So we have been home for some time, sorry for not posting it has been busy around here. Avery is still recovering from the virus. His stomach is still feeling the effects of it. Unfortunately it just takes one bug on his stomach to completely shut it down. His has been quite miserable with stomach pain since we have been home. We keep trying pedialyte even just 5cc an hr. and that is not doing it. I have decided to keep him off feeds for the weekend and see how he does. Problem is he is missing some fluids and also because he is draining quite a bit out of his stomach so we have to keep an eye on that.
Isaiah has been pretty stable with his sugars. We definetly see some highs when he is retching but the insulin seems to working for him. He still hates to get his blood sugars checked but what are ya gonna do!!!!! The good thing is he got his nursing hours increased which is a big help with his new diagnosis.
We are so very proud Miss Janessa, she made all As again and is Student of the Month. We are so lucky to have her as a daughter, she is just a great kid. Of course she keeps letting us know so she can be sure she gets the dog :)
As for me, I think it is definetly time for a girls vacation. I am feeling really cooped up with all these recent hospitalizations and it is time to recharge the batteries. Not sure where I am going but I am going somewhere soon.
Saturday, January 30, 2010
Tuesday, January 26, 2010
Turns out that Avery has Adenode virus, apparently it can be a pretty nasty bug. I am so impressed with how well he has done with it though. Typically he would have been a respiratory mess and requiring a much longer hospital stay. Instead he is just having some vomitting, diarrhea and stomach pain. I do feel bad for him but it is much better than having breathing issues. We are hoping to be home by tomorrow. Hopefully he has a good night b/c I am really getting sick of being in the hospital at this point.
Sunday, January 24, 2010
How quickly things change!!!
Here I am back in the hospital with Avery. Sitting beside me is a kid that is doing his crazy pain spasms. Although that is not the reason we are here. Figures, the night I have no nurse Isaiah decides to drop his blood sugar and Avery decides to spike some high temp. I ended up calling an ambulance at 12:30 am b/c he was really struggling and I was worried he was septic. My poor mom had come to spend the night and I had to wake her to let her know I was call the ambulance. His fever did not go down until 3am and by then we were transferred to Children's.
As you can imagine we got ZERO sleep. I almost had them releasing me at 9am but then the next shift of drs. came on and decided to keep him. UGH!!!! I am telling you, once his fever went down he was smiling and laughing at himself in the ambulance ride b.c he could see his reflection in the windows. So that was an indication to me that he was feeling better. But of course, based on Avery's name alone and his long wrapsheet an admission is inevitable. We are soooo exhausted and I really wanted to go to Rick's game today to see some old friends but I had to ditch my plans once again.
Hopefully we will be out of here by Tues. I highly doubt he has a line infection so it was probably some fluke thing. I will keep you all posted.
As you can imagine we got ZERO sleep. I almost had them releasing me at 9am but then the next shift of drs. came on and decided to keep him. UGH!!!! I am telling you, once his fever went down he was smiling and laughing at himself in the ambulance ride b.c he could see his reflection in the windows. So that was an indication to me that he was feeling better. But of course, based on Avery's name alone and his long wrapsheet an admission is inevitable. We are soooo exhausted and I really wanted to go to Rick's game today to see some old friends but I had to ditch my plans once again.
Hopefully we will be out of here by Tues. I highly doubt he has a line infection so it was probably some fluke thing. I will keep you all posted.
Friday, January 22, 2010
Sunday, January 17, 2010
We have quickly settled into a routine. It is always overwhelming at first with any new diagnosis with the boys, especially something like diabetes. Once the shock of it is over then it is not all that bad. Isaiah's sugars have quickly stabilized on the low dose of insulin. Although the poor kid HATES HATES to get the finger sticks (every 4 hrs.) and is actually a bit traumatized by it. It really stresses him out and breaks your heart. He just never cries unless something is really hurt and he cries at times when we are sticking him. So that part definetly sucks. Hopefully we can start reducing his sticks to 2-3 times a day since his levels have been good.
Avery has been great lately. He went for a full vision evaluation and was declared legally blind (yet another diagnosis). However, this one did not bother me as much b/c I know he sees fine. This kid does not miss a beat, but hey if it gives us a tax deduction then whatever!!!!
Other than that things have been pretty good. Janessa is just so excited about the impending dog. We have actually starting look online at a couple of breeds. I have to admit that as crazy as it is adding a dog to this house, I am actually excited too. I think once we get over the training and everything else that goes with it, it will be a great addition to the family. The boys will love it too.
Avery has been great lately. He went for a full vision evaluation and was declared legally blind (yet another diagnosis). However, this one did not bother me as much b/c I know he sees fine. This kid does not miss a beat, but hey if it gives us a tax deduction then whatever!!!!
Other than that things have been pretty good. Janessa is just so excited about the impending dog. We have actually starting look online at a couple of breeds. I have to admit that as crazy as it is adding a dog to this house, I am actually excited too. I think once we get over the training and everything else that goes with it, it will be a great addition to the family. The boys will love it too.
Tuesday, January 12, 2010
Now that the dust has settled...
I can't help but ponder a few things:
Sometimes this life gets so overwhelming and you feel like you cannot catch your breath. Of course at times like that, I wonder "why us?" As much as I am blessed by my family, you can't help but look at families with healthy kids and be jealous. Jealous of their freedom, the ability to make plans and be able to follow through with them instead of cancelling b/c you are always in the hospital, jealous of the the fact that they don't have to worry about the death of your kids. It is just a TOUGH life and we/I handle it great for the most part but then there are days like this.
But what am I gonna do???? I can complain all I want to and get sad, depressed and frustrated but at the end of the day, this is my family. I have to still wake up in the morning and give meds, baths, check blood sugars and care of central lines. So with every new intervention with these boys it gets more difficult and confining and you feel more defeated. Its the nature of the Mito beast.
With that all said, I have to say I think the new diagnosis is bitter/sweet. It actually seems to have been the missing link for Isaiah. He actually started insulin yesterday b/c his blood sugars remained high and it put him in a retching cycle. I called the endocrine dr. that I saw last month, she is wonderful. She wanted to start him on a low dose of insulin once a day with blood sugar checks every four hrs.. Immediately his sugars stabilized and he woke up today a new boy. He was soooo happy and energetic it was amazing. I really think that this may have been the cause of his increased retching spells for some time. He is mildly diabetic at this point (thank god) so the insulin he is getting hopefully makes a big difference with his cycles and his life. I just pray that it remains easy to maintain. Isaiah is actually already used to the sticks every 4 hrs and the insulin.
Through this all, Mr. Avery has been awesome. Although he is not too happy of the buzz cut I gave him. Eek....Just so grateful that my boys take turns being sick though. They are good in that way :)
And Janessa is just so excited about the dog. Still can't believe we agreed to it!!!!!!!
Sometimes this life gets so overwhelming and you feel like you cannot catch your breath. Of course at times like that, I wonder "why us?" As much as I am blessed by my family, you can't help but look at families with healthy kids and be jealous. Jealous of their freedom, the ability to make plans and be able to follow through with them instead of cancelling b/c you are always in the hospital, jealous of the the fact that they don't have to worry about the death of your kids. It is just a TOUGH life and we/I handle it great for the most part but then there are days like this.
But what am I gonna do???? I can complain all I want to and get sad, depressed and frustrated but at the end of the day, this is my family. I have to still wake up in the morning and give meds, baths, check blood sugars and care of central lines. So with every new intervention with these boys it gets more difficult and confining and you feel more defeated. Its the nature of the Mito beast.
With that all said, I have to say I think the new diagnosis is bitter/sweet. It actually seems to have been the missing link for Isaiah. He actually started insulin yesterday b/c his blood sugars remained high and it put him in a retching cycle. I called the endocrine dr. that I saw last month, she is wonderful. She wanted to start him on a low dose of insulin once a day with blood sugar checks every four hrs.. Immediately his sugars stabilized and he woke up today a new boy. He was soooo happy and energetic it was amazing. I really think that this may have been the cause of his increased retching spells for some time. He is mildly diabetic at this point (thank god) so the insulin he is getting hopefully makes a big difference with his cycles and his life. I just pray that it remains easy to maintain. Isaiah is actually already used to the sticks every 4 hrs and the insulin.
Through this all, Mr. Avery has been awesome. Although he is not too happy of the buzz cut I gave him. Eek....Just so grateful that my boys take turns being sick though. They are good in that way :)
And Janessa is just so excited about the dog. Still can't believe we agreed to it!!!!!!!
Sunday, January 10, 2010
And the Craziness continues........
This is my third time doing this post as my stupid computer keeps deleting my posts. Ugh.... So I am gonna make it brief.
Avery is doing great and even sleeping through the night, YAY.
This time it is Isaiah. My happy go lucky steady and healthy as you go kid. Seems that he is showing early signs of Diabetes......... How crazy is that. Like we need anymore craziness in this house. Last month he saw an Endocrine dr. b/c we of his continuing migranes and concerns of early puberty. She ran a bunch of labs and there was some concerns about his previous higher blood sugar readings and glucose in his urine. I got the report in the mail with all the results on thurs. and this is where the madness begins....
His blood sugar on that day was 179 (norms 80-100) and his A1c was on the high end of normal (it checks the blood sugar over 3 month span and is very accurate). So I started to check him at home b/c I was concerned by her report. Which said he was at a high risk for diabetes and if he continues to have high reading then he needs to be seen. On frid. he was hovering in the 150s which wasn't so bad. But yesterday he was 186 (fasting) and at 230 which was concerning. I called the oncall drs. at Childrens and they were very concerned. They are following us closely and if he has anymore readings over 200 then he will need to start insulin. He is going to go inpatient where they will watch him over a couple of days and give insulin as needed and teach us how to do it.
Can you believe this???? I am already having anxiety attacks over the thought of Isaiah going inpatient. He has not been in the hospital in over 3 yrs. and I can't imagine it now. First of all, they will have to put him in a cage bed and the kid will go crazy. Just a totally different kid than Avery. I am so used to Avery being the one inpt. and not Isaiah. I would accept if more if Avery had diabetes b/c he is easier to manage than Isaiah b/c he is so cooperative than my wild man. I mean just getting his BS reading is like a wrestling match, can you imagine doing it 3-4 times a day plus insulin. UGH!!!!!
I know I have to take a deep breath and things will be okay and all that but I don't know how much more craziness I can handle. And two kids going inpatient is certainly more than I can handle. The other crazy thing is that we FINALLY agreed to getting a dog for Janessa just before finding this out. Oh LORD!!!! And once we told her we are getting a dog, there is no going back on that one. AAAHHHHHHHHHHHHHH
Today, Isaiah's sugars look great 96 and hopefully they stay that way, although I doubt it. I am sure they skyrocket when he is in a cycle so it is just a matter of time before we start the insulin. The dr. did tell me that it is not good for him to even be at 200 b.c it can really hinder weight gain and we all know Isaiah is skinny as a rail and that is probably the reason he never gains weight (poor kid). This could very well be the answer to so many questions I have had about him and why his cycles could be worse. We will see.
I will keep you all posted though. So much for keeping it brief, LOL.
Avery is doing great and even sleeping through the night, YAY.
This time it is Isaiah. My happy go lucky steady and healthy as you go kid. Seems that he is showing early signs of Diabetes......... How crazy is that. Like we need anymore craziness in this house. Last month he saw an Endocrine dr. b/c we of his continuing migranes and concerns of early puberty. She ran a bunch of labs and there was some concerns about his previous higher blood sugar readings and glucose in his urine. I got the report in the mail with all the results on thurs. and this is where the madness begins....
His blood sugar on that day was 179 (norms 80-100) and his A1c was on the high end of normal (it checks the blood sugar over 3 month span and is very accurate). So I started to check him at home b/c I was concerned by her report. Which said he was at a high risk for diabetes and if he continues to have high reading then he needs to be seen. On frid. he was hovering in the 150s which wasn't so bad. But yesterday he was 186 (fasting) and at 230 which was concerning. I called the oncall drs. at Childrens and they were very concerned. They are following us closely and if he has anymore readings over 200 then he will need to start insulin. He is going to go inpatient where they will watch him over a couple of days and give insulin as needed and teach us how to do it.
Can you believe this???? I am already having anxiety attacks over the thought of Isaiah going inpatient. He has not been in the hospital in over 3 yrs. and I can't imagine it now. First of all, they will have to put him in a cage bed and the kid will go crazy. Just a totally different kid than Avery. I am so used to Avery being the one inpt. and not Isaiah. I would accept if more if Avery had diabetes b/c he is easier to manage than Isaiah b/c he is so cooperative than my wild man. I mean just getting his BS reading is like a wrestling match, can you imagine doing it 3-4 times a day plus insulin. UGH!!!!!
I know I have to take a deep breath and things will be okay and all that but I don't know how much more craziness I can handle. And two kids going inpatient is certainly more than I can handle. The other crazy thing is that we FINALLY agreed to getting a dog for Janessa just before finding this out. Oh LORD!!!! And once we told her we are getting a dog, there is no going back on that one. AAAHHHHHHHHHHHHHH
Today, Isaiah's sugars look great 96 and hopefully they stay that way, although I doubt it. I am sure they skyrocket when he is in a cycle so it is just a matter of time before we start the insulin. The dr. did tell me that it is not good for him to even be at 200 b.c it can really hinder weight gain and we all know Isaiah is skinny as a rail and that is probably the reason he never gains weight (poor kid). This could very well be the answer to so many questions I have had about him and why his cycles could be worse. We will see.
I will keep you all posted though. So much for keeping it brief, LOL.
Wednesday, January 6, 2010
Home At Last
I know I am such a baby b/c many families spent much more time inpatient then we do. Nonetheless it is still very difficult on the whole family to constantly be inpatient. On the flip side, we are so lucky to be at such a great hospital and the best unit and of course the staff. Avery is a very lucky boy, of course his cuteness helps :)
Mr. Avery did his little dance as always when we hit the elevators. It is so cute I have to tape it sometime. He sure does not miss a beat, he knows going home time.
No real answers on what the whole pain episode was although I am certain is was gut related. Just happy that it passed. It was a no go on trying to get IV ativan... Darn... But I totally understand the hospitals side. It is dangerous to do any narcotics at home, lots can happen. Hoping Avery decides to take another 8 wks off.
My father in law is going in to have stents put in his other leg in the early am. He has severe cardiovascular disease. We would appreciate any prayers for him. TIA
Thanks always for keeping my family in your thoughts, we really appreciate it.
Mr. Avery did his little dance as always when we hit the elevators. It is so cute I have to tape it sometime. He sure does not miss a beat, he knows going home time.
No real answers on what the whole pain episode was although I am certain is was gut related. Just happy that it passed. It was a no go on trying to get IV ativan... Darn... But I totally understand the hospitals side. It is dangerous to do any narcotics at home, lots can happen. Hoping Avery decides to take another 8 wks off.
My father in law is going in to have stents put in his other leg in the early am. He has severe cardiovascular disease. We would appreciate any prayers for him. TIA
Thanks always for keeping my family in your thoughts, we really appreciate it.
Tuesday, January 5, 2010
An end in sight
At this point everyone has their opinions on what has been going on the past wk. Frankly, I think they are all wrong. I just think his gut is crappy and acts up at times and he gets spasms that cannot be seen on any xray that cause him a ton of pain. I don't think we will always have an answer for what ails Mr. Avery. It is more a matter of making him comfortable. We have worked too long and hard with getting his pain under control to start back with it.
Yesterday I went to work for a couple of hrs. and the team had rounded and apparently poor little man was so stiff and crying with big tears :( Even they were not used to seeing him like that. This continued all afternoon with his heartrate going from 130s when he was comfortable to 190s with the spasms. Very hard to watch. Well by 2 pm, I could not take it anymore and asked for some IV ativan. That sure is Avery's drug of choice, lol. The kid slept from 2pm yesterday to 5am this morning. Wooohooo. It's excactly what his body needed. The pallative drs. say having spasms like that all day is like running a marathon. No wonder why he was so exhausted.
He woke up today smiley and looking great. I don't know what kind of day he will have today but I think we know what works for him at this point and can help him through these spells. We have added a couple of meds. and increased a few others so hopefully this does the trick. I am thinking he should be home tomorrow :)
Oh and his GI dr. came in last night (very interesting guy is all I can say). He sees Avery out for the count at 8pm last night and says "he looks good" Of course he does, he is drugged up. Then he says " I think it's just migranes!!!!!!!!!! Are you kidding me. Then he says "why don't you just get him a surgical j tube"????? Like it is no big deal, just another surgery. All I have to say to this is, time for a new GI dr.
Sunday, January 3, 2010
Things are looking up!!!
I think Avery decided that he wanted no part of getting rid of his tube after all the trauma it was to change it, lol. He had a great day with Daddy yesterday and has slept the past two nights now. So it seems that it was most likely a pseudo obstruction and hopefully his gut is starting to wake up again. Yay....
So they will slowly transition his meds. to his tube and start feeds again. I expect him to be home in a few days as I don't want to rush into transitioning everything and ultimately be back in the same positon. I am sure down the road we will have to address the issues with his turning intestines as his tube changes are getting much more difficult. He is also going to be starting a new med. to help with gut pain. Hopefully this is not going to be a regular occurance with his gut b/c that would mean much more hospital stays.
So they will slowly transition his meds. to his tube and start feeds again. I expect him to be home in a few days as I don't want to rush into transitioning everything and ultimately be back in the same positon. I am sure down the road we will have to address the issues with his turning intestines as his tube changes are getting much more difficult. He is also going to be starting a new med. to help with gut pain. Hopefully this is not going to be a regular occurance with his gut b/c that would mean much more hospital stays.
Saturday, January 2, 2010
Stuck between a Rock and a Hard Place
Avery is still struggling with pain and we have not found any simple solution to get him comfortable or some decent sleep. I just can't even imagine how the kid is functioning. But when daddy came to give me a break yesterday, that sure made him feel better for awhile b/c little man was just cracking up and sooo excited to see his daddy. It was very cute ;)
So they have literally xrayed just about every part of this kids body to look for any broken bones, ultrasounds of the whole belly area were all negative, no gallstones or kidney stones. It all still bring us back to what I originally said which it is his gut. Well nobody likes that answer b/c there are no simple solutions to that.
The attending GI dr. has been seeing us all week and he is the guru of motility stuff (gotta say I am NOT impressed though). Anyway, he has gone back and looked at all of Avery's gi studies since 2006 when he just had a g tube (in his stomach) and all his anatomy looked normal. But the studies changed over the last two yrs since he has had his gj tube. He believes that the j tube (in the small intestines) has literally twisted his intestines and it can be causing him alot of pain and obviously trouble with his feeds. Now this is good in one way b/c if the intestines go back to the way they were then maybe he can tolerate feeds more. BUT..... the solution totally sucks..... (see image below)
Solution: take out his gj tube and just leave him with a g tube. This is bad because we know his stomach does not work at all. We would still have to give him medications that he needs and can't be converted to IV in his stomach which we believe it will not be absorbed. So it is kinda pointless to put anything in his stomach. One of the meds. he needs for his spasms so it is pretty important. This would also mean that he would have to have his narcotics in the IV form which would be VERY difficult for us to get at home. I do NOT plan on staying in that hospital until his intestines go back to where they should be which could be a couple of months. So you see our predicament!!!!!!!!
I am hoping as Monday rolls around and the regular team of drs. are around that they will have some better solutions b/c I sure don't like the one that is on the table now.
I have to say it was REALLY nice to go home and finally get a good night of sleep. My mother in law who is a saint whipped up one of her dishes and we had a family dinner here. It was sad not to have Rick and Avery here though. I also got some baby holding time in :) Janessa and I went to visit our good friend's new beautiful baby girl. Janessa sure did not want to put her down. Meanwhile Isaiah is having a cycle at home. Poor kid. MITO SUCKS for sure.
I will keep you all updated as our plan changes. Thanks for reading
So they have literally xrayed just about every part of this kids body to look for any broken bones, ultrasounds of the whole belly area were all negative, no gallstones or kidney stones. It all still bring us back to what I originally said which it is his gut. Well nobody likes that answer b/c there are no simple solutions to that.
The attending GI dr. has been seeing us all week and he is the guru of motility stuff (gotta say I am NOT impressed though). Anyway, he has gone back and looked at all of Avery's gi studies since 2006 when he just had a g tube (in his stomach) and all his anatomy looked normal. But the studies changed over the last two yrs since he has had his gj tube. He believes that the j tube (in the small intestines) has literally twisted his intestines and it can be causing him alot of pain and obviously trouble with his feeds. Now this is good in one way b/c if the intestines go back to the way they were then maybe he can tolerate feeds more. BUT..... the solution totally sucks..... (see image below)
Solution: take out his gj tube and just leave him with a g tube. This is bad because we know his stomach does not work at all. We would still have to give him medications that he needs and can't be converted to IV in his stomach which we believe it will not be absorbed. So it is kinda pointless to put anything in his stomach. One of the meds. he needs for his spasms so it is pretty important. This would also mean that he would have to have his narcotics in the IV form which would be VERY difficult for us to get at home. I do NOT plan on staying in that hospital until his intestines go back to where they should be which could be a couple of months. So you see our predicament!!!!!!!!
I have to say it was REALLY nice to go home and finally get a good night of sleep. My mother in law who is a saint whipped up one of her dishes and we had a family dinner here. It was sad not to have Rick and Avery here though. I also got some baby holding time in :) Janessa and I went to visit our good friend's new beautiful baby girl. Janessa sure did not want to put her down. Meanwhile Isaiah is having a cycle at home. Poor kid. MITO SUCKS for sure.
I will keep you all updated as our plan changes. Thanks for reading
Friday, January 1, 2010
Exhausted and Frustrated....
Is the only way I can describe the last few days. Poor Avery has not been able to sleep in more than a 2hrs stretch since his nap on Tues afternoon. Can you imagine.!!! Poor kid. He is in chronic pain and we believe it is his gut. This kid has had just about every pain med. he can be given and it does NOTHING for him.
It seems as though his gut has completely shut down. All of his meds. have been converted to IV form but there are a few that cannot be converted. One of those being baclofen which he needs for his musle spasms. At this point we dont even think he is absorbing it and he could be showing signs of withdrawals from it. He is sweating tremendously (he even has a true BO smell) and he has a clonodine patch on and I swear it is not even working b/c he keeps sweating it off. My heart is breaking for him.
To boot, yesterday his j tube got clogged and we really need it for the meds. that cannot be converted to IV form. It being like a weekend here, they had to squeeze him in for a tube change. A total nightmare. I really thought that at one point they may not be able to get one in. His stomach was still full with barium from the day before (mind you he is hooked up to a drainage bag which should take anything that is sitting in his stomach out but apparently it did not). The dr. could not wire the thread through b/c his stomach was so full. Avery decided to solve that problem by completely vomitting everything out. Good thing b/c they were then able to get the wire threaded through. He was choking and aspirating but we were able to get him cleared out and stable. What the drs. thought would be a 5 min. tube change turned out to be almost an hr. which is crazy but I am so grateful they were able to get it in.
This all evidence that nothing is moving in his system. Plus the narcotics we are giving him for pain also contribute to his gut not waking up. So we are really stuck between a rock and a hard place. This kid needs to be comforable and desparately needs sleep and we need his gut to wake up. I just hope all this can happen soon. We are all just shaking our heads at the amount of pain meds (the big dawgs too) he has had and still no sleep. Just scares me b/c when he is really in a pain crisis what will we use then if we cannot seem to find something right now.
It doesn't seem like we will get out of here until we get his pain under control, some much needed sleep and get all his meds back to his j tube successfully. Rick will be taking over today b/c I really need to get some sleep myself and I feel like I am losing my mind. After have 8 wks off from the hospital, I am finding it VERY hard to be back here 2 wks in a row. One of my good friends told me the other day " I know this is your life and you are used to it but as an outsider who doesn't experience these things, it sounds so crazy" To that I say, and THIS is why I call it my " Crazy Normal Life" although it totally sucks alot "it is what it is" ...............
Happy New Years to everyone!!!!!!!!!!!
Is the only way I can describe the last few days. Poor Avery has not been able to sleep in more than a 2hrs stretch since his nap on Tues afternoon. Can you imagine.!!! Poor kid. He is in chronic pain and we believe it is his gut. This kid has had just about every pain med. he can be given and it does NOTHING for him.
It seems as though his gut has completely shut down. All of his meds. have been converted to IV form but there are a few that cannot be converted. One of those being baclofen which he needs for his musle spasms. At this point we dont even think he is absorbing it and he could be showing signs of withdrawals from it. He is sweating tremendously (he even has a true BO smell) and he has a clonodine patch on and I swear it is not even working b/c he keeps sweating it off. My heart is breaking for him.
To boot, yesterday his j tube got clogged and we really need it for the meds. that cannot be converted to IV form. It being like a weekend here, they had to squeeze him in for a tube change. A total nightmare. I really thought that at one point they may not be able to get one in. His stomach was still full with barium from the day before (mind you he is hooked up to a drainage bag which should take anything that is sitting in his stomach out but apparently it did not). The dr. could not wire the thread through b/c his stomach was so full. Avery decided to solve that problem by completely vomitting everything out. Good thing b/c they were then able to get the wire threaded through. He was choking and aspirating but we were able to get him cleared out and stable. What the drs. thought would be a 5 min. tube change turned out to be almost an hr. which is crazy but I am so grateful they were able to get it in.
This all evidence that nothing is moving in his system. Plus the narcotics we are giving him for pain also contribute to his gut not waking up. So we are really stuck between a rock and a hard place. This kid needs to be comforable and desparately needs sleep and we need his gut to wake up. I just hope all this can happen soon. We are all just shaking our heads at the amount of pain meds (the big dawgs too) he has had and still no sleep. Just scares me b/c when he is really in a pain crisis what will we use then if we cannot seem to find something right now.
It doesn't seem like we will get out of here until we get his pain under control, some much needed sleep and get all his meds back to his j tube successfully. Rick will be taking over today b/c I really need to get some sleep myself and I feel like I am losing my mind. After have 8 wks off from the hospital, I am finding it VERY hard to be back here 2 wks in a row. One of my good friends told me the other day " I know this is your life and you are used to it but as an outsider who doesn't experience these things, it sounds so crazy" To that I say, and THIS is why I call it my " Crazy Normal Life" although it totally sucks alot "it is what it is" ...............
Happy New Years to everyone!!!!!!!!!!!
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