Gaines blood work came back yesterday and looked good so his doctor had us turn his oxygen down to 3/4 a liter. I was so nervous because I knew I'd be devastated if he couldn't handle it but he did awesome! His sats were 97-99 last night while he was asleep. Please pray that this "takes" and that he doesn't get tired and have to go back up. Also, if he's still doing well next Monday we'll cut his Lasix back to .25 ml. If that goes well I'm supposed to call them back in two weeks and we might make another cut before we go back for clinic at the end of March. I am cautiously optimistic about all this. Afraid to get my hopes up too high but so excited that this first step seems to be going well. Please keep Gaines in your prayers. Wouldn't it be awesome to have a cordless baby by summer?
Love to all,
Brittany
Tuesday, February 23, 2010
Wednesday, February 17, 2010
Physical Therapy
Hello all. Gaines had a PT appointment Monday so I thought I'd update you on that and ask for a few specific prayers. Oh, and, PS...a huge thank you to all of you out there that still pray for our family and little Gaines. He is doing great and we are managing to stay fairly sane but there are days when we need lots of prayers...ok, maybe I'm the only one that needs them. You know I'm working on my patience (and doing fairly well if I do say so myself) but there are still days when I get overwhelmed...trying to be all things to all people. My guess is that a lot of you have days like that, I just had one today. When did life get so hectic?
Anyway...enough of that...back to Gaines. His therapist thought that he had a really good appointment. She loves how much time he's spending on his belly and was impressed with his arm strength. She got some new exercises to be working on. One that puts him in a crawling position (he does not love it) and one is just standing at the couch with flat feet and un-bent legs (he didn't seem to love that either this afternoon). When she tried it with him he wanted to be on his toes with bent knees. With some help he'd straighten out with out really fighting her, but that was still his go to position. We want to correct that.
I asked her how she thought his hamstrings were doing and she thought they were the best they've ever been. A good answer but I wanted specifics. I asked what she thought they were on a scale of 1-10, 10 being the best. She said probably a 7-8. Good, but not what she wanted yet. She said he probably started as a 5. That means he has definitely made progress but is not quite there yet. So, one of my specific prayer requests is for Gaines to be a good solid 9 by his next appointment. I know that with our prayers, God can make him a 10 (and he will eventually) but I'm trying not to be greedy. I just want a 9 for now. I'm really trying to do everything I can to get him there. I've increased his stretching and massage and using heat to warm his muscles when stretching. Gaines is not quite so crazy about my new determination but he'll thank me one day. I'll keep you updated.
My other prayer request these next two weeks is for Gaines to finally master this sitting up business. He is so close but according to his therapist, his back muscles are still a little weak. He sits up, he just doesn't sit up as straight as we'd like. Please keep that in your prayers as well. As I see it, Gaines has 4 big milestones left before I can breath a sigh of relief (if that's even a reality with children!)...sitting, crawling, walking and talking. I'd love to get that list down to 3 very soon. He has a big exercise ball that we use to strengthen his core. It's pretty tough to use but I'm starting to get the hang of it. Please pray that my determination continues. I love hearing from all of you out there have have dealt with these same frustrations. They remind me that I'm not alone in having to do this stuff. Some days I just want to crash on the couch but I know that Gaines needs me to do these exercises with him. Hearing your success stories or tips helps keep my head where it should be.
I really hope you all don't mind hearing my inner thoughts...I don't hold much back on here. I know I come across as complaining and probably ungrateful sometimes...I promise I'm not, I just try to be honest. Being a mom is hard sometimes!
Back to my boys...In other Gaines related news, he said Dada today. Not just Da...a full Dada. His poor Mama will probably have to wait a while to hear her name. I swear it took Reed forever to say "Mama".
Also, I haven't mentioned it in a while but Reed is pretty much potty trained. He only wears diapers at night. Every so often...like less than once a week, he'll have an accident but he has really done great with potty training. Honestly I feel like it's even less than that. Sorry...just had to brag on my big boy for a minute.
This is kind of funny...Beau just put Reed to bed and they said his prayers. They went through the list of thank you for mama, daddy, Gaines, Jack...Amen. Then Reed said, "What about my horse?" (his rocking horse that was the ONLY thing he told us Santa was going to bring him but that he never plays with), so Beau said, "And thank you for Reed's horse".
Reed: "What about my bike?"
Beau: "And thank you for Reed's bike."
Reed: "What about my scooter?"
Beau: "And thank you for Reed's scooter".
Then Reed got a big smile on his face and rolled over to go to sleep. His priorities might be a little skewed but at least he's thankful for his "bessings".
I'm out for now. I've got a boy out of bed that needs a talking to.
Thanks for keeping up with us. I mean it.
Pictures below if you haven't checked in in a few days.
Love to all,
Brittany
Anyway...enough of that...back to Gaines. His therapist thought that he had a really good appointment. She loves how much time he's spending on his belly and was impressed with his arm strength. She got some new exercises to be working on. One that puts him in a crawling position (he does not love it) and one is just standing at the couch with flat feet and un-bent legs (he didn't seem to love that either this afternoon). When she tried it with him he wanted to be on his toes with bent knees. With some help he'd straighten out with out really fighting her, but that was still his go to position. We want to correct that.
I asked her how she thought his hamstrings were doing and she thought they were the best they've ever been. A good answer but I wanted specifics. I asked what she thought they were on a scale of 1-10, 10 being the best. She said probably a 7-8. Good, but not what she wanted yet. She said he probably started as a 5. That means he has definitely made progress but is not quite there yet. So, one of my specific prayer requests is for Gaines to be a good solid 9 by his next appointment. I know that with our prayers, God can make him a 10 (and he will eventually) but I'm trying not to be greedy. I just want a 9 for now. I'm really trying to do everything I can to get him there. I've increased his stretching and massage and using heat to warm his muscles when stretching. Gaines is not quite so crazy about my new determination but he'll thank me one day. I'll keep you updated.
My other prayer request these next two weeks is for Gaines to finally master this sitting up business. He is so close but according to his therapist, his back muscles are still a little weak. He sits up, he just doesn't sit up as straight as we'd like. Please keep that in your prayers as well. As I see it, Gaines has 4 big milestones left before I can breath a sigh of relief (if that's even a reality with children!)...sitting, crawling, walking and talking. I'd love to get that list down to 3 very soon. He has a big exercise ball that we use to strengthen his core. It's pretty tough to use but I'm starting to get the hang of it. Please pray that my determination continues. I love hearing from all of you out there have have dealt with these same frustrations. They remind me that I'm not alone in having to do this stuff. Some days I just want to crash on the couch but I know that Gaines needs me to do these exercises with him. Hearing your success stories or tips helps keep my head where it should be.
I really hope you all don't mind hearing my inner thoughts...I don't hold much back on here. I know I come across as complaining and probably ungrateful sometimes...I promise I'm not, I just try to be honest. Being a mom is hard sometimes!
Back to my boys...In other Gaines related news, he said Dada today. Not just Da...a full Dada. His poor Mama will probably have to wait a while to hear her name. I swear it took Reed forever to say "Mama".
Also, I haven't mentioned it in a while but Reed is pretty much potty trained. He only wears diapers at night. Every so often...like less than once a week, he'll have an accident but he has really done great with potty training. Honestly I feel like it's even less than that. Sorry...just had to brag on my big boy for a minute.
This is kind of funny...Beau just put Reed to bed and they said his prayers. They went through the list of thank you for mama, daddy, Gaines, Jack...Amen. Then Reed said, "What about my horse?" (his rocking horse that was the ONLY thing he told us Santa was going to bring him but that he never plays with), so Beau said, "And thank you for Reed's horse".
Reed: "What about my bike?"
Beau: "And thank you for Reed's bike."
Reed: "What about my scooter?"
Beau: "And thank you for Reed's scooter".
Then Reed got a big smile on his face and rolled over to go to sleep. His priorities might be a little skewed but at least he's thankful for his "bessings".
I'm out for now. I've got a boy out of bed that needs a talking to.
Thanks for keeping up with us. I mean it.
Pictures below if you haven't checked in in a few days.
Love to all,
Brittany
Sunday, February 14, 2010
New Pictures
We took the boys outside today for a very short walk. The weather was okay and the fresh air has to be good for Gaines. Here are a few pictures from the walk.
Wednesday, February 10, 2010
Randomness
I don't have too much too much to report tonight. Both boys are doing really well...Reed has been recovered and Gaines is almost totally clear. Thank goodness. Friday we'll go to have some blood work done and will find out what the plan is as far as weaning medicines and oxygen. Gaines' RSV kind of put a kink in the original plan.
We are all hanging out watching Charlie Brown Valentine tonight. Reed doesn't understand the commercials. Every night we let him watch Backyardigans from 7-7:30 to sort of wind down before bed and there are no commercials on Nick Jr. So, we get lots of whining every time it goes to commercial. We'll have to work on patience with him...poor boy...he get's it honest.
Let's see what else...I think Gaines may be teething. We cannot keep his hands or oxygen cord out of his mouth. Oh, I think he's saying "Da" now. We've been getting "Boo" for a little while but now we've moved to another consonant. That's a good sign for his verbal and cognitive development. All these therapists have warped my mind. They ask all these questions and now I overanalyze every little thing. They'll ask something I've never thought about so then I start watching him like a hawk looking for whatever it is they've asked about. In this case, is he babbling consonants or vowels?
Reed is so funny these days (do I say that in every post?). He asked me the other day if I wanted to get my face painted at the circus (like he just did a few weeks ago). Also, he must be picking up on Valentines Day because last Sunday we were eating lunch and he said, "Mama, what about Val-tines Day?" I didn't know what all he was asking about but I told him a few things and that maybe I would make pancakes for breakfast on Valentines Day. He said, "Oh, I yove pancakes".
Another day I told him that a shirt he wanted to wear that had a stain on it would have to be a Saturday shirt. He said, "Oh, I yove Saturdays".
One last Reed story...this one is really sweet. One day I said, "I love you Reed" and he said "I yove you Mama." We went back and forth a few times (me loving every minute of it) and finally I said, "I love you the most". He said, "the most?" like he didn't know what that meant so I explained it. Now when I say, "I love you Reed" he says, "I yove you most". I love it.
I guess that's about it for tonight. I told you I didn't have much.
Love to all,
Brittany
P.S. During the typing of this post I've learned that deviation from the usual routine of Backyardigans is not the best idea. We had a major meltdown after Charlie Brown. Not worth it.
We are all hanging out watching Charlie Brown Valentine tonight. Reed doesn't understand the commercials. Every night we let him watch Backyardigans from 7-7:30 to sort of wind down before bed and there are no commercials on Nick Jr. So, we get lots of whining every time it goes to commercial. We'll have to work on patience with him...poor boy...he get's it honest.
Let's see what else...I think Gaines may be teething. We cannot keep his hands or oxygen cord out of his mouth. Oh, I think he's saying "Da" now. We've been getting "Boo" for a little while but now we've moved to another consonant. That's a good sign for his verbal and cognitive development. All these therapists have warped my mind. They ask all these questions and now I overanalyze every little thing. They'll ask something I've never thought about so then I start watching him like a hawk looking for whatever it is they've asked about. In this case, is he babbling consonants or vowels?
Reed is so funny these days (do I say that in every post?). He asked me the other day if I wanted to get my face painted at the circus (like he just did a few weeks ago). Also, he must be picking up on Valentines Day because last Sunday we were eating lunch and he said, "Mama, what about Val-tines Day?" I didn't know what all he was asking about but I told him a few things and that maybe I would make pancakes for breakfast on Valentines Day. He said, "Oh, I yove pancakes".
Another day I told him that a shirt he wanted to wear that had a stain on it would have to be a Saturday shirt. He said, "Oh, I yove Saturdays".
One last Reed story...this one is really sweet. One day I said, "I love you Reed" and he said "I yove you Mama." We went back and forth a few times (me loving every minute of it) and finally I said, "I love you the most". He said, "the most?" like he didn't know what that meant so I explained it. Now when I say, "I love you Reed" he says, "I yove you most". I love it.
I guess that's about it for tonight. I told you I didn't have much.
Love to all,
Brittany
P.S. During the typing of this post I've learned that deviation from the usual routine of Backyardigans is not the best idea. We had a major meltdown after Charlie Brown. Not worth it.
Thursday, February 4, 2010
The Miracles in Everyday Life
Brittany's last update on the boys was Tuesday night. We were fighting RSV, 4 infected ears and 2 infected eyes. We went to sleep Tuesday night prepared for the worst. The plan was for me to wake up at midnight to give Gaines a breathing treatment and for Brittany to wake up at 4 AM for another breathing treatment. We were also prepared to wake up to find Reed with his eyes matted shut.
Well, we both woke up at our designated times for the breathing treatments and were pleasantly surprised when Gaines slept through the night with very little coughing. Wednesday morning I immediately went to Reed's room so he wouldn't be scared when he couldn't open his eyes. I was shocked to find his eyes to be normal. I kept looking at him and asking to see his eyes...I was sure I was somehow missing something. I even asked him if his eyes hurt and he very quickly responded "No, they're feeling better".
Long story short...both boys are on the road to recovery. Reed acts as if he is fully recovered and Gaines is getting there. It will take Gaines a little while to get over the RSV but I think he is holding his own right now. It was amazing to go to bed Tuesday night fearing eye infections for one child and a possible hospital stay for the other...only to wake up Wednesday morning and for Reed to be well and Gaines to be much better. Sometimes the miracles in everyday life go unnoticed.
By the way, for those of you who like irony:
This journey started last March when Brittany went to Washington, DC on a 4 day business trip. I just found out that I will be leaving in March on a 5 day business trip to...Washington, DC. Weird.
Well, we both woke up at our designated times for the breathing treatments and were pleasantly surprised when Gaines slept through the night with very little coughing. Wednesday morning I immediately went to Reed's room so he wouldn't be scared when he couldn't open his eyes. I was shocked to find his eyes to be normal. I kept looking at him and asking to see his eyes...I was sure I was somehow missing something. I even asked him if his eyes hurt and he very quickly responded "No, they're feeling better".
Long story short...both boys are on the road to recovery. Reed acts as if he is fully recovered and Gaines is getting there. It will take Gaines a little while to get over the RSV but I think he is holding his own right now. It was amazing to go to bed Tuesday night fearing eye infections for one child and a possible hospital stay for the other...only to wake up Wednesday morning and for Reed to be well and Gaines to be much better. Sometimes the miracles in everyday life go unnoticed.
By the way, for those of you who like irony:
This journey started last March when Brittany went to Washington, DC on a 4 day business trip. I just found out that I will be leaving in March on a 5 day business trip to...Washington, DC. Weird.
Tuesday, February 2, 2010
Four Infected Ears, Two Infected Eyes and a Case of RSV
First of all, let me just tell you that the four warm chocolate chip cookies (with milk!) that I'm eating right now are delicious and well deserved. It has been one heck of a day. I'll start from the beginning.
When I woke up this morning I thought Gaines was almost fully recovered from his cold. He slept all night without coughing and when he woke up for his usual 4:00-4:45 (A.M!) play time (he likes to wake up around 4, play for a little while and go back to sleep until 6...I love him but it is a touch annoying) he was just awake and playing...no coughing which had become pretty standard the last week. When I left for work he was playing on his mat and I was not worried about him at all. He still had the occasional coughing fit but they were fewer and fewer each day.
Fast forward to 11:30. I'm working away getting ready for lunch and my phone rings. It's Reed's daycare. Deep breath before I answer. They think he may have pink eye and I need to come pick him up. Awesome.
I quickly call Beau since he is at the doctor's office with Gaines for Gaines' 9 month check-up and monthly synagis (RSV vaccination) shot. He calls me back on my way to get Reed and tells me to bring him on, the doctor can squeeze him in too. We hurry to the doctor and find the exam room. The scene is not what I expect. Everyone seems kind of worried about Gaines and Gaines does not look like he did when I left him. Beau tells me that as they were getting in the car he started a coughing fit and his sats dropped and he was obviously not feeling well at all. Beau even turned his oxygen up some.
Long story short, both of Gaines' ears are infected (even though he's on antibiotics) and he has RSV. (Yes, even though he's been being vaccinated for it the last 5 months and despite the fact that he comes into contact with very few humans). The doctor thought he should be admitted to the hospital and was trying to decide if Gaines should go to Children's in Birmingham or if he could just stay here. He called and talked to the pulmonologist in Birmingham and somewhere in that conversation they decided he could be treated at home. He responded well to an albuterol treatment and had come back down to a liter of oxygen with good sats so they both felt pretty good about it. He got a steroid shot in addition to the oral ones he's been taking for a week. We have been giving him breathing treatments every two hours this afternoon and will be going to every four after the 8 p.m. one. That means we'll be waking up at midnight and 4 a.m. but at least we are avoiding the hospital for now.
He seems great right now. That's the thing. He'll seem totally fine rolling around and really playing but then he starts coughing and it takes him a few minutes to get over it. It obviously hurts him to cough and his face turns red and he gags and it's just bad. You feel so sorry for him. Anyway, right now he seems to be doing well so please pray that he gets over this without a hospital visit. He goes back to the doctor tomorrow for a check-up. Pray that it goes well.
Someone asked the other day what all medicines Gaines was on so here is the current list. Keep in mind that the antibiotic and steroid are only temporary. Here goes. Lasix, Diuril, Aldactone (all diuretics to keep him from retaining fluid), Baclofen, Prevacid (both for reflux), Vitamin D, Sodium Chloride (both supplements because of all the diuretics), Orapred (steroid), Augmenten (antibiotic), Albuterol via nebulizer (usually just twice daily), IP Bromide via nebulizer and Flovent. I can't decide if CVS loves us or hates us. Either way they definitely know us.
As for Reed, he does not have pink eye. He has two infected ears that apparently can cause eye infections. I've never heard of this happening until today but it seems that it can. He's not contagious so as long as his eyes aren't all matted shut tomorrow he can go back to school. I'm just not sure they aren't going to be all gross tomorrow. His eyes did not look good when he went to bed and are both of them are looking goopy now. Hasn't slowed him down though.
Actually, I was at CVS with him this afternoon picking up his medicine and ran into a lady that works at my company. I don't know her well but well enough to speak. She asked if Reed was mine and I looked at him with his crazy hair from his nap, crusty nose and swollen and running eye (let's just say he was not looking his best) and said, "Yes, but he's normally cuter than this". Does that make me a bad mother? Oh well if it does.
I washed my hands like crazy before I took my contacts out but I still cringed as I did it. Reed isn't contagious but it still grossed me out touching my eyes right after I wiped nasty goop out of his.
I guess that's about it for now. I've got the 4 o'clock shift so I'm headed to bed. Please keep my little patients in your prayers.
Love to all,
Brittany
When I woke up this morning I thought Gaines was almost fully recovered from his cold. He slept all night without coughing and when he woke up for his usual 4:00-4:45 (A.M!) play time (he likes to wake up around 4, play for a little while and go back to sleep until 6...I love him but it is a touch annoying) he was just awake and playing...no coughing which had become pretty standard the last week. When I left for work he was playing on his mat and I was not worried about him at all. He still had the occasional coughing fit but they were fewer and fewer each day.
Fast forward to 11:30. I'm working away getting ready for lunch and my phone rings. It's Reed's daycare. Deep breath before I answer. They think he may have pink eye and I need to come pick him up. Awesome.
I quickly call Beau since he is at the doctor's office with Gaines for Gaines' 9 month check-up and monthly synagis (RSV vaccination) shot. He calls me back on my way to get Reed and tells me to bring him on, the doctor can squeeze him in too. We hurry to the doctor and find the exam room. The scene is not what I expect. Everyone seems kind of worried about Gaines and Gaines does not look like he did when I left him. Beau tells me that as they were getting in the car he started a coughing fit and his sats dropped and he was obviously not feeling well at all. Beau even turned his oxygen up some.
Long story short, both of Gaines' ears are infected (even though he's on antibiotics) and he has RSV. (Yes, even though he's been being vaccinated for it the last 5 months and despite the fact that he comes into contact with very few humans). The doctor thought he should be admitted to the hospital and was trying to decide if Gaines should go to Children's in Birmingham or if he could just stay here. He called and talked to the pulmonologist in Birmingham and somewhere in that conversation they decided he could be treated at home. He responded well to an albuterol treatment and had come back down to a liter of oxygen with good sats so they both felt pretty good about it. He got a steroid shot in addition to the oral ones he's been taking for a week. We have been giving him breathing treatments every two hours this afternoon and will be going to every four after the 8 p.m. one. That means we'll be waking up at midnight and 4 a.m. but at least we are avoiding the hospital for now.
He seems great right now. That's the thing. He'll seem totally fine rolling around and really playing but then he starts coughing and it takes him a few minutes to get over it. It obviously hurts him to cough and his face turns red and he gags and it's just bad. You feel so sorry for him. Anyway, right now he seems to be doing well so please pray that he gets over this without a hospital visit. He goes back to the doctor tomorrow for a check-up. Pray that it goes well.
Someone asked the other day what all medicines Gaines was on so here is the current list. Keep in mind that the antibiotic and steroid are only temporary. Here goes. Lasix, Diuril, Aldactone (all diuretics to keep him from retaining fluid), Baclofen, Prevacid (both for reflux), Vitamin D, Sodium Chloride (both supplements because of all the diuretics), Orapred (steroid), Augmenten (antibiotic), Albuterol via nebulizer (usually just twice daily), IP Bromide via nebulizer and Flovent. I can't decide if CVS loves us or hates us. Either way they definitely know us.
As for Reed, he does not have pink eye. He has two infected ears that apparently can cause eye infections. I've never heard of this happening until today but it seems that it can. He's not contagious so as long as his eyes aren't all matted shut tomorrow he can go back to school. I'm just not sure they aren't going to be all gross tomorrow. His eyes did not look good when he went to bed and are both of them are looking goopy now. Hasn't slowed him down though.
Actually, I was at CVS with him this afternoon picking up his medicine and ran into a lady that works at my company. I don't know her well but well enough to speak. She asked if Reed was mine and I looked at him with his crazy hair from his nap, crusty nose and swollen and running eye (let's just say he was not looking his best) and said, "Yes, but he's normally cuter than this". Does that make me a bad mother? Oh well if it does.
I washed my hands like crazy before I took my contacts out but I still cringed as I did it. Reed isn't contagious but it still grossed me out touching my eyes right after I wiped nasty goop out of his.
I guess that's about it for now. I've got the 4 o'clock shift so I'm headed to bed. Please keep my little patients in your prayers.
Love to all,
Brittany
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