The escape mission was a success!!
No calls saying "wait, don't leave town yet", the weather cooperating and giving us the window we needed, and some very cooperative kiddo's helping mom and I get packed and our room cleaned up, made for a clean escape from Houston. Still, it wasn't until we saw the Buccee's sign in Madisonville that I allowed myself to breath a sigh of relief that we had, in fact, gotten away. The kids were sad to say goodbye to their friends, but we were all VERY excited to get on the road towards HOME.
I suspect I could now drive the length of I-45 from Downtown Dallas to Downtown Houston with my eye's closed. With a stop at Buccee's of course. We have our landmarks we watch for, including some I'd rather forget but Madison insists on pointing out EVERY SINGLE TIME!! 2009 was a rough year for traveling this route for us. First, we did it way, way too many times. Second, we somehow managed to have some mishap on virtually every leg of the 9 trips down, whether it was a flat tire, a tornado coming through the town a half hour before we drove through, or an accident that blocked the highway and had us sitting in one spot for 2 hours, there seemed to be something almost every single time. NOT memories I particularly hold dear, and I was pretty convinced we were jinxed. But, as Madison so wisely noted yesterday on our trip back, while pointing out the spot where we had our first flat of that year, it was not just the spot where we had a mishap, it was also the spot where we were graciously helped by a state trooper who happened to be off duty and still made sure we were taken care of and back on the road safely. Thanks Moo for reminding me that even in the midst of something cruddy there are blessings too. Mom won't complain next time you point out "our spot"...LOL.
Seeing the Downtown Dallas skyline never fails to send a rush through me on these trips. Even the short ones. It means we are officially HOME. Even hitting rush hour traffic as we merged onto 30 didn't phase me.....just a few more minutes and we would see our house, and more, we'd see Michael and the critters for the first time in 11 days. JOY!!! And it was OH so good to see the front of my house....to see my dearest husband peak through the blinds and see us pull in with a huge smile on his face....to see CoCo peak through and start wiggling with excitement. Love, hugs and puppy kisses ensued....followed by a quick unload of the van, unpacking of the suit cases, and finally, my butt parked on MY couch with a very happy pup laying across my lap.....BLISS!!!
So....we are home.....we slept in our own beds (the kids are still there as I type).....and now we just have to get back into our routine, whatever that may be. Mom made it home safely too and I suspect she was never quite so happy to sleep in her own bed last night.
Now onto the good news......cardiology called this morning and after the doctor did her own measurements, Chance's heart function was only down slightly and was much better than the computer numbers were spitting out. HUGE PHEW!!! Just goes to show how critical it can be to have a doctor that know's her stuff like ours. While mostly this was a small side worry, I am relieved to have the good news and not have to be concerned about this in addition to the other stuff.
However.....
The rest of the phone call was to tell me all the other testing we did was normal. Chest xray and all the labs were cold stone normal......which is GOOD, don't get me wrong, but it does take us "back to square one". I think I have mentioned my lack of love for square one right now.
We have, thus far in our journey been fortunate from a medical stand point, that typically the kids will "show" us something to work with. While it can be disconcerting and worrisome to have abnormal test results for sure, the reality is that it gives us clues to what we need to do to help them. Without them, we cannot make a plan or know what to do. Being in the dark is not a good place to be ALL the time, and thats a bit how I am feeling right now. For both Chance & Madison. Love me some normal labs when all is going well......not so much when we need to know whats going on.
So....sigh.....back to the drawing board.
We do have one more test cardiology recommended we get done, so I have to work on how to make that happen here if possible, or there when we go back next. Otherwise, I really don't know what the next step is with Chance. I will email all the docs involved at this point and see what they think and maybe a new direction will define itself. I am hoping we can get in with the pediatrician next week and get her help in the next step with both kiddo's.....AND see if my hunch is right and Abby has another sinus infection. It's just a good thing our pediatrician loves us!!! LOL
Square One it is.....at least being HOME and at square one is better for my psych :-)
Thanks for the prayers for safe travels, and for the continued prayers that we WILL at some point figure these kiddo's out!!
BIG hugs
Showing posts with label Weight. Show all posts
Showing posts with label Weight. Show all posts
Friday, February 11, 2011
Saturday, February 5, 2011
Held Up in Houston
Well.......we are here and will be till next Wednesday or Thursday now.
On the one hand, as jealous as the kids are of all you guys in Dallas getting to play in the snow, my thought is, your at the same time freezing your tushies off, so I am NOT jealous...not one little bit. We are cold here, and were supposed to get snow, but managed to just get ice...fun fun fun. But we are still warmer here than there, and for that I am thankful!!! We are missing the Old Man and the critters...a lot....but are being well cared for and loved here in Houston and are making the best of it.
While we knew earlier in the week that we were not going to make it out of town towards home today as planned, we thought we'd get out of here by tomorrow. However, the girls sleep studies (that were supposed to happen last night) had to be postponed and the best we could do is Tuesday night. We have accomplished all but those, so this will give us a couple of days of down time, which we really all need.
Thanks for the prayers for this week!!! We have felt them and appreciate them more than we can say. Since we are holed up here at the RMH today, I thought an update was in order since we asked for specific prayers and have some of the information we anticipated hearing this week.
Our pulmonologist was NOT too upset with me about the oxygen not being started yet, but it was reiterated that it's something we need to make happen. This was further enforced by the scale.....Chance was down 6 pounds since we saw them in November, even with the supplementation. While the pulmo is not feeling like the lower-than-we'd-like-to-see oxygen saturations are the WHOLE answer to Chance's weight loss, treating it with the oxygen at night needs to happen to see if it makes any difference.
Madison & Abigail will have their sleep studies and while we know we will be adding oxygen to Madison's bipap, we will see how things look for both girls and see where we need to go from here.
Our rheumatology visit went really well!! While one of Madison's knee's still has some fluid on it, he was pleased with her response to the steroid injections. After some talk about where we go from here, we got the exciting news that we might be able to try and wean Madison off her Methotrexate as early as this summer!! As long as she continues to do well, no more joints become involved, and the ones already affected behave themselves, we are good to try. If we can get her off the methotrexate and keep things stable with the injections and an occasional oral steroid pulse, it would be huge!!! All in all, it was a very good visit.
Halter monitor is done and now we wait and see if there is anything exciting to hear.
As I have already shared, unfortunately, Chance has lost more weight. I don't even know what to say about that. We are more than a little bummed. And concerned.
We saw our GI nurse yesterday and while I'd hoped maybe, somehow, the weight loss we had seen the day before at the pulmo's would have been a fluke, and more importantly, wrong, it wasn't. He really is down 4 pounds since his last weight check. Blech!!! Plan is to finish looking at other organ systems at this point, which means we have his heart left to look at. At this moment, he's scheduled for an ECHO on the 17th, but after talking to our pediatrician's office today, we are trying to go ahead and get him seen while we are here this week. We shall see.
In the midst of all this, we have had the chance to spend time with people we adore, and that so makes your heart smile even when things are less than ideal. Several of our friends have been at RMH with us, which always makes the "down time" funner when we are hanging around the house. We were able to spend the evening with the Andrew's, eating, laughing, and watching the girls have a BALL with their bestest girlfriend, Thing 9. We were able to spend an evening with the Parker's and were again reminded how freaky it is to have our twin family down here. Chance was able to spend the day visiting with Rachel, and the girls and I were able to meet up and spend the evening with the whole Adam's family, which always does the soul good. And we had a lovely brunch with Aunt Gayle, Uncle John, Margie, Ashton and precious Livi Lou!!! We discovered an amazing new dip we picked up at Bucee's on our way down, discovered an awesome place to buy pre-made gourmet food that is to DIE for, and ventured out long enough today to get SmashBurger's since we were all craving them!!! So we have been eating well too....LOL.
Unfortunately, the Mito Fun Walk was cancelled for tomorrow, meaning our easy access to see all our mito friends at once isn't happening, so hopefully we will get the chance to see a few others while we are here. Plans are slowly but surely being made to keep us busy until we finally get to head back home.
The kids are tired, but the down evening and day today have done them some good. Abby had a rough tummy & head evening tonight, but I am hoping she is feeling tons better when she wakes in the morning. Some more downtime tomorrow will be good for them.
Late at night, like it is right now, is when I miss home the most. During the day your distracted, but when it gets quiet, all are in bed asleep, and there aren't the distractions, the being away from home blues tend to hit. As always, Michael is holding down the fort well, and while CoCo acts as though she is miserable, I know she is happy to have had him home so much this week. I am blessed.....more than I can say....to not have to worry about things there. It's just hard to be away so much, and when the days turn into more than a week, well......
Hope all our friends and family in the snowy tundra of North Texas are staying warm and well. We miss you....just not the cold that is freezing your tushies off<grin>.
On the one hand, as jealous as the kids are of all you guys in Dallas getting to play in the snow, my thought is, your at the same time freezing your tushies off, so I am NOT jealous...not one little bit. We are cold here, and were supposed to get snow, but managed to just get ice...fun fun fun. But we are still warmer here than there, and for that I am thankful!!! We are missing the Old Man and the critters...a lot....but are being well cared for and loved here in Houston and are making the best of it.
While we knew earlier in the week that we were not going to make it out of town towards home today as planned, we thought we'd get out of here by tomorrow. However, the girls sleep studies (that were supposed to happen last night) had to be postponed and the best we could do is Tuesday night. We have accomplished all but those, so this will give us a couple of days of down time, which we really all need.
Thanks for the prayers for this week!!! We have felt them and appreciate them more than we can say. Since we are holed up here at the RMH today, I thought an update was in order since we asked for specific prayers and have some of the information we anticipated hearing this week.
Our pulmonologist was NOT too upset with me about the oxygen not being started yet, but it was reiterated that it's something we need to make happen. This was further enforced by the scale.....Chance was down 6 pounds since we saw them in November, even with the supplementation. While the pulmo is not feeling like the lower-than-we'd-like-to-see oxygen saturations are the WHOLE answer to Chance's weight loss, treating it with the oxygen at night needs to happen to see if it makes any difference.
Madison & Abigail will have their sleep studies and while we know we will be adding oxygen to Madison's bipap, we will see how things look for both girls and see where we need to go from here.
Our rheumatology visit went really well!! While one of Madison's knee's still has some fluid on it, he was pleased with her response to the steroid injections. After some talk about where we go from here, we got the exciting news that we might be able to try and wean Madison off her Methotrexate as early as this summer!! As long as she continues to do well, no more joints become involved, and the ones already affected behave themselves, we are good to try. If we can get her off the methotrexate and keep things stable with the injections and an occasional oral steroid pulse, it would be huge!!! All in all, it was a very good visit.
Halter monitor is done and now we wait and see if there is anything exciting to hear.
As I have already shared, unfortunately, Chance has lost more weight. I don't even know what to say about that. We are more than a little bummed. And concerned.
We saw our GI nurse yesterday and while I'd hoped maybe, somehow, the weight loss we had seen the day before at the pulmo's would have been a fluke, and more importantly, wrong, it wasn't. He really is down 4 pounds since his last weight check. Blech!!! Plan is to finish looking at other organ systems at this point, which means we have his heart left to look at. At this moment, he's scheduled for an ECHO on the 17th, but after talking to our pediatrician's office today, we are trying to go ahead and get him seen while we are here this week. We shall see.
In the midst of all this, we have had the chance to spend time with people we adore, and that so makes your heart smile even when things are less than ideal. Several of our friends have been at RMH with us, which always makes the "down time" funner when we are hanging around the house. We were able to spend the evening with the Andrew's, eating, laughing, and watching the girls have a BALL with their bestest girlfriend, Thing 9. We were able to spend an evening with the Parker's and were again reminded how freaky it is to have our twin family down here. Chance was able to spend the day visiting with Rachel, and the girls and I were able to meet up and spend the evening with the whole Adam's family, which always does the soul good. And we had a lovely brunch with Aunt Gayle, Uncle John, Margie, Ashton and precious Livi Lou!!! We discovered an amazing new dip we picked up at Bucee's on our way down, discovered an awesome place to buy pre-made gourmet food that is to DIE for, and ventured out long enough today to get SmashBurger's since we were all craving them!!! So we have been eating well too....LOL.
Unfortunately, the Mito Fun Walk was cancelled for tomorrow, meaning our easy access to see all our mito friends at once isn't happening, so hopefully we will get the chance to see a few others while we are here. Plans are slowly but surely being made to keep us busy until we finally get to head back home.
The kids are tired, but the down evening and day today have done them some good. Abby had a rough tummy & head evening tonight, but I am hoping she is feeling tons better when she wakes in the morning. Some more downtime tomorrow will be good for them.
Late at night, like it is right now, is when I miss home the most. During the day your distracted, but when it gets quiet, all are in bed asleep, and there aren't the distractions, the being away from home blues tend to hit. As always, Michael is holding down the fort well, and while CoCo acts as though she is miserable, I know she is happy to have had him home so much this week. I am blessed.....more than I can say....to not have to worry about things there. It's just hard to be away so much, and when the days turn into more than a week, well......
Hope all our friends and family in the snowy tundra of North Texas are staying warm and well. We miss you....just not the cold that is freezing your tushies off<grin>.
Monday, January 31, 2011
{Medical Monday: Houston Bound}
Off on another wild adventure for the McNair’s!! We head down today for the week and will get at least 8 appointments in while there…..actually a “light” week for us!! All three see Pulmonology on Tuesday, Madison will see her rheumatologist and be hooked up for a 24 hour halter monitor on Wednesday, and Chance will see the motility GI nurse and the girls will get sleep studies done on Thursday. Easy peasy…easy peasy.
Prayer requests for the week…..
That our pulmonologist is not too annoyed with me that we have still not started oxygen with Chance & Madison. There are a hundred excuses…..not one good enough….but I will spare you all. If I am honest, it’s mostly me struggling with the idea. I am still trying to wrap my mind around it. Reality is though, it might make a huge difference for the kids and I just need to get over myself and help them go into it with the right frame of mind.
That our rheumatologist finds a decrease in inflammation in Madison’s knee’s, indicating that the steroid injections have worked for now. We are almost 2 months out since they were done, so we should be able to tell where things stand. If they have not reduced the inflammation, we will be faced with starting another medication to gain control, and no one likes the idea of starting something that will make her even more susceptible to infection.
On the halter monitor we’d actually like to see her have one of her heart-beating-hard episodes in hopes that we can see what might be happening during those times. At the same time, I would be thrilled if it shows nothing and we are able to walk away with good news.
That Chance will have gained (even just a little) weight.
And finally, that the sleep studies give us the information that we need to make adjustments to Madison’s Bipap, and that either there is a clear cut reason for Abby’s fatigue that are sleep related (with a correlating easy fix please) or that her sleep study looks pristine.
Some of these answers will come while we are there this week, while the rest will trickle in over the following week or so. I will keep you posted.
Having a “light” week means we will get some good time to spend with family and friends and we are looking forward to it SO MUCH!! We will no doubt be entertained, loved on, and very cared for while we are there. Sure does make going down so much easier to do. Cannot even imagine making it down like we do without that blessing.
In other medical news….
Chance did at least maintain his weight at his last weight check. While we would have liked to see even a small gain considering the insanely high number of calories he’s taking in daily, no loss is good too. We will see how his weight looks this week, then he’ll have another weight check on the 10th at the peds office. With the lack of gain, he now needs to more consistently get in 3 supplemental drinks a day, and we are going into the next plan of action…..checking other organ systems in case they are stressed and consuming more calories. We will see pulmo this week and will hope that perhaps the o2 at night might make a difference, and will do an ECHO to check his heart when we are back in Houston on the 17th. We will talk with the Motility GI nurse this week on what the next steps will be if neither of these systems appear to be the problem.
Otherwise, the boy is doing pretty well right now!!!
Madison is having some “female problems” that I won’t share here and we need some prayers that we can find some solution for. She’s worn out dealing with it and really, really needs a break.
She is <knock on wood> 14 days out since her last antibiotic and is staying infection free thus far!! We are still in that 21 day window that she likes to come up with another one, so not quite out of the woods, but getting there. Sincerely praying she can get a break for a while. We will re-test her Mycoplasma levels on the 14th and would very much like to see those numbers come back not showing something chronic.
Fatigue is still pretty intense, but 2 weeks of no infection means I am seeing at least a little improvement.
Abby started Florinef about a week ago to help with her low blood pressures and at least thus far, we are not seeing any negative side effects to it. Not sure how much positive we are seeing yet, but watching for them. Hope is that it will lower her heart rate and stop the postural dizzy spells she deals with daily.
Otherwise she is really behaving herself right now!! Such a good girl<grin>.
Please keep our little friend Cooper in your thoughts and prayers right now. He is, quite literally, fighting for his life and he needs comfort, as do his family and friends.
Thanks so much for the thoughts and prayers this week!!! It’s been more of a trial than usual to get everything in place and taken care of this time, but all appears to be on the right track now and we should have a productive week.
Prayer requests for the week…..
That our pulmonologist is not too annoyed with me that we have still not started oxygen with Chance & Madison. There are a hundred excuses…..not one good enough….but I will spare you all. If I am honest, it’s mostly me struggling with the idea. I am still trying to wrap my mind around it. Reality is though, it might make a huge difference for the kids and I just need to get over myself and help them go into it with the right frame of mind.
That our rheumatologist finds a decrease in inflammation in Madison’s knee’s, indicating that the steroid injections have worked for now. We are almost 2 months out since they were done, so we should be able to tell where things stand. If they have not reduced the inflammation, we will be faced with starting another medication to gain control, and no one likes the idea of starting something that will make her even more susceptible to infection.
On the halter monitor we’d actually like to see her have one of her heart-beating-hard episodes in hopes that we can see what might be happening during those times. At the same time, I would be thrilled if it shows nothing and we are able to walk away with good news.
That Chance will have gained (even just a little) weight.
And finally, that the sleep studies give us the information that we need to make adjustments to Madison’s Bipap, and that either there is a clear cut reason for Abby’s fatigue that are sleep related (with a correlating easy fix please) or that her sleep study looks pristine.
Some of these answers will come while we are there this week, while the rest will trickle in over the following week or so. I will keep you posted.
Having a “light” week means we will get some good time to spend with family and friends and we are looking forward to it SO MUCH!! We will no doubt be entertained, loved on, and very cared for while we are there. Sure does make going down so much easier to do. Cannot even imagine making it down like we do without that blessing.
In other medical news….
Chance did at least maintain his weight at his last weight check. While we would have liked to see even a small gain considering the insanely high number of calories he’s taking in daily, no loss is good too. We will see how his weight looks this week, then he’ll have another weight check on the 10th at the peds office. With the lack of gain, he now needs to more consistently get in 3 supplemental drinks a day, and we are going into the next plan of action…..checking other organ systems in case they are stressed and consuming more calories. We will see pulmo this week and will hope that perhaps the o2 at night might make a difference, and will do an ECHO to check his heart when we are back in Houston on the 17th. We will talk with the Motility GI nurse this week on what the next steps will be if neither of these systems appear to be the problem.
Otherwise, the boy is doing pretty well right now!!!
Madison is having some “female problems” that I won’t share here and we need some prayers that we can find some solution for. She’s worn out dealing with it and really, really needs a break.
She is <knock on wood> 14 days out since her last antibiotic and is staying infection free thus far!! We are still in that 21 day window that she likes to come up with another one, so not quite out of the woods, but getting there. Sincerely praying she can get a break for a while. We will re-test her Mycoplasma levels on the 14th and would very much like to see those numbers come back not showing something chronic.
Fatigue is still pretty intense, but 2 weeks of no infection means I am seeing at least a little improvement.
Abby started Florinef about a week ago to help with her low blood pressures and at least thus far, we are not seeing any negative side effects to it. Not sure how much positive we are seeing yet, but watching for them. Hope is that it will lower her heart rate and stop the postural dizzy spells she deals with daily.
Otherwise she is really behaving herself right now!! Such a good girl<grin>.
Please keep our little friend Cooper in your thoughts and prayers right now. He is, quite literally, fighting for his life and he needs comfort, as do his family and friends.
Thanks so much for the thoughts and prayers this week!!! It’s been more of a trial than usual to get everything in place and taken care of this time, but all appears to be on the right track now and we should have a productive week.
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