We had a very nice and quiet Thanksgiving. boys did really well, they even tried some food (they were not overly thrilled though). I got up a 4am for Black Friday and finished the majority of my shopping, wooohooo.
Avery has been struggling with his feeds a bit. On thanksgiving, we forgot to turn on his night feeds and he went over 10 hrs without feeds and had a great Friday. So this is leading me to believe that he is up and uncomfortable alot because of his feeds. I have been shutting him off for longer periods but that is not good b/c he dehydrates so quickly. It is a very fine line and he needs so many calories. So I really thing moving forward with the TPN is a great idea at this point. He will still get some food through his j tube but the rest will be through the IV/port his has. He is so very uncomfortable at night so I am really going to push the drs. for getting things started this week. It is just not fair for him to keep being so uncomfortable. Just really hoping this gives him the break he needs. The best case scenario would be he only needs this for a month or two and he can go back to his full feeds.
With mito kids, it is always worrisome that they gut is shutting down. It just makes me very nervous if I am nearing this point. Although I don't think we are there yet. Because there are so many muscles in the gi system, it can be the most suseptible with mito kids due to the muscle weakness. One step at a time is all I can do right now.
Sunday, November 30, 2008
Wednesday, November 26, 2008
10 Things to Be Thankful For
1. The first is very obvious, my beautiful family.
2. Rick and I have stable jobs that we enjoy especially in this economy.
3. That I can find the ability to laugh alot amidst all the craziness and keep a postive attitude.
4. We have such supportive family and friends and I have to add my many online moms that have helped me through so much.
5. That I am not in the hospital much these days as there are many families in the hospital especially during the holidays.
6. That we have a great team caring for our boys. They are all so caring and extend that extra hand. DOn't know what I would do without them.
7. That Rick and I still manage to get out together often and be husband and wife and not just mommy and daddy.
8. That we have such a great and realistic outlook when it comes to all the tough medical decisions we need to make with the boys. As you know many marriages do not survive having one special needs child let alone two.
9. That we were able to move last year as it has literally save our life.
10. That I was able to visit my sister, aunt and neices and nephew this weekend even though it seemed as I would not make it there.
Wishing everyone a safe, happy and healthy THANKSGIVING!!!!!!!!!!!!!!!!!!!!!!!!
2. Rick and I have stable jobs that we enjoy especially in this economy.
3. That I can find the ability to laugh alot amidst all the craziness and keep a postive attitude.
4. We have such supportive family and friends and I have to add my many online moms that have helped me through so much.
5. That I am not in the hospital much these days as there are many families in the hospital especially during the holidays.
6. That we have a great team caring for our boys. They are all so caring and extend that extra hand. DOn't know what I would do without them.
7. That Rick and I still manage to get out together often and be husband and wife and not just mommy and daddy.
8. That we have such a great and realistic outlook when it comes to all the tough medical decisions we need to make with the boys. As you know many marriages do not survive having one special needs child let alone two.
9. That we were able to move last year as it has literally save our life.
10. That I was able to visit my sister, aunt and neices and nephew this weekend even though it seemed as I would not make it there.
Wishing everyone a safe, happy and healthy THANKSGIVING!!!!!!!!!!!!!!!!!!!!!!!!
Tuesday, November 25, 2008
Things have been pretty much unchanged in terms of Avery's reflux issues. Although he has slept pretty decent the last 2 nights, I should whisper that though. Some days he spends being super fussy and others he is okay but has a major problem with getting his meds (which is an issue). Whenever he gets his meds which is at least
4x a day, he turns pale white and starts retching and vomitting and then gets junky.
At this point, SOMETHING needs to be done. I have thought about things alot and discussed with the experts (other moms) as well as pallative care. For Avery, the decisions we are going to have to make are just going to get tougher and nothing is going to be a fix, just more of a bandaid. It is so depressing when you really think about it. I think the least invasive thing to do is to put him on TPN (IV nutrition) at night. He really needs some gut rest and this will do it for him. Hopefully just giving it at night will give him the break his gut needs. My worry is needing it fulltime which can damage the liver overtime. We are just going to start there and see how he does. It will be good b/c we can convert some of his meds to IV form which may be more effective.
I also sat down with the pallative home nurse and we are going to make a home protocol plan as well as an ER one. This will hopefully help us avoid a hospital stay and possibly the ER. The more he is home the better as far as I am concerned. They are very impressed with how well our family does given the circumstances which was nice to hear.
We should be going inpatient to start the TPN and get the ph probe (tests the reflux). We all will need alot of training.
Rick and Janessa are serving at the homeless which is really nice.
4x a day, he turns pale white and starts retching and vomitting and then gets junky.
At this point, SOMETHING needs to be done. I have thought about things alot and discussed with the experts (other moms) as well as pallative care. For Avery, the decisions we are going to have to make are just going to get tougher and nothing is going to be a fix, just more of a bandaid. It is so depressing when you really think about it. I think the least invasive thing to do is to put him on TPN (IV nutrition) at night. He really needs some gut rest and this will do it for him. Hopefully just giving it at night will give him the break his gut needs. My worry is needing it fulltime which can damage the liver overtime. We are just going to start there and see how he does. It will be good b/c we can convert some of his meds to IV form which may be more effective.
I also sat down with the pallative home nurse and we are going to make a home protocol plan as well as an ER one. This will hopefully help us avoid a hospital stay and possibly the ER. The more he is home the better as far as I am concerned. They are very impressed with how well our family does given the circumstances which was nice to hear.
We should be going inpatient to start the TPN and get the ph probe (tests the reflux). We all will need alot of training.
Rick and Janessa are serving at the homeless which is really nice.
Sunday, November 23, 2008
Everyone is HOME
Janessa and I ended up having a very good weekend despite our crazy start. It was so nice to see my family and get some baby holding time in. Short and sweet trip.
I am so proud of Rick. He did a wonderful job holding down the fort while I was gone. He handled the crisis very well. Although there were some things he left out that I would have freaked over but it was fine. They ran all the proper labs and did all the normal interventions which seemed to work well. Avery went from severe metabolic crisis to his normal self within a day. He is such a crazy boy. When I came home and saw him today, you would have never known what he went through this weekend.
No ruling on the fever, dehydration and crazy labs. This is not the first time he has presented like this so we know how to handle him when he gets like this but things just go downhill within a matter of minutes so it is extremely scarey. My nurse handled things great. So it made being away much more comforting for me.
It can be so hard when you have to make tough decisions and I felt like Avery was in good hands and I didn't want to disappoint Janessa. She would have been devastated. Things all worked out for the better. I now know I can leave Avery for a bit and he will be okay without me. But he better not do that again.
Thanks for all the prayers.
I am so proud of Rick. He did a wonderful job holding down the fort while I was gone. He handled the crisis very well. Although there were some things he left out that I would have freaked over but it was fine. They ran all the proper labs and did all the normal interventions which seemed to work well. Avery went from severe metabolic crisis to his normal self within a day. He is such a crazy boy. When I came home and saw him today, you would have never known what he went through this weekend.
No ruling on the fever, dehydration and crazy labs. This is not the first time he has presented like this so we know how to handle him when he gets like this but things just go downhill within a matter of minutes so it is extremely scarey. My nurse handled things great. So it made being away much more comforting for me.
It can be so hard when you have to make tough decisions and I felt like Avery was in good hands and I didn't want to disappoint Janessa. She would have been devastated. Things all worked out for the better. I now know I can leave Avery for a bit and he will be okay without me. But he better not do that again.
Thanks for all the prayers.
Friday, November 21, 2008
So I am posting early so that is NOT a good sign
Avery was up at 4am vomitting which was not atypical of him and he had a fever 101. I was a bit concerned but figured it was just a virus and things could be handled by the crew.
SO I was wrong. While I am boarding the plane to Georgia, my nurse called said he did not look good, his heartrate was over 180 and his respirations were over 75. Called Rick to send him to the ER w/ Avery. By the time he got there he his heartrate was over 200 and he had a 103 fever and just not doing well at all. The ambulance was called and they were having difficulty getting his line accessed to get fluids in him quick. They finally got a his line accessed and labs drawn. His white count was 34. WHeeew, that is high and indicative of an infection, possibly bacterial. He was transferred to CHildrens and will be in the ICP which is the stepdown ICU unit.
Meanwhile I was on the airplane and could not get info. for 3 hrs. I was dying. We landed and I finally got info. I am in Georgia and will be for the weekend. Rick will be with Avery. I feel better knowing that the drs. on the unit know him well. I actually spoke to the attending and he just took care of Avery last week in the ER so it makes me feel better.
So so a prayer that he recovers quickly from this and I don't go crazy being so far away.
Never a dull moment.
SO I was wrong. While I am boarding the plane to Georgia, my nurse called said he did not look good, his heartrate was over 180 and his respirations were over 75. Called Rick to send him to the ER w/ Avery. By the time he got there he his heartrate was over 200 and he had a 103 fever and just not doing well at all. The ambulance was called and they were having difficulty getting his line accessed to get fluids in him quick. They finally got a his line accessed and labs drawn. His white count was 34. WHeeew, that is high and indicative of an infection, possibly bacterial. He was transferred to CHildrens and will be in the ICP which is the stepdown ICU unit.
Meanwhile I was on the airplane and could not get info. for 3 hrs. I was dying. We landed and I finally got info. I am in Georgia and will be for the weekend. Rick will be with Avery. I feel better knowing that the drs. on the unit know him well. I actually spoke to the attending and he just took care of Avery last week in the ER so it makes me feel better.
So so a prayer that he recovers quickly from this and I don't go crazy being so far away.
Never a dull moment.
Thursday, November 20, 2008
Last night was really rough. Mr. Avery was up every hr after midnight. I suspect it was reflux related pain. Even giving him an extra dose of his pain meds really made no difference. So as you can see, things are getting worse in terms of his reflux and some definite decisions will need to be made soon.
Luckily, I get to go away for the weekend. Sleeeepppp all night, hopefully. Although my sister does have a newborn. Hehehe, hopefully I will still get some sleep. But it will also give me some time to think about how to move forward with Avery's care. Also able to visit w/ family. And spend some time with Ness. Rick is all set with nursing. Lucky guy.
Hopefully all is quiet at home while I am gone. Although the boys usually know when to get sick (just when I am getting off the plane).
I will be back to posting either Sunday or Monday. Expect many pictures of course. You have not seen my new neice here yet so it is coming soon.
Luckily, I get to go away for the weekend. Sleeeepppp all night, hopefully. Although my sister does have a newborn. Hehehe, hopefully I will still get some sleep. But it will also give me some time to think about how to move forward with Avery's care. Also able to visit w/ family. And spend some time with Ness. Rick is all set with nursing. Lucky guy.
Hopefully all is quiet at home while I am gone. Although the boys usually know when to get sick (just when I am getting off the plane).
I will be back to posting either Sunday or Monday. Expect many pictures of course. You have not seen my new neice here yet so it is coming soon.
Wednesday, November 19, 2008
The Meeting
WARNING VERY TECHNICAL INFO AHEAD
So my day did not start well b/c I was stuck in traffic for over 2 hrs which made me late for the meeting. If you know me, I HATE HATE being late. Then to top it off the only drs. that showed was GI, neuro and pallative care dr. The Pulmonlogist apparently NEVER attends these type of meeting. Gotta love how committed a dr. she is huh. Kinda of one of the important drs. considering his primary problems now are respiratory and GI issues.
Anyway. The GI dr. was not surprised with his reflux issues said that alot of kids w/ mito max out there meds overtime despite any changes you make. Oh great!!! He also felt that he has much more underlying motility issues (moving food through his system) and that doing a fundo would not help those issues. It would only help the reflux from coming up further and then aspirating. He said that I would more than likely have another Isaiah on my hands in terms of the cyclic vomitting. Just as I thought. Although the neuro did not agree with any of this and thought it was perfectly fine to do a fundo on him as she didn't think Isaiah's issues were a result of the fundo. That I thought was total BS.
He is definetly ordering a ph probe and endscopy to determine how bad he reflux actually is which I am in agreement w/. He also wants manometry testing done which is pretty intensive but it will give us alot of answers of what is going on with Avery. Problem is it can take a long time to schedule and get the results. The one dr. that does it is in Boston but one of the very few in this country. Luckily there is a new dr. on board recently that can also do it and this is who we are going with.
In the meantime, he wanted to start Avery on TPN (IV nutrition) at night to give his gut a rest and hopefully minimize his reflux during the night. THis is the BIG, I am not sure about and not quite understanding. This can bring many risks.
1. His port (central line) would be now accessed daily which bring huge infection risks.
2.Increased risks of blood clots which he has already had a major issue with.
3. Lots more work for us (as if we need any more)
I certainly have to get more info about this before I agree to it, however I would much rather do this than get a fundo. The plus is that we could probably convert alot of his meds to IV form which would also be better for him. He is vomitting and retching tons just with meds which is at least 3-4x a day.
Also the neuro. increased his neurotin at night which hopefully helps him to sleep more at night. We are taking away his clonodine and possibly klonopin (you have no idea of many meds this poor kid has). We will eventually at another med. But all of this will be done VERY slowly and one-by-by.
Now it would be great if all the med. changes would solve our issues but somehow I doubt it. So some hospitalizations will be planned soon and lots of decisions to make based on the results of all the testing.
IF you got this far, congrats and thanks for reading, If you got this far and still have no idea what I am talking about. Don't worry b/c I hardly have an idea what I am saying either. LOL.
So my day did not start well b/c I was stuck in traffic for over 2 hrs which made me late for the meeting. If you know me, I HATE HATE being late. Then to top it off the only drs. that showed was GI, neuro and pallative care dr. The Pulmonlogist apparently NEVER attends these type of meeting. Gotta love how committed a dr. she is huh. Kinda of one of the important drs. considering his primary problems now are respiratory and GI issues.
Anyway. The GI dr. was not surprised with his reflux issues said that alot of kids w/ mito max out there meds overtime despite any changes you make. Oh great!!! He also felt that he has much more underlying motility issues (moving food through his system) and that doing a fundo would not help those issues. It would only help the reflux from coming up further and then aspirating. He said that I would more than likely have another Isaiah on my hands in terms of the cyclic vomitting. Just as I thought. Although the neuro did not agree with any of this and thought it was perfectly fine to do a fundo on him as she didn't think Isaiah's issues were a result of the fundo. That I thought was total BS.
He is definetly ordering a ph probe and endscopy to determine how bad he reflux actually is which I am in agreement w/. He also wants manometry testing done which is pretty intensive but it will give us alot of answers of what is going on with Avery. Problem is it can take a long time to schedule and get the results. The one dr. that does it is in Boston but one of the very few in this country. Luckily there is a new dr. on board recently that can also do it and this is who we are going with.
In the meantime, he wanted to start Avery on TPN (IV nutrition) at night to give his gut a rest and hopefully minimize his reflux during the night. THis is the BIG, I am not sure about and not quite understanding. This can bring many risks.
1. His port (central line) would be now accessed daily which bring huge infection risks.
2.Increased risks of blood clots which he has already had a major issue with.
3. Lots more work for us (as if we need any more)
I certainly have to get more info about this before I agree to it, however I would much rather do this than get a fundo. The plus is that we could probably convert alot of his meds to IV form which would also be better for him. He is vomitting and retching tons just with meds which is at least 3-4x a day.
Also the neuro. increased his neurotin at night which hopefully helps him to sleep more at night. We are taking away his clonodine and possibly klonopin (you have no idea of many meds this poor kid has). We will eventually at another med. But all of this will be done VERY slowly and one-by-by.
Now it would be great if all the med. changes would solve our issues but somehow I doubt it. So some hospitalizations will be planned soon and lots of decisions to make based on the results of all the testing.
IF you got this far, congrats and thanks for reading, If you got this far and still have no idea what I am talking about. Don't worry b/c I hardly have an idea what I am saying either. LOL.
Monday, November 17, 2008
I am so excited!!!!!!!!!!!
Janessa and I are going to visit my sister this weekend. It was a last minute idea. I found a flight cheaper this week than in Dec. or Jan so we jumped on it. Janessa has not seen my neice or nephew since last yr. We have not met my new neice yet. It should be fun girl time. Of course I am always nervous about leaving the boys. Actually more anxious about it. I told Rick I thought I was becoming agorophobic, LOL. Naw, it is just nervewrecking leaving Avery especially the way he changes on a dime. But I will think positive because I have a great crew of nurses and know he is in good hands.
Avery is done with his antibiotic and is struggling w/ mucous plugs which also makes me nervous so we are going to start him on the prednisone before I leave. Hopefully this will clear him up totally. We have also switched his reflux med and he seems a bit happier although is still vomitting. I am going to wait a week and see how things go. We are still meeting with the team and will come up with a plan in case the new med. doesn't work.
Isaiah was not feeling well since last night, he was sluggish today. Hopefully he is back to his normal self by the am. I just hate to see him not feeling well.
Janessa and I are going to visit my sister this weekend. It was a last minute idea. I found a flight cheaper this week than in Dec. or Jan so we jumped on it. Janessa has not seen my neice or nephew since last yr. We have not met my new neice yet. It should be fun girl time. Of course I am always nervous about leaving the boys. Actually more anxious about it. I told Rick I thought I was becoming agorophobic, LOL. Naw, it is just nervewrecking leaving Avery especially the way he changes on a dime. But I will think positive because I have a great crew of nurses and know he is in good hands.
Avery is done with his antibiotic and is struggling w/ mucous plugs which also makes me nervous so we are going to start him on the prednisone before I leave. Hopefully this will clear him up totally. We have also switched his reflux med and he seems a bit happier although is still vomitting. I am going to wait a week and see how things go. We are still meeting with the team and will come up with a plan in case the new med. doesn't work.
Isaiah was not feeling well since last night, he was sluggish today. Hopefully he is back to his normal self by the am. I just hate to see him not feeling well.
Sunday, November 16, 2008
More tough decisions
It is so hard being a parent and having to make really hard decisions that cn affect your child's quality of life in a major way. This is where we are at again with Avery. There is no easy answer and it is a decision that only Rick and I can make for him. Uggh, I hate this.
Avery has been suffering terribly during the day with his reflux. His methadone and ativan does not even calm his down. It is pretty hard to watch. I just don't understand how it suddenly came about.
Problem is that we if changing his meds does not work then our only option is to do a fundo. But even doing the fundo surgery is certainly no guarantee that things will improve significantly. They may be better in terms of the reflux burning his throat but he could end up retching like Isaiah does which cannot be undone. So it is more of which is the better (chronic burning reflux which can cause worse damage or possibly constant retching) or we could do the fundo and get really good results from it. OR the sugery could just be too much on his body. So you see our dilemna!!!
I really hope the drs. have this new solutions that does not require surgery and is a perfect solution. Somehow I highly doubt it. And it is not that I am being a pessamist but just have done alot of research and know how things are.
Onto a different subject that is more postive:
We went to Janessa's teacher conference and was so thrilled with how good of a student she is. She is strong in all subject and is the first one to raise her hand w/ answers. She is the "go to kid" in the class for other students. I am so relieved b/c it is one less thing that we have to worry about. Also makes us proud that we have done well in raising her. But doesn't mean she is not a pest at home. LOL.
Avery has been suffering terribly during the day with his reflux. His methadone and ativan does not even calm his down. It is pretty hard to watch. I just don't understand how it suddenly came about.
Problem is that we if changing his meds does not work then our only option is to do a fundo. But even doing the fundo surgery is certainly no guarantee that things will improve significantly. They may be better in terms of the reflux burning his throat but he could end up retching like Isaiah does which cannot be undone. So it is more of which is the better (chronic burning reflux which can cause worse damage or possibly constant retching) or we could do the fundo and get really good results from it. OR the sugery could just be too much on his body. So you see our dilemna!!!
I really hope the drs. have this new solutions that does not require surgery and is a perfect solution. Somehow I highly doubt it. And it is not that I am being a pessamist but just have done alot of research and know how things are.
Onto a different subject that is more postive:
We went to Janessa's teacher conference and was so thrilled with how good of a student she is. She is strong in all subject and is the first one to raise her hand w/ answers. She is the "go to kid" in the class for other students. I am so relieved b/c it is one less thing that we have to worry about. Also makes us proud that we have done well in raising her. But doesn't mean she is not a pest at home. LOL.
Thursday, November 13, 2008
Okay so Avery only got up 8x instead of 10 last night which was an improvement. Rick actually did get up last night and he didn't even read the blog beforehand. LOL....
Avery was up screaming most of the night and just wanted someone to lay in the bed with him. Rick was finally able to get him to sleep.
Today he had a very miserable day with refluxing. He sure was trying to be happy (smiling at the tv every once in awhile) then he would remember how much pain he was in. He has been doing well in terms of the pneumonia by coughing up alot of the junk. Although he is requiring O2 at night which is to be expected. But I can see w/ of this refluxing that it is going to be hard to keep the pneumonia's at bay.
We have a team meeting next Wed. so we will see if we can find any resolutions. Although I am sure they are going to push me about doing the fundo which is totally not up for discussion in my book.
Isaiah has been doing great. This is his longest stretch of going to school daily. His therapists and sped. teacher are excited with how much progress he has made and his upper body is getting really strong. His head control has also gotten so much better. It is so nice to see one of my mito kids making such progress.
Avery was up screaming most of the night and just wanted someone to lay in the bed with him. Rick was finally able to get him to sleep.
Today he had a very miserable day with refluxing. He sure was trying to be happy (smiling at the tv every once in awhile) then he would remember how much pain he was in. He has been doing well in terms of the pneumonia by coughing up alot of the junk. Although he is requiring O2 at night which is to be expected. But I can see w/ of this refluxing that it is going to be hard to keep the pneumonia's at bay.
We have a team meeting next Wed. so we will see if we can find any resolutions. Although I am sure they are going to push me about doing the fundo which is totally not up for discussion in my book.
Isaiah has been doing great. This is his longest stretch of going to school daily. His therapists and sped. teacher are excited with how much progress he has made and his upper body is getting really strong. His head control has also gotten so much better. It is so nice to see one of my mito kids making such progress.
Introducing Steve Irkel's Girlfriend!!!!!
She is so silly. Janessa loves to do impressions and does them well. This is one of many. She just kills me!!!!
Wednesday, November 12, 2008
Okay so I spoke too soon
I mean sure he looks good, buuuuttt..... He sure had my heart pounding tonight. I could not keep his O2 sats above 88 on 3.5 liters of O2 which is NOT good. Remember he should be above 95%, especially on O2. Mind you he was sleeping. No temp and he didn't sound that bad, until I gave him a nebulizer. This is when all the junk comes up and he really desats. I suctioned him and tons of thick stuff comes up. Poor kid. Tonight is going to be one of those night where I pop out of bed at least 10 times b/c the alarm is going off. All the while Rick is sound asleep snoring. I am swearing like crazy b/c I haven't gotten any sleep and I have to work in the morning. Then wake up to getting 3 kids ready in the am and Janessa jumping in our bed during the night. Just a typical night in the Nault household.
I forgot to mention that my MIL got us these awesome microfleece sheets that feel like feety pj that you just don't want to get out of. I hate to get out of my bed 10x a night, buuuuuttttt.......
What r ya gonna do!!!!!!!!! Just a day in the life
I forgot to mention that my MIL got us these awesome microfleece sheets that feel like feety pj that you just don't want to get out of. I hate to get out of my bed 10x a night, buuuuuttttt.......
What r ya gonna do!!!!!!!!! Just a day in the life
Does this look like a boy with Pneumonia????
This kid is just something else. He is so happy and yet he has pneumonia. I am so happy to have been home w/ him and not in the germ infested hospital. How can he not bring a smile to your face.
Tuesday, November 11, 2008
Back home again
I just love these quick in and out. Avery looked great all day. He does in fact have pneumonia in the left lobe and his white count was elevated consistent an infection. The x-rays were also consistent (which are so brutal, I can see how he broke his arms last yr). The ER dr. knew us from being frequent flyers and was really good and thorough. He contacted all our drs who apparently were not surprised we were in there. They agreed to send him home with oral antibiotics and if they don't work then start the steriods. They have scheduled a team meeting for next week to help come to some resolution or help w/ all of these pneumonia's. So I feel very blessed to be home and get some sleep as I have nursing tonight.
Please pray hard for Landon, his site is below under my sites/blogs. Thanks for reading.
Please pray hard for Landon, his site is below under my sites/blogs. Thanks for reading.
We are Heading in
Avery had a very rough night w/ high fevers and just not feeling well. Although this morning he is smiley. I am almost certain he has a pneumonia b/c of the fevers. Kinda called it during the weekend. He needs a chest x-ray and labs. Not sure if we will be admitted but if we are, please pray for some solutions to these pneonomias.
Monday, November 10, 2008
Lots to Ponder Over
Over the weekend Avery continued to be gaggy so the dr. suggested Zofran which is an antinausea med. Well that worked really well but it can dry you up which the our "wonder drug sudafed" also does so we held the sudafed. Well big mistake b/c he returned to his junky self and desatted ALL night even on O2.
Then I found out his tube change was for today instead of tomorrow. Dingy me, it's a holiday tomorrow. Now we were hoping the tube was displaced causing his increased reflux. Well of course that was not the case. It was in fine and they did not even see any reflux. He continued to be totally junky throughout the day even though we gave him sudafed.
We ran into the Pallative dr. and discussed his symptoms which she took to be more respiratory related but that was not our issue until today. She wanted a team meeting with all his drs (neuro, gi, pulm, and ccs) so she emailed them all. Apparently the email said we were concerned about a pneumonia for respiratory wise and not GI issues. So the email was deferred to the pulm. of course.
Her nurse called a bit ago and said they wanted him on a steroid prelone which was brutal the last time and did not seem to help. I told her it was more GI stuff (although while saying that he was desatting left and right) and that the sudafed was our wonder drug. Well she told me we should NOT be using it daily and it is only is meant to be used about every other day. WHAT.... and who told us to use it daily. So I say, Um your nurse practioner. She wanted him on the prelone for 5 days and NO sudafed. UGh...
Also he is so very junky and not looking very good. So don't be surprised if we end up in the hospital. His heartrate is really up and so are his respirations.
What a mess!!!!!!!!!
Then I found out his tube change was for today instead of tomorrow. Dingy me, it's a holiday tomorrow. Now we were hoping the tube was displaced causing his increased reflux. Well of course that was not the case. It was in fine and they did not even see any reflux. He continued to be totally junky throughout the day even though we gave him sudafed.
We ran into the Pallative dr. and discussed his symptoms which she took to be more respiratory related but that was not our issue until today. She wanted a team meeting with all his drs (neuro, gi, pulm, and ccs) so she emailed them all. Apparently the email said we were concerned about a pneumonia for respiratory wise and not GI issues. So the email was deferred to the pulm. of course.
Her nurse called a bit ago and said they wanted him on a steroid prelone which was brutal the last time and did not seem to help. I told her it was more GI stuff (although while saying that he was desatting left and right) and that the sudafed was our wonder drug. Well she told me we should NOT be using it daily and it is only is meant to be used about every other day. WHAT.... and who told us to use it daily. So I say, Um your nurse practioner. She wanted him on the prelone for 5 days and NO sudafed. UGh...
Also he is so very junky and not looking very good. So don't be surprised if we end up in the hospital. His heartrate is really up and so are his respirations.
What a mess!!!!!!!!!
Sunday, November 9, 2008
Avery is such a mystery. I sure wish he could tell us what is bothering him. It's a constant guessing game. Yesterday morning he had a low grade fever so I immediately assumed he had an aspiration pneumonia. I called the pallative team and they were going to deliver an antibiotic (isn't that wonderful). Great thing about having them on board (we can avoid the germ infested ER). Anyway, no fever the rest of the day but tons of gagging throughout the day. So we did not start the abx b/c I sure don't want the c-diff to return as this is the longest in over a yr we have gone without it.
On Friday, i convinced the GI dr. to up his reflux meds but it actually seems to be having the opposite affect which is increased gagging, nausea and upset stomach. Ugh, we can't win. Poor kid is hiccupping, pale and vomits at times.
I will be going in on Tues to have his j tube changed which we are hoping this will solve alot of issues but I highly doubt it b/c I know it is not displaced. We are also meeting with the pallative team to come up with a plan for Avery. As me not doing a fundo is off the table, we are left with very few options. We have to maximize his meds so we are not constantly running into aspiration pneum. which are so dangerous for him. I am also questioning on whether we should do a ph probe and endoscopy b/c I am concerned he could have a ulcer which the symptoms are pretty similar.
Isaiah's motility issues have seemed to get alot better b/c of slowing his feeds. Yay. So one big problem fixed without surgery.
Janessa has been out and about all weekend catching up with friends where we used to live. One of our friends we have not sen in awhile. The girls are only 3 weeks apart and my friend and I have been friends since the first day of college so it is nice to see the girls whispering to each other like we used to so many yrs ago. They are little us and so grown.
So other than that things are going well. Please pray that we get some things figured out with Avery and make him more comfortable.
Do you like the new background?
On Friday, i convinced the GI dr. to up his reflux meds but it actually seems to be having the opposite affect which is increased gagging, nausea and upset stomach. Ugh, we can't win. Poor kid is hiccupping, pale and vomits at times.
I will be going in on Tues to have his j tube changed which we are hoping this will solve alot of issues but I highly doubt it b/c I know it is not displaced. We are also meeting with the pallative team to come up with a plan for Avery. As me not doing a fundo is off the table, we are left with very few options. We have to maximize his meds so we are not constantly running into aspiration pneum. which are so dangerous for him. I am also questioning on whether we should do a ph probe and endoscopy b/c I am concerned he could have a ulcer which the symptoms are pretty similar.
Isaiah's motility issues have seemed to get alot better b/c of slowing his feeds. Yay. So one big problem fixed without surgery.
Janessa has been out and about all weekend catching up with friends where we used to live. One of our friends we have not sen in awhile. The girls are only 3 weeks apart and my friend and I have been friends since the first day of college so it is nice to see the girls whispering to each other like we used to so many yrs ago. They are little us and so grown.
So other than that things are going well. Please pray that we get some things figured out with Avery and make him more comfortable.
Do you like the new background?
Saturday, November 8, 2008
Here we are at the Celtics
While Rick and I were having a great night the boys were not. But hey we still were able to get out and it was nice.
Thursday, November 6, 2008
Getting concerned about Avery's reflux
It seems as if it came out of nowhere. He has been on reflux meds since he was an infant and I don't ever remember any major signs of his reflux. Until recently. I honestly think it was from all the suctioning that made his gag reflex really sensitive which if you remember was a big concern of mine. Well seems as if reared it's ugly head. He has not been suctioned in about 2 weeks but it seems to have causes him to reflux high and today he aspirated on it, vomitted and turned blue. This is the big danger.
Problem is, there are no other meds that are effective at this point for him. The only solutions would be a fundiplication which I am admanently against. Isaiah had this done and now suffers from his Cyclic Vomitting as a result. So no way no how. Many drs. ask about this for Avery and I won't do it. What it is a surgery in which the stretch the stomach and wrap it around the bottom half of the esophagus to prevent the reflux from coming up by the lungs and causing an aspiration. But what can happen is many kids that are neurologically impaired, which is Avery without a doubt, can suffer nerve damage. Which is what I believe Isaiah has.
Plus that is way too invasive and Isaiah had great difficulty recovering so I cannot even imagine what Avery would be like.
So you see my dilemna......I am really at a loss. This aspiration is a scary thing for him. I came home after shopping with Rick and Janessa and I find her by the suction machine with Avery looking a bit stressed. She is a very calm nurse and she said he was blue after vomitting and just did not look well. So BIG PROBLEM.
Question is, what to do?
Problem is, there are no other meds that are effective at this point for him. The only solutions would be a fundiplication which I am admanently against. Isaiah had this done and now suffers from his Cyclic Vomitting as a result. So no way no how. Many drs. ask about this for Avery and I won't do it. What it is a surgery in which the stretch the stomach and wrap it around the bottom half of the esophagus to prevent the reflux from coming up by the lungs and causing an aspiration. But what can happen is many kids that are neurologically impaired, which is Avery without a doubt, can suffer nerve damage. Which is what I believe Isaiah has.
Plus that is way too invasive and Isaiah had great difficulty recovering so I cannot even imagine what Avery would be like.
So you see my dilemna......I am really at a loss. This aspiration is a scary thing for him. I came home after shopping with Rick and Janessa and I find her by the suction machine with Avery looking a bit stressed. She is a very calm nurse and she said he was blue after vomitting and just did not look well. So BIG PROBLEM.
Question is, what to do?
Wednesday, November 5, 2008
I am still beaming from last night's election. It was just something else. I cannot get enough of all the media coverage. Did you know that I often call into radio shows about politics. Now I am no expert but this election has gotten me so excited. And as a black women and an American, I am just in awe of this country. So proud to be an American. The people spoke last night for sure. I could not get over how many first time voters, young and old. Just monumental. To be able to tell my daughter that she can be whatever she wants to be is unbelievable. Not to mention, she knows just as much about this election as I do. LOL. That is what last night was all about. Congratulations Barack Obama.
On the home front, I was going to blog about how great things are going..... Until I got home of course today. Avery is doing great in terms of his respiratory status which is a complete godsend. But his spascity and pain is completely out of control. I think alot of it is related to reflux pain which really sucks. He has maxed out all of his reflux meds and cannot get anything else. He has been very gaggy and started vomitting lately. Can't imagine how bad it burns him. The insurance company stopped paying for prevacid and switched both boys to prilosec which is obviously not doing the trick. He is also on zantac 2x a day and is allergic to a couple of other reflux meds, so we are screwed. We are going to try to appeal the prevacid. He literally spent the whole day today with his arms and legs straight out and mouth cocked to the side with constant moaning. No nap today. So I am sure his night will not be to great.
This kid just cannot catch a break. Every time we fix one problem, another one appears. He may only have about 1-2 days that he is pain-free or manageable. Again, all of this is manageable at home but it is sure heartbreaking.
The pallative drs. just increased his neurotin to help with the spasms. Hopefully this works. Most of all I just want him to be comfortable, that is all that I can ask for but it seems to be pretty hard to get these days.
Rick and I are going to the Celtics on Friday. We have never done that together. Can you believe it, my husband being the basketball freak and all. Should be fun, pending things are quiet at home.
On the home front, I was going to blog about how great things are going..... Until I got home of course today. Avery is doing great in terms of his respiratory status which is a complete godsend. But his spascity and pain is completely out of control. I think alot of it is related to reflux pain which really sucks. He has maxed out all of his reflux meds and cannot get anything else. He has been very gaggy and started vomitting lately. Can't imagine how bad it burns him. The insurance company stopped paying for prevacid and switched both boys to prilosec which is obviously not doing the trick. He is also on zantac 2x a day and is allergic to a couple of other reflux meds, so we are screwed. We are going to try to appeal the prevacid. He literally spent the whole day today with his arms and legs straight out and mouth cocked to the side with constant moaning. No nap today. So I am sure his night will not be to great.
This kid just cannot catch a break. Every time we fix one problem, another one appears. He may only have about 1-2 days that he is pain-free or manageable. Again, all of this is manageable at home but it is sure heartbreaking.
The pallative drs. just increased his neurotin to help with the spasms. Hopefully this works. Most of all I just want him to be comfortable, that is all that I can ask for but it seems to be pretty hard to get these days.
Rick and I are going to the Celtics on Friday. We have never done that together. Can you believe it, my husband being the basketball freak and all. Should be fun, pending things are quiet at home.
Monday, November 3, 2008
We had a quiet weekend which is always wonderful, except keeping up with Mr. wildman himself, Isaiah. I have to post some pictures. The boy literally rolls over Avery, kicks him in the face and pulls at his tube. You cannot leave him for one minute. Kid surely needs some Ritalin, LOL. He is either retching and laying there like a bump on a log or into everything. But I love it b/c he has such a personality, just like any other kid.
Avery has not rolled again but I am sure will be doing it consistently soon. He had a great weekend but both him and Isaiah are having issues with their bellies. Avery is refluxing tons and gets really gaggy. New thing for him. Isaiah retched on Friday and was good all weekend, then started up again tonight.
But with all of this craziness, I am sooooo happy that we can handle it all at HOME. I know alot of kids that have been in the hospital suffering with many issues and it just saddens me for the families. I know what it is like and surely don't want to be there again. We are so blessed for the time that we get to be home. I feel in my heart that Avery has made a turn around toward stability. At least that is what I would live to believe. At this point we do such a good job keeping him home and I really hope it continues. I mean I don't mind being in the hospital for a short 2 day stay but that is about it.
I just feel that Avery is at home where he needs to be.
So please say a prayer for all the families that are in the hospital with there little ones b/c there are so many of them. Especially for my friend Debbie, she needs lots of hugs and prayers.
www.caringbridge.org/visit/jaidenandmarlowhite
Avery has not rolled again but I am sure will be doing it consistently soon. He had a great weekend but both him and Isaiah are having issues with their bellies. Avery is refluxing tons and gets really gaggy. New thing for him. Isaiah retched on Friday and was good all weekend, then started up again tonight.
But with all of this craziness, I am sooooo happy that we can handle it all at HOME. I know alot of kids that have been in the hospital suffering with many issues and it just saddens me for the families. I know what it is like and surely don't want to be there again. We are so blessed for the time that we get to be home. I feel in my heart that Avery has made a turn around toward stability. At least that is what I would live to believe. At this point we do such a good job keeping him home and I really hope it continues. I mean I don't mind being in the hospital for a short 2 day stay but that is about it.
I just feel that Avery is at home where he needs to be.
So please say a prayer for all the families that are in the hospital with there little ones b/c there are so many of them. Especially for my friend Debbie, she needs lots of hugs and prayers.
www.caringbridge.org/visit/jaidenandmarlowhite
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