about Matthew in my last blog, and many of you have asked about him since then, I should probably provide an update so that I don't have to tell the same thing over and over ... isn't that the point of a blog?! :)
Although nothing has really changed in the past few days, our anxiety over the situation has. For those of you who know our family, you will know that we like to make sure the doctors won't run out of things to deal with (like that would happen), whether it is myself with headaches/TMJ, or was Marietta and her stomach, Rebecca and her bladder and then Justin and James are self explanatory ... so I guess we shouldn't be surprised that we have to do our doctor run with Matthew also. But this time around it's harder to take it in stride, even though we tell ourselves we're just making life more difficult by worry about things that are beyond our control ... especially when at this point it could all be absolutely nothing ... although that hope is slowly fading.
Yesterday I took Matthew in to see the pediatrician. He has completed the antibiotics which had stopped his coughing; a good thing I suppose. It ruled out the whooping cough, for antibiotics will not help the cough from whooping cough, but will keep it from spreading. This did dash our hopes for a simple answer. We're now at 10 days off antibiotics and will soon get the tell-tale on if the cold-like symptoms will stay away...this morning he did sound somewhat congested, and the last few days he's had a stuffed nose (new cold, or symptoms?) So the coughing stopped but his resp. rate increased: I seldom get below 70bpm now, and definitely don't get 50bpm anymore (used to get that occasionally).
So I called SickKids before I went to see the Pediatrician to see what they thought. They didn't really have any thoughts on an answer, but said to have an x-ray done and they will gladly see him. We are suppose to go there in a few weeks for James' autopsy results, so they've booked Matthew in to see him then, (even though it's not their clinic day) and told me to call if he needs to come in sooner.
Back to our appointment yesterday ... our Pediatrician heard a faint heart murmur yesterday. If he truly has heart issues it could put stress on his lungs and increase his breathing. He doesn't show any signs of heart troubles or distress ... but then he also doesn't show signs of breathing distress ... even though he's breathing so fast. Most heart murmurs are "innocent" - where it sounds like a murmur but isn't really. But we cannot ignore this murmur and need to take a closer look ... and a closer look means an Echo (ultrasound of the heart) ... and at his age that means a sedation ... oh the fun! :( The big thing we have to remember when dealing with Matthew is not to treat him like James or to just look at James' issues, but to cover the whole situation ... even though James and LPI PAP are our biggest worry.
With that in mind, she said we should do a retest for LPI. They are quite confident he does not have LPI, but given how rare LPI is, and that they really don't know when the signs of it actually show up, it doesn't hurt to test again. It is only a urine test and is not invasive, so it's no big deal to repeat the test, and we do feel it's a good idea as we are losing our confidence that he is truly LPI-free (even thought he appears symptom free at this time). I just hope I can accept the answer we get this time if it is LPI and if it's not to actually feel confident he doesn't have it. The only way to get the true guaranteed answer is to do a DNA Test - but he doesn't show any signs of LPI so there's no valid reason for the test.
So today I was off to Mac to have an x-ray taken and drop off his urine sample. While I was there I did some visiting and also made a stop to use a SATs monitor on 3C. Unfortunately the results on the first monitor only made me more discouraged as he came in at 94% (healthy you should be 98-100% ... if you have lung issues above 92% is okay). Since the Respirtory Therapist we dealt with when James was at Mac was not in, my dietician hooked me up with someone who works with her. While I did a few other things, she looked into whether they had a SATs Monitor that we could borrow for a few days to see if we could get a better idea of where Matthew is SATing throughout the day and night. The issue with the one we were using at the hospital is that it's just a spot checking one and so it isn't really a good fit on a small guy, so although the tracing was good on the machine, it's hard to be confident that it was completely accurate. When I came back she told me they didn't have any machines available right now, but there is one that is suppose to be returned and then we can use it for a few days. She suggested having an overnight oximetry test done (when they come out and test/record overnight the SATs levels) if we cannot get a machine soon. It would at least give us an idea of whether there is an issue and what his baseline is at. Before I left we got a different machine and tried again and this time he came in at 98%. So it's hard to say whether he was truly SATing lower before (very possible, as it does fluctuate) or whether we aren't getting good readings. She said she would contact our Pediatrician to let her know the readings we are getting. We'll wait for a bit to see if we can get a machine at home, otherwise we'll have to consider the overnight oximetry.
So we'll hear back on the x-ray shortly if there's anything of concern. The urine test will take about a week to get results on. Our Ped is trying to get the Echo done before we go to T.O. so we have a better indication of whether the heart is an issue, but realistically I'd be extremely suprised if that actually happens. But I really cannot complain, for all the doctors/nurses/etc that we have talked to have been very helpful and quick, for which we are very thankful. We are thankful we know the system, how a lot of it works and who to talk to ... we just rather not be using it.
I ended my last entry by saying 90% of us says nothings wrong with Matthew. I'm afraid that number has changed drastically, I'm not even sure what it's at right now. There is something wrong, whether it's serious or not is now the bigger issue. I really shouldn't blog when I'm discouraged so I'll stop, get some sleep and wake up brighter tomorrow.
"The Lord is my strength and my shield; my heart trusts in him, and I am helped" Psalm 28:7