Thursday, March 26th, 2009
Hi Everyone,
Its been a while since my last update. Things have been up and down. i can't say we have good days but we are having good moments in a day which is more than i can ask for. mama hasn't been doing to well (emotionally) lately. I sat down a few times since march 19th to write but just couldn't. I suppose some moments it hits me more than others that my son is so ill and has cancer. Still after 5 months some days that word seems to not sink in as well as some other days.
Montreal is nearing, which means we are taking Jacob for more treatments that will make him more sick than ever. It scares me, it actually makes me sick to my stomach. Baby is coming soon and I am overwhelmed with thoughts of how we are going to get through this with a new baby. I have no idea. Jacob is doing ok. Yes, still the tummy pains and vomiting but when that is controlled with medication we have a smiling, joking, sarcastic boy on our hands. He makes us laugh. I love when he makes us laugh. The strength in his legs seem to be improving but the walk is no better. We are hoping that the braces and with time things will heal. I had asked for him to see a psychologist and a couple of days later he was there. I am very happy Jacob warmed up and opened up to him so easily to be able to deal with his swallowing issue. He made up a story about this little boy named Austin who had a brain tumor. He also couldn't swallow and it made him extremely sad that he couldn't eat or drink anymore. As much as it made me cry when I heard his story I was happy to see that he is able to talk about it and hopely learn to deal with his feelings.
He is almost done radiation. I can't believe he has only 8 more to go but the spinal radiation has hit him hard. He is burnt and uncomfortable and I just want this to be over so he can have a little break from everything. He deserves to be a little boy for a while. He deserves to have one goodnight sleep. He deserves to be happy and comfortable for more than an hour or two at a time. He deserves life. I love you Jacob.
Thursday, March 26, 2009
Thursday, March 19, 2009
Like a Family
Thursday, March 19th, 2009
Hi Everyone,
I always feel the need to start with a thank you to everyone who is following Jacob's days and for all the messages and support we get. You may not here back from us often but please know that we appreciate every message, quotes, encouragments, letters, cards we get. We truly feel blessed to have all of you take the time to read Jacob's Journey.
I haven't written in the last few days because we have had a bit of a rough time with Jacob. I didn't have energy to sit here and tell you all AGAIN that he wasn't doing well because i figured you may all be tired of reading the same thing...but then I figured this is what this journey is all about. Its about bad days and good days and well the reality right now for us is that most of our days are bad.
Its been a really rough couple of days. Jason and I have had to sit by Jacob's side and watch him suffer in pain and not be able to do anything about it. Its been dose of morphine after dose after dose and all that for about a half hour relief at a time. He is not walking properly and and more nausous as ever.
The MRI results came back fine. Everything is good with his spine which is a relief in a way but his leg issues are still a mystery now. We still have two sets of doctors, one who think its from the chemo drug and the other who thinks its not. But I suppose it doesn't matter anymore, now we need to focus on getting his legs back functioning like the vibrate 5 years old that he was just 5 months ago.
Tuesday was my night to stay. I completely lost it (AGAIN) I just can't handle seeing my baby suffer like that. I called Jason and just cried, tried to put in a few words but couldn't. So i suppose all he heard was the muffled sound of my voice. I told him i was done with all of this(AGAIN). I told him I just didn't want to do this anymore. I don't want to do this to him anymore. I dont want to go to Montreal for what is suppose to be more intense chemo than he already had. I don't want to explain to him that he will get even sicker now....all this so he can get better. I just don't want to do it anymore. I know i've said it so many time already but i just can't do this anymore....if I am this drained I can even imagine how Jacob is feeling. It is like being a family here on 4 north at CHEO even if we don't all know each other. A mother came to me the next day, had never really talked to her before and said "I am sorry to intrude but i noticed you on the phone yesterday and just wanted to know if you were ok". So we shared our stories. I realize, I am not the only one who feels this way.
I am so tired.
Today is a better day. Thank you Martha the nurse who decided to go the extra mile to try and find relief for Jacob, the pain management team has now come up with a medication patch that so far seems to have relieved Jacob at this time. Today, he is up and talking and we just came back from the gym. So far he has not been in pain to the point where he is bedridden. so i can say today the sun is shining for a reason. He was very excited to hear from his little classmates. I had sent a letter to the school for the parents and his friends are writing to him. His face was priceless when I told him some had written to him. Although there was sadness in his eyes from just missing them, there was hapiness in his heart to know they will be coming soon.
Jacob, I know you are fed up baby. No one can imagine how you are feeling. It breaks mommy and daddy's heart when you say "I can't take this anymore" and it breaks our hearts when you are so sick you hit your bed with your fists out of pure desperation to want your pain to go away. Just please try and remember that we are by your side....ALWAYS.
Hi Everyone,
I always feel the need to start with a thank you to everyone who is following Jacob's days and for all the messages and support we get. You may not here back from us often but please know that we appreciate every message, quotes, encouragments, letters, cards we get. We truly feel blessed to have all of you take the time to read Jacob's Journey.
I haven't written in the last few days because we have had a bit of a rough time with Jacob. I didn't have energy to sit here and tell you all AGAIN that he wasn't doing well because i figured you may all be tired of reading the same thing...but then I figured this is what this journey is all about. Its about bad days and good days and well the reality right now for us is that most of our days are bad.
Its been a really rough couple of days. Jason and I have had to sit by Jacob's side and watch him suffer in pain and not be able to do anything about it. Its been dose of morphine after dose after dose and all that for about a half hour relief at a time. He is not walking properly and and more nausous as ever.
The MRI results came back fine. Everything is good with his spine which is a relief in a way but his leg issues are still a mystery now. We still have two sets of doctors, one who think its from the chemo drug and the other who thinks its not. But I suppose it doesn't matter anymore, now we need to focus on getting his legs back functioning like the vibrate 5 years old that he was just 5 months ago.
Tuesday was my night to stay. I completely lost it (AGAIN) I just can't handle seeing my baby suffer like that. I called Jason and just cried, tried to put in a few words but couldn't. So i suppose all he heard was the muffled sound of my voice. I told him i was done with all of this(AGAIN). I told him I just didn't want to do this anymore. I don't want to do this to him anymore. I dont want to go to Montreal for what is suppose to be more intense chemo than he already had. I don't want to explain to him that he will get even sicker now....all this so he can get better. I just don't want to do it anymore. I know i've said it so many time already but i just can't do this anymore....if I am this drained I can even imagine how Jacob is feeling. It is like being a family here on 4 north at CHEO even if we don't all know each other. A mother came to me the next day, had never really talked to her before and said "I am sorry to intrude but i noticed you on the phone yesterday and just wanted to know if you were ok". So we shared our stories. I realize, I am not the only one who feels this way.
I am so tired.
Today is a better day. Thank you Martha the nurse who decided to go the extra mile to try and find relief for Jacob, the pain management team has now come up with a medication patch that so far seems to have relieved Jacob at this time. Today, he is up and talking and we just came back from the gym. So far he has not been in pain to the point where he is bedridden. so i can say today the sun is shining for a reason. He was very excited to hear from his little classmates. I had sent a letter to the school for the parents and his friends are writing to him. His face was priceless when I told him some had written to him. Although there was sadness in his eyes from just missing them, there was hapiness in his heart to know they will be coming soon.
Jacob, I know you are fed up baby. No one can imagine how you are feeling. It breaks mommy and daddy's heart when you say "I can't take this anymore" and it breaks our hearts when you are so sick you hit your bed with your fists out of pure desperation to want your pain to go away. Just please try and remember that we are by your side....ALWAYS.
Sunday, March 15, 2009
Soulmates
Sunday, March 15th, 2009.
Today was not a good day. This evening is no better. Jacob is very sick. Our usual vomiting and tummy pains. Its hard to go from the day we had yesterday to today. He was barely able to get out of bed.
I am at the hospital tonight with Jacob, we sent daddy home early today, he looked exhausted. Jacob talked about daddy all evening. At one point he turns around and asks the nurse for the picture on the dresser. It was a picture of him and daddy and he stared at it for about 2 minutes, then just put it back and layed back down. I truly believe in soulmates and now am convinced that Jacob and Jason are soulmates. I believe everyone out there is meant to be with a specific person and Jason and Jacob were destined to be father and son. They have a bond that I have never seen before. Its a look, I can't describe it in words but when they look at each , it just fits perfectly. I truly believe the love Jason has for Jacob is what will heal him and bring our baby home. He is truly a wonderful father.
Tomorrow Jacob is scheduled for his MRI. Its going to be a busy day. Tomorrow i will plea to the doctors one more time to try and find out what these tummy pains are and try to make them go away. I wish I could kiss away his pain. that's all I have to give him. I wish I had more.
sleep well Jacob. Mommy is right beside you tonight.
Today was not a good day. This evening is no better. Jacob is very sick. Our usual vomiting and tummy pains. Its hard to go from the day we had yesterday to today. He was barely able to get out of bed.
I am at the hospital tonight with Jacob, we sent daddy home early today, he looked exhausted. Jacob talked about daddy all evening. At one point he turns around and asks the nurse for the picture on the dresser. It was a picture of him and daddy and he stared at it for about 2 minutes, then just put it back and layed back down. I truly believe in soulmates and now am convinced that Jacob and Jason are soulmates. I believe everyone out there is meant to be with a specific person and Jason and Jacob were destined to be father and son. They have a bond that I have never seen before. Its a look, I can't describe it in words but when they look at each , it just fits perfectly. I truly believe the love Jason has for Jacob is what will heal him and bring our baby home. He is truly a wonderful father.
Tomorrow Jacob is scheduled for his MRI. Its going to be a busy day. Tomorrow i will plea to the doctors one more time to try and find out what these tummy pains are and try to make them go away. I wish I could kiss away his pain. that's all I have to give him. I wish I had more.
sleep well Jacob. Mommy is right beside you tonight.
Saturday, March 14, 2009
Just Like Old Times
Saturday, March 14th, 2009.
Hi Everyone, its been a busy couple of days. Jacob has been doing fairly well i am happy to say. Still cruising through his radiation treatments like the real super hero that he is. He is still having the same issues with the vomiting and tummy pains but morphine seems to help ease some of the pains. As for the vomiting there is nothing to be done for now except hold his hand and wipe his tears when he cries and says he can't take it anymore. His legs are still an issue, no sign of him walking any better. He is scheduled for an MRI on monday to eliminate any problems with his spine. God I hope there is nothing wrong with his spine. The doctors are divided. Its funny cause the oncologists who actually gave him the chemo drug don't think its what caused this sudden symptom and on the other side, the team of doctors who are following Jacob think it is. very interesting...i hope nothing comes out of this MRI. i hope its a temporary issue that will be solved with time. If radiation is what may be causing this then i am stopping the spinal radiation immediately. We will hopefully find out more this week.
So today we went home again. It was wonderful. Beautiful day, Jacob's friend came over today and it was like old times. Although Jacob couldn't get up and run around like he used to, they played with every single toy he had, they laughed, they fought...just like old times.
We did have an incident just before coming back to the hospital. It was about food. Jacob has serious issues with this situation and it so overwhelming I can't even begin to explain to you what its like to have your child not be able to eat or drink. He was very sad for the rest of the time and when he looks at me with that look of pure sadness, I can't even control my tears anymore, so i just sit there beside him and hold him and cry with him. that's all we can do now. he needs to see that we know he is finding this very hard. I think Jacob is going to have to talk to to a psychologist about this. It is getting too overwhelming for Jason and I to try and comfort him. i just don't know what to do about it anymore or how to handle it. Its just too hard. If there is anything I can pray for tonight, anything is that no matter the outcome of this cancer that my Jacob will someday be able to have a glass of water and maybe taste food again...that's all I ask, we can deal with any other handicap he may have in the future but please God don't take this away from my baby. Please.
Jacob said to me and his daddy the other day:
mommy, daddy, this is what i want when i can eat again:
tacos.
st-hubert.
subway.
pizza pizza.
mcdonalds.
now please tell me, how does your heart not stop beating from sadness....mine does evertime.
Hi Everyone, its been a busy couple of days. Jacob has been doing fairly well i am happy to say. Still cruising through his radiation treatments like the real super hero that he is. He is still having the same issues with the vomiting and tummy pains but morphine seems to help ease some of the pains. As for the vomiting there is nothing to be done for now except hold his hand and wipe his tears when he cries and says he can't take it anymore. His legs are still an issue, no sign of him walking any better. He is scheduled for an MRI on monday to eliminate any problems with his spine. God I hope there is nothing wrong with his spine. The doctors are divided. Its funny cause the oncologists who actually gave him the chemo drug don't think its what caused this sudden symptom and on the other side, the team of doctors who are following Jacob think it is. very interesting...i hope nothing comes out of this MRI. i hope its a temporary issue that will be solved with time. If radiation is what may be causing this then i am stopping the spinal radiation immediately. We will hopefully find out more this week.
So today we went home again. It was wonderful. Beautiful day, Jacob's friend came over today and it was like old times. Although Jacob couldn't get up and run around like he used to, they played with every single toy he had, they laughed, they fought...just like old times.
We did have an incident just before coming back to the hospital. It was about food. Jacob has serious issues with this situation and it so overwhelming I can't even begin to explain to you what its like to have your child not be able to eat or drink. He was very sad for the rest of the time and when he looks at me with that look of pure sadness, I can't even control my tears anymore, so i just sit there beside him and hold him and cry with him. that's all we can do now. he needs to see that we know he is finding this very hard. I think Jacob is going to have to talk to to a psychologist about this. It is getting too overwhelming for Jason and I to try and comfort him. i just don't know what to do about it anymore or how to handle it. Its just too hard. If there is anything I can pray for tonight, anything is that no matter the outcome of this cancer that my Jacob will someday be able to have a glass of water and maybe taste food again...that's all I ask, we can deal with any other handicap he may have in the future but please God don't take this away from my baby. Please.
Jacob said to me and his daddy the other day:
mommy, daddy, this is what i want when i can eat again:
tacos.
st-hubert.
subway.
pizza pizza.
mcdonalds.
now please tell me, how does your heart not stop beating from sadness....mine does evertime.
Wednesday, March 11, 2009
Christmas in March
Wednesday, March 11th, 2009
Hi everyone, not much to report today, except that Jacob got to go home today for a few hours and we had the best afternoon at home as a family. he was well and happy to be sitting on his couch and playing with his
x-mas gifts. I suppose I should mention that our Christmas tree is still up with all of Jacob's gifts that he received but was very ill with pneumonia at the time, didn't get to see any of them. We are keeping the tree up until our baby comes home....so it looks like Christmas in july for us this year.
Tonight, I just tucked him in after being sick a few times. I am hoping he has settled now and gets some sleep without throwing up anymore....he deserves the break.
goodnight.
Hi everyone, not much to report today, except that Jacob got to go home today for a few hours and we had the best afternoon at home as a family. he was well and happy to be sitting on his couch and playing with his
x-mas gifts. I suppose I should mention that our Christmas tree is still up with all of Jacob's gifts that he received but was very ill with pneumonia at the time, didn't get to see any of them. We are keeping the tree up until our baby comes home....so it looks like Christmas in july for us this year.
Tonight, I just tucked him in after being sick a few times. I am hoping he has settled now and gets some sleep without throwing up anymore....he deserves the break.
goodnight.
Tuesday, March 10, 2009
Someone Wake Me Up
Tuesday, march 10th, 2009.
My last update was written with great sadness. I am still filled with sadness and burnt out even more now than I was a couple of days ago. I am happy to say that Jacob is not doing too bad. He still has the same unexplained tummy pains and the vomiting but overall seems to be doing ok. He is not able to stand on his legs at this time for some reason. This is a new issue. A few weeks ago, his legs were certainly not an issue, he was playing bowling in the hallway with his physio therapist, today he can barely stand let alone walk. We found out today that he will be fitted for braces, which are close to two thousand dollars we were told, for both legs to try and strenghten his legs so he is able to walk normally again. Funny, there's something else to add to his list of problems. A child who just 4 months ago was a typical healthy boy who had more energy than all of put together now can barely walk, cant swallow, deaf from one ear, blind from one eye, left facial paralysis, left vocal paralysis and all of that not knowing if its permanent or temporary. And now we have to add leg muscle issues. After two months of his last chemo treatment we find out that one of the drugs he received can cause this problem. NO WHERE was it every indicated on the side effects, not even the rare side effects, today two doctors seemed surprised that it wasn't listed so asked to verify the list that I had. it wasn't there and they were surprised. So again, Jacob is suffering from a side effect that rarely happens. Now does everyone believe me when I say this child has not had a break? Not one! This boy has been through 9 surgeries now and all of them except for one are results from "possible" risks and complications that could happen, with Jacob, it has LITERALLY ALL happened. It is sad and frustrating.
This is not about Jason and I feeling sorry for ourselves, this is about letting this child get a break and let him start healing. I am so angry. I want to be angry. let me be angry. I want God to know I am pissed off. ENOUGH ALREADY!!! Let this child be already.
I am very well aware that this was going to be a long road ahead for us but i need for this boy to get some positive healing his way. Anything! before he loses the courage to keep fighting. He keeps saying he is so tired of being sick. he keeps asking us why he is sick. I am running out of answers because i just don't know why he is still this sick and not getting better.
i am tired. so tired. i don't want my baby to be sick anymore. please let me wake up from this nightmare. please someone wake me up.
My last update was written with great sadness. I am still filled with sadness and burnt out even more now than I was a couple of days ago. I am happy to say that Jacob is not doing too bad. He still has the same unexplained tummy pains and the vomiting but overall seems to be doing ok. He is not able to stand on his legs at this time for some reason. This is a new issue. A few weeks ago, his legs were certainly not an issue, he was playing bowling in the hallway with his physio therapist, today he can barely stand let alone walk. We found out today that he will be fitted for braces, which are close to two thousand dollars we were told, for both legs to try and strenghten his legs so he is able to walk normally again. Funny, there's something else to add to his list of problems. A child who just 4 months ago was a typical healthy boy who had more energy than all of put together now can barely walk, cant swallow, deaf from one ear, blind from one eye, left facial paralysis, left vocal paralysis and all of that not knowing if its permanent or temporary. And now we have to add leg muscle issues. After two months of his last chemo treatment we find out that one of the drugs he received can cause this problem. NO WHERE was it every indicated on the side effects, not even the rare side effects, today two doctors seemed surprised that it wasn't listed so asked to verify the list that I had. it wasn't there and they were surprised. So again, Jacob is suffering from a side effect that rarely happens. Now does everyone believe me when I say this child has not had a break? Not one! This boy has been through 9 surgeries now and all of them except for one are results from "possible" risks and complications that could happen, with Jacob, it has LITERALLY ALL happened. It is sad and frustrating.
This is not about Jason and I feeling sorry for ourselves, this is about letting this child get a break and let him start healing. I am so angry. I want to be angry. let me be angry. I want God to know I am pissed off. ENOUGH ALREADY!!! Let this child be already.
I am very well aware that this was going to be a long road ahead for us but i need for this boy to get some positive healing his way. Anything! before he loses the courage to keep fighting. He keeps saying he is so tired of being sick. he keeps asking us why he is sick. I am running out of answers because i just don't know why he is still this sick and not getting better.
i am tired. so tired. i don't want my baby to be sick anymore. please let me wake up from this nightmare. please someone wake me up.
Saturday, March 7, 2009
Tonight, I am angry
Saturday, March 7th 2009.
Thanks everyone for asking about Jacob. I didn't give an update yesterday because it turned out to be a rough day for us. Jacob had his surgery but it turned out to be a little bigger than we it had been explained to us. Jacob is recovering nicely today from what should have been a simple procedure.
Jacob had another meltdown yesterday. Our issue now is food and water. I am not sure how much more of this i can take. I can handle the sickness, i can handle the cancer but my child not being able to physically eat has taken over our lives. I don't think anyone can completely comprehend the concept of this unless you have been through it. Yesterday, i was one of those parent i've seen before. I walked out of his room into the hallway, fell on my knees and started crying. One of the nurses came to me kneeled down with me and let me cry. I kept saying i just can't do this anymore. I must have said it to her about a hundred times. I don't know how much more of this i can handle before completely losing my sanity.
We used to be able to get through these episodes and for some reason i thought with time it would get easier but he seems to obssess more about it every day. He says to me the other day "mommy can i just chew on something and spit it out" i asked him like what, he says "like chicken or something". I turned around and my legs couldn't walk away fast enough from him before tears flooded the 4th floor. You should see his face when he sees a commercial on tv about food or even worse when he sses someone eat in front of him. We have done our best to shelter him from that but sometimes people bring their food in the playroom and his face looking at them just breaks your heart.
I am on my last leg here. I don't know if I am coming or going anymore. I write this journal tonight with the most sadness my heart has ever felt since all this started. I am drained from sadness, from heartache and from empathy trying to share my son's feeling about his condition. Of all things to happen why did this have to happen? how can the one thing that should be natural to do like drink and eat been taken away from him?????????????? I am sorry for all whom I offend this evening but i have no faith in much anymore. That famous line that we have been bombarded with over and over again "God doesn't give us more than we can handle"...well i've got news for God tonight. This is more than Jacob, myself or Jason could ever handle!!!!!!
Tonight, I am angry.
Thanks everyone for asking about Jacob. I didn't give an update yesterday because it turned out to be a rough day for us. Jacob had his surgery but it turned out to be a little bigger than we it had been explained to us. Jacob is recovering nicely today from what should have been a simple procedure.
Jacob had another meltdown yesterday. Our issue now is food and water. I am not sure how much more of this i can take. I can handle the sickness, i can handle the cancer but my child not being able to physically eat has taken over our lives. I don't think anyone can completely comprehend the concept of this unless you have been through it. Yesterday, i was one of those parent i've seen before. I walked out of his room into the hallway, fell on my knees and started crying. One of the nurses came to me kneeled down with me and let me cry. I kept saying i just can't do this anymore. I must have said it to her about a hundred times. I don't know how much more of this i can handle before completely losing my sanity.
We used to be able to get through these episodes and for some reason i thought with time it would get easier but he seems to obssess more about it every day. He says to me the other day "mommy can i just chew on something and spit it out" i asked him like what, he says "like chicken or something". I turned around and my legs couldn't walk away fast enough from him before tears flooded the 4th floor. You should see his face when he sees a commercial on tv about food or even worse when he sses someone eat in front of him. We have done our best to shelter him from that but sometimes people bring their food in the playroom and his face looking at them just breaks your heart.
I am on my last leg here. I don't know if I am coming or going anymore. I write this journal tonight with the most sadness my heart has ever felt since all this started. I am drained from sadness, from heartache and from empathy trying to share my son's feeling about his condition. Of all things to happen why did this have to happen? how can the one thing that should be natural to do like drink and eat been taken away from him?????????????? I am sorry for all whom I offend this evening but i have no faith in much anymore. That famous line that we have been bombarded with over and over again "God doesn't give us more than we can handle"...well i've got news for God tonight. This is more than Jacob, myself or Jason could ever handle!!!!!!
Tonight, I am angry.
Thursday, March 5, 2009
"Mommy, It's Not Fair"
Thursday, March 5th, 2009
Well another good day under our belts. Daddy and Jacob had a good night last night. the tummy pains are still there and a mystery but overall a good night. We had a good day today, he was awake and talkative and playful. We asked him if he wanted to go home for a few hours today and he said "not today". Either the trip is a little exhausting for him or he is not ready to see his home again, either way, it was a good day in or out of the hospital.
This evening however....oye! Jacob had a meltdown this evening. One minute he was sleeping and the next he is crying and hysterical and out of control. I tried to figure out what was wrong but he just kept saying "no mommy, its not fair, its not ok" everytime i would say its ok Jacob mommy is here, he would say "no its not ok, nothing is ok, even when you are here its not ok" "none of this is ok". he kicked me and screamed and cried. it lasted about half an hour and i suprisingly composed myself to try and help him get through this little breakdown. My nieces and sister were visiting when it started and my niece started crying and it broke my heart to see her react like that because it broke her heart to see him like that.
Jacob is going in for a little surgery tomorrow. As minor as it is we always get nervous because it is general anesthetic. As you all know Jacob cannot swallow so he cannot eat or drink and therefore has a g-tube. A feeding tube directly in his tummy. Tomorrow he will be going in to have that switch from having it go to his tummy directly into his intestine. The idea is to have the feeds go directly into the intestine so if he does keep vomitting he will still get the feeds he needs. He will still get the calories and nutrients he needs and then we won't have to stop the feeds everytime he throws up. We have no idea how its going to go but i suppose it makes sense. We are hoping at least that if he can start gaining weight and get stronger than maybe other things will get better. who knows anymore but we are willing to try anything at this point. We just want to see him start getting better. I am exhausted of taking one step forward and a hundred steps back. We can't take it anymore. Its so frustrating to see all the other kids get better, go home and see mine get sicker with no answers.
So here's hoping for the best. He will probably be sick over the weekend from the anesthetic but one of the doctor's on his team said he was going to try a different drug to put him to sleep so cross your fingers and wish us luck and please think of Jacob.
Again I want to thank you all for all your support, your messages and your prayers. I get so emotional when I read your thoughts and comments and I feel blessed to have so many people sharing our pain.
Well another good day under our belts. Daddy and Jacob had a good night last night. the tummy pains are still there and a mystery but overall a good night. We had a good day today, he was awake and talkative and playful. We asked him if he wanted to go home for a few hours today and he said "not today". Either the trip is a little exhausting for him or he is not ready to see his home again, either way, it was a good day in or out of the hospital.
This evening however....oye! Jacob had a meltdown this evening. One minute he was sleeping and the next he is crying and hysterical and out of control. I tried to figure out what was wrong but he just kept saying "no mommy, its not fair, its not ok" everytime i would say its ok Jacob mommy is here, he would say "no its not ok, nothing is ok, even when you are here its not ok" "none of this is ok". he kicked me and screamed and cried. it lasted about half an hour and i suprisingly composed myself to try and help him get through this little breakdown. My nieces and sister were visiting when it started and my niece started crying and it broke my heart to see her react like that because it broke her heart to see him like that.
Jacob is going in for a little surgery tomorrow. As minor as it is we always get nervous because it is general anesthetic. As you all know Jacob cannot swallow so he cannot eat or drink and therefore has a g-tube. A feeding tube directly in his tummy. Tomorrow he will be going in to have that switch from having it go to his tummy directly into his intestine. The idea is to have the feeds go directly into the intestine so if he does keep vomitting he will still get the feeds he needs. He will still get the calories and nutrients he needs and then we won't have to stop the feeds everytime he throws up. We have no idea how its going to go but i suppose it makes sense. We are hoping at least that if he can start gaining weight and get stronger than maybe other things will get better. who knows anymore but we are willing to try anything at this point. We just want to see him start getting better. I am exhausted of taking one step forward and a hundred steps back. We can't take it anymore. Its so frustrating to see all the other kids get better, go home and see mine get sicker with no answers.
So here's hoping for the best. He will probably be sick over the weekend from the anesthetic but one of the doctor's on his team said he was going to try a different drug to put him to sleep so cross your fingers and wish us luck and please think of Jacob.
Again I want to thank you all for all your support, your messages and your prayers. I get so emotional when I read your thoughts and comments and I feel blessed to have so many people sharing our pain.
Wednesday, March 4, 2009
Day Pass
Wednesday March 4th, 2009.
Hi Everyone, its been a few days. The Hajjar-Randell family have had a few rough days and even worse nights. I feel like i sound like a broken record but we still have a very sick boy and no answers as to why he is still vomitting and having these severe tummy pains and frankly its really starting to scare both Jason and I because we just don't know how much more of this Jacob can take.
Today however was a good day. we just don't get excited about them anymore but we really needed this day because we both were going to lose our minds. Yesterday we went home. all three of us. yes that's right, we got a pass after 4 months. Jacob was not well and very ill actually, threw up at home no different then from his hospital bed. After two hours he actually wanted to go back to the hospital, which was ok with us. It wasn't what we had hoped but honestly, it felt great to see him at home. To see him sitting on the couch under the blanket felt so sereal but felt wonderful. It was a reminder that he still lives there and he will be back home someday. He didn't say a word, not ONE word the entire time we were home or in the car there and back but its ok. We just let him absorb everything and remind him that he still has a bedroom to go back to.
Jacob continues his radiation treatments without sedation. That's right, he has completed 6 treatments now. He's become a pro and is quite the champ and again i wish he could comprehend how huge this accomplishment is. We are proud of him more and more each day that he completes a treatment.
Tonight, once again I can only hope that my baby will find peace and get a good night sleep.
sleep well peanut. mommy loves you.
Hi Everyone, its been a few days. The Hajjar-Randell family have had a few rough days and even worse nights. I feel like i sound like a broken record but we still have a very sick boy and no answers as to why he is still vomitting and having these severe tummy pains and frankly its really starting to scare both Jason and I because we just don't know how much more of this Jacob can take.
Today however was a good day. we just don't get excited about them anymore but we really needed this day because we both were going to lose our minds. Yesterday we went home. all three of us. yes that's right, we got a pass after 4 months. Jacob was not well and very ill actually, threw up at home no different then from his hospital bed. After two hours he actually wanted to go back to the hospital, which was ok with us. It wasn't what we had hoped but honestly, it felt great to see him at home. To see him sitting on the couch under the blanket felt so sereal but felt wonderful. It was a reminder that he still lives there and he will be back home someday. He didn't say a word, not ONE word the entire time we were home or in the car there and back but its ok. We just let him absorb everything and remind him that he still has a bedroom to go back to.
Jacob continues his radiation treatments without sedation. That's right, he has completed 6 treatments now. He's become a pro and is quite the champ and again i wish he could comprehend how huge this accomplishment is. We are proud of him more and more each day that he completes a treatment.
Tonight, once again I can only hope that my baby will find peace and get a good night sleep.
sleep well peanut. mommy loves you.
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