I'm here. Mostly. I'm mostly sleeping. They have me on pain meds and muscle relaxers and pain patches. I can't sit much as it makes me super tired and dizzy. I spend most of my day laying in bed sleeping, with bits of TV viewing.
Yesterday my incision was red and I ran a low grade all day. Today the fever is done. I meet back with my surgeon on Thursday.
Last week I ended up at the ER. CT showed CSF collecting along the incision. They sent me to a pain specialist who changed my meds around. It's helped. Not cured but helped.
the family is pretty good. Adjusting the life.
i know this update is super duper short but honestly it's all I have energy for right now. I will slowly try to get more detailed updates up over the next few days.
Monday, January 21, 2013
Thursday, January 10, 2013
Recover update
900
Heather is feeling better this morning she ate some breakfast. She is sitting up with the help of the hospital bed. Pain and discomfort is still about the same. She also got her catheter out this morning. Doc says pain and discomfort could last a couple of weeks. I'm just happy we finally got it somewhat under control.
4:15
Heather has ate well today. She is still in a lot of discomfort. Her neck is super stiff and sore. Making it very difficult to get around and move. Even the simplest movement is difficult for her at this point. Pt and ot are trying to help her with the mobility portion. They are also trying to get the stiffness and pain more under control. She is still pretty tired all the work they are having her do is exhausting.
Heather is feeling better this morning she ate some breakfast. She is sitting up with the help of the hospital bed. Pain and discomfort is still about the same. She also got her catheter out this morning. Doc says pain and discomfort could last a couple of weeks. I'm just happy we finally got it somewhat under control.
4:15
Heather has ate well today. She is still in a lot of discomfort. Her neck is super stiff and sore. Making it very difficult to get around and move. Even the simplest movement is difficult for her at this point. Pt and ot are trying to help her with the mobility portion. They are also trying to get the stiffness and pain more under control. She is still pretty tired all the work they are having her do is exhausting.
Wednesday, January 9, 2013
Day 2 of surgery and recovery
800
Heather had a rough night. She had a lot of pain nausea and muscle spasms. They have been giving her meds but they aren't working either long enough or well. They also gave her a muscle relaxer to help. She is also on magnesium and they tried her on potassium however it caused her a lot of pain. they will be trying some oral meds when she is less nauseous. Just letting her rest for the day. hoping for a quiet and some positive progress. Waiting for the doc to come by and see what his plans are. I will update when I know more.
100
They have given her a muscle relaxer and some linocain patches. She is also trying some apple juice and crackers and if that goes well then they are going to try some pain meds by mouth. The oral meds are supposed to last longer. She is still in a lot Of pain and discomfort. Doc still hasn't made it in yet. The plan is to go to the regular floor if a room opens. Just hoping things get a little more comfortable. She is still really tired so hoping she can get comfortable and get some well needed rest.
8:30 pm
Heather is doing better.they are finally on top of the pain portion of it she was at about 6 or 7 now about a 3 on the pain scale. Nausea is better. She got to sleep abit they only have to check in on her every 4 hours now. Hoping that all goes well and she can get some sleep tonight. She has been able to talk some which has been nice. No surgeon today hopefully he will check In tomorrow. Still a possibility we may get moved out of icu tonight or tomorrow. Thank you all for your thoughts and prayers
Heather had a rough night. She had a lot of pain nausea and muscle spasms. They have been giving her meds but they aren't working either long enough or well. They also gave her a muscle relaxer to help. She is also on magnesium and they tried her on potassium however it caused her a lot of pain. they will be trying some oral meds when she is less nauseous. Just letting her rest for the day. hoping for a quiet and some positive progress. Waiting for the doc to come by and see what his plans are. I will update when I know more.
100
They have given her a muscle relaxer and some linocain patches. She is also trying some apple juice and crackers and if that goes well then they are going to try some pain meds by mouth. The oral meds are supposed to last longer. She is still in a lot Of pain and discomfort. Doc still hasn't made it in yet. The plan is to go to the regular floor if a room opens. Just hoping things get a little more comfortable. She is still really tired so hoping she can get comfortable and get some well needed rest.
8:30 pm
Heather is doing better.they are finally on top of the pain portion of it she was at about 6 or 7 now about a 3 on the pain scale. Nausea is better. She got to sleep abit they only have to check in on her every 4 hours now. Hoping that all goes well and she can get some sleep tonight. She has been able to talk some which has been nice. No surgeon today hopefully he will check In tomorrow. Still a possibility we may get moved out of icu tonight or tomorrow. Thank you all for your thoughts and prayers
Tuesday, January 8, 2013
quick update
11:45am
Heather went back to surgery. After surgery we will be going to ICU for recovery. They poked her three times for IV but they finally got it.They will be putting another IV when she is sleeping. They also will be giving her some hydrocortison for her adrenial insuffiency. will update when i know more.
1:30
They started the surgery about 45 minutes ago. she is doing very well vitals are good. they made the incision to remove the bone to get to the brain. Anesthesiologist is very happ with how she is doing.
they said that the time between now and my first post was getting her preped .
230
They are sewing up her incision. All went well very minimum blood loss and vitals were good. They don't have any icu beds available. They are hoping to have one soon. there are some paitients that are moving from the floor. They are moving her to a recovery as soon as they finish closing. They will have a critical nurse with her. We are currently waiting for the doctor to come and talk to us. Should be within the next hour or so.
330
Doc just came she did very well they removed part of the skull and part of the 1st cervical vertebrae. They put a patch on the dera.She will be moved to recovery for awhile and then to the icu. He says not much to worry about just have to keep an eye on the incision. Make sure that there is no fluid build up. That can happens over the next couple of weeks.other than that they will be keeping an eye on pain management.
445
She is having some nausea and the nurse. Isnt allowing anyone to visit right now. They say she won't know who I am. Giving them an hour more. Before I push somemore.
530
She is sleeping now. They have given her meds for the nausea. No visitors yet. They are continuing to keep me posted. I got to see her from a very far distance. So wish I could just hold her hand. This isn't easy but what u gonna do. Can only push so much. Before its not helpful. No icu beds available yet.worse case she could be in recover overnight
745
Finally got to go back. She is super tired I'm sure it's the meds. Super sore . Looks like we will have a bed tonight. They are cleaning one as long as nothing critical comes in the room will be ours thank you for all your thoughts and prayers.
1000
Got a room. Still in a lot of pain on the head and neck. She is dry and nauseas. They have given her some more meds. Hopefully they will help her sleep. Will update more tomorrow. Goodnight to all of u and thank you for your thoughts and prayers.
Heather went back to surgery. After surgery we will be going to ICU for recovery. They poked her three times for IV but they finally got it.They will be putting another IV when she is sleeping. They also will be giving her some hydrocortison for her adrenial insuffiency. will update when i know more.
1:30
They started the surgery about 45 minutes ago. she is doing very well vitals are good. they made the incision to remove the bone to get to the brain. Anesthesiologist is very happ with how she is doing.
they said that the time between now and my first post was getting her preped .
230
They are sewing up her incision. All went well very minimum blood loss and vitals were good. They don't have any icu beds available. They are hoping to have one soon. there are some paitients that are moving from the floor. They are moving her to a recovery as soon as they finish closing. They will have a critical nurse with her. We are currently waiting for the doctor to come and talk to us. Should be within the next hour or so.
330
Doc just came she did very well they removed part of the skull and part of the 1st cervical vertebrae. They put a patch on the dera.She will be moved to recovery for awhile and then to the icu. He says not much to worry about just have to keep an eye on the incision. Make sure that there is no fluid build up. That can happens over the next couple of weeks.other than that they will be keeping an eye on pain management.
445
She is having some nausea and the nurse. Isnt allowing anyone to visit right now. They say she won't know who I am. Giving them an hour more. Before I push somemore.
530
She is sleeping now. They have given her meds for the nausea. No visitors yet. They are continuing to keep me posted. I got to see her from a very far distance. So wish I could just hold her hand. This isn't easy but what u gonna do. Can only push so much. Before its not helpful. No icu beds available yet.worse case she could be in recover overnight
745
Finally got to go back. She is super tired I'm sure it's the meds. Super sore . Looks like we will have a bed tonight. They are cleaning one as long as nothing critical comes in the room will be ours thank you for all your thoughts and prayers.
1000
Got a room. Still in a lot of pain on the head and neck. She is dry and nauseas. They have given her some more meds. Hopefully they will help her sleep. Will update more tomorrow. Goodnight to all of u and thank you for your thoughts and prayers.
800th post being my last before surgery
We will be leaving for the hospital in 1 1/2 hrs. Check in is at 9:30 and surgery is scheduled for 11:30. My husband will update facebook and the blog as best as he can.
I can't believe that my 800th post is my last post before brain surgery. Wow.
I will be back when I can.
don't forget to check out the post below for meal train info.
I can't believe that my 800th post is my last post before brain surgery. Wow.
I will be back when I can.
don't forget to check out the post below for meal train info.
Sunday, January 6, 2013
Nerves and Anxiety
My parents got here this afternoon. My moms room is set up and she has begun unpacking. My dad will be here at least a week and my mom around 8 wks.
I did my last grocery trip. I cleaned house a bit. I made my final to-do list.
My neurosurgery is in less than 38hrs.
Tomorrow Eli and I get lab work in the morning. Ari has elimination clinc. I meet with the neuro-opthamologist to check my intracranial pressure, and I spend some time with my family.
My nerves have fully kicked in. I'm fidgetty and anxious and feel like crap. I want to go to bed and sleep until my surgery AND I want to stay awake the whole time spending as much time as possible with my family.
I just want this to all be over with, all be a distant memory.
Right now this all seems larger than life and scary and unimaginably hard. I long for the day where things settle and life calms down. Where we can breath easily, not constantly worrying about the next thing.
I will do my best to get a blog up tomorrow as well.
Bob will post updates as he has them.
Here is the mealtrain link for those wanting to help out with meals.
http://www.mealtrain.com/?id=m1tp2lohwbbt
You can also send gift cards etc to the address listed.
Lastly you can make a direct donation thru paypal to help go towards meals to eliasjourney@gmail.com
I thank you and so does my family!
I did my last grocery trip. I cleaned house a bit. I made my final to-do list.
My neurosurgery is in less than 38hrs.
Tomorrow Eli and I get lab work in the morning. Ari has elimination clinc. I meet with the neuro-opthamologist to check my intracranial pressure, and I spend some time with my family.
My nerves have fully kicked in. I'm fidgetty and anxious and feel like crap. I want to go to bed and sleep until my surgery AND I want to stay awake the whole time spending as much time as possible with my family.
I just want this to all be over with, all be a distant memory.
Right now this all seems larger than life and scary and unimaginably hard. I long for the day where things settle and life calms down. Where we can breath easily, not constantly worrying about the next thing.
I will do my best to get a blog up tomorrow as well.
Bob will post updates as he has them.
Here is the mealtrain link for those wanting to help out with meals.
http://www.mealtrain.com/?id=m1tp2lohwbbt
You can also send gift cards etc to the address listed.
Lastly you can make a direct donation thru paypal to help go towards meals to eliasjourney@gmail.com
I thank you and so does my family!
Friday, January 4, 2013
overwhelmed
I don't even know where to start honestly. So much is happening. Like I said on facebook ny brain is in overdrive and my heart and soul are crushed.
Wednesday I met with the geneticist. He is concerned that I have increased intracranial pressure. He has called the neurosurgeon and spoken with him and I will be having special testing on Monday to check the intracranial pressure. He wants to do some more testing and also wants to take over Eli's case. He asked me to bring Eli in on Friday, as soon as he was discharged.
So Eli was admitted Wednesday afternoon. He had his loading dose of IV Keppra that evening and his regular doses started Thursday morning. He did pretty good. He was discharged this morning.
We headed straight to genetics. The geneticist is running further testing on Eli as he believes there is still a piece of the puzzle missing. He's also concerned as Eli's RBC has been consistently dropping, his RBC are enlarged, his hemoglobin was lower, his Iron is low, and his protein is low. He's also worried about his hormone levels. He wants to run a decent chunk of labs, but right now we can't take that much blood at once. So we are going to have to slowly draw all of them. At one point reading thru the recent labs, he said "heck we can't take blood, it looks like we might need to give blood."
Like everyone else he's concerned about Eli's intestines and how well they don't appear to be holding up. We are having to slowly but surely switch things over and all these issues coming up today are pushing us in a direction that we aren't ready to go.
After we talked Eli for awhile he turned back to me. He says that I have Mito and that he strongly suspects that I have an adrenal insufficiency as well. He is speaking further with my surgeon and they will be following mito precautions as well as treating me for an adrenal insufficiency during my surgery next week. They will also be doing the testing for the adrenal issues next week, to verify completely and get a full plan in place.
Ultimately he advises that we do some testing on the kids. Jace has CVS and Ben has autism. Both of these can fall under Mito.
His current immediate concerns are getting thru my surgery next week and my recovery as well as Eli and the immediate issues I listed above.
I'm overwhelmed and exhuasted. I've spent almost 5 hrs this week alone talking to the geneticist. This isn't counting Eli's 3 days inpatient.
My brain is trying to process it all but my inner being is in such a tailspin that it's all so jumbled.
My household focus today will shift into family time. My goal is to spend the next few days at home with the kids as a family. My brain surgery is days away and I'm NOT ready. I don't know how my family is feeling as we haven't had much time to talk, but I know they are scared, and frustrated and angry and so many other emotions.
Please keep me in your thoughts as I go into my surgery and recovery. Please keep Eli in your thoughts as every day my little warrior battles thru so many issues. Please also keep Bob and my kids in your thoughts as this is all so much for them.
This is so much for us all.
Next week we have been asked what we need. Meals are always appreciated. Babysitting. housecleaning. helping kids with homework. taking the kids out play ball, or to a movie. sitting with bob at the hospital. you name it and it would be helpful. My parents will be here on Sunday. My dad will stay until I'm home, my mom will stay for my recovery. Beyond that we honestly don't know what we need. Until we know how the surgery and first few days of recovery go we don't have alot of info. The first few days I will be in the Neuro ICU so visitors are very limited. Please call or text Bob before coming up.
Bob will update as much as he can. Always feel free to text, call, or email.
thank you and love to all!
Wednesday I met with the geneticist. He is concerned that I have increased intracranial pressure. He has called the neurosurgeon and spoken with him and I will be having special testing on Monday to check the intracranial pressure. He wants to do some more testing and also wants to take over Eli's case. He asked me to bring Eli in on Friday, as soon as he was discharged.
So Eli was admitted Wednesday afternoon. He had his loading dose of IV Keppra that evening and his regular doses started Thursday morning. He did pretty good. He was discharged this morning.
We headed straight to genetics. The geneticist is running further testing on Eli as he believes there is still a piece of the puzzle missing. He's also concerned as Eli's RBC has been consistently dropping, his RBC are enlarged, his hemoglobin was lower, his Iron is low, and his protein is low. He's also worried about his hormone levels. He wants to run a decent chunk of labs, but right now we can't take that much blood at once. So we are going to have to slowly draw all of them. At one point reading thru the recent labs, he said "heck we can't take blood, it looks like we might need to give blood."
Like everyone else he's concerned about Eli's intestines and how well they don't appear to be holding up. We are having to slowly but surely switch things over and all these issues coming up today are pushing us in a direction that we aren't ready to go.
After we talked Eli for awhile he turned back to me. He says that I have Mito and that he strongly suspects that I have an adrenal insufficiency as well. He is speaking further with my surgeon and they will be following mito precautions as well as treating me for an adrenal insufficiency during my surgery next week. They will also be doing the testing for the adrenal issues next week, to verify completely and get a full plan in place.
Ultimately he advises that we do some testing on the kids. Jace has CVS and Ben has autism. Both of these can fall under Mito.
His current immediate concerns are getting thru my surgery next week and my recovery as well as Eli and the immediate issues I listed above.
I'm overwhelmed and exhuasted. I've spent almost 5 hrs this week alone talking to the geneticist. This isn't counting Eli's 3 days inpatient.
My brain is trying to process it all but my inner being is in such a tailspin that it's all so jumbled.
My household focus today will shift into family time. My goal is to spend the next few days at home with the kids as a family. My brain surgery is days away and I'm NOT ready. I don't know how my family is feeling as we haven't had much time to talk, but I know they are scared, and frustrated and angry and so many other emotions.
Please keep me in your thoughts as I go into my surgery and recovery. Please keep Eli in your thoughts as every day my little warrior battles thru so many issues. Please also keep Bob and my kids in your thoughts as this is all so much for them.
This is so much for us all.
Next week we have been asked what we need. Meals are always appreciated. Babysitting. housecleaning. helping kids with homework. taking the kids out play ball, or to a movie. sitting with bob at the hospital. you name it and it would be helpful. My parents will be here on Sunday. My dad will stay until I'm home, my mom will stay for my recovery. Beyond that we honestly don't know what we need. Until we know how the surgery and first few days of recovery go we don't have alot of info. The first few days I will be in the Neuro ICU so visitors are very limited. Please call or text Bob before coming up.
Bob will update as much as he can. Always feel free to text, call, or email.
thank you and love to all!
Wednesday, January 2, 2013
busy busy
Today will be a Loooong day!
This morning I have my first appt with genetics. Then I have my PAT appt and testing to go over anesthesia and everything for my surgery.
Then this afternoon Eli will be admitted and tonight he will get a loading dose of IV Keppra. He will be inpatient for atleast 48 hrs to get it permanently switched over to IV and to get his levels up.
I will update soon.
This morning I have my first appt with genetics. Then I have my PAT appt and testing to go over anesthesia and everything for my surgery.
Then this afternoon Eli will be admitted and tonight he will get a loading dose of IV Keppra. He will be inpatient for atleast 48 hrs to get it permanently switched over to IV and to get his levels up.
I will update soon.
Saturday, December 29, 2012
quick and brief
Like always it's been a bit since an update.
So much has happened. December was hectic. Eli was inpatient 3 times. The first starting to get sick. The second he had full on RSV. That was really rough for him to get past. The 3rd was hickman issues. At first it wasn't drawing blood, then it wouldn't flush. They ended up having to surgically remove it and replace it with a different hickman in a different location. It was a mess of a month.
Eli is also still struggling with absorption issues. We have had to switch 1 med over to IV and will be switching another over next week.
Eli will be admitted on January 2nd and will get a loading dose of Keppra, followed by regular doses. He will hopefully go home on Friday assuming there are no issues with his bodies response to the IV Keppra. We really need to get his keppra levels up. We are also working on his lovenox levels as we can't seem to get it spot on.
My surgery is on Jan 8th. A lot of feelings and emotions surrounding all of that. The holidays kept us busy for awhile but the last thing now to focus on is Eli's upcoming admission and my surgery.
I'm not ready and keep trying to talk myself into rescheduling, even though I know that won't help at all.
I will get more updates up before my surgery!
So much has happened. December was hectic. Eli was inpatient 3 times. The first starting to get sick. The second he had full on RSV. That was really rough for him to get past. The 3rd was hickman issues. At first it wasn't drawing blood, then it wouldn't flush. They ended up having to surgically remove it and replace it with a different hickman in a different location. It was a mess of a month.
Eli is also still struggling with absorption issues. We have had to switch 1 med over to IV and will be switching another over next week.
Eli will be admitted on January 2nd and will get a loading dose of Keppra, followed by regular doses. He will hopefully go home on Friday assuming there are no issues with his bodies response to the IV Keppra. We really need to get his keppra levels up. We are also working on his lovenox levels as we can't seem to get it spot on.
My surgery is on Jan 8th. A lot of feelings and emotions surrounding all of that. The holidays kept us busy for awhile but the last thing now to focus on is Eli's upcoming admission and my surgery.
I'm not ready and keep trying to talk myself into rescheduling, even though I know that won't help at all.
I will get more updates up before my surgery!
Tuesday, December 11, 2012
Hell of a Week
Eli was hospitalized Nov 30-Dec 1st. He was sent home assuming that he would get worse, but far better to be home then in patient around more germs.
By Sunday Eli was starting to struggle. By Monday he was running a temp, vitals a mess, lungs sounding yucky, and requiring O2. For sunday and monday eli only peed 3 times in 48 hrs. By Tuesday he was considerably worse and was needing quite a bit of O2 and alot of extra breathing treatments and such. Still minimal pee even with fluid increases. By Tuesday evening he was struggling hard and at this point we had been holding him upright for over 24hrs. They approved 24hr nursing and they stayed up with him all night.
Wednesday morning Eli was admitted to the PICU. His sats were low, his resps were 60-70 and his heartrate was super high. Temp 102.8 and he was requiring more pain meds and breathing treatments than we can even run at home.
We learned on Thursday that Eli has RSV and pneumonia. Both lungs were hazy. Alot of gunk settling into his lungs and alot of trouble moving it all. They started him on a pretty intense regimin of breathing treatments, CPT, and cough assist.
During his hospital stay alot happened.
His lovenox (blood thinner) levels aren't enough. He had a major bleed inpatient, as well as clotted off 2 needles. Strange combos.
He was switched to IV robinul as it was apparently clear that his body isn't aborbing the robinul thru his J tube.
We also learned that his seizure meds aren't being absorbed either and have had to increase them.
We've had to increase his IV fluids as they just aren't enough to keep him well hydrated.
He had a modified upper GI (barium placed into his G tube) and his fundo is in tact and isn't causing reflux. So we now know that for sure all of these choking spells are from secretions not refluxing.
Eli came home late Sunday. The hospital is full of RSV, Flu A and B, pertussis and rhino virus. Eli has had pertussis twice so the goal was to get him out of there and get him home where he can be better protected.
He's still struggling. Temps still, wacky vitals, alot of gunk in his lungs. Requiring a whole lot of suctioning. Still can't get him even weaned down on the O2, let alone off of it. Last night he started having trouble maintaining his body temp, which is normal for him usually, but this time it's the opposite. His extremities are constantly cold with a slightly delayed capillary refill. He's NEVER been too cold. Eli's body has always run super hot. So this has been a new strange challenge as it's not something we are used to doing, keeping Eli warm!
Yesterday he also had all of his kidney scans. There is some big improvements to his UPJ obstruction. His surgeon is really happy with what he saw on the scans and so are we!
In other household news....the world very clearly didn't stop.
Both bob's car AND my van broke down in the same day...Sunday. Bob's car is assumed dead. My van was towed to a shop. Come to find out while it was parked in the hospital parking garage for a week that it was attacked by a squirrel or mouse. They chewed thru my spark plugs, my O2 sensory and some other thing that I can't remember. Ended up costing $450 to repair!!! The mechanic saved all my parts and has suggested that we file a report with the hospitals parking garage.
Bob, Ben, Ari and Lauren are all sick. It appears to be the same thing that Eli has. Sadly for them it has to run it's course.
Last Wednesday Emily and Jace were both sent home with the stomach bug. Wednesday 70 kids were sent home with it, Thursday 85. The health dept ended up closing the school on Friday and they did a deep cleaning and de-sanitizing over the weekend.
Jace had his renal and testicular scans last week as well. Lauren was able to take him. His doctor (also Eli's primary doc) came to Eli's hospital room that evening. He informed me that he was sorry to be delivery more bad news. Both of Jace's kidneys are very small for his size but appear to be functioning well. The biggest issue is that both of Jace's testicles are in his abdomen stuck with hernias. He is putting in a referral and Jace will need to have surgery. It is unsure right now if they will be sterile or functional after being inside for 9 years.
We finally got the christmas tree decorated last night. Christmas is right around the corner and I'm so not ready.
I'm pretty much done with it all. I'm exhausted. My surgery is in 27 days. I feel as though the world is beating the fucking shit out of me. Everything that could go wrong is constantly go wrong. I don't know how much more I can physically, emotionally and mentally handle. I'm struggling right now to keep going thru each day.
I will get more updates up soon. I've got so much to get done today, and a sick Ben and Eli home!
By Sunday Eli was starting to struggle. By Monday he was running a temp, vitals a mess, lungs sounding yucky, and requiring O2. For sunday and monday eli only peed 3 times in 48 hrs. By Tuesday he was considerably worse and was needing quite a bit of O2 and alot of extra breathing treatments and such. Still minimal pee even with fluid increases. By Tuesday evening he was struggling hard and at this point we had been holding him upright for over 24hrs. They approved 24hr nursing and they stayed up with him all night.
Wednesday morning Eli was admitted to the PICU. His sats were low, his resps were 60-70 and his heartrate was super high. Temp 102.8 and he was requiring more pain meds and breathing treatments than we can even run at home.
We learned on Thursday that Eli has RSV and pneumonia. Both lungs were hazy. Alot of gunk settling into his lungs and alot of trouble moving it all. They started him on a pretty intense regimin of breathing treatments, CPT, and cough assist.
During his hospital stay alot happened.
His lovenox (blood thinner) levels aren't enough. He had a major bleed inpatient, as well as clotted off 2 needles. Strange combos.
He was switched to IV robinul as it was apparently clear that his body isn't aborbing the robinul thru his J tube.
We also learned that his seizure meds aren't being absorbed either and have had to increase them.
We've had to increase his IV fluids as they just aren't enough to keep him well hydrated.
He had a modified upper GI (barium placed into his G tube) and his fundo is in tact and isn't causing reflux. So we now know that for sure all of these choking spells are from secretions not refluxing.
Eli came home late Sunday. The hospital is full of RSV, Flu A and B, pertussis and rhino virus. Eli has had pertussis twice so the goal was to get him out of there and get him home where he can be better protected.
He's still struggling. Temps still, wacky vitals, alot of gunk in his lungs. Requiring a whole lot of suctioning. Still can't get him even weaned down on the O2, let alone off of it. Last night he started having trouble maintaining his body temp, which is normal for him usually, but this time it's the opposite. His extremities are constantly cold with a slightly delayed capillary refill. He's NEVER been too cold. Eli's body has always run super hot. So this has been a new strange challenge as it's not something we are used to doing, keeping Eli warm!
Yesterday he also had all of his kidney scans. There is some big improvements to his UPJ obstruction. His surgeon is really happy with what he saw on the scans and so are we!
In other household news....the world very clearly didn't stop.
Both bob's car AND my van broke down in the same day...Sunday. Bob's car is assumed dead. My van was towed to a shop. Come to find out while it was parked in the hospital parking garage for a week that it was attacked by a squirrel or mouse. They chewed thru my spark plugs, my O2 sensory and some other thing that I can't remember. Ended up costing $450 to repair!!! The mechanic saved all my parts and has suggested that we file a report with the hospitals parking garage.
Bob, Ben, Ari and Lauren are all sick. It appears to be the same thing that Eli has. Sadly for them it has to run it's course.
Last Wednesday Emily and Jace were both sent home with the stomach bug. Wednesday 70 kids were sent home with it, Thursday 85. The health dept ended up closing the school on Friday and they did a deep cleaning and de-sanitizing over the weekend.
Jace had his renal and testicular scans last week as well. Lauren was able to take him. His doctor (also Eli's primary doc) came to Eli's hospital room that evening. He informed me that he was sorry to be delivery more bad news. Both of Jace's kidneys are very small for his size but appear to be functioning well. The biggest issue is that both of Jace's testicles are in his abdomen stuck with hernias. He is putting in a referral and Jace will need to have surgery. It is unsure right now if they will be sterile or functional after being inside for 9 years.
We finally got the christmas tree decorated last night. Christmas is right around the corner and I'm so not ready.
I'm pretty much done with it all. I'm exhausted. My surgery is in 27 days. I feel as though the world is beating the fucking shit out of me. Everything that could go wrong is constantly go wrong. I don't know how much more I can physically, emotionally and mentally handle. I'm struggling right now to keep going thru each day.
I will get more updates up soon. I've got so much to get done today, and a sick Ben and Eli home!
Tuesday, December 4, 2012
Super Quick update
Eli is a bit more stable this morning, although definitely still struggling. We are getting pee, but his doc is still keeping his fluids running high. His temp came down some but is on it's way back up. Resps and HR still up there. He got a tiny spurt of awake this morning and sat up with his ipad but that wore him out. The docs suspect that he has RSV. They will be bringing him into urgent care for the day on Friday to start the IV robinul. Until then the plan is to hopefully stay home and keep working our way thru it.
Monday, December 3, 2012
Struggling
Eli is really struggling.
He has hardly slept the last 2 nights. He's been up choking and requiring alot of suctioning. last night he started not being able to keep his O2 sats up without oxygen. He was needing suctioning every 15 minutes. His temp went up, which left him with a high hr and resps. By this morning he could barely sit up or open his eyes. He has spent the entire day sleeping and is on O2, needing suctioning and still running a fever. Yesterday he only peed twice and today isn't going any better.
This morning his primary doc and I had a long talk. He's starting Eli on antibiotics. We also discussed the options we are left with to deal with eli's secretions. The goal is to get Eli started on IV robinul, hoping that this will allow his system to absorb it better. If this doesn't work the next option (and last option) is a Scopolamine patch.
We also discussed the seizures and the neurological changes. Eli's keppra levels came back incredibly low. Again either he's outgrown his dose, it isn't working for him anymore, or his body isn't absorbing it properly. For now he's having us up the dose.
He's thinking that there are multiple things going on here. The seizures, the secretions, and Eli being sick. He doesn't believe that fixing 1 will fix all. He's also not sure right now how much of this is disease progression and how much of it is fixable issues. He told me he doesn't want to make any promises as he isn't sure.
He and I discussed the suggestions from the new palliative care doc. He really likes her and trusts her thoughts and instincts. He believes that she will be a good fit on our team.
We also talked about how we hate progressive disorders and how I'm not ready for another progression. How I'm not ready to lose something. I'm not ready to take a step back, knowing that there is a chance that we will never regain ground. Rarely have we regained ground in regards to Eli's health and interventions.
I'm not ready. I wasn't ready to learn the true meaning behind the word progression. I wasn't ready to watch my child suffer thru something this torturous. I'm not ready to hold my child while he's choking knowing there is nothing I can do. I'm not ready to feel his body limp against me because he doesn't have the energy to hold himself up. We've been here before and I'm not ready to be here again.
Please keep our family in your thoughts. Keep my tiny little warrior, eli, in your thoughts as it's so hard for his little body to fight thru all of this. Please keep our oldest 4 in your thoughts, as it's just as hard for them to watch Eli struggle. This round has come on fast, and just yesterday afternoon they were able to sit up and play with Eli as he followed them thru the house. They will come home from school today to find a very sick little man unable to sit up at all. Please keep Bob and I in your thoughts as we have hardly slept for 3 days. We are exhausted and having to make big tough decisions. Never a fun mix.
We will update as we can.
He has hardly slept the last 2 nights. He's been up choking and requiring alot of suctioning. last night he started not being able to keep his O2 sats up without oxygen. He was needing suctioning every 15 minutes. His temp went up, which left him with a high hr and resps. By this morning he could barely sit up or open his eyes. He has spent the entire day sleeping and is on O2, needing suctioning and still running a fever. Yesterday he only peed twice and today isn't going any better.
This morning his primary doc and I had a long talk. He's starting Eli on antibiotics. We also discussed the options we are left with to deal with eli's secretions. The goal is to get Eli started on IV robinul, hoping that this will allow his system to absorb it better. If this doesn't work the next option (and last option) is a Scopolamine patch.
We also discussed the seizures and the neurological changes. Eli's keppra levels came back incredibly low. Again either he's outgrown his dose, it isn't working for him anymore, or his body isn't absorbing it properly. For now he's having us up the dose.
He's thinking that there are multiple things going on here. The seizures, the secretions, and Eli being sick. He doesn't believe that fixing 1 will fix all. He's also not sure right now how much of this is disease progression and how much of it is fixable issues. He told me he doesn't want to make any promises as he isn't sure.
He and I discussed the suggestions from the new palliative care doc. He really likes her and trusts her thoughts and instincts. He believes that she will be a good fit on our team.
We also talked about how we hate progressive disorders and how I'm not ready for another progression. How I'm not ready to lose something. I'm not ready to take a step back, knowing that there is a chance that we will never regain ground. Rarely have we regained ground in regards to Eli's health and interventions.
I'm not ready. I wasn't ready to learn the true meaning behind the word progression. I wasn't ready to watch my child suffer thru something this torturous. I'm not ready to hold my child while he's choking knowing there is nothing I can do. I'm not ready to feel his body limp against me because he doesn't have the energy to hold himself up. We've been here before and I'm not ready to be here again.
Please keep our family in your thoughts. Keep my tiny little warrior, eli, in your thoughts as it's so hard for his little body to fight thru all of this. Please keep our oldest 4 in your thoughts, as it's just as hard for them to watch Eli struggle. This round has come on fast, and just yesterday afternoon they were able to sit up and play with Eli as he followed them thru the house. They will come home from school today to find a very sick little man unable to sit up at all. Please keep Bob and I in your thoughts as we have hardly slept for 3 days. We are exhausted and having to make big tough decisions. Never a fun mix.
We will update as we can.
Sunday, December 2, 2012
Admission and a THIRD birthday!
What a weekend.
Friday Eli was really struggling. He was choking quite a bit and started to run a fever, as well as incredibly high resps and a high hr. We ended up calling the doc and they suspected pneumonia. Off we went. Eli ended up being admitted and they ran cultures on labs and urine. The choking episodes are really causing his little body to struggle.
Eli was discharged on Saturday, his 3rd birthday. We had a quiet evening at home and he was able to open his presents and spend a bit of time with the family.
He had an incredibly rough night Saturday night and was up choking a large bulk of the morning hrs. He slept in Sunday and has had countless choking episodes today.
The docs have tried to change around his meds but so far no change. While we were inpatient we met with a Palliative Care doctor and she is going to be joining Eli's team. It's time to have some serious quality of life talks and begin to discuss some "out of norm" options for Eli. She has some ideas and we are definitely on board with discussing them and working out a better plan. It was really refreshing to chat with her and we are going to be scheduling with her for a full sit down conversation.
I woke up this morning sick. I've got a sore throat and a bit of a cough. I'm definitely hoping that it doesn't progress as I can't afford to be sick.
I will get more updates up soon.
Friday Eli was really struggling. He was choking quite a bit and started to run a fever, as well as incredibly high resps and a high hr. We ended up calling the doc and they suspected pneumonia. Off we went. Eli ended up being admitted and they ran cultures on labs and urine. The choking episodes are really causing his little body to struggle.
Eli was discharged on Saturday, his 3rd birthday. We had a quiet evening at home and he was able to open his presents and spend a bit of time with the family.
He had an incredibly rough night Saturday night and was up choking a large bulk of the morning hrs. He slept in Sunday and has had countless choking episodes today.
The docs have tried to change around his meds but so far no change. While we were inpatient we met with a Palliative Care doctor and she is going to be joining Eli's team. It's time to have some serious quality of life talks and begin to discuss some "out of norm" options for Eli. She has some ideas and we are definitely on board with discussing them and working out a better plan. It was really refreshing to chat with her and we are going to be scheduling with her for a full sit down conversation.
I woke up this morning sick. I've got a sore throat and a bit of a cough. I'm definitely hoping that it doesn't progress as I can't afford to be sick.
I will get more updates up soon.
Wednesday, November 28, 2012
It's Wednesday Already!!!
We ended up talking with Eli's primary doc again on the choking. The newest meds have made no difference. The last guess is the robinul. They are increasing his dose over the rest of the week and then if that's not enough then another increase on friday. If that still doesn't make a difference then they will do some exploratory things under anesthesia to try and figure out if we are missing something. We were here so long ago and are not ready to be here again.
Eli also appears to be having a potential reaction to the neurotin. We have seen what are possibly breakthrough absent seizures as well as he is either very sluggish or very intense. He is also tripping and falling and running into things way more often than normal. Neurologically something has definitely shifted. He's also struggling with body balancing of fluids. He's bloated, but dry.
I met with my orthopedic surgeon again today. My hand incision has been struggling and continues to open up. He asked me today if I have been diagnosed with a thyroid issue or a metabolic issue as that's when he sees these issues. I'm also struggling to use my hand and the muscles are tight, my thumb is now pulling into my palm some and I have limited wrists movement. Still having trouble gripping things and major loss of strength. It hit me like a ton of bricks when he asked if I had a metabolic issue. He is one of the docs that hasn't been involved in the Mito workup and knew nothing about the suspicion. It terrifies me that so many doctors are independantly coming to the same damn conclusion. The surgeon has taught me a new way to steri strip and is sending me to some intensive OT. I start the OT on Monday.
Some of my testing has come back and my primary doc is calling around to get me into a Geneticist. We know how much time this takes, but are hoping we can get this done fairly quickly.
We will also be meeting with a lawyer this week. We will be drawing up a will. It's something I feel we shouldn't avoid. I think I will feel more comfortable if this is all done and prepared as a just in case. I never imagined that at 33yrs old that this is something I would ever consider. I don't want to think about these things, let alone say them out loud, and write them down. But alas here I am. No we don't think I will die. But yes we are being realistic and knowing that some major things are coming up and with any major thing comes great risk for complications and unexpected turns. We want to be prepared. We have that responsibility as parents to be prepared. We are now even more thankful that we have been seeing a grief counselor for months, before my journey really began for myself. She has been an amazing support and a place for me to openly state my thoughts and fears, and be able to plan and talk out loud.
Right now we are chugging along best we can. We have begun Christmas decorating and are trying to throw ourselves into the holidays as much as we can. I am getting a better control over my emotions (atleast at this point) and have done a better job of staying in the numb realm during the main parts of the day and only fully letting the emotions roll thru when the kids are either at school or late at night. This may not be the options that therapists all push for, but nothing changes the fact that I'm the mom to 5 young children...4 of which already have to deal with the reality of their little brothers illnesses.
I will continue to keep some updates coming over the next few days.
And don't forget to check out the post just below this one for a slideshow of our family photos. They turned out absolutely amazing!!!
Eli also appears to be having a potential reaction to the neurotin. We have seen what are possibly breakthrough absent seizures as well as he is either very sluggish or very intense. He is also tripping and falling and running into things way more often than normal. Neurologically something has definitely shifted. He's also struggling with body balancing of fluids. He's bloated, but dry.
I met with my orthopedic surgeon again today. My hand incision has been struggling and continues to open up. He asked me today if I have been diagnosed with a thyroid issue or a metabolic issue as that's when he sees these issues. I'm also struggling to use my hand and the muscles are tight, my thumb is now pulling into my palm some and I have limited wrists movement. Still having trouble gripping things and major loss of strength. It hit me like a ton of bricks when he asked if I had a metabolic issue. He is one of the docs that hasn't been involved in the Mito workup and knew nothing about the suspicion. It terrifies me that so many doctors are independantly coming to the same damn conclusion. The surgeon has taught me a new way to steri strip and is sending me to some intensive OT. I start the OT on Monday.
Some of my testing has come back and my primary doc is calling around to get me into a Geneticist. We know how much time this takes, but are hoping we can get this done fairly quickly.
We will also be meeting with a lawyer this week. We will be drawing up a will. It's something I feel we shouldn't avoid. I think I will feel more comfortable if this is all done and prepared as a just in case. I never imagined that at 33yrs old that this is something I would ever consider. I don't want to think about these things, let alone say them out loud, and write them down. But alas here I am. No we don't think I will die. But yes we are being realistic and knowing that some major things are coming up and with any major thing comes great risk for complications and unexpected turns. We want to be prepared. We have that responsibility as parents to be prepared. We are now even more thankful that we have been seeing a grief counselor for months, before my journey really began for myself. She has been an amazing support and a place for me to openly state my thoughts and fears, and be able to plan and talk out loud.
Right now we are chugging along best we can. We have begun Christmas decorating and are trying to throw ourselves into the holidays as much as we can. I am getting a better control over my emotions (atleast at this point) and have done a better job of staying in the numb realm during the main parts of the day and only fully letting the emotions roll thru when the kids are either at school or late at night. This may not be the options that therapists all push for, but nothing changes the fact that I'm the mom to 5 young children...4 of which already have to deal with the reality of their little brothers illnesses.
I will continue to keep some updates coming over the next few days.
And don't forget to check out the post just below this one for a slideshow of our family photos. They turned out absolutely amazing!!!
Family Pics
I don't have time to get up a full blog post right now but just wanted to share the link for our family pics! Enjoy!
Family Pictures Slideshow
Family Pictures Slideshow
Friday, November 23, 2012
Family Pic and Updates
Saturday we had family pictures done. It was alot of fun. So far we have a sneak!
We spent the rest of the day at the park and relaxing as a family.
Sunday the big 4 went to the farm with Lauren for the day. Bob, Eli and I went to church, ran errands and had some quiet time together.
Monday I had an appt with my primary doc. We regrouped from everything that has been going on. She began testing me for mito. 11 tubes of blood and 1 cup of pee. She also is testing me for Factor V Leiden. She really wants to verify if I have the same blood clotting disorder as Eli before I have brain surgery in January. She re-ran my anemia labs and if my B12 is still really low, then it means my body isn't absorbing it and she will switch me to B12 injections.
My hand is still struggling to heal. The incision doesn't want to close up, and I'm still struggling to move my fingers and wrist. The surgeon will be working to get me into OT next week.
Eli is also having a rough time. He's choking and gagging so much. His sats are dropping and he isn't moving air well. Then afterwards his lungs are really wet and he's worn out. The docs originally thought it may be his stomach so put him on more meds to try and help his stomach move, but no change. So now they have added a new med to try and help calm all of the nerves in his stomach. They think the nerves are in overdrive, hypersensitivity. The ultimate suspected reason for all of this is that Eli's body has built up an immunity to his robinul. This is a worst case scenario. We are worried. We avoided a trach about a year ago, and are fearful that it will be brought up again. Eli's restless leg syndrome has also been in full swing lately. He just got a weighted blanket yesterday from his grandparents for his birthday. The docs are hoping that if he sleeps with it that it might be just enough pressure on the nerves to keep things calmer during sleep.
We ended up heading to Wichita late in the evening Wednesday. We spent thanksgiving day with my family and then Bob, Eli, and I headed back here yesterday afternoon. The 4 oldest are hanging out with my parents until Sunday afternoon. I'm looking forward to some quiet time around the house these next few days. Bob and I are planning on going out for a much needed date night tonight. Today I may go do a touch of black friday shopping but nothing to major.
This morning I have another nurse interview. The agency is working hard to find us 2 more RN's. We are going to need round the clock nursing during my surgery and immediate days in the hospital, and then nursing 7 extended days a week during my at home recovery. Currently we have nursing 6 days a week 12 hrs a day. So they are having to find 2 more RN's to help cover such extended hours. I'm hoping to get both new hired and trained during the month of december. The goal for the 1st week of January is to simply spend as much quiet family time together as possible.
The oldest 4 are ok. They are so busy with school and choir and violin and math club and student council and book club and church and friends and so many other activities that they participate in.
The kids now all have their own bedrooms after some basement re-arrainging and they are loving it. The youngest 3 (Eli, Ari, and Ben) all have bedrooms on the 2nd floor down the hall from Bob and I. Emily and Jace now have bedrooms in the basement. The kids also have their own family room, complete with Tv and couches. They absolutely love it. We are glad we were able to come up with a way to allow them to have their own space. They are busy decorating and organizing and they are all hoping to get a few more decorations for their rooms come christmas time!
As always we have alot going on. Emotions are running high. I'm doing the best I can to appear as strong as possible for the kids and for friends and family. I'm exhausted and feel like crap each and every day. I feel rushed as my surgery is only 46 days away. There are so many things I want to get done and ready and organized. Now that Thanskgiving is past that throws us straight into Christmas and this is a huge holiday for our family. I'm trying to constantly remind myself to be in the here and now with everyone but my mind can't stop. I'm scared about Eli's instability right now. I'm scared about something happening to him while I'm in surgery or the hospital. I'm scared about the fact that I'm the only one in the world who knows EVERY drop of Eli's medical information and care. I'm scared about having 5 children and going in for brain surgery. I'm scared about what could go wrong. I'm scared for the recovery. I'm worried for my family and caretakers. I know the mental, emotional, and physical strain and exhaustion that comes from caring for a sick loved on. They will not only have Eli, but me now too. In short..I'm scared. And nothing makes it better.
I will update again soon.
We spent the rest of the day at the park and relaxing as a family.
Sunday the big 4 went to the farm with Lauren for the day. Bob, Eli and I went to church, ran errands and had some quiet time together.
Monday I had an appt with my primary doc. We regrouped from everything that has been going on. She began testing me for mito. 11 tubes of blood and 1 cup of pee. She also is testing me for Factor V Leiden. She really wants to verify if I have the same blood clotting disorder as Eli before I have brain surgery in January. She re-ran my anemia labs and if my B12 is still really low, then it means my body isn't absorbing it and she will switch me to B12 injections.
My hand is still struggling to heal. The incision doesn't want to close up, and I'm still struggling to move my fingers and wrist. The surgeon will be working to get me into OT next week.
Eli is also having a rough time. He's choking and gagging so much. His sats are dropping and he isn't moving air well. Then afterwards his lungs are really wet and he's worn out. The docs originally thought it may be his stomach so put him on more meds to try and help his stomach move, but no change. So now they have added a new med to try and help calm all of the nerves in his stomach. They think the nerves are in overdrive, hypersensitivity. The ultimate suspected reason for all of this is that Eli's body has built up an immunity to his robinul. This is a worst case scenario. We are worried. We avoided a trach about a year ago, and are fearful that it will be brought up again. Eli's restless leg syndrome has also been in full swing lately. He just got a weighted blanket yesterday from his grandparents for his birthday. The docs are hoping that if he sleeps with it that it might be just enough pressure on the nerves to keep things calmer during sleep.
We ended up heading to Wichita late in the evening Wednesday. We spent thanksgiving day with my family and then Bob, Eli, and I headed back here yesterday afternoon. The 4 oldest are hanging out with my parents until Sunday afternoon. I'm looking forward to some quiet time around the house these next few days. Bob and I are planning on going out for a much needed date night tonight. Today I may go do a touch of black friday shopping but nothing to major.
This morning I have another nurse interview. The agency is working hard to find us 2 more RN's. We are going to need round the clock nursing during my surgery and immediate days in the hospital, and then nursing 7 extended days a week during my at home recovery. Currently we have nursing 6 days a week 12 hrs a day. So they are having to find 2 more RN's to help cover such extended hours. I'm hoping to get both new hired and trained during the month of december. The goal for the 1st week of January is to simply spend as much quiet family time together as possible.
The oldest 4 are ok. They are so busy with school and choir and violin and math club and student council and book club and church and friends and so many other activities that they participate in.
The kids now all have their own bedrooms after some basement re-arrainging and they are loving it. The youngest 3 (Eli, Ari, and Ben) all have bedrooms on the 2nd floor down the hall from Bob and I. Emily and Jace now have bedrooms in the basement. The kids also have their own family room, complete with Tv and couches. They absolutely love it. We are glad we were able to come up with a way to allow them to have their own space. They are busy decorating and organizing and they are all hoping to get a few more decorations for their rooms come christmas time!
As always we have alot going on. Emotions are running high. I'm doing the best I can to appear as strong as possible for the kids and for friends and family. I'm exhausted and feel like crap each and every day. I feel rushed as my surgery is only 46 days away. There are so many things I want to get done and ready and organized. Now that Thanskgiving is past that throws us straight into Christmas and this is a huge holiday for our family. I'm trying to constantly remind myself to be in the here and now with everyone but my mind can't stop. I'm scared about Eli's instability right now. I'm scared about something happening to him while I'm in surgery or the hospital. I'm scared about the fact that I'm the only one in the world who knows EVERY drop of Eli's medical information and care. I'm scared about having 5 children and going in for brain surgery. I'm scared about what could go wrong. I'm scared for the recovery. I'm worried for my family and caretakers. I know the mental, emotional, and physical strain and exhaustion that comes from caring for a sick loved on. They will not only have Eli, but me now too. In short..I'm scared. And nothing makes it better.
I will update again soon.
Wednesday, November 14, 2012
checking in
It's been alot.
I had surgery on november 2nd on my right hand. They ended up having to cut 2 ligaments and shave down my tendon. I got my stitches out and large bandage removed 1 wk after. I have a smaller brace now and am able to start moving my fingers, but not my wrist. I'm not able to hold anything yet and am still having to only use my left hand. that makes everything very slow and frustrating, but I'm slowly figuring it out. Next week I get to start practicing with my wrist and if still struggling then he will start me with some occupational therapy.
I also met with the neurosurgeon last week. My surgery is scheduled for January 8th. He said I will be in the neuro icu for a few and then on the floor for a few. Then a minimum of 8 wks recovery at home. We are rushing to get life set up. We have so many things to organize between eli's nursing care and ben's respite worker.
I meet back with my primary care doc next week. The docs have all decided that we need to run some more labs, do some hearing tests, discuss my vision loss more, and send me to a geneticist for.. yes as most of you have guess...mito testing. It's been talked around for a bit by us and the docs, but is now being strongly suggested. We haven't said anything up till now, but we are being asked frequently so it's easier to simply mention it at this point.
I'm exhausted and sore. My mind is constantly spinning. I can't completely focus on anything, although my mind is always going. I've moved past the crying phase into numb. I've been in the numb phase many times as we have made our way thru Eli's journey, but it feels strangely unfamiliar when it's in relation to my journey.
Jace's GI issues have been flaring and his GI doc has been working hard to get it back under control. He's had tests run and meds changing. Hoping to see some relief for him quickly.
Eli is keeping us forever busy as well. He's back to choking and gagging. It's not yet as often as it used to be but alot more violent and large o2 drops (70's and 80's). we have been draining his stomach frequently to try and help. His Gi doc thinks that the nerves in his stomach are becoming so sensitive that any sensation is causing them to fire. He's also concerned that Eli's body may be building up an immunity to his robanul which is VERY bad news. They are changing around some of his meds and hoping to see some changes. If this doesn't help over the next 2 weeks there will be more changes that bring more risks.
We've also been working hard on Eli's vision. He's having a full functional vision evaluation next week. It's very clear that his depth perception and peripheral vision are shot. we are hoping to find ways to strengthen them and help him be able to safely move around unfamiliar environments independantly. In our home we use red tape on danger areas and we never move furniture.
The other kids are staying busy. Alot is on their plates and on their minds. Our kids are so strong and amazing!
As my hand strengths returns i will try and update more. this update has taken almost 1 1/2 hrs to type.
I had surgery on november 2nd on my right hand. They ended up having to cut 2 ligaments and shave down my tendon. I got my stitches out and large bandage removed 1 wk after. I have a smaller brace now and am able to start moving my fingers, but not my wrist. I'm not able to hold anything yet and am still having to only use my left hand. that makes everything very slow and frustrating, but I'm slowly figuring it out. Next week I get to start practicing with my wrist and if still struggling then he will start me with some occupational therapy.
I also met with the neurosurgeon last week. My surgery is scheduled for January 8th. He said I will be in the neuro icu for a few and then on the floor for a few. Then a minimum of 8 wks recovery at home. We are rushing to get life set up. We have so many things to organize between eli's nursing care and ben's respite worker.
I meet back with my primary care doc next week. The docs have all decided that we need to run some more labs, do some hearing tests, discuss my vision loss more, and send me to a geneticist for.. yes as most of you have guess...mito testing. It's been talked around for a bit by us and the docs, but is now being strongly suggested. We haven't said anything up till now, but we are being asked frequently so it's easier to simply mention it at this point.
I'm exhausted and sore. My mind is constantly spinning. I can't completely focus on anything, although my mind is always going. I've moved past the crying phase into numb. I've been in the numb phase many times as we have made our way thru Eli's journey, but it feels strangely unfamiliar when it's in relation to my journey.
Jace's GI issues have been flaring and his GI doc has been working hard to get it back under control. He's had tests run and meds changing. Hoping to see some relief for him quickly.
Eli is keeping us forever busy as well. He's back to choking and gagging. It's not yet as often as it used to be but alot more violent and large o2 drops (70's and 80's). we have been draining his stomach frequently to try and help. His Gi doc thinks that the nerves in his stomach are becoming so sensitive that any sensation is causing them to fire. He's also concerned that Eli's body may be building up an immunity to his robanul which is VERY bad news. They are changing around some of his meds and hoping to see some changes. If this doesn't help over the next 2 weeks there will be more changes that bring more risks.
We've also been working hard on Eli's vision. He's having a full functional vision evaluation next week. It's very clear that his depth perception and peripheral vision are shot. we are hoping to find ways to strengthen them and help him be able to safely move around unfamiliar environments independantly. In our home we use red tape on danger areas and we never move furniture.
The other kids are staying busy. Alot is on their plates and on their minds. Our kids are so strong and amazing!
As my hand strengths returns i will try and update more. this update has taken almost 1 1/2 hrs to type.
Monday, October 29, 2012
Numb
It was a roller coaster of a weekend. On Friday we obviously got the news on me. We told the kids Friday evening and had an evening home.
Saturday was Emily's birthday so we tried to keep the focusing on celebrating her 12th bday! We went to Legoland and out to dinner.
Saturday evening bob and I stopped by a friends halloween party and hung out for a little bit.
Sunday Bob and I took Eli to church and the older 4 went with Lauren and my parents to lauren's church.
Sunday evening the olders went with lauren to a bonfire at church and Bob and I had some quiet time at home with Eli.
This morning has brought around 20 phone calls, some emails, appts, and alot of planning. It's all in planning mode at this point. They have scheduled me a rush appt with the neurosurgeon on November 8th. I have my surgery on my right hand/arm on November 2nd. So it's alot of things happening really quickly.
Today was luckily Monday so I had my standing appt with my grief counselor. I absolutely love her and have no idea how I would make it thru without her. I was able to openly really talk to her today about some of my thoughts and feelings and things I wanted to get done.
This evening is my first class titled "Support for the Supporters". Right now it seems so far out and strange.
The weekend was an unpredictable emotional rollercoaster. Some songs simply caused me to cry. Someone talking to me. Just sitting there thinking in those few un-busy moments. Today I feel numb. It's been a whirlwind of planning and that's kept me mostly busy. I've only cried once today and that's once to many for me. I'm so tired of crying. I'm so tired of feeling any emotion right now. I'll take numb. After these last 3 yrs of continual bad news and heartache, numb is very much welcome.
I will get more updates up this week, but just wanted to hit a brief check-in.
Saturday was Emily's birthday so we tried to keep the focusing on celebrating her 12th bday! We went to Legoland and out to dinner.
Saturday evening bob and I stopped by a friends halloween party and hung out for a little bit.
Sunday Bob and I took Eli to church and the older 4 went with Lauren and my parents to lauren's church.
Sunday evening the olders went with lauren to a bonfire at church and Bob and I had some quiet time at home with Eli.
This morning has brought around 20 phone calls, some emails, appts, and alot of planning. It's all in planning mode at this point. They have scheduled me a rush appt with the neurosurgeon on November 8th. I have my surgery on my right hand/arm on November 2nd. So it's alot of things happening really quickly.
Today was luckily Monday so I had my standing appt with my grief counselor. I absolutely love her and have no idea how I would make it thru without her. I was able to openly really talk to her today about some of my thoughts and feelings and things I wanted to get done.
This evening is my first class titled "Support for the Supporters". Right now it seems so far out and strange.
The weekend was an unpredictable emotional rollercoaster. Some songs simply caused me to cry. Someone talking to me. Just sitting there thinking in those few un-busy moments. Today I feel numb. It's been a whirlwind of planning and that's kept me mostly busy. I've only cried once today and that's once to many for me. I'm so tired of crying. I'm so tired of feeling any emotion right now. I'll take numb. After these last 3 yrs of continual bad news and heartache, numb is very much welcome.
I will get more updates up this week, but just wanted to hit a brief check-in.
Friday, October 26, 2012
Crushingly Devastatingly Terrified
I've been behind on updating as I've been pretty sick. I've been having migraines daily. They are there when I wake and when I fall asleep. My eye sight has been struggling as well as my hearing. I've had facial and eye twitches. I can no longer lay on or touch the back of my head. My ears hurt to the point where I can hardly talk on the cell phone without them throbbing. They put me on meds that made me even sicker. I've been to the neurologist and the family doc. They did an EMG and discovered that I have severe carpal tunnel with sensory nerve, motor nerve, and muscle damage. They scheduled me for surgery November 2nd.
Then they did neck xrays. They saw some issues with arthritis at the base of my neck. Next they did an MRI of my brain and neck. This was on Tuesday.
My doctor called me today with results. She apologized 10 plus times while giving me the results. I listened and wrote notes as she talked. Then cried and cried and cried.
I have an Arnold Chiari Malformation. She is sending me to a neurosurgeon for surgery on my brain and spinal cord. I'm terrified.
I feel as though I'm being crushed. I have felt my strength wavering over these last few months as we've gone farther down the road of Mito with Eli but this is more than I can bare.
We told our kids tonight and our immediate family. I simply don't have the strength to call everyone so please don't be offended if you weren't on the list of people we personally spoke with. I just can't say it outloud that many times right now.
I don't know how we are going to make it thru, but I know that my friends and family are amazing and I know that they will drag me kicking and screaming thru this.
Feel free to text, call, email, drop by, or whatnot. We know that we need the support of everyone around us.
I just don't know if I can do this.
I will get more updates up on Sunday.
Then they did neck xrays. They saw some issues with arthritis at the base of my neck. Next they did an MRI of my brain and neck. This was on Tuesday.
My doctor called me today with results. She apologized 10 plus times while giving me the results. I listened and wrote notes as she talked. Then cried and cried and cried.
I have an Arnold Chiari Malformation. She is sending me to a neurosurgeon for surgery on my brain and spinal cord. I'm terrified.
I feel as though I'm being crushed. I have felt my strength wavering over these last few months as we've gone farther down the road of Mito with Eli but this is more than I can bare.
We told our kids tonight and our immediate family. I simply don't have the strength to call everyone so please don't be offended if you weren't on the list of people we personally spoke with. I just can't say it outloud that many times right now.
I don't know how we are going to make it thru, but I know that my friends and family are amazing and I know that they will drag me kicking and screaming thru this.
Feel free to text, call, email, drop by, or whatnot. We know that we need the support of everyone around us.
I just don't know if I can do this.
I will get more updates up on Sunday.
Wednesday, October 3, 2012
Quick Check In
I apologize for missing Mito week. Eli ended up with 14 appts, 6 therapies, I made 36 phone calls, signed for 5 deliveries, gave 336 medications, 14 shots, 2 lab draws, 2 dressing changes, 34 breathing treatments, and more medical care than I can even begin to list.
Last week Eli was admitted to the hospital for 24 hrs. His lab work has been a mess. We ended up needing to change his IV fluids. He is now on D5 NS so that he is always getting glucose and salt. It seems to be helping give some more consistency to his sugars. We are still waiting for them to get his Mickey GJ tube ordered so we can get that changed out as the valve is again broken and his body is again eating thru the silicone. Also Eli's geneticist / Mito doctor is leaving the country. This means more big changes on the horizon for Eli.
Final news. My doctor was finally able to get me into the neurologist this last week. He ran an EMG on both arms. He is unsure how I'm even able to use my right arm at all. I told him I hardly am. I have severe motor nerve, sensory nerve, and muscle damage in my right hand, arm, elbow, shoulder, and neck. My left hand and arm and elbow only have some mild sensory nerve damage. He said I definitely need surgery. We also discussed my migraines. He made some adjustments to my meds. He is sending me for an MRI and is concerned about the severerity and frequency. My vision is struggling and so is my hearing. I can't remember the last time I didn't have a headache. He is meeting with me next week to come up with a firm plan and get everything scheduled. More info but right now I'm not ready to go into full detail.
Please keep our family in your thoughts as we navigate continually uncharted waters.
Last week Eli was admitted to the hospital for 24 hrs. His lab work has been a mess. We ended up needing to change his IV fluids. He is now on D5 NS so that he is always getting glucose and salt. It seems to be helping give some more consistency to his sugars. We are still waiting for them to get his Mickey GJ tube ordered so we can get that changed out as the valve is again broken and his body is again eating thru the silicone. Also Eli's geneticist / Mito doctor is leaving the country. This means more big changes on the horizon for Eli.
Final news. My doctor was finally able to get me into the neurologist this last week. He ran an EMG on both arms. He is unsure how I'm even able to use my right arm at all. I told him I hardly am. I have severe motor nerve, sensory nerve, and muscle damage in my right hand, arm, elbow, shoulder, and neck. My left hand and arm and elbow only have some mild sensory nerve damage. He said I definitely need surgery. We also discussed my migraines. He made some adjustments to my meds. He is sending me for an MRI and is concerned about the severerity and frequency. My vision is struggling and so is my hearing. I can't remember the last time I didn't have a headache. He is meeting with me next week to come up with a firm plan and get everything scheduled. More info but right now I'm not ready to go into full detail.
Please keep our family in your thoughts as we navigate continually uncharted waters.
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