Tuesday, April 20, 2010
It's been SOOOOO Long! Were going to go backwards for a flashback!
Ok I know I'm such a very bad blogger. For that I am truly sorry.. I have had very many things happen. Let see where to start ?? Let's go all the way back to Tristan's Surgery on Jan 21.
Tristan had his tonsils removed.. His tonsils have been infected with a bacteria most of his life. His tonsils were very badly infected. They were covering most of his throat and were trying to move into his gland in his neck . They were actually pushing his gland in his neck out which made it seem like he had compacted glands. Thank goodness they weren't compacted that would have been very painful to fix on top of everything else. Plus it looked like he had some damaged tissue.
Thank goodness when they did the surgery that once they took out the tonsils everything that was wrong went back to normal because it was all tonsils . Everything fixed itself when all the tonsils came out. Thank you God for making it all tonsils and all the other work didn't have to be done:) The Tonsil recovery was bad enough. Lets start after surgery...
We were in recovery and Tristan start getting sick and vomiting every where about every 5 mintues. The nurses and doctors where worried that Tristan would reputare and start bleeding which would require another surgery. So We did what we know how to do Pray that he didn't start bleeding. Which I can say worked very well Tristan never bleed at all. We had to spend the night in the hospital because he kept vomiting all the time. They gave him medications to keep from vomiting which didn't work at all . Nothing seemed to work . So once again We all (nurse,doctors,family) Starting praying that he could get some relief and be able to sleep and heal with no problem. Finally he stopped . The next day we were released . We were given very detailed instrustions on what to look for and what he was and wasn't suppose to do. One any bleeding in thorart or nose come straight to back to hospital for more surgery. Two Tristan is not do anything except lay down or sit up no running, playing rough etc., jumping etc. for two to four weeks depends on his healing. Basically watch tv and play his video games. Try telling this to a child who is very active . Nothing but super soft foods like liquids for 4 wks. He wasn't thrilled with
So now where at home and it's not even been a full 24 hrs after leaving the hospital were having issues again! Let's do this from how we experienced it. It's 12:45 am were just getting ready for bed(It's been a very long day) Tristan's sleeps in our room when he doesn't feel good or has had surgery or infusions. Were tucking him in on his pallet he's made. (this is at the end of my bed ) Turn on the tv and get in our bed. All of the sudden Tristan says" he doesn't feel good." I say" ok what's wrong. I hear nothing " I say again " Whats wrong?" I see my son stand up with a tear's rolling down his cheek and he's tapping on his chest .. then I see his stomach all sucked in like he doesn't have one or it's up in his rib cage. I realize he's not breathing and can't breath . We quickly jump into action . We give the inhaler doesn't twice doesn't work at all ... I set up the breathing machine with steroids in it give that 4 times and finally things start looking a little better he can breath but still not like he should. I call the hospital and let them know where on our way back and whats going on. We get there and are there for over 4 hrs and they have no clue why this happened or why or have a reason. This isn't the first time my son has quit breathing or had extremely bad breathing issues. Thankfully we are very calm and level head and have been trained on what to do. So with no reason on why this happened we were sent home with more things to watch for. It's 6 am in in the morning and we finally get to sleep. Tristan is finally sleeping . I think the rest of the night it seem like we slept in shifts or with one eye open so to speak. Well the rest of the day went ok..... Now it's time to go to bed again. Once again we put him to bed. For some odd reason I woke up at 3 am I couldn't sleep . I hear my son making this awful wheezing noise So I go to the end of the bed to check on him as I get to him I see he's dead asleep and his wheezing is getting worse and worse (like he's gasping for air) so I wake Dale up and we get his breathing machine set up with the steroids I put the mask to his face . At this point Tristan is still asleep and having breathing issues. We couldn't get him to wake up. After 3 rounds of steroids he finally wakes up but has no clue whats going on or why this is happening . So once again I am talking to the hospital and they have no clue whats happening or why. After about 40 min Tristan is back to normal and ready to go back to sleep . Want to talk about not going back to sleep. Now If I hadn't been awake I don't won't to think of what might have happened or if he had been in his room on the other side of the house. Or sleeping very well for the next couple of weeks.
Well that was all the nightmares that happened . After these nights Tristan Started having chest pains 5 to 6 times a day for the next couple of months. We have went to a heart specialist to make sure nothing is wrong with his heart now. Thankfully everything has came out fine. They haven't found out why he's getting chest pains. His heart looks good. But still no answer on why the chest pains :) Thankfully it's April and I can say they have finally went away but, he does still get them every once in awhile but not every day. There was many other things that happened during Feb-April but that would be like reading a book.
Now It's April and were back to his normal self:) We did have infusion in Jan, Feb, and in March we had 2 infusions. Our April Infusion is on the 30th of this month now were all caught up to speed. I am very great full that my doctors have shown me what to do and that they have enough confidence in me that I know what to do and how to handle things.
I am sorry for the great detail but I wanted people to see or understand what it sorta like in my shoes. I am thinking of posting what it's like a day in my life . So people can see how much work goes into having a child with medical needs. So next time you meet someone with a child with medical needs , you want judge them or wonder but maybe you'll take the time to talk to them and ask how there day is going. I have learned from other who have children with medical issuse that some times they just want to talk or to have someone tell them there doing a good job.
So my challenge to all you next time you out and you see someone like us I challenge to ask them how there day is going and tell them god loves them and they are doing a wonderful job. You'll will leave them with a smile on there face and yours.
I will post some pictures in another post
So God Bless Everyone who is praying for my son and family
God Bless all the people who DONATE blood and plasma!
We ARE VERY GRATEFUL!
Please people keep donating that blood and plasma ! You are helping my family. I am very grateful to everyone who has ever donated. God Bless you all in every way!!
Tristan had his tonsils removed.. His tonsils have been infected with a bacteria most of his life. His tonsils were very badly infected. They were covering most of his throat and were trying to move into his gland in his neck . They were actually pushing his gland in his neck out which made it seem like he had compacted glands. Thank goodness they weren't compacted that would have been very painful to fix on top of everything else. Plus it looked like he had some damaged tissue.
Thank goodness when they did the surgery that once they took out the tonsils everything that was wrong went back to normal because it was all tonsils . Everything fixed itself when all the tonsils came out. Thank you God for making it all tonsils and all the other work didn't have to be done:) The Tonsil recovery was bad enough. Lets start after surgery...
We were in recovery and Tristan start getting sick and vomiting every where about every 5 mintues. The nurses and doctors where worried that Tristan would reputare and start bleeding which would require another surgery. So We did what we know how to do Pray that he didn't start bleeding. Which I can say worked very well Tristan never bleed at all. We had to spend the night in the hospital because he kept vomiting all the time. They gave him medications to keep from vomiting which didn't work at all . Nothing seemed to work . So once again We all (nurse,doctors,family) Starting praying that he could get some relief and be able to sleep and heal with no problem. Finally he stopped . The next day we were released . We were given very detailed instrustions on what to look for and what he was and wasn't suppose to do. One any bleeding in thorart or nose come straight to back to hospital for more surgery. Two Tristan is not do anything except lay down or sit up no running, playing rough etc., jumping etc. for two to four weeks depends on his healing. Basically watch tv and play his video games. Try telling this to a child who is very active . Nothing but super soft foods like liquids for 4 wks. He wasn't thrilled with
So now where at home and it's not even been a full 24 hrs after leaving the hospital were having issues again! Let's do this from how we experienced it. It's 12:45 am were just getting ready for bed(It's been a very long day) Tristan's sleeps in our room when he doesn't feel good or has had surgery or infusions. Were tucking him in on his pallet he's made. (this is at the end of my bed ) Turn on the tv and get in our bed. All of the sudden Tristan says" he doesn't feel good." I say" ok what's wrong. I hear nothing " I say again " Whats wrong?" I see my son stand up with a tear's rolling down his cheek and he's tapping on his chest .. then I see his stomach all sucked in like he doesn't have one or it's up in his rib cage. I realize he's not breathing and can't breath . We quickly jump into action . We give the inhaler doesn't twice doesn't work at all ... I set up the breathing machine with steroids in it give that 4 times and finally things start looking a little better he can breath but still not like he should. I call the hospital and let them know where on our way back and whats going on. We get there and are there for over 4 hrs and they have no clue why this happened or why or have a reason. This isn't the first time my son has quit breathing or had extremely bad breathing issues. Thankfully we are very calm and level head and have been trained on what to do. So with no reason on why this happened we were sent home with more things to watch for. It's 6 am in in the morning and we finally get to sleep. Tristan is finally sleeping . I think the rest of the night it seem like we slept in shifts or with one eye open so to speak. Well the rest of the day went ok..... Now it's time to go to bed again. Once again we put him to bed. For some odd reason I woke up at 3 am I couldn't sleep . I hear my son making this awful wheezing noise So I go to the end of the bed to check on him as I get to him I see he's dead asleep and his wheezing is getting worse and worse (like he's gasping for air) so I wake Dale up and we get his breathing machine set up with the steroids I put the mask to his face . At this point Tristan is still asleep and having breathing issues. We couldn't get him to wake up. After 3 rounds of steroids he finally wakes up but has no clue whats going on or why this is happening . So once again I am talking to the hospital and they have no clue whats happening or why. After about 40 min Tristan is back to normal and ready to go back to sleep . Want to talk about not going back to sleep. Now If I hadn't been awake I don't won't to think of what might have happened or if he had been in his room on the other side of the house. Or sleeping very well for the next couple of weeks.
Well that was all the nightmares that happened . After these nights Tristan Started having chest pains 5 to 6 times a day for the next couple of months. We have went to a heart specialist to make sure nothing is wrong with his heart now. Thankfully everything has came out fine. They haven't found out why he's getting chest pains. His heart looks good. But still no answer on why the chest pains :) Thankfully it's April and I can say they have finally went away but, he does still get them every once in awhile but not every day. There was many other things that happened during Feb-April but that would be like reading a book.
Now It's April and were back to his normal self:) We did have infusion in Jan, Feb, and in March we had 2 infusions. Our April Infusion is on the 30th of this month now were all caught up to speed. I am very great full that my doctors have shown me what to do and that they have enough confidence in me that I know what to do and how to handle things.
I am sorry for the great detail but I wanted people to see or understand what it sorta like in my shoes. I am thinking of posting what it's like a day in my life . So people can see how much work goes into having a child with medical needs. So next time you meet someone with a child with medical needs , you want judge them or wonder but maybe you'll take the time to talk to them and ask how there day is going. I have learned from other who have children with medical issuse that some times they just want to talk or to have someone tell them there doing a good job.
So my challenge to all you next time you out and you see someone like us I challenge to ask them how there day is going and tell them god loves them and they are doing a wonderful job. You'll will leave them with a smile on there face and yours.
I will post some pictures in another post
So God Bless Everyone who is praying for my son and family
God Bless all the people who DONATE blood and plasma!
We ARE VERY GRATEFUL!
Please people keep donating that blood and plasma ! You are helping my family. I am very grateful to everyone who has ever donated. God Bless you all in every way!!
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