This is not like me but I am sure given the circumstances, I am allowed. I just have NO motivation to do anything these days. Even returning a simple phonecall is quite the task for me lately. I used to be the girl who never stayed at home, no I want nothing to do with going out. That is not me at all. I just feel like I don't have much left in me. It has been so depleted between sick kids caring for Janessa's needs and work. I have lost who I am. That, I don't like. I feel like my only role these days are mommy, nurse, and audiologist. I am sure alot has to do with the lack of sleep. It has been over 8 or more weeks without a full night of sleep. That is enough to make anyone crazy. If it is not Avery up then Isaiah is hollering or Janessa is in our bed or I just flat out have insomnia from getting up so many times a night.
This has been the worse yr by far for Avery, I have just seen my cutie little man just deterioate over the past few months. It is just so depressing. The worse part of it is his pain which at this point, we have no idea where it is coming from. If the morphine does not work for longer stretches of time then the pallative care team did bring up methadone. Sounds scary huh, well at this point, I just want him to feel good.
Sometimes I really cannot believe that this is my life. The funny thing is that when I was younger, I did not want to have kids b/c I thought I would not be a good mom. Man I had no idea what God had planned for me.
Avery is scheduled in 2 weeks to start the experimental medication. I just pray that this works for him and brings about some good changes. At this point, there are no more options for reducing his lactate.
Good thing is Isaiah is feeling great. He is back to his wild self. He has a little friend at school, it is so cute. The boy was on the computer with headphones on and my little pip kept pulling them off him. Heheheheh. He is quite the character when he feels good.
Poor Janessa. This girl has such major OCDs about being late for school which she is never ever late. But it is driving me INSANE. This is what I have little patience for. It just starts our mornings into yelling sessions, not how I want to begin the day. Many people think that she is deprived of attention b/c of her brothers. Actually it is completely opposite. We spend so much time with her b/c we feel bad (taking her to show, out to eat, movies etc) but it is never enough. I am at a loss at this point and honestly so overwhelmed. Sad part about it is, this is my life. No matter if I get away for a week or so, things will always be the same. Keeping up a fulltime job which I need makes it unbearable. Anyway, yet another Nicky rant.
So How do I get out of this Funk????? Any ideas.
Thursday, February 28, 2008
Monday, February 25, 2008
SOOO exhausted
Poor Avery is still not sleeping. He is still in a great deal of pain and it seems to be worse this week. The Pallative Care dr. called last night to check in and I told her about Avery's symptoms and she was really concerned that even with all the other meds (clonodine, klonopin, and ativan) we are not treating his pain just "trying" to sedate him which really is not working b/c the pain is keeping him up. So she called in morphine last night. It just sounded so scary to me. I was worried about giving it to him during the night without nursing around. But I really had no choice last night b/c he was up all night. It worked for a few hrs. We are really trying to keep up with his pain so it doesn't get so bad that we are too far behind. So he is also getting motrin and tylenol in addition to the other slew of meds he gets. This poor kid. Not only should I be a nurse, dr, secretary, personal driver, audiologist, mom, wife, counselor but you can also add a pharmicist to the mix too. Hopefull the pain will start to subside soon.
Isaiah came out of his cycle late yesterday, so he is back to smiling and rolling around and getting into everything. He got a haircut and is just so handsome. I will have to post some more pictures.
I really hope to get some sleep tonight b/c I just can't keep up this schedule with working fulltime. I so need a vacation.
Isaiah came out of his cycle late yesterday, so he is back to smiling and rolling around and getting into everything. He got a haircut and is just so handsome. I will have to post some more pictures.
I really hope to get some sleep tonight b/c I just can't keep up this schedule with working fulltime. I so need a vacation.
Friday, February 22, 2008
Long 2 days
Boys GI appts., First of all I thought the new dr. was very sweet and compassionate. Just a nice bedside manner. I warned him as soon as he walked it that this would be a long visit and it surely was. Two hrs. to get through both boys. He had gotten alot of the boys hx from our mito dr. and already seemed overwhelmed. Of course I got the typical "these boys are soo complicated" I hate that line. Basically means to me that there is not much I can do for you.
Anyway, starting with Avery. Ugh.....
*He agreed with me that he was on way too many meds and got rid of his levsin which was no help, decreased his carafate and his gas drops.
*Kept him on the formula
*Will try to communicate more with the team when we are inhouse more
* does not want him to have a port anytime soon b/c the chronic c-diff could really cause a major yeast infection in a line. News to me.
*He did talk alot about working with Pallative Care for a DNR in place for him. I did not expect that one and so heartbreaking b/c even though I know it, to hear it said basically tells me that there is not much I can do for him.
*Also with all of Avery's retching/vomitting, don't be surprised he ends up with CVS.
Isaiah
*Confirmed CVS (cyclic vomiting syndrome)
*he agreed with what we were doing at home but wanted to tweaks some things.
*he is adding Keppra back with a 6 mos trial out of the list of preventives that we tried but has to be cleared by our mito dr.
*he also wanted to add Imitrex nasal but it was not cleared by our neuro b/c not used in kids under 12 and certainly not in mito kids
*He also said we could try IV fluids in the hospital but knows quality of life is a big issue for us.
Low and behold, Isaiah started a spell 3 hrs after appt. and the Diastat is not even working.. No imitrex. So looks like we may be ending up in hospitals for our spells. Not what I wanted to hear. We are seeing neuro tomorrow and hoping to come up with a workable plan for Isaiah.
NEURO appt
Can I just say that I really love my neuro dr. she has been with us since Isaiah was first identified and with everything with Avery. She is just great and we are very lucky. However, it was a really long day today b/c of all the snow so needless to say the boys were totally exhausted. Isaiah was coming off of his cycle and was completely lethargic and drooling all day long. Avery vomitted quite a bit today. I did not have a nurse today so Janessa and Rick came. Quite the family event. Janessa was such a trooper today. What a good girl. I swear by the second day of drs. appts w/ both boys I was so tense especially adding driving home in horrible weather while the boys looked like complete crap. They really can only take being out and about for so long. They are much more content at home. Anyway.......
Avery
*He will be starting the experimental drug soon for his high lactate so they will schedule a hospitalization for that. Praying that he responds well to it.
*No med changes or additions which is always great.
*Scheduled a full skeletal x-ray to check for any more broken bones. Way too much of a long day for them to get it done today.
*Bloodwork of course
Isaiah
*We discussed at length medications for CVS. There are two types of meds. Preventive (daily meds hoping to stop the CVS eventually) and abortive (when he is in a cycle, something that stops it immediately) Currently that is diastat but the longer you use it, the less effect it has. We will try something other then the keppra that will seem more effective hopefully and there are a number of abortive meds. we can try, THANKFULLY. I really just do not want to be in the hospital everytime he is in a cycle. I swear, every hospitalization ages me a few months or even yrs. I have turned into a homebody and that was not the me before 3 kids and hospitalizations.
*We are also increasing some of his vitamin doses to see if this helps. So little changes but I at least feel like we are trying.
*Isaiah had ALOT of bloodwork b/c he has not been seen in so long b/c Mr. Avery keeps stealing his spotlight so we had alot of catching up to do. So many vials of blood that the labs did not get everything they needed b/c they were concerned b/c he already looked lethargic.
Wow...... I swear this is my longest post to date. Just lots of information in a couple of days. Then my work calls me while I am at the appt. saying that there is a hearing aid that they had payment for and the home it waiting on and some obvious loss of communication on their part and how soon can I get that aid out. Like ASAP. Are you *&^%&%%^&% kidding me.
Avery is having a REAL hard time settling down tonight so looks like a loooong night and poor Isaiah looks like death. So let's hope things get better over the weekend. We still need that break, just have no idea when it is coming.
Anyway, starting with Avery. Ugh.....
*He agreed with me that he was on way too many meds and got rid of his levsin which was no help, decreased his carafate and his gas drops.
*Kept him on the formula
*Will try to communicate more with the team when we are inhouse more
* does not want him to have a port anytime soon b/c the chronic c-diff could really cause a major yeast infection in a line. News to me.
*He did talk alot about working with Pallative Care for a DNR in place for him. I did not expect that one and so heartbreaking b/c even though I know it, to hear it said basically tells me that there is not much I can do for him.
*Also with all of Avery's retching/vomitting, don't be surprised he ends up with CVS.
Isaiah
*Confirmed CVS (cyclic vomiting syndrome)
*he agreed with what we were doing at home but wanted to tweaks some things.
*he is adding Keppra back with a 6 mos trial out of the list of preventives that we tried but has to be cleared by our mito dr.
*he also wanted to add Imitrex nasal but it was not cleared by our neuro b/c not used in kids under 12 and certainly not in mito kids
*He also said we could try IV fluids in the hospital but knows quality of life is a big issue for us.
Low and behold, Isaiah started a spell 3 hrs after appt. and the Diastat is not even working.. No imitrex. So looks like we may be ending up in hospitals for our spells. Not what I wanted to hear. We are seeing neuro tomorrow and hoping to come up with a workable plan for Isaiah.
NEURO appt
Can I just say that I really love my neuro dr. she has been with us since Isaiah was first identified and with everything with Avery. She is just great and we are very lucky. However, it was a really long day today b/c of all the snow so needless to say the boys were totally exhausted. Isaiah was coming off of his cycle and was completely lethargic and drooling all day long. Avery vomitted quite a bit today. I did not have a nurse today so Janessa and Rick came. Quite the family event. Janessa was such a trooper today. What a good girl. I swear by the second day of drs. appts w/ both boys I was so tense especially adding driving home in horrible weather while the boys looked like complete crap. They really can only take being out and about for so long. They are much more content at home. Anyway.......
Avery
*He will be starting the experimental drug soon for his high lactate so they will schedule a hospitalization for that. Praying that he responds well to it.
*No med changes or additions which is always great.
*Scheduled a full skeletal x-ray to check for any more broken bones. Way too much of a long day for them to get it done today.
*Bloodwork of course
Isaiah
*We discussed at length medications for CVS. There are two types of meds. Preventive (daily meds hoping to stop the CVS eventually) and abortive (when he is in a cycle, something that stops it immediately) Currently that is diastat but the longer you use it, the less effect it has. We will try something other then the keppra that will seem more effective hopefully and there are a number of abortive meds. we can try, THANKFULLY. I really just do not want to be in the hospital everytime he is in a cycle. I swear, every hospitalization ages me a few months or even yrs. I have turned into a homebody and that was not the me before 3 kids and hospitalizations.
*We are also increasing some of his vitamin doses to see if this helps. So little changes but I at least feel like we are trying.
*Isaiah had ALOT of bloodwork b/c he has not been seen in so long b/c Mr. Avery keeps stealing his spotlight so we had alot of catching up to do. So many vials of blood that the labs did not get everything they needed b/c they were concerned b/c he already looked lethargic.
Wow...... I swear this is my longest post to date. Just lots of information in a couple of days. Then my work calls me while I am at the appt. saying that there is a hearing aid that they had payment for and the home it waiting on and some obvious loss of communication on their part and how soon can I get that aid out. Like ASAP. Are you *&^%&%%^&% kidding me.
Avery is having a REAL hard time settling down tonight so looks like a loooong night and poor Isaiah looks like death. So let's hope things get better over the weekend. We still need that break, just have no idea when it is coming.
Wednesday, February 20, 2008
It seems like I gave the impression we were back in the hospital. Luckily we were able to avoid the hospital this time around. Avery's fever was down to 101 by the morning. Today he was fever free. Weird. I am begining to think that it is related to his hypothalamus especially b/c he shows no signs of illness. So I guess I will not be alarmed the next time he get another high fever. He seems to be healing, sleeping at night is still sporadic even with all the meds. but during the day he is more happy and even begining to move both arms. Thankfully. We have GI appts in the am, hopefully we will have a good plan in place for Isaiah and one for Avery when in goes into the hospital with his typical GI issues. This will be a huge help for us. I am hoping to get rid of some of his medications b/c his list is just ridiculous right now. Friday we are seeing Neurology which not sure how much help this will be.
Rick has his last typical season home game tonight. It is senior night tonight and they are remembering Ryan who is a player that they lost this session. Unfortunately, I am not able to go tonight b/c I don't have nursing tonight. But it is nice to have a quiet night home. Janessa is at a sleepover tonight. So these moments are very few and far between and I have to completely enjoy them while I can.
Rick has his last typical season home game tonight. It is senior night tonight and they are remembering Ryan who is a player that they lost this session. Unfortunately, I am not able to go tonight b/c I don't have nursing tonight. But it is nice to have a quiet night home. Janessa is at a sleepover tonight. So these moments are very few and far between and I have to completely enjoy them while I can.
Monday, February 18, 2008
Okay, so I was sooo going to blog a good update today. But.............
You know how it goes here. Avery's day started out really good. We found that wrapping him in the ace bandage seemed to give him some comfort and he was actually wiggling his legs today which was so great. A big ray of hope for us in all this madness. My nurse was concerned that wrapping in the bandage could cause some breathing issues in a kid who is already low toned. Well was she ever right. He went down for a nap and woke up sounding horrible. He was so very junking and had alot of fluid in his lungs. He was grey and looking really bad. She was a bit panicked but worked through it. After tons of chest pt, cough assist and nebs he finally cleared up. He went off to bed and woke up a few times which is not abnormal for him but tonight was indicative of something. Turns out he had a 104 fever. Okay, where did this come from??????
This is extremely high for him. I am a bit worried. Lets hope we can get through this one at home. Hopefully just a virus. But man, when does this baby get a break. It is almost unbelieveable, yet really reality. He is just such a trooper my little man.
Isaiah is feeling great. We are seeing the Dr. for his Cyclic Vomitting on thurs. so hopefully we can get a good plan in place for his retching spells.
Janessa will be visiting lots of friends this week. Which is really great for her b/c she told me the other night the we have ruined her life by moving. Sad face....
You know how it goes here. Avery's day started out really good. We found that wrapping him in the ace bandage seemed to give him some comfort and he was actually wiggling his legs today which was so great. A big ray of hope for us in all this madness. My nurse was concerned that wrapping in the bandage could cause some breathing issues in a kid who is already low toned. Well was she ever right. He went down for a nap and woke up sounding horrible. He was so very junking and had alot of fluid in his lungs. He was grey and looking really bad. She was a bit panicked but worked through it. After tons of chest pt, cough assist and nebs he finally cleared up. He went off to bed and woke up a few times which is not abnormal for him but tonight was indicative of something. Turns out he had a 104 fever. Okay, where did this come from??????
This is extremely high for him. I am a bit worried. Lets hope we can get through this one at home. Hopefully just a virus. But man, when does this baby get a break. It is almost unbelieveable, yet really reality. He is just such a trooper my little man.
Isaiah is feeling great. We are seeing the Dr. for his Cyclic Vomitting on thurs. so hopefully we can get a good plan in place for his retching spells.
Janessa will be visiting lots of friends this week. Which is really great for her b/c she told me the other night the we have ruined her life by moving. Sad face....
Thursday, February 14, 2008
So are you ready for this one
Okay, remember I said I was taking Avery to the drs. b/c his left arm seemed to be hurting him. Well this continued yesterday so I made an appt. for the pedi. to get x-ray.
Well, we all know how unreal things can be with the Nault's, to here goes.........
His left shoulder was fractured. WHAT. I was TOTALLY shocked and SADDENED. Not expecting that one at all. My poor little man has been suffering for some time. So they send us to the ER with the x-rays. Turns he has not ONE but TWO broken shoulders. WHAT?????????
Apparently the left one was a couple of weeks old and the right one was healed so about 6 weeks old. OMG!!!!!!!
I just have no idea how this happened. No fowl play whatsoever. The ortho. dr. said the x-rays looked like he had some brittle bones. SAD face. This kid is breaking bones and we have no idea. This at least explains all the pain and not sleeping. THis also means the keto diet is out b/c one of the risk factors is osteoporosis but from long term. He has only been on it for 5 mos. I can't imagine that it would be that quick. So many drs. called today and they say our only option to keep his lactate down is the experimental medicine at this point. So back in the hospital. I am also worried b/c it is not FDA approved and even though Isaiah did fine, he has not been through near what Avery has. This drug has actually killed kids. Avery has every reaction known to man and is always the 20% risk. KWIM. It just keeps getting worse and worse for this kid.
Really need a group hug about now. Not sure really how much more we can take.
Well, we all know how unreal things can be with the Nault's, to here goes.........
His left shoulder was fractured. WHAT. I was TOTALLY shocked and SADDENED. Not expecting that one at all. My poor little man has been suffering for some time. So they send us to the ER with the x-rays. Turns he has not ONE but TWO broken shoulders. WHAT?????????
Apparently the left one was a couple of weeks old and the right one was healed so about 6 weeks old. OMG!!!!!!!
I just have no idea how this happened. No fowl play whatsoever. The ortho. dr. said the x-rays looked like he had some brittle bones. SAD face. This kid is breaking bones and we have no idea. This at least explains all the pain and not sleeping. THis also means the keto diet is out b/c one of the risk factors is osteoporosis but from long term. He has only been on it for 5 mos. I can't imagine that it would be that quick. So many drs. called today and they say our only option to keep his lactate down is the experimental medicine at this point. So back in the hospital. I am also worried b/c it is not FDA approved and even though Isaiah did fine, he has not been through near what Avery has. This drug has actually killed kids. Avery has every reaction known to man and is always the 20% risk. KWIM. It just keeps getting worse and worse for this kid.
Really need a group hug about now. Not sure really how much more we can take.
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