Tonight I scanned back on the blog a bit and realized that it is not that exciting or fun to look at..plus it is completely full of errors I normally would never make but am just too tired to care to fix. I would love to make it more interesting with flowers and cool fonts and neat links or sidebars or more pictures. I just type away at night when I am so tired but am needing to get it all out of my head so I can rest. My messy run-ons and spelling blunders are so indicative of how easily little stuff gets swallowed up in life's cracks when there are bigger earthquakes in the area...no time to stop and edit. I am so tired and often rushed or plain overwhelmed..sometimes the cup runneth over. So for now I will have to be like Scarlett and put off the fun attention to detail parts of life that just don't work in today's schedule.."after all tomorrow is another day."
Sam and I are leaving in the morning with the nurse on an angel flight bound for Atlanta for a few days. It is a tiny 4 seater (mooney?)with strict weight requirements so Jason can't go as they are barely letting me and the tiny nurse go. Sam just can't take strain of a long drive so this is best option. I am so thankful for this nurse as I am not sure I could do this one alone. She offered to go along out of the kindness of her heart. (God sends us angels..) The nursing company can't pay her as it is across state lines and we can't pay her for conflict contract issues. This is a followup meeting with the mitochondrial disease expert's nurse who will go over in detail the report findings and treatments/ managment plan as well as answering questions etc. I am a little worried about what she will say about what to expect..do most kids with his level of dysfunction do well over time or does this have more of a progressive outlook. I need to have a more solid basis for the probable origin of his condition. It is listed as "probable Mitochondrial disease" because not all the testing is complete or indicating clear origins of this disease as a primary or secondary dysfunction. They may never have a clear understanding of what has happened to put his metabolic biorhythems into this malfunctioning state. I need to know how to maximize his health and optimize the cell's production of the energy his body needs. They don't have any info since October on Sam's case so I want to know how the GI down turn plays into all this as it is the most recent change in his condition. I also need to understand options for attempting to get insurance to cover his mitochondrial cocktail of medications..mostly supportive vitamins/ enzymes however they are very very expensive and we just realized the $200 boxes we ordered that we thought would cover 1 month actually only cover 4 days! I lost it a little bit when I made this discovery while reading through the treatment plan. We are praying about it and hopefully we can get insurance to cover it once we have a new policy number..that is the other big prayer..please let the insurance approve and send the policy number..equipement company called me today..With all the equipment Sam requires, we absolutely can not have issues for long on this front.
On a positive note, since receiving all feeds in a more broken down formula placed right into the intestines (skipping the stomach)Sam has had about 1 BM per day and is tolerating feeds well. His system seems to be happier but is it because in general he is at best health or did switching to the GJ help.. don't know. Sammy's mood was also great. He was upbeat and social today and I was able to place him into a seated position although the arms were holding his body like kick stands. At least this held for a few seconds and he seemed to want to stabilize. I tried very hard today to get him to do more with tummy time and try to pull arms up and under to push himself up but that is still a tough task for him. He is making lots of new sounds which it had been weeks and maybe more since he had tried to do that. When he turns a corner to feeling better and having lots of fluid and food in his system, he makes more progress. I have to be patient and give him time. I know he will get to each of those milestones as his body allows him the strength. Tomorrow will be a big day for him so I am glad he is resting easy tonight. Send up a prayer if you read this before our flight at noon tomorrow and the appt at 10 am on Monday...need an easy flight and a productive optimistic meeting. Thank you to all of those praying for Samuel and our family.. this may be a valley in the topography of life but we are moving along and looking for hills ahead. :)
amanda
Saturday, January 8, 2011
Wednesday, January 5, 2011
Do we need to keep him on a charger..
There is this silly rendition of the Beatles song that the girls love to sing in the car on our way home. They like to sing it when we round the corner towards our house and will fuss at me till I start them on the tune. It is called Two of Us..and starts out: Two of us sunday driving..(then a bunch of lines we only halfway know) and then there is the chorus:
On our way home
We're on our way home
We're on our way home
We're going hooooome....
This tune has been running through my head all day long. Samuel is in great shape today! Peak performance..back up to baseline.. fully recharged! I sometimes wonder if we could hook him to a recharger of some kind would be be able to keep those batteries running! Seriously.. is the IV fluids with dextrose the key to keeping his charged?
Sam is definitely ready to get back to his sisters. Once home, we just need to keep him healthy and hope we get lucky and make it a little longer this time. 9 hospitalizations in 9 months make me leary of setting any specific goals but I have hope as at least we now have a way to feed him when the tummy shuts down, but I know the intestinal tract itself could be part of our issue and I don't think he is up to baseline due to our new way of tube feeding. I think that the TPN and the fluids and the oxygen and the rest all helped to get him over the hump. But for now I am praising the Lord for this turn of health and am praying for more time to enjoy this state. I now know we will not take ANY down-turn for granted. We WILL head off any and all medical downturns with vigilant care about illness exposure and or germies and or fevers or anything that will stress his little system.. vaccines are still on the table but I am scaredy cat of them right now.
I had another kind visitor today. She was a good friend from High School and I literally have not seen her in like 15 years..did I say that..wow sounds strange as it felt like we fell right back into normal like it was 9th grad chem class. whew 15 years or more. Not even family and she treked over here while in town for a meeting. How can I say how much the love of friends and their prayers has meant to our family? She stayed so long with us..I should not have let her stay so long but it was so nice to see her again. Her daughter was diagnosed with a brain tumor at the age of 3 and had a brain surgery to remove it and then 20 months of chemo..so scarey for their family. What a strong fighter she is and an example to other children of her perseverance and strangth. She is doing well now but I will keep her in our thoughts and prayers too. God sends angels among us I tell you..to show us how strong we really can be if we trust him to give us the tools. Hearing from her experience inspires me. I know Jesus has walked with her family and they seem to have really grown from their experience.
I will leave this post with the story of Hannah and her son, Samuel. This is the story for which we named the son we long anticipated and prayed for. Today I talked with my friend about this and we talked about the two aspects of the story from the Book of 1 Samuel explaining the meaning of Samuel's name. It means "asked of God" or "heard by God" or in some versions "I am God". I chose this name because like Hannah, I had asked God to bless us with a son. I was not like Hannah in that my womb was not closed to having children and had already been twice blessed. I guess I also was not promising to give up this son to the service of the Lord as a priest as she did, although in a way.. we all hope our son's will be God's servants.
Jason and I had long felt our family would be "complete" with a third child..a son, if the Lord felt it was right. It seems selfish to ask for more when we have been blessed with two beautiful and most beloved daughters but like Hannah I felt there was something still missing and i had more love to give. I am sure other moms could relate to that feeling. Hannah's husband said to her, "Don't I mean more to you than 10 sons?" Wow, what a guy thing to say, right?..he just did not understand. She kept her promise to God when he answered her prayer of a baby boy. She called her son Samuel, because I asked the Lord for him. She sent her son to be a priest Under Eli after she had weaned him. He was still very young when he was taken to serve the Lord. I can't imagine the level of this mother's sacrifice but I can imagine the love she had and how grateful she was for the pleasure of being his mother. She went on to have other children.
The other part of this story is that Samuel was considered a prophet because he was directly called by the Lord to serve him and the Lord shined on him for his loyal service. Samuel said, "Here I am, Lord".. and when I read that line I can't help thinking of the lyrics and music to "Here I am, Lord..It is I, Lord... I can hear you calling in the night.. I will go Lord if you need me. I will hold your people in my heart." Samuel not only was an answer to Hannah's prayers but was chosen by the Lord. Samuel served the Lord as his loyal servant. I think our Samuel was chosen too. He was an answer to our prayers and yes, a blessing to our family but his worth and purpose are far greater and will serve the Lord in a much greater way through his life. His sacrifices are not in vain.
1 Samuel 1 (New International Version, ©2010)
1 Samuel 1
The Birth of Samuel
1 There was a certain man from Ramathaim, a Zuphite[a] from the hill country of Ephraim, whose name was Elkanah son of Jeroham, the son of Elihu, the son of Tohu, the son of Zuph, an Ephraimite. 2 He had two wives; one was called Hannah and the other Peninnah. Peninnah had children, but Hannah had none.
3 Year after year this man went up from his town to worship and sacrifice to the LORD Almighty at Shiloh, where Hophni and Phinehas, the two sons of Eli, were priests of the LORD. 4 Whenever the day came for Elkanah to sacrifice, he would give portions of the meat to his wife Peninnah and to all her sons and daughters. 5 But to Hannah he gave a double portion because he loved her, and the LORD had closed her womb. 6 Because the LORD had closed Hannah’s womb, her rival kept provoking her in order to irritate her. 7 This went on year after year. Whenever Hannah went up to the house of the LORD, her rival provoked her till she wept and would not eat. 8 Her husband Elkanah would say to her, “Hannah, why are you weeping? Why don’t you eat? Why are you downhearted? Don’t I mean more to you than ten sons?”
9 Once when they had finished eating and drinking in Shiloh, Hannah stood up. Now Eli the priest was sitting on his chair by the doorpost of the LORD’s house. 10 In her deep anguish Hannah prayed to the LORD, weeping bitterly. 11 And she made a vow, saying, “LORD Almighty, if you will only look on your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life, and no razor will ever be used on his head.”
12 As she kept on praying to the LORD, Eli observed her mouth. 13 Hannah was praying in her heart, and her lips were moving but her voice was not heard. Eli thought she was drunk 14 and said to her, “How long are you going to stay drunk? Put away your wine.”
15 “Not so, my lord,” Hannah replied, “I am a woman who is deeply troubled. I have not been drinking wine or beer; I was pouring out my soul to the LORD. 16 Do not take your servant for a wicked woman; I have been praying here out of my great anguish and grief.”
17 Eli answered, “Go in peace, and may the God of Israel grant you what you have asked of him.”
18 She said, “May your servant find favor in your eyes.” Then she went her way and ate something, and her face was no longer downcast.
19 Early the next morning they arose and worshiped before the LORD and then went back to their home at Ramah. Elkanah made love to his wife Hannah, and the LORD remembered her. 20 So in the course of time Hannah became pregnant and gave birth to a son. She named him Samuel,[b] saying, “Because I asked the LORD for him.”
Hannah Dedicates Samuel
21 When her husband Elkanah went up with all his family to offer the annual sacrifice to the LORD and to fulfill his vow, 22 Hannah did not go. She said to her husband, “After the boy is weaned, I will take him and present him before the LORD, and he will live there always.”[c]
23 “Do what seems best to you,” her husband Elkanah told her. “Stay here until you have weaned him; only may the LORD make good his[d] word.” So the woman stayed at home and nursed her son until she had weaned him.
24 After he was weaned, she took the boy with her, young as he was, along with a three-year-old bull,[e] an ephah[f] of flour and a skin of wine, and brought him to the house of the LORD at Shiloh. 25 When the bull had been sacrificed, they brought the boy to Eli, 26 and she said to him, “Pardon me, my lord. As surely as you live, I am the woman who stood here beside you praying to the LORD. 27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD.” And he worshiped the LORD there.
On our way home
We're on our way home
We're on our way home
We're going hooooome....
This tune has been running through my head all day long. Samuel is in great shape today! Peak performance..back up to baseline.. fully recharged! I sometimes wonder if we could hook him to a recharger of some kind would be be able to keep those batteries running! Seriously.. is the IV fluids with dextrose the key to keeping his charged?
Sam is definitely ready to get back to his sisters. Once home, we just need to keep him healthy and hope we get lucky and make it a little longer this time. 9 hospitalizations in 9 months make me leary of setting any specific goals but I have hope as at least we now have a way to feed him when the tummy shuts down, but I know the intestinal tract itself could be part of our issue and I don't think he is up to baseline due to our new way of tube feeding. I think that the TPN and the fluids and the oxygen and the rest all helped to get him over the hump. But for now I am praising the Lord for this turn of health and am praying for more time to enjoy this state. I now know we will not take ANY down-turn for granted. We WILL head off any and all medical downturns with vigilant care about illness exposure and or germies and or fevers or anything that will stress his little system.. vaccines are still on the table but I am scaredy cat of them right now.
I had another kind visitor today. She was a good friend from High School and I literally have not seen her in like 15 years..did I say that..wow sounds strange as it felt like we fell right back into normal like it was 9th grad chem class. whew 15 years or more. Not even family and she treked over here while in town for a meeting. How can I say how much the love of friends and their prayers has meant to our family? She stayed so long with us..I should not have let her stay so long but it was so nice to see her again. Her daughter was diagnosed with a brain tumor at the age of 3 and had a brain surgery to remove it and then 20 months of chemo..so scarey for their family. What a strong fighter she is and an example to other children of her perseverance and strangth. She is doing well now but I will keep her in our thoughts and prayers too. God sends angels among us I tell you..to show us how strong we really can be if we trust him to give us the tools. Hearing from her experience inspires me. I know Jesus has walked with her family and they seem to have really grown from their experience.
I will leave this post with the story of Hannah and her son, Samuel. This is the story for which we named the son we long anticipated and prayed for. Today I talked with my friend about this and we talked about the two aspects of the story from the Book of 1 Samuel explaining the meaning of Samuel's name. It means "asked of God" or "heard by God" or in some versions "I am God". I chose this name because like Hannah, I had asked God to bless us with a son. I was not like Hannah in that my womb was not closed to having children and had already been twice blessed. I guess I also was not promising to give up this son to the service of the Lord as a priest as she did, although in a way.. we all hope our son's will be God's servants.
Jason and I had long felt our family would be "complete" with a third child..a son, if the Lord felt it was right. It seems selfish to ask for more when we have been blessed with two beautiful and most beloved daughters but like Hannah I felt there was something still missing and i had more love to give. I am sure other moms could relate to that feeling. Hannah's husband said to her, "Don't I mean more to you than 10 sons?" Wow, what a guy thing to say, right?..he just did not understand. She kept her promise to God when he answered her prayer of a baby boy. She called her son Samuel, because I asked the Lord for him. She sent her son to be a priest Under Eli after she had weaned him. He was still very young when he was taken to serve the Lord. I can't imagine the level of this mother's sacrifice but I can imagine the love she had and how grateful she was for the pleasure of being his mother. She went on to have other children.
The other part of this story is that Samuel was considered a prophet because he was directly called by the Lord to serve him and the Lord shined on him for his loyal service. Samuel said, "Here I am, Lord".. and when I read that line I can't help thinking of the lyrics and music to "Here I am, Lord..It is I, Lord... I can hear you calling in the night.. I will go Lord if you need me. I will hold your people in my heart." Samuel not only was an answer to Hannah's prayers but was chosen by the Lord. Samuel served the Lord as his loyal servant. I think our Samuel was chosen too. He was an answer to our prayers and yes, a blessing to our family but his worth and purpose are far greater and will serve the Lord in a much greater way through his life. His sacrifices are not in vain.
1 Samuel 1 (New International Version, ©2010)
1 Samuel 1
The Birth of Samuel
1 There was a certain man from Ramathaim, a Zuphite[a] from the hill country of Ephraim, whose name was Elkanah son of Jeroham, the son of Elihu, the son of Tohu, the son of Zuph, an Ephraimite. 2 He had two wives; one was called Hannah and the other Peninnah. Peninnah had children, but Hannah had none.
3 Year after year this man went up from his town to worship and sacrifice to the LORD Almighty at Shiloh, where Hophni and Phinehas, the two sons of Eli, were priests of the LORD. 4 Whenever the day came for Elkanah to sacrifice, he would give portions of the meat to his wife Peninnah and to all her sons and daughters. 5 But to Hannah he gave a double portion because he loved her, and the LORD had closed her womb. 6 Because the LORD had closed Hannah’s womb, her rival kept provoking her in order to irritate her. 7 This went on year after year. Whenever Hannah went up to the house of the LORD, her rival provoked her till she wept and would not eat. 8 Her husband Elkanah would say to her, “Hannah, why are you weeping? Why don’t you eat? Why are you downhearted? Don’t I mean more to you than ten sons?”
9 Once when they had finished eating and drinking in Shiloh, Hannah stood up. Now Eli the priest was sitting on his chair by the doorpost of the LORD’s house. 10 In her deep anguish Hannah prayed to the LORD, weeping bitterly. 11 And she made a vow, saying, “LORD Almighty, if you will only look on your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life, and no razor will ever be used on his head.”
12 As she kept on praying to the LORD, Eli observed her mouth. 13 Hannah was praying in her heart, and her lips were moving but her voice was not heard. Eli thought she was drunk 14 and said to her, “How long are you going to stay drunk? Put away your wine.”
15 “Not so, my lord,” Hannah replied, “I am a woman who is deeply troubled. I have not been drinking wine or beer; I was pouring out my soul to the LORD. 16 Do not take your servant for a wicked woman; I have been praying here out of my great anguish and grief.”
17 Eli answered, “Go in peace, and may the God of Israel grant you what you have asked of him.”
18 She said, “May your servant find favor in your eyes.” Then she went her way and ate something, and her face was no longer downcast.
19 Early the next morning they arose and worshiped before the LORD and then went back to their home at Ramah. Elkanah made love to his wife Hannah, and the LORD remembered her. 20 So in the course of time Hannah became pregnant and gave birth to a son. She named him Samuel,[b] saying, “Because I asked the LORD for him.”
Hannah Dedicates Samuel
21 When her husband Elkanah went up with all his family to offer the annual sacrifice to the LORD and to fulfill his vow, 22 Hannah did not go. She said to her husband, “After the boy is weaned, I will take him and present him before the LORD, and he will live there always.”[c]
23 “Do what seems best to you,” her husband Elkanah told her. “Stay here until you have weaned him; only may the LORD make good his[d] word.” So the woman stayed at home and nursed her son until she had weaned him.
24 After he was weaned, she took the boy with her, young as he was, along with a three-year-old bull,[e] an ephah[f] of flour and a skin of wine, and brought him to the house of the LORD at Shiloh. 25 When the bull had been sacrificed, they brought the boy to Eli, 26 and she said to him, “Pardon me, my lord. As surely as you live, I am the woman who stood here beside you praying to the LORD. 27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD.” And he worshiped the LORD there.
Tuesday, January 4, 2011
wowsa.. I was an emotional momma today
I had a bit of a day really.. lots of up and down of emotions. For about 2 hours I was a weepy mess and then started back up for air. It was while sitting in the waiting room for Sam to come out of the OR from his JG tube upgrade procedure that I started to feel.. done in. By far this was one of the simpliest procedures yet.. except that every time they do anything on him they have to put him under General Ansthesia and intubate and it scares me a bit that he won't wake up or will have his more serious episodes or something. I am always alone in the waiting rooms as Jason can never be here due to work etc.. and these things are never scheduled on weekends when there might be some chance of him being with me.
I think I was mostly upset because they had told me he would get to avoid the anesthesia and then we get down there and they said..no way. He had to be fully under as he can't handle the gas and needs the MH precautions and has major problems with the LMA tube. So it had to be the full deal. Anesthesia is always the big issue.. not the surgeries or procedures themselves..like the fundoplication surgery where they wrapped his tummy around his espophagus.. scarey image but the surgeon said our biggist issues were airway concerns and heart rate and anesthesia. Then after that surgery ended in major major episodes and him being coded several times, and we realized it was the intubation making him far worse, I think I got gun shy of the anesthesia and intubation. So they say he has to have what they call TIVA (total IV anesthesia) due to his issues. He did great though this time and it took about an hour and a half.. nothing compared to the 16 hours I would sit for mom's surgeries in the agony of endless worry.
One procedure at a time is what I keep telling myself but after having to go into such a detailed history for the umpteenth time with the anesthesia and radiology people, I was remembering too much from all we have experienced and then thinking far too much about the future and all of a sudden I was overwhelmed and a blithering mess. Most of the time I think I am pretty good at just focusing on the situation at hand and staying in control of the emotional stuff..Jason is far better at it than I. I try to leave my weak times to when I am in prayer because God understands. I am not sure the others in that waiting room could understand why this woman in the corner who has had like no sleep and looks like she was run over by a truck this week is sitting there tearing up every time she takes a sip of her coffee. In saying my prayers for Sammy, I found some peace and calm and before I knew it they were there to bring me back to see him.
My son is such a little fighter. When I got to his side in recovery, he was purring like a cat and waking up in such a vulnerable way. I love that he vigilantly seeks out my eyes and seems to plead to me in only a language I understand. In a few little nods and blinks, he asks me to hold him unlike any other baby... no arms flinging out or howling mommees..just a locked gaze and coo meant just for me. The nurses always tell me over and over.."He is sooo good. I can't believe he never screams or even crys out." He just purrs and moans softly to me. That is his way. He knows by now that crying out and making a big fit of himself will only steal precious energy. I felt alot better seeing him doing better and the rest of the day has been an improvement except for some tummy aches. He is wanting to go home, as am I.
As for the procedure, they had not only fished around in his insides with a metal wire to thread down the intestines but had also dilated (substitute this nice medical word for stretched out bluntly) his stoma (the hole leading from the outer tummy to the inner wall of his stomach.. why did he have to be put through that pain? Because they did not happen to have his size in stock. His size of gj- tube that is..I was NOT happy about this news. He is a 14 french and they only had an 18 handy..so they made a 14 hole fit their 18 tube. I was also NOT happy when I found out this hospital does not carry the nice button version of the GJ tube like his old G tube which was so easy to conceal and "low profile" as it is so named that it does not interfere so much with movement and tummy time etc..The new GJ tube is huge and similar to the first starter G tube we had way back in may for the first 6 weeks. It has a long tube attached that can't be detached and is impossible for putting meds into and is FAR easier for Samuel to play grabbies with which could lead to him pulling it out, requiring a repeat of this OR procedure. It is not like the G tube we had where we can put it back in ourselves.
So for now..Sam is supposed to be sleeping but is instead peacefully blabbering in his crib sweet baby sounds and blowing sweet baby bubbles while I type this and hopefully he is ready to get some shut eye. I a, really hoping we get to go home soon.. hopefully tomorrow.
I think I was mostly upset because they had told me he would get to avoid the anesthesia and then we get down there and they said..no way. He had to be fully under as he can't handle the gas and needs the MH precautions and has major problems with the LMA tube. So it had to be the full deal. Anesthesia is always the big issue.. not the surgeries or procedures themselves..like the fundoplication surgery where they wrapped his tummy around his espophagus.. scarey image but the surgeon said our biggist issues were airway concerns and heart rate and anesthesia. Then after that surgery ended in major major episodes and him being coded several times, and we realized it was the intubation making him far worse, I think I got gun shy of the anesthesia and intubation. So they say he has to have what they call TIVA (total IV anesthesia) due to his issues. He did great though this time and it took about an hour and a half.. nothing compared to the 16 hours I would sit for mom's surgeries in the agony of endless worry.
One procedure at a time is what I keep telling myself but after having to go into such a detailed history for the umpteenth time with the anesthesia and radiology people, I was remembering too much from all we have experienced and then thinking far too much about the future and all of a sudden I was overwhelmed and a blithering mess. Most of the time I think I am pretty good at just focusing on the situation at hand and staying in control of the emotional stuff..Jason is far better at it than I. I try to leave my weak times to when I am in prayer because God understands. I am not sure the others in that waiting room could understand why this woman in the corner who has had like no sleep and looks like she was run over by a truck this week is sitting there tearing up every time she takes a sip of her coffee. In saying my prayers for Sammy, I found some peace and calm and before I knew it they were there to bring me back to see him.
My son is such a little fighter. When I got to his side in recovery, he was purring like a cat and waking up in such a vulnerable way. I love that he vigilantly seeks out my eyes and seems to plead to me in only a language I understand. In a few little nods and blinks, he asks me to hold him unlike any other baby... no arms flinging out or howling mommees..just a locked gaze and coo meant just for me. The nurses always tell me over and over.."He is sooo good. I can't believe he never screams or even crys out." He just purrs and moans softly to me. That is his way. He knows by now that crying out and making a big fit of himself will only steal precious energy. I felt alot better seeing him doing better and the rest of the day has been an improvement except for some tummy aches. He is wanting to go home, as am I.
As for the procedure, they had not only fished around in his insides with a metal wire to thread down the intestines but had also dilated (substitute this nice medical word for stretched out bluntly) his stoma (the hole leading from the outer tummy to the inner wall of his stomach.. why did he have to be put through that pain? Because they did not happen to have his size in stock. His size of gj- tube that is..I was NOT happy about this news. He is a 14 french and they only had an 18 handy..so they made a 14 hole fit their 18 tube. I was also NOT happy when I found out this hospital does not carry the nice button version of the GJ tube like his old G tube which was so easy to conceal and "low profile" as it is so named that it does not interfere so much with movement and tummy time etc..The new GJ tube is huge and similar to the first starter G tube we had way back in may for the first 6 weeks. It has a long tube attached that can't be detached and is impossible for putting meds into and is FAR easier for Samuel to play grabbies with which could lead to him pulling it out, requiring a repeat of this OR procedure. It is not like the G tube we had where we can put it back in ourselves.
So for now..Sam is supposed to be sleeping but is instead peacefully blabbering in his crib sweet baby sounds and blowing sweet baby bubbles while I type this and hopefully he is ready to get some shut eye. I a, really hoping we get to go home soon.. hopefully tomorrow.
Missing Home..
Today was Jason's 32nd birthday and I could not be missing him more! Lately he has been carrying around the weight of the world on his shoulders.. trying to be both father and step-in mother to the girls once again. He does so well at both. They were all here this weekend but he and I hardly saw each other between taking turns watching over Sam and the girls. I was so thankful for a spot at the Ron McD house for those couple days because we did share a few meals and the girls got to see us all together except for Samuel.
Samuel pulled his ND tube out once again today shortly after we moved over to the floor from the PICU. This is always an ordeal and x rays have to be done to make sure it is in the right place. This time it was not so they had to do it twice. This child could light up a dark room with all the radiation he has had in his little life.
I was blessed with a few sweet visitors praying for our little man today. I know they probably think I look like I was run over earlier in the day but getting no sleep can do a number on you in here. They were a huge pick-up for my mood and if they are reading I hope they know how thankful I am for their friendship and prayers.
I really am trying hard to stay upbeat and not get bent out of joint over the steps back we seem to be taking. I need to keep rekindling my hope and not get so wrapped up in the future prognosis of things. Sam is doing really well on many levels today and those are the celebrations I have to keep lifting up. He has been very sweet today and was almost laughing as I rolled him in his baby barrito style swaddling (intended to stop the grabbing of the tubes). He had been mad because they put splints on his arms and wrapped him so tight to avoid another tube pulling incident. He found it funny when I added in the whooshing and buzzing sound effects as we rolled and worked on some PT moves.. I think he is just tired of laying in bed with nothing to do. So the restlessness is a good change from the little boy I brought in here gasping for every breath and struggling with GI pain. Dare I hope that after the GJ is placed we might get to leave?
But I am left scared of what taking him home will mean this time as it is no little deal taking him home with the picc line..he is a baby and will eventually get those grabby hands around this line..and with his history of not clotting well I fear him pulling it out and bleeding out or some scarey scenerio. They said we might be able to come back for the mediport to be placed outpatient but I don't know when I want to put him through yet another procedure. I keep thinking about how now the GJ tube will require continuous feeds most all the time instead of the part time or bolus gtube feeds that he gets currently. The intestines can't handle full feeds in short periods. But what I am left wondering is if our tummy was so slow digesting the food , will the intestines be any faster? I am not 100% sure this is going to be a quick fix..for now I have to pray this just buys us more options.
The last part of the day I had an opportunity to speak with the mother of a child with a rare disease known as canavans. It was wonderful to speak with her about how she approached her son's complex medical issues and concerns of insurance and coverage for home nursing. It seems like she had to battle the insurance companies before she finally got the help she needed for him. Her son has defied the odds and is doing well in his twenties when they never thought he would live past the toddler years. She seemed to hold onto to her faith and hope and that is what I fully intend to do for Samuel.
Here is a pic of sofia driving her sister wild..she is always working hard to drive her big sister nuts.
Lastly..my mom had her birthday this weekend and she has been away for about a month visiting my sister and her 4 munchkins (while hubby is still deployed) down in Tampa. They had a great Christmas and New Years. I miss her very much. It is difficult since other than the serious fall out of loosing portions of her face to the cancer and then one eye, our biggest hurdle is communication as she is now deaf. She handles this quite well but I hate not being able to call her and and just chat. I am adding some Christmas pics of the girls and home below as I am missing them and home so much..
Saturday, January 1, 2011
1.1.11
Happy New Years.. and Happy Birthday to Nana and Grandpa Bob. We are full of hope for a better year in 2011. I am listening for any directions God wants to whisper in my ear or heart.. I am giving it all up to Him cause I know when I have given all of my earthly skill and am still coming up short.
Friday morning Samuel failed his gastric emptying test, taking over 120 minutes to get 45 mls (less than 2 ozs and 6 ozs is a normal meal amount) from the stomach to the intestines. This is way too long a period so they have decided to bump his food past the stomach to the intestines by ND tube but what will happen there with it is anyone's guess. Getting the tube down was not an easy task as he is rather unable to protect his airway well and freaks out when anything is put in there. So under light sedation they finally got it in only to have him yank it out later today. It is irritating for him to do this as he then has to get another x ray to confirm it is placed properly. SO now it is back in place and he is getting feeds again at a slow rate. I guess we will know soon if GJ is needed to replace his gtube for long term use.
My girls were here for the weekend and so Jason spent most of the time being the one with Sam while I got to spend time with them at the ron mcd house. It was so nice to see them but is also always a bit strained too. The girls can feel our tension, the worry and are usually seeing that we are overly distracted. This opens up time for them to punch buttons and test boundaries. The fussing with each other was driving me up the wall but with girls as close in age as they are, it would probably be happening whether or not their brother was so medically complex and soaking up all the attention for the past year. It also seems to work the other way too..when things are bad with Sammy, they get away with more out of pure distraction and then they start thinking they get their own way and can trad on the rules. So we have a battle of wills and lots of time outs and hugs and I never know what helps most..the hugs or the firm discipline.
They love Sam so much and I am thankful they have never resented him in any way. It makes me want to break down and cry when they ask me: "Mom, why can't we take Sam home today? Why can't the hospital make Sam all better? Why do you and Sam have to leave us?" It hurts BIG time but I know they also are growing from all this mess and are learning about love and how not everyone is like them. I expect they will have immense empathy for the sick and disabled. Right now I just wish they had more of it for each other.:)
I am not sure what the plan is for this week.. I really thought it would just be a few days here and home again but I have no idea why I thought that as he has never had a hospitalization under a week before. He is actually doing alot better on a respiratory level, breathing on his own and at good sat levels other than the rare times his heart takes a nose dive and drags the o2 sats down with it. But none tonight so far..fingers crossed. He enjoyed two rousing readings of Dr Seuss earlier and the nurse tonight from memory recanted her own favorite Dr Seuss. I will say it over and over.. our nurses here are always so loving in their way of caring for our Samuel. Other than rare occasions, we have also always loved his physicians and are blessed by their efforts to find solutions. Unfortunately, we are just learning that his set of issues are not receptive to the usual quick fixes. He likes to do things his own way.
Friday morning Samuel failed his gastric emptying test, taking over 120 minutes to get 45 mls (less than 2 ozs and 6 ozs is a normal meal amount) from the stomach to the intestines. This is way too long a period so they have decided to bump his food past the stomach to the intestines by ND tube but what will happen there with it is anyone's guess. Getting the tube down was not an easy task as he is rather unable to protect his airway well and freaks out when anything is put in there. So under light sedation they finally got it in only to have him yank it out later today. It is irritating for him to do this as he then has to get another x ray to confirm it is placed properly. SO now it is back in place and he is getting feeds again at a slow rate. I guess we will know soon if GJ is needed to replace his gtube for long term use.
My girls were here for the weekend and so Jason spent most of the time being the one with Sam while I got to spend time with them at the ron mcd house. It was so nice to see them but is also always a bit strained too. The girls can feel our tension, the worry and are usually seeing that we are overly distracted. This opens up time for them to punch buttons and test boundaries. The fussing with each other was driving me up the wall but with girls as close in age as they are, it would probably be happening whether or not their brother was so medically complex and soaking up all the attention for the past year. It also seems to work the other way too..when things are bad with Sammy, they get away with more out of pure distraction and then they start thinking they get their own way and can trad on the rules. So we have a battle of wills and lots of time outs and hugs and I never know what helps most..the hugs or the firm discipline.
They love Sam so much and I am thankful they have never resented him in any way. It makes me want to break down and cry when they ask me: "Mom, why can't we take Sam home today? Why can't the hospital make Sam all better? Why do you and Sam have to leave us?" It hurts BIG time but I know they also are growing from all this mess and are learning about love and how not everyone is like them. I expect they will have immense empathy for the sick and disabled. Right now I just wish they had more of it for each other.:)
I am not sure what the plan is for this week.. I really thought it would just be a few days here and home again but I have no idea why I thought that as he has never had a hospitalization under a week before. He is actually doing alot better on a respiratory level, breathing on his own and at good sat levels other than the rare times his heart takes a nose dive and drags the o2 sats down with it. But none tonight so far..fingers crossed. He enjoyed two rousing readings of Dr Seuss earlier and the nurse tonight from memory recanted her own favorite Dr Seuss. I will say it over and over.. our nurses here are always so loving in their way of caring for our Samuel. Other than rare occasions, we have also always loved his physicians and are blessed by their efforts to find solutions. Unfortunately, we are just learning that his set of issues are not receptive to the usual quick fixes. He likes to do things his own way.
Friday, December 31, 2010
New Year's Eve and the terrible, horrible, no good, very bad day
We had a bad day yesterday but today has not been so great either..looking at the positive though.. he is stable most of the time today and is not on the o2 and is sleeping at the moment.. or actually all day really.
Starting with yesterday.. He had a picc line placed in the morning and of course I knew going in that there would be complications..there always are. Sam is never predictable except in that I CAN ALWAYS count on him being unpredictable and suprising everyone by what we have begun to call "misbehavior". For those reading who are new to Sam..misbehavior is when Sam decides to stop breathing or his heart rate plummets out of the blue (no pun intended). This is called Bradycardia and for Sam who normally has a heart rate in the 120-140 range (normal for babies), bradys are times when his heart falls dangerously low..officially below 100 but not symptomatic on him till in 70 to 50 range. Picture below is example of him dropping from 130s..it eventually stopped this time around 70s and then headed back up so not a biggie. He does this fast and with no warning and sometimes he does not turn back up too well. This is bad in that his heart has stopped before for short periods which is called asystole. I know you were not planning on MED101 class but Jason teases me that I have gotten so comfortable with the terms that I don't take in the general public's learning curve on this stuff.
So yesterday I counted on more "bradys" during the picc line placement procedure down in interventional radiology. They do it with basic anesthesia and they usually only require an LMA tube placement which just keeps his airway open at the mouth and top of the throat. I made sure they knew with mito kids they have to take malignant hypothermia precautions. As usual, when Sam is given meds to relax...he really relaxes. So, he had to be intubated and that was our first unplanned aspect of the procedure. Then they found what was thought to be pneumonia in the top of the left lung and then to make things more fun, the usually easy insertion of the PICC Line was complicated by him not clotting well. This Picc line is a central line to an artery near his heart which will allow easier and less damaging access for giving him medication and TPN (liquid food). The radiology Dr said he had to put pressure on it for a while to stop the bleeding and it was not an anticipated situation but he kept telling me he could see how complex Sam was and how sorry he was for our anguish. Very kind man. What situation with Sam is EVER an anticipated one?? Maybe the blood clot issue is related to his dysautonomia or one of his many meds.
They did get his blood to finally clot and then were able to extubate him but he required 02 through the night. He has been off it and only has occasional bradys and desaturations of his oxygen levels at this point.
Part 2 of the terrible, horrible, no good, very bad day (I love that book..) was a not so thoughtful Dr who needs some "sensitivity training", as the social worker gal put it who always checks in on us. This guy was consulted for some reason and I have no idea which specialty but he came in and was having me fill out an insurance claim form he needed when he asked me about Sam's new diagnosis about the mito disease stuff and while here went on to say, "do you have other kids?" yes I said..two daughters 5 and 4. "are they healthy?" yes.. we are very blessed that they are very healthy. He then proceeded in a flat and rude manner to say, "good..cause it does not look good for him." and with that turned and exited our room....AHHHHH. WHO DOES THAT????
Lord, thank you for giving me strength to control my anger at that moment. Before Sam's birth I never experienced such crazy interactions as I have this year. I know I am the LAST person in the world to make judgement about what people sometimes say or do thoughtlessly as I am the one who often puts my foot in my mouth during awkward moments but I sure hope I am never guilty of knowingly walking into a critical child's room and wreaking unnecessary havoc on a beaten up family's emotions. I wasn't born yesterday and I KNOW Sam's situation is serious and he certainly could have a bad prognosis. NO - I would not want a Dr sugar coating anything but my goodness..I don't need that kind of negative attitude from someone clearly NOT that involved in his care or even looking for solutions. Which.. brings me to my last issue with that interaction. I had the social worker looking up who this guy was and they could not figure out from his signature who he is.. should I be concerned that this random guy in a badge made me fill out insurance forms and signed intials KM in the Dr. field of the consult spot on the chart?? There are soo many in and out of here that I often can't make hide or hair of who is with what service. I usually ask but I was so tired and then he was gone in a flash. I guess I just needed to vent about that and let it go..
Today we also had another chest xray and rediology told us it was pneumonia but the pediatrician thinks it is atelectasis?? which is when the bronchi are not being fully expanded with his breathing and so condenses in and that causes the cloudiness on the x rays? either way she said antibiotics are on board.
Big part of today was the Gastric Emptying Study under flouroscopy. He failed. It took him 121 minutes to move less than 2 ozs (6 ozs is a regular feed for him)from the stomach to the intestines by g tube. UGH. He will likely require a G/J tube placed to bypass the tummy and go on to the intestines. But my issue is also that the intestines are always really slow too so will it solve anything? He is on laxatives 3 times a day and colace stool softener and still sometimes goes like 9 days before he stooles. UGh. They can do a pyloro plasty but that is permanent and I so hate permanent stuff plus if this is an energy muscle issue.. will it solve anything to be just opening that up more so it can sit in traffic in the intestines? Plus he might not have good energy stores to get through another big surgery. He coded a bunch of times after the last one and then stopped tracking for two months..way too stressful for our little man.
On a sweet note..Sam does not laugh out loud but he has the sweetest impish squicky laugh that can only be heard with strong ears but has the biggest smile you ever saw when you play the animal finger puppets a friend sent us..Thank you Roake Clan! He loves them! His nurses have even jumped in on the act. We can't thank all those praying for Sam enough for all the prayer..we feel it and know you are the reason Sam stays strong. He is teaching me everyday about joy and God's gifts.. real gifts are love and family and friends and connections..all the other junk can just go out the door. If you don't have love and build bonds and enjoy the moment and learning from eachother and God..you have nothing. But through God... we can do all things! So that is where we are today.. terrible day or week as it is right now..we can get through it and onto bigger and better days.
God works in mysterious ways. First, He brought a kind friend to my rescue yesterday right after the not-so-nice Dr left..just as I was needing to get us checked into the ron Mc donald house here so that when Jason arrived with the girls we would have a resting place for the weekend. I needed a ride over there and was a little down and flustered. She called at just that moment and said.."guess what, I am right across the street." I can't believe she drove an hour with her family of 5 to have like 10 minutes with me but it was such a blessing and her family watched the girls while Jason and I got to pray with Sam at his cribside last night. It is rather rare for us to be able to do this as siblings can't be in the PICU. SO I thank God for her friendship and for all my friends who have been such a HUGE support.
Secondly, we ate dinner together as a family at the house as we were unable to reenter during shift change. That is a nervous time for me to leave Sam alone and then in walked Richard Lamar, a friend from Highschool whose baby was born 11 weeks early when his wife was forced to deliver due to preeclampsia and HELP syndrome. Their baby is like 2 lbs and in the NICU here. She is doing ok for now but Lord, please watch over baby evelyn and all those innocent little ones in the NICU. I hope we can be of support to them when they need it as we have become pros at some aspects of this experience. Their family needs our prayers and I know as this is their first child, that they are probably really overwhelmed.
The last little info I am trying to figure out is the plan for moving forward..should we be transfering to shands or atlanta and can we do that with the new insurance not in place and the old ending today? His GI surgeon is at UF and we loved him but hated neuro there for delaying the biopsy and dismissing him as a newborn who would probably "grow out of this" plus they kinda got to a stuck point and left us with the tracheomalacia diagnosis and no other ideas. They left me with the impression that likely the airway issues were caused in utero, at birth or after and this led to neuro damage leading to more systematic damage which could still be how the mitochondria started dysfunctioning but seemed they gave up on more investigation at some point. For cardio surgery if pacemaker was needed and for the mito GOD we loved atlanta...and so that is another good option. They only have one surgeon and a handful of outpatient type GI guys and so resources are limited. They can't even place the GJ till the surgeon returns from vacation next week...boy we live in a local yocal area if the only surgeon at the biggest hospital we have an hour from home is not even on-call!!
I need to see about how insurance issues would work with the agent.. He called today to say maybe we should sign up for cobra as a 3rd level of surity that we don't have a gap in coverage while we wait for independent insurance coverage.. I am sooo nervous. We can't afford ambulance again as we have been slammed this year in paying for those each time so would that mean holding our breath while we drive 6 hrs with IV poles out the back window and tanks in tow? yikes. What to do.. What to do.. well I will sign off for now..God Bless.
Starting with yesterday.. He had a picc line placed in the morning and of course I knew going in that there would be complications..there always are. Sam is never predictable except in that I CAN ALWAYS count on him being unpredictable and suprising everyone by what we have begun to call "misbehavior". For those reading who are new to Sam..misbehavior is when Sam decides to stop breathing or his heart rate plummets out of the blue (no pun intended). This is called Bradycardia and for Sam who normally has a heart rate in the 120-140 range (normal for babies), bradys are times when his heart falls dangerously low..officially below 100 but not symptomatic on him till in 70 to 50 range. Picture below is example of him dropping from 130s..it eventually stopped this time around 70s and then headed back up so not a biggie. He does this fast and with no warning and sometimes he does not turn back up too well. This is bad in that his heart has stopped before for short periods which is called asystole. I know you were not planning on MED101 class but Jason teases me that I have gotten so comfortable with the terms that I don't take in the general public's learning curve on this stuff.
So yesterday I counted on more "bradys" during the picc line placement procedure down in interventional radiology. They do it with basic anesthesia and they usually only require an LMA tube placement which just keeps his airway open at the mouth and top of the throat. I made sure they knew with mito kids they have to take malignant hypothermia precautions. As usual, when Sam is given meds to relax...he really relaxes. So, he had to be intubated and that was our first unplanned aspect of the procedure. Then they found what was thought to be pneumonia in the top of the left lung and then to make things more fun, the usually easy insertion of the PICC Line was complicated by him not clotting well. This Picc line is a central line to an artery near his heart which will allow easier and less damaging access for giving him medication and TPN (liquid food). The radiology Dr said he had to put pressure on it for a while to stop the bleeding and it was not an anticipated situation but he kept telling me he could see how complex Sam was and how sorry he was for our anguish. Very kind man. What situation with Sam is EVER an anticipated one?? Maybe the blood clot issue is related to his dysautonomia or one of his many meds.
They did get his blood to finally clot and then were able to extubate him but he required 02 through the night. He has been off it and only has occasional bradys and desaturations of his oxygen levels at this point.
Part 2 of the terrible, horrible, no good, very bad day (I love that book..) was a not so thoughtful Dr who needs some "sensitivity training", as the social worker gal put it who always checks in on us. This guy was consulted for some reason and I have no idea which specialty but he came in and was having me fill out an insurance claim form he needed when he asked me about Sam's new diagnosis about the mito disease stuff and while here went on to say, "do you have other kids?" yes I said..two daughters 5 and 4. "are they healthy?" yes.. we are very blessed that they are very healthy. He then proceeded in a flat and rude manner to say, "good..cause it does not look good for him." and with that turned and exited our room....AHHHHH. WHO DOES THAT????
Lord, thank you for giving me strength to control my anger at that moment. Before Sam's birth I never experienced such crazy interactions as I have this year. I know I am the LAST person in the world to make judgement about what people sometimes say or do thoughtlessly as I am the one who often puts my foot in my mouth during awkward moments but I sure hope I am never guilty of knowingly walking into a critical child's room and wreaking unnecessary havoc on a beaten up family's emotions. I wasn't born yesterday and I KNOW Sam's situation is serious and he certainly could have a bad prognosis. NO - I would not want a Dr sugar coating anything but my goodness..I don't need that kind of negative attitude from someone clearly NOT that involved in his care or even looking for solutions. Which.. brings me to my last issue with that interaction. I had the social worker looking up who this guy was and they could not figure out from his signature who he is.. should I be concerned that this random guy in a badge made me fill out insurance forms and signed intials KM in the Dr. field of the consult spot on the chart?? There are soo many in and out of here that I often can't make hide or hair of who is with what service. I usually ask but I was so tired and then he was gone in a flash. I guess I just needed to vent about that and let it go..
Today we also had another chest xray and rediology told us it was pneumonia but the pediatrician thinks it is atelectasis?? which is when the bronchi are not being fully expanded with his breathing and so condenses in and that causes the cloudiness on the x rays? either way she said antibiotics are on board.
Big part of today was the Gastric Emptying Study under flouroscopy. He failed. It took him 121 minutes to move less than 2 ozs (6 ozs is a regular feed for him)from the stomach to the intestines by g tube. UGH. He will likely require a G/J tube placed to bypass the tummy and go on to the intestines. But my issue is also that the intestines are always really slow too so will it solve anything? He is on laxatives 3 times a day and colace stool softener and still sometimes goes like 9 days before he stooles. UGh. They can do a pyloro plasty but that is permanent and I so hate permanent stuff plus if this is an energy muscle issue.. will it solve anything to be just opening that up more so it can sit in traffic in the intestines? Plus he might not have good energy stores to get through another big surgery. He coded a bunch of times after the last one and then stopped tracking for two months..way too stressful for our little man.
On a sweet note..Sam does not laugh out loud but he has the sweetest impish squicky laugh that can only be heard with strong ears but has the biggest smile you ever saw when you play the animal finger puppets a friend sent us..Thank you Roake Clan! He loves them! His nurses have even jumped in on the act. We can't thank all those praying for Sam enough for all the prayer..we feel it and know you are the reason Sam stays strong. He is teaching me everyday about joy and God's gifts.. real gifts are love and family and friends and connections..all the other junk can just go out the door. If you don't have love and build bonds and enjoy the moment and learning from eachother and God..you have nothing. But through God... we can do all things! So that is where we are today.. terrible day or week as it is right now..we can get through it and onto bigger and better days.
God works in mysterious ways. First, He brought a kind friend to my rescue yesterday right after the not-so-nice Dr left..just as I was needing to get us checked into the ron Mc donald house here so that when Jason arrived with the girls we would have a resting place for the weekend. I needed a ride over there and was a little down and flustered. She called at just that moment and said.."guess what, I am right across the street." I can't believe she drove an hour with her family of 5 to have like 10 minutes with me but it was such a blessing and her family watched the girls while Jason and I got to pray with Sam at his cribside last night. It is rather rare for us to be able to do this as siblings can't be in the PICU. SO I thank God for her friendship and for all my friends who have been such a HUGE support.
Secondly, we ate dinner together as a family at the house as we were unable to reenter during shift change. That is a nervous time for me to leave Sam alone and then in walked Richard Lamar, a friend from Highschool whose baby was born 11 weeks early when his wife was forced to deliver due to preeclampsia and HELP syndrome. Their baby is like 2 lbs and in the NICU here. She is doing ok for now but Lord, please watch over baby evelyn and all those innocent little ones in the NICU. I hope we can be of support to them when they need it as we have become pros at some aspects of this experience. Their family needs our prayers and I know as this is their first child, that they are probably really overwhelmed.
The last little info I am trying to figure out is the plan for moving forward..should we be transfering to shands or atlanta and can we do that with the new insurance not in place and the old ending today? His GI surgeon is at UF and we loved him but hated neuro there for delaying the biopsy and dismissing him as a newborn who would probably "grow out of this" plus they kinda got to a stuck point and left us with the tracheomalacia diagnosis and no other ideas. They left me with the impression that likely the airway issues were caused in utero, at birth or after and this led to neuro damage leading to more systematic damage which could still be how the mitochondria started dysfunctioning but seemed they gave up on more investigation at some point. For cardio surgery if pacemaker was needed and for the mito GOD we loved atlanta...and so that is another good option. They only have one surgeon and a handful of outpatient type GI guys and so resources are limited. They can't even place the GJ till the surgeon returns from vacation next week...boy we live in a local yocal area if the only surgeon at the biggest hospital we have an hour from home is not even on-call!!
I need to see about how insurance issues would work with the agent.. He called today to say maybe we should sign up for cobra as a 3rd level of surity that we don't have a gap in coverage while we wait for independent insurance coverage.. I am sooo nervous. We can't afford ambulance again as we have been slammed this year in paying for those each time so would that mean holding our breath while we drive 6 hrs with IV poles out the back window and tanks in tow? yikes. What to do.. What to do.. well I will sign off for now..God Bless.
Thursday, December 30, 2010
Tank is empty and Sammy is smiling
If you are not up to date on where we are now with everything..scan on down to last night's blog and info about the news from the diagnosis.
Update this A.M.:
Sam had a MUCH easier night with nothing in the Tum Tum. He was even smiling a bit. We got to come off isolation status as all the viral tests came back normal. Not a suprise to me. I don't really think he had a big bug. I think the slight fever from the vaccine put him in a weak state and the mito issues led to a total breakdown, the GI of which is usually last to hit. So we will have to figure out a new protocol for vaccines..I want to say no to them altogether but all these mito docs say for all the problems mito kids seem to have with them it would be FAR worse if they got exposed to one of the diseases covered by those vaccines. EEECH..need help on weighing out that one.
We get the picc line this morning and they said he will be getting some gas for the procedure but hopefully that does not put him over the edge as in the past. That should be in the next hour or so and then he can get much needed TPN. They said a permanent medport can be placed outpatient under the skin for long term central line use but a Picc line can be kept for up to a year I believe..one more thing to service at home though.
No reflexes in his right leg today. I know not to focus on the neuro stuff when I am already so worried about the gut issues, the bradys and the resp distress but I always worry the brain will loose precious energy every time we get sick. For all his limitations he seems very smart to us. I read an article that said these kids can have neuro decline in the 2 weeks following an illness because the body is sending whatever energy it can make to the illness, diverting it away from the organs that demand the most and so that is when his body starts breaking down. Gotta have some fuel and when your body does not make fuel well, then you end up stuck on side of the road.. or in our case this year.. the pediatric ICU.
My understanding is his brain is always starved for energy which is why he has had diffused encepholopathy readings on the EEG. Maybe that can turn around once we start the new mito cocktail that was ordered. Those meds are intended to improve the bodies ability to produce energy on a cellular level.
NEED YOUR PRAYERS.. and not just for Sam to get better but on a different level for a huge issue that is hitting us hard. Our very fancy $1650/mth group insurance policy is terming tomorrow and we have applied for a new independent insurance policy also through BCBS and hopefully will be a more reasonable cost and not more than a mortgage payment as is the current policy. We left our current agent when he negatively told us that even though the law says Sam can not be denied for prexisting conditions, that the insurance company will find a way to deny us..that would be fraud in our assessment so we went with someone who will fight for Sam's coverage.
We have been slammed financially from every direction this year and we need some prayers for peace and control. If we could obtain nursing aid at home I would able to help more with Jason's business and so we are praying for a solution on that level as well. Thank you for all the prayers. Forgive me for the long posts..I am missing my mother so badly as she is way down south visiting my sister. She is deaf I can't call her so this is the only way to communicate. God Bless.
Update this A.M.:
Sam had a MUCH easier night with nothing in the Tum Tum. He was even smiling a bit. We got to come off isolation status as all the viral tests came back normal. Not a suprise to me. I don't really think he had a big bug. I think the slight fever from the vaccine put him in a weak state and the mito issues led to a total breakdown, the GI of which is usually last to hit. So we will have to figure out a new protocol for vaccines..I want to say no to them altogether but all these mito docs say for all the problems mito kids seem to have with them it would be FAR worse if they got exposed to one of the diseases covered by those vaccines. EEECH..need help on weighing out that one.
We get the picc line this morning and they said he will be getting some gas for the procedure but hopefully that does not put him over the edge as in the past. That should be in the next hour or so and then he can get much needed TPN. They said a permanent medport can be placed outpatient under the skin for long term central line use but a Picc line can be kept for up to a year I believe..one more thing to service at home though.
No reflexes in his right leg today. I know not to focus on the neuro stuff when I am already so worried about the gut issues, the bradys and the resp distress but I always worry the brain will loose precious energy every time we get sick. For all his limitations he seems very smart to us. I read an article that said these kids can have neuro decline in the 2 weeks following an illness because the body is sending whatever energy it can make to the illness, diverting it away from the organs that demand the most and so that is when his body starts breaking down. Gotta have some fuel and when your body does not make fuel well, then you end up stuck on side of the road.. or in our case this year.. the pediatric ICU.
My understanding is his brain is always starved for energy which is why he has had diffused encepholopathy readings on the EEG. Maybe that can turn around once we start the new mito cocktail that was ordered. Those meds are intended to improve the bodies ability to produce energy on a cellular level.
NEED YOUR PRAYERS.. and not just for Sam to get better but on a different level for a huge issue that is hitting us hard. Our very fancy $1650/mth group insurance policy is terming tomorrow and we have applied for a new independent insurance policy also through BCBS and hopefully will be a more reasonable cost and not more than a mortgage payment as is the current policy. We left our current agent when he negatively told us that even though the law says Sam can not be denied for prexisting conditions, that the insurance company will find a way to deny us..that would be fraud in our assessment so we went with someone who will fight for Sam's coverage.
We have been slammed financially from every direction this year and we need some prayers for peace and control. If we could obtain nursing aid at home I would able to help more with Jason's business and so we are praying for a solution on that level as well. Thank you for all the prayers. Forgive me for the long posts..I am missing my mother so badly as she is way down south visiting my sister. She is deaf I can't call her so this is the only way to communicate. God Bless.
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