Wow. It's been 2 years. 2 years ago today I was laying on an ultrasound table, excited to see our little baby and find out if we were having a girl or a boy. I knew during an ultrasound they checked to make sure the baby was well and healthy and growing well, but after 4 previous pregnancies and countless ultrasounds I had grown so used to everything being great, I had learned to enjoy the time of getting to see my little one. No other thoughts had every really crossed my mind.
Not so on August 28th, 2009. We did find out that we were having a boy. We also found out that something was wrong. He wasn't growing properly, and something was definitely going horribly wrong with his kidney. They weren't sure the extent of it all, they weren't sure what was causing it to happen, and they weren't sure if it would get any worse. But we knew that it wasn't right. From this point on our world has never been the same.
From this point on life began to slip. Slip into the medical realm. We didn't know the road it would ultimately take us down, but looking back this is where the road began. We were so scared then. The uncertainty. Looking back it seems like it was so easy then, that's knowing what we know NOW. Then we still had a glimmer of hope, a glimmer that it could be some simply growth issue that he would ultimately catch up from. Glimmers of hope that the kidney could be saved, or at worst he would need surgery to remove the one that wasn't working well. But to parents of healthy children, that sounded oh so scary.
We wouldn't have chosen to do anything different, if we had known then what we know now. Every choice we have made in these last 2 years has been well thought out and well researched. We are just as in love with our little man now as we were then, probably more so.
I simply cant believe it's been 2 years today. The amount that has happened since that day. The changes in Eli, in our family, in me. wow. I'm terrified to think ahead 2 years, but in some ways it's just as terrifying to think back over these last 2 years.
As you can probably tell by the above slightly disorganized post, I simply can't find the right words to describe how I'm feeling.
Wow. 2 years.
Sunday, August 28, 2011
Thursday, August 25, 2011
LOOOONG Day
Little man had a long night last night making for a long day today. His feeding pump malfunctioned and he went 12 1/2 hrs without food last night. By this morning when we figured it out at 6am, he was dehydrated and very much lacking calories. Of course this would happen on a Thursday, when he has PT, OT and ST first thing in the morning. We got to therapy and he struggled and was super fussy. By the time he got to PT he was so grumpy and she really needed to work with him today. She did alot of testing with his hips and legs and she's still very concerned about it all. She tried him in some special shorts that keep his legs together and he struggled with these. It causes him alot of pain when we are trying to work to bring his hips together and to work with the right foot that is super tight. We are hoping to make progress, but it's going to be very slow.
Tomorrow morning is his MRI. We check into the hospital at 645 in the morning. They will immediately get an IV going before stopping the pedialyte running thru his J. His MRI is scheduled for 9am. I will update tomorrow as i know more!
Tomorrow morning is his MRI. We check into the hospital at 645 in the morning. They will immediately get an IV going before stopping the pedialyte running thru his J. His MRI is scheduled for 9am. I will update tomorrow as i know more!
Tuesday, August 23, 2011
Quick Catch Up
Monday ~ Eli had his in home speech and sign language. He did really well watching signing and trying to play with his fingers and check it all out. He got to play with his speech pathologists IPad as well, and like always he loved that. Then in the afternoon the wheelchair technician came to our house. He reclined the back seat, changed around the hip/thigh piece and adjusted some straps. Ultimately he won't be able to make Eli's wheelchair do what is needed, he thinks. They are going to try and see if we can add upper body supports and such for when he's tired. Ultimately we may need to switch over to a tilt in space chair. We are waiting it out until his appt with the muscle and nerve clinic at the end of the month.
Tuesday(today) ~ We met with The Whole Person project. It's an organization that does lots of things, but the piece of it we are doing is in home ASL (sign language) tutoring. We finished all the paperwork and signed on with them for 2 years to start. We even got to meet our tutor today. She will come into our home and teach us ASL weekly. We begin next week and are super excited to get started. I spent the rest of the day on the phone. 15 something phone calls. We got most of his scripts refilled, worked on a new med schedule (AGAIN), and got all of his doctors orders EMAILED to us for his CPAP and O2 and such. It was a super busy day! Bob and I got a TON of baking and cooking done. We made up 3 snacks, 2 breakfasts, 2 loaves of dinner bread, and 2 dinners!
This evening has been pretty stressful and I'm definitely ready for it to end.
I will update more tomorrow.
Tuesday(today) ~ We met with The Whole Person project. It's an organization that does lots of things, but the piece of it we are doing is in home ASL (sign language) tutoring. We finished all the paperwork and signed on with them for 2 years to start. We even got to meet our tutor today. She will come into our home and teach us ASL weekly. We begin next week and are super excited to get started. I spent the rest of the day on the phone. 15 something phone calls. We got most of his scripts refilled, worked on a new med schedule (AGAIN), and got all of his doctors orders EMAILED to us for his CPAP and O2 and such. It was a super busy day! Bob and I got a TON of baking and cooking done. We made up 3 snacks, 2 breakfasts, 2 loaves of dinner bread, and 2 dinners!
This evening has been pretty stressful and I'm definitely ready for it to end.
I will update more tomorrow.
Saturday, August 20, 2011
Critical Neuro Appt Results
Today was Eli's appt with his new epilepsy doctor/neurologist. The frontal lobes of his brain had sharp spikes and showed seizure activity. His brain overall showed decrease in activity and such. Basically his brain isn't functioning at the proper capacity/level that it should be anymore. He is also concerned on the increase in hypertonia in his left side and has ordered an MRI to figure out what is happening. He says if this can't be fixed with his AFO's and such then Eli will need to have Botox injections. He is also ordering a soft side helmet, to help protect his head. He put Eli on Keppra (a seizure medication) as well. This first week he's on a lower dose and then it's doubled next week. They will monitor from there what they need to change next. He chose the Keppra as it's safest with all of the other medications that he's on. Hoping it works.
We are going to spend the rest of the weekend attempting to relax and let all of this new information soak in, something we seem to do all the dang time lately.
We are going to spend the rest of the weekend attempting to relax and let all of this new information soak in, something we seem to do all the dang time lately.
Thursday, August 18, 2011
Renal Doc
Today was Eli's Renal appt. The doc asked tons of questions and we went thru alot of history. Then he did his physical exam. He decided that he needed to run blood and urine tests and also a renal ultrasound. Eli had ZERO interest in peeing for the test. Vascular access was able to get blood work, and the ultrasound was long, but Eli fell asleep!
Now we wait for results. Hopefully we will get them in the next day or two. Another exhausting appt where we just wait for answer.
Now we wait for results. Hopefully we will get them in the next day or two. Another exhausting appt where we just wait for answer.
Pulmonologist Yesterday
Yesterday was a LOOOONG day. Eli had his EEG first thing. He was exhausted. He couldn't physically keep his eyes open and stay awake and she was rushing to get everything hooked up before he was completely out. Such a cruel thing to make a Mito kid go without sleep, it's definitely asking alot! He did well for the EEG and slept thru the whole thing, until the end. She had to wake him and do the strobe lights 10 times. He hates light and was soooo unhappy with it. When we left he fell right to sleep.
When we got home he took a 5 hr nap. He kept dropping his O2 and was having very strange things occur while he was sleeping. He was having strange eye movements, he was retracting and his nostrils were clamping CLOSED. His nurse took a 5 minute video of it all.
Then in the afternoon he had his new pulmonologist appt, the doc is also the head of the sleep studies team. He went over all Eli's info and past tests, as well as asked us alot of questions and watched the video from the earlier nap. He immediately was concerned. He said that it appears like seizures that are causing diaphragmatic spasms. The seizure is basically causing his diaphragm to clamp shut and it's causing so much air to suck in that it's literally causing his nostrils to suck in and the major retractions. Then if he goes without O2 to long that can obviously cause another seizure. He is concerned with the number of sleep occurances he is having. He is concerned as well that the reason Eli is such a mouth breather is because of undervelopment in the external nose and mouth area. Right in the room he picked up the phone and called the main hospitals sleep study unit. He told them he wanted him fitted for a full face CPAP mask and wanted his pressures increased and O2 added onto the CPAP. He wants Eli using it ANY time he's sleeping, be it naps or overnights.
He has also scheduled an emergency 2 Tier sleep study. They have that scheduled for the 31st unless they get a cancel. So we headed over and they got him fit with a mask. At first he was trying to rip it off, so they left it at the lowest setting of 4. As he got used to it they were able to ramp the setting up. He did great and seemed to be very calm and playful while it was on. They are getting his ordered and it will be here soon.
Here are a few pictures from his day.
Last night I took Emily to finally get her hair cut. She has been wanting to cut it for some time and we just have never been able to get it all set up. We are pretty open about letting our kids decide what to do with their hair and such, so this was all her choice!
Today Eli has his new appt with the renal doc. I will try and get a quick update up this afternoon after we know more from that appt. We won't be getting the EEG results until Monday.
When we got home he took a 5 hr nap. He kept dropping his O2 and was having very strange things occur while he was sleeping. He was having strange eye movements, he was retracting and his nostrils were clamping CLOSED. His nurse took a 5 minute video of it all.
Then in the afternoon he had his new pulmonologist appt, the doc is also the head of the sleep studies team. He went over all Eli's info and past tests, as well as asked us alot of questions and watched the video from the earlier nap. He immediately was concerned. He said that it appears like seizures that are causing diaphragmatic spasms. The seizure is basically causing his diaphragm to clamp shut and it's causing so much air to suck in that it's literally causing his nostrils to suck in and the major retractions. Then if he goes without O2 to long that can obviously cause another seizure. He is concerned with the number of sleep occurances he is having. He is concerned as well that the reason Eli is such a mouth breather is because of undervelopment in the external nose and mouth area. Right in the room he picked up the phone and called the main hospitals sleep study unit. He told them he wanted him fitted for a full face CPAP mask and wanted his pressures increased and O2 added onto the CPAP. He wants Eli using it ANY time he's sleeping, be it naps or overnights.
He has also scheduled an emergency 2 Tier sleep study. They have that scheduled for the 31st unless they get a cancel. So we headed over and they got him fit with a mask. At first he was trying to rip it off, so they left it at the lowest setting of 4. As he got used to it they were able to ramp the setting up. He did great and seemed to be very calm and playful while it was on. They are getting his ordered and it will be here soon.
Here are a few pictures from his day.
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| Eli right before officially starting his EEG |
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| Eli checking out his new CPAP mask |
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| Eli sound asleep after dinner |
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| Emily before her hair cut |
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| Emily after her hair cut |
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| the back of her hair after |
Tuesday, August 16, 2011
AFO's Redone
Today Eli had his appt to get his AFO's refitted. He agrees that they aren't working at all and that Eli's muscles have definitely changed. He was unsure what to do and consulted multiple other people to try and get some ideas. Eli's left leg/ankle/foot now show hypertonia(over high muscle tone) and his right leg/ankle/foot now show hypotonia(low muscle tone). He made some adjustments to the AFO's to see if that will help his feet stay in them a bit more. He says that Eli is a puzzle and he's not really sure what to do next if this doesn't work. He also doesn't have any suggestions on the legs turning out and the massive frogging weakness in the hips. He agrees that it all sounds neurological.
Eli has again been exhausted today. Which isn't good because tomorrow is his EEG. He has to stay up tonight until 10pm and then he has to get up tomorrow morning at 4am. Not going to be fun for a kiddo like Eli who already has major issues with low energy.
After his EEG he has an appt with his new pulmonolgist. I will update more once I know more.
Eli has again been exhausted today. Which isn't good because tomorrow is his EEG. He has to stay up tonight until 10pm and then he has to get up tomorrow morning at 4am. Not going to be fun for a kiddo like Eli who already has major issues with low energy.
After his EEG he has an appt with his new pulmonolgist. I will update more once I know more.
Monday, August 15, 2011
More Neurological Changes
We decided that we needed a very quiet weekend. We bought all the food we needed to cook food for 2 days, rented 6 movies, had no nurses, wore pj's, ate food, watched movies, played games, and never left our house. It was beyond nice. We ate some super yummy food and had a really nice time. I even got some knitting time!!!
Sunday evening I was cooking dinner and Eli was laying on the kitchen floor. I sat down next to him and his entire head and upper bed started shaking. I grabbed him off the floor and his body was shaking. It lasted about 1 min. It happened again 45 minutes later, this time lasting about 30 sec. Afterwards he was very glazed over and exhausted. We called his neurologist today and the nurse agrees that it sounds like partial seizures. They have him scheduled for an EEG on Wednesday. Which means virtually no sleep on Tuesday for any of us.
In other news the big 3 started school today. It was only a half day, but a nice chance for them to get back into the swing of school life. Here are 2 pics of them right before heading out the door. My silly kids! :)
Sunday evening I was cooking dinner and Eli was laying on the kitchen floor. I sat down next to him and his entire head and upper bed started shaking. I grabbed him off the floor and his body was shaking. It lasted about 1 min. It happened again 45 minutes later, this time lasting about 30 sec. Afterwards he was very glazed over and exhausted. We called his neurologist today and the nurse agrees that it sounds like partial seizures. They have him scheduled for an EEG on Wednesday. Which means virtually no sleep on Tuesday for any of us.
In other news the big 3 started school today. It was only a half day, but a nice chance for them to get back into the swing of school life. Here are 2 pics of them right before heading out the door. My silly kids! :)
Thursday, August 11, 2011
More Bad News
Today Eli had PT. It was disastrous. Eli was struggling to move his right leg at all. His left leg is so tight that he can't even get it in his AFO. He would stand with help and then just crumple down onto his right leg. The PT was concerned. She called his neurologist. The neurologist, hematologist, and medically complex doc all chatted.
The PT did some muscle testing and believes it's neurological. The docs all agree. They are concerned about a bleed or a blood clot in his brain, basically a mini stroke.
Eli has an emergency appt with his neurologist tomorrow to try to figure out what is going on how to stop it, or atleast slow it and what to do next.
We as you can imagine are beyond terrified of the thought that our tiny 20 month old man may have had a stroke. We will update as we know more.
The PT did some muscle testing and believes it's neurological. The docs all agree. They are concerned about a bleed or a blood clot in his brain, basically a mini stroke.
Eli has an emergency appt with his neurologist tomorrow to try to figure out what is going on how to stop it, or atleast slow it and what to do next.
We as you can imagine are beyond terrified of the thought that our tiny 20 month old man may have had a stroke. We will update as we know more.
Tuesday, August 9, 2011
Progression SUCKS
Today Eli was simply supposed to have an appt with his new nutritionist. In true Eli fashion that isn't how the day went. We got there and waited for over 45 minutes. UGGGGH. Then the ARNP that works closely with Eli's complex kiddos doc came in. She had seen the massive amount of weight gain that he has had and was concerned. He is gaining over 46grams a day and he's supposed to gain 6grams a day. That a LOT. She is concerned about his kidneys no longer working properly to keep all of this flushed. Especially since he isn't peeing near as much and not nearly as often lately. We also voiced our concern over his legs and the tightness on the left side and the lack of movement on the right side. She did some range of motion and basic movements. She was as well concerned. The left side has a constricture (sp?) and is so tight you can hardly bring it up at all. The right side is dropping so bad that it's just floppy. His legs are rotating at the knee to the point you can almost completely turn it around. The hips are slightly stable at the front point and when she would continue the rotation they are becoming unstable and completely laying flat out. This is obviously not good and NOT what the body is supposed to do. This has all happened in the last week or so, well the advancement of it. He's always had the foot drop and some of those things but nothing like this. The NP was concerned that it's a neurological issue and called his neurologist immediately. She's also concerned that the bloating and swelling and fluid retention are being caused by the new HGH (human growth hormone) and immediately called the endocrinologist. The nutritionist is changing up his formula a bit, trying to lower the pedialyte as she is concerned that it's going to cause some issues with his electrolytes and sodium levels. His blood sugar levels have already been running a bit higher.
We ended up being there most of the day. We left with alot of information and alot of new emergency appts scheduled. Eli will be meeting with his neurologist, endocrinologist, a brand new nephrologist and getting ultrasounds of his kidneys.
I will update more as we know more. Right now we are AGAIN trying to sort out all of this information and process what's happening. We are so exhausted from taking so many steps backwards. Today is another one of those days that I HATE this fucking progressive disease that is taking over my little mans body.
We ended up being there most of the day. We left with alot of information and alot of new emergency appts scheduled. Eli will be meeting with his neurologist, endocrinologist, a brand new nephrologist and getting ultrasounds of his kidneys.
I will update more as we know more. Right now we are AGAIN trying to sort out all of this information and process what's happening. We are so exhausted from taking so many steps backwards. Today is another one of those days that I HATE this fucking progressive disease that is taking over my little mans body.
Sunday, August 7, 2011
Jace's 8th Birthday Weekend
I can't believe that my oldest boy is 8 yrs old already. Time flies.
My parents came in town for his bday weekend.
Saturday we went to the KC Zoo. It was our 1st time there and everyone had alot of fun. We saw lots of animals, went on a tram ride, a boat ride, a sky safari ride, and a train ride. Their favorite was the sky safari!
Here are a few pictures from our zoo trip.
Afterwards we all went out to dinner at the Melting Pot. The kids loved the experience.
Jace opened presents after dinner.
Today was grocery shopping and just laying low. My parents headed home today as well.
Here are some random pics from this last week.
Here are some pictures from Eli's therapy last week.
lastly here are 2 pictures from Emily's Macbeth performance. It was dark so I had trouble getting many good pictures.
Enjoy the photos! I promise to get more up soon!
My parents came in town for his bday weekend.
Saturday we went to the KC Zoo. It was our 1st time there and everyone had alot of fun. We saw lots of animals, went on a tram ride, a boat ride, a sky safari ride, and a train ride. Their favorite was the sky safari!
Here are a few pictures from our zoo trip.
Afterwards we all went out to dinner at the Melting Pot. The kids loved the experience.
Jace opened presents after dinner.
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| an accessory kit for his new ipod |
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| Jace got the Ipod he has been wanting so badly |
Today was grocery shopping and just laying low. My parents headed home today as well.
Here are some random pics from this last week.
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| My super handsome always smiling husband |
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| Jace playing angry birds on bob's cell phone |
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| Tiny man hauling all the tupperware lids out. His favorite game. |
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| Eli working with glue during sensory time at OT |
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| Eli working with signing at ST. He actually signed sheep! |
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| Eli working at PT, trying to walk behind a push toy. |
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| Emily playing the part of Malcolm |
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| tiny enjoying watching Emily's play |
Thursday, August 4, 2011
My boys
It seems as though my boys are all falling apart!
Jace ~ He's got a cough going on and now some sinus stuff adding to it. Saturday is his 8 yr birthday and he's sick. Go figure. He usually bounces back quickly so I'm assuming he'll do the same here.
Benjamin ~ He saw the doctor here a few weeks ago. She was concerned about his size and nutrition and behavior and decided to run multiple tests. She called us late yesterday with the results...not what we were expecting. On allergy testing a 2 and above means you are allergic. Ben scored an 18!!! He's allergic to wheat, dairy, and eggs. She said that these items are literally poisoning his body. She is having him meet with a nutritionist and very possibly a feeding therapy team. As most of you know, atleast those who know Ben, he only eats a few foods, and the few foods he eats are ALL on the above list of severe allergies. Go figure. Benjamin doesn't have not 1 single drop of weight to lose. This is going to be a long hard road.
Eli ~ We are still waiting on his MRI results. I have another call into the doc but haven't received a call back. Also a problem was noted at PT today. Eli's only using his left leg. He's turning his right leg completely out and dragging it behind his body, refusing to use it at all. His PT isn't sure why this is happening or what to do about it. I'm going to call his doctor to find out who I need to contact to get this newest thing figured out.
More updates soon!
Jace ~ He's got a cough going on and now some sinus stuff adding to it. Saturday is his 8 yr birthday and he's sick. Go figure. He usually bounces back quickly so I'm assuming he'll do the same here.
Benjamin ~ He saw the doctor here a few weeks ago. She was concerned about his size and nutrition and behavior and decided to run multiple tests. She called us late yesterday with the results...not what we were expecting. On allergy testing a 2 and above means you are allergic. Ben scored an 18!!! He's allergic to wheat, dairy, and eggs. She said that these items are literally poisoning his body. She is having him meet with a nutritionist and very possibly a feeding therapy team. As most of you know, atleast those who know Ben, he only eats a few foods, and the few foods he eats are ALL on the above list of severe allergies. Go figure. Benjamin doesn't have not 1 single drop of weight to lose. This is going to be a long hard road.
Eli ~ We are still waiting on his MRI results. I have another call into the doc but haven't received a call back. Also a problem was noted at PT today. Eli's only using his left leg. He's turning his right leg completely out and dragging it behind his body, refusing to use it at all. His PT isn't sure why this is happening or what to do about it. I'm going to call his doctor to find out who I need to contact to get this newest thing figured out.
More updates soon!
Tuesday, August 2, 2011
Quick MRI update
Today was little mans MRI. They were late getting his IV and getting him switched over to fluids. So his J feeds ran pedialyte until 1 hr before the sedation. The anesthesiologist came and talked with me for quite a bit discussing how he wanted to run the procedure in light of the Mito. He decided to do a full general anesthesia with intubation. Eli did suprisingly well. He's been really sleepy the rest of the day and has had quite a few day time O2 dips but nothing compared to how he usually reacts to anesthesia.
We met so many people today who were shocked over the Mito diagnosis. I got many questions and wow we haven't seen someone with it, and i heard about it in school and all that. A bit bothersome when people are so fascinated by actually meeting someone with a disease that isn't common.
anyways i'm sleepy tonight so more soon.
We met so many people today who were shocked over the Mito diagnosis. I got many questions and wow we haven't seen someone with it, and i heard about it in school and all that. A bit bothersome when people are so fascinated by actually meeting someone with a disease that isn't common.
anyways i'm sleepy tonight so more soon.
Monday, August 1, 2011
Damn Mito
I worked 4 hrs this morning packing up an unairconditioned upstairs loft that was full to the brim of collectibles. Fun times. Now I'm home cooling off and relaxing a bit.
My dear husband got the honor of taking a brand new nurse and ALL 5 children to Eli's doc appt. Mind you it's 104 degrees outside and this is Eli's complex kiddos doctors so these appts usually last about 2 or 3 hrs. The doc is again concerned about Eli. He has gained almost 2 lbs of weight in a week. It's all fluid retention. The doctor is concerned that his renal system isn't properly working. This much fluid retention can cause alot of pulmonary and cardiac issues, not to mention the pressure it in general puts on the renal system. The doc is running labs, looking back thru old labs trying to spot something that may not have been noticed in the past, and calling some docs in for help. If it's not one thing then it's another. I so wish we could just get to the bottom of it all and make it all better. But the problem is we have gotten to the bottom of it all and it's fucking mito. it's incurable. there isn't a damn thing we can do about it to make it better, to make it go away. i always hate mito, but some days i hate it even more. today is one of those days.
There is 1 other thing on my mind and heart. An incredibly dear friend of ours just received horrible news. She has bladder cancer. She has been there thru every step of this journey with Eli. Not only has she been his nurse from day 1, but she has been one of my very best friends and part of our family. I don't know how our family would have gotten thru this last 20 months if it hadn't been for her. Eli and I will be making a trip into Wichita soon to be there with her. If you can all please say a quick prayer for her and her family right now as she gets ready to undergo surgery, chemo, and everything else. thanks...oh and you guessed it...i HATE cancer AND mito!
My dear husband got the honor of taking a brand new nurse and ALL 5 children to Eli's doc appt. Mind you it's 104 degrees outside and this is Eli's complex kiddos doctors so these appts usually last about 2 or 3 hrs. The doc is again concerned about Eli. He has gained almost 2 lbs of weight in a week. It's all fluid retention. The doctor is concerned that his renal system isn't properly working. This much fluid retention can cause alot of pulmonary and cardiac issues, not to mention the pressure it in general puts on the renal system. The doc is running labs, looking back thru old labs trying to spot something that may not have been noticed in the past, and calling some docs in for help. If it's not one thing then it's another. I so wish we could just get to the bottom of it all and make it all better. But the problem is we have gotten to the bottom of it all and it's fucking mito. it's incurable. there isn't a damn thing we can do about it to make it better, to make it go away. i always hate mito, but some days i hate it even more. today is one of those days.
There is 1 other thing on my mind and heart. An incredibly dear friend of ours just received horrible news. She has bladder cancer. She has been there thru every step of this journey with Eli. Not only has she been his nurse from day 1, but she has been one of my very best friends and part of our family. I don't know how our family would have gotten thru this last 20 months if it hadn't been for her. Eli and I will be making a trip into Wichita soon to be there with her. If you can all please say a quick prayer for her and her family right now as she gets ready to undergo surgery, chemo, and everything else. thanks...oh and you guessed it...i HATE cancer AND mito!
Friday, July 29, 2011
Trying to Stay Afloat
The title of my post pretty much sums it all up. I'm sure most of you reading that immediately think money. If you did, you would be partially right. Money is tight. As most of you know Bob was laid off right after we moved here to KC. So obviously money has been very tight. I am helping out a friend who works for a moving company and doing a bit of packing. It's nice to get out a bit and meet new people, and help earn a touch of money to help out the family. It's not an actual job. It's something I've done 2 days and will only do once in a while when she has a packing job and I'm able to sneak away from Eli's very demanding schedule.
HOWEVER...money isn't our big issue. It's life and health and all of those things in between. We are exhausted. We are exhausted for us, for our kids, for our little man, and for all of the families out there that we support and love oh so deeply. It's a constant battle to keep our little man going, let alone the rest of our household. We are exhausted, all 7 of us.
My heart breaks for us, for my tiny man, for all of the parents and fellow tubies and mito kiddos, for all of the "normal" siblings out there, and for everyone else involved in our lives. The pain that our community faces on a minute by minute basis is overwhelming.
At our care plan meeting while Eli was inpatient, our team discussed sooo many things with us. They discussed that nothing was going to be a miracle cure, that we had to always remember that Eli's underlying diagnosis trumps all others and that "typical" cures for all of his side diagnosis's won't work like they normally would because of the mito. They reminded us like always that we have to settle for less, less in everything from medical treatments to quality of life. They talked about how they know we didn't pick this road, how hard it is to have a kiddo like Eli and how much of a daily struggle it is to keep him going. They acknowledged how much work it was, and offered up expanded nursing and more round the clock care. They told us how good of a job we were doing and they said they can only imagine the amount of time, work, and energy it takes to keep afloat with a kiddo like Eli. Currently we have chosen to turn down the increased nursing hours. We feel like we already have sooo many hours a month (345 hrs a month) and we aren't even using all of them. The doctors don't understand how hard it is to find good nurses. It's simply not worth it. But none of it changes the fact that we are freaking exhausted. No I'm not saying we are going to give up, not like that's even a choice in my opinion. We are simply saying we are worn out. It takes everything we have in us to get up each morning and do it all over again.
We currently have many friends struggling right now...when don't we. One of them is my nearest and dearest "little sister" who I have known since her mother was pregnant with her, and the other is one my best friends, the person I call when I feel like Eli's world is crashing down upon me, the one who gets it with no words needed. I feel as though I'm letting them down. I haven't been available, I haven't been supportive, I haven't checked in like I should, I haven't physically been there by their sides. I've been so wrapped up in simply keeping myself and my family moving in a forward going direction. I feel as though I have nothing left in me to give.
Some days it's a minute by minute kind of day. Today is one of those days. I stayed afloat today...
As I know everyone wants kiddo updates... :)
Emily~ Tonight was her final Shakespeare performance. She did great and said all of her lines beautifully. She had a great time over these last 3 weeks and learned alot!
Jace~ He's been a super busy man. He went swimming today and helped a friend nail down some 2 by 4's. He loves working with tools. Jace's new meds seem to be slowly working. His doctor doubled the one a few weeks ago, and they added a new one last week. We are hoping to really be making progress within the next few weeks.
Ben~ He's been doing decent. He's been stimming alot more lately, but hasn't had tooo many outburst. He also went swimming today, and seems to really enjoy the water. He's also one 1 new med, same as Jace, and will be getting his other med tweeked in the next few weeks.
Ari~ She's busy as always. She went swimming as well and got to water flowers and help out in the garden at a friends house today. She enjoys being outdoors and loves checking everything out. She also fed the birds and thought that was beyond amazing!
Eli~ He's still struggling. He is bloated and swollen to the point of uncomfortable. He's back to bright red and splotchy and sweating constantly. He ran low grades all day yesterday and has had a bit of a higher heart rate. His sugars have been good so that part is a plus. He has been alarming more at night lately, but we are thinking that's mostly due to the heat. His sedation MRI is coming up on Tuesday so we are nervous about the sedation and the results. The anesthesia team called today to go over his NPO orders, and I'm not fond of what this anesthesiologist has put into place. I will be talking to his doctor on Monday to see if we can get the orders changed around a bit.
I'm exhausted so I'm going to close for now. Going to try and watch some TV for a few and then it's off to bed to do it all again tomorrow.
I need a vacation...heck we need a vacation. All 7 of us (and Eli's nurse) need to just disappear into the wild blue yonder for a full week. hmmmm....now to just figure out which tree will be growing the money for this dream! :)
HOWEVER...money isn't our big issue. It's life and health and all of those things in between. We are exhausted. We are exhausted for us, for our kids, for our little man, and for all of the families out there that we support and love oh so deeply. It's a constant battle to keep our little man going, let alone the rest of our household. We are exhausted, all 7 of us.
My heart breaks for us, for my tiny man, for all of the parents and fellow tubies and mito kiddos, for all of the "normal" siblings out there, and for everyone else involved in our lives. The pain that our community faces on a minute by minute basis is overwhelming.
At our care plan meeting while Eli was inpatient, our team discussed sooo many things with us. They discussed that nothing was going to be a miracle cure, that we had to always remember that Eli's underlying diagnosis trumps all others and that "typical" cures for all of his side diagnosis's won't work like they normally would because of the mito. They reminded us like always that we have to settle for less, less in everything from medical treatments to quality of life. They talked about how they know we didn't pick this road, how hard it is to have a kiddo like Eli and how much of a daily struggle it is to keep him going. They acknowledged how much work it was, and offered up expanded nursing and more round the clock care. They told us how good of a job we were doing and they said they can only imagine the amount of time, work, and energy it takes to keep afloat with a kiddo like Eli. Currently we have chosen to turn down the increased nursing hours. We feel like we already have sooo many hours a month (345 hrs a month) and we aren't even using all of them. The doctors don't understand how hard it is to find good nurses. It's simply not worth it. But none of it changes the fact that we are freaking exhausted. No I'm not saying we are going to give up, not like that's even a choice in my opinion. We are simply saying we are worn out. It takes everything we have in us to get up each morning and do it all over again.
We currently have many friends struggling right now...when don't we. One of them is my nearest and dearest "little sister" who I have known since her mother was pregnant with her, and the other is one my best friends, the person I call when I feel like Eli's world is crashing down upon me, the one who gets it with no words needed. I feel as though I'm letting them down. I haven't been available, I haven't been supportive, I haven't checked in like I should, I haven't physically been there by their sides. I've been so wrapped up in simply keeping myself and my family moving in a forward going direction. I feel as though I have nothing left in me to give.
Some days it's a minute by minute kind of day. Today is one of those days. I stayed afloat today...
As I know everyone wants kiddo updates... :)
Emily~ Tonight was her final Shakespeare performance. She did great and said all of her lines beautifully. She had a great time over these last 3 weeks and learned alot!
Jace~ He's been a super busy man. He went swimming today and helped a friend nail down some 2 by 4's. He loves working with tools. Jace's new meds seem to be slowly working. His doctor doubled the one a few weeks ago, and they added a new one last week. We are hoping to really be making progress within the next few weeks.
Ben~ He's been doing decent. He's been stimming alot more lately, but hasn't had tooo many outburst. He also went swimming today, and seems to really enjoy the water. He's also one 1 new med, same as Jace, and will be getting his other med tweeked in the next few weeks.
Ari~ She's busy as always. She went swimming as well and got to water flowers and help out in the garden at a friends house today. She enjoys being outdoors and loves checking everything out. She also fed the birds and thought that was beyond amazing!
Eli~ He's still struggling. He is bloated and swollen to the point of uncomfortable. He's back to bright red and splotchy and sweating constantly. He ran low grades all day yesterday and has had a bit of a higher heart rate. His sugars have been good so that part is a plus. He has been alarming more at night lately, but we are thinking that's mostly due to the heat. His sedation MRI is coming up on Tuesday so we are nervous about the sedation and the results. The anesthesia team called today to go over his NPO orders, and I'm not fond of what this anesthesiologist has put into place. I will be talking to his doctor on Monday to see if we can get the orders changed around a bit.
I'm exhausted so I'm going to close for now. Going to try and watch some TV for a few and then it's off to bed to do it all again tomorrow.
I need a vacation...heck we need a vacation. All 7 of us (and Eli's nurse) need to just disappear into the wild blue yonder for a full week. hmmmm....now to just figure out which tree will be growing the money for this dream! :)
Tuesday, July 26, 2011
Home
Yesterday was supposed to be Eli's MRI. They got the IV going, stopped his feeds, and sent us down to MRI. We got there and they wanted to do a KUB to verify that the J feeds weren't going into his stomach. They read the KUB and claimed that his J tube was in his stomach not J. So we went back up to his room and they waited to go down to IR to get it changed out and replaced. The doctor immediately said his tube isn't in his stomach. So the idiot that read the KUB misread and we could have had the MRI after all. I was so frustrated.
They decided to simply do the MRI outpatient. The hospital was able to get Pfizer to donate 1 month worth of Eli's growth hormone($3000 worth of meds!). So we were able to come home!! We are so happy to be home.
We will be at the hospital ALOT over these next few weeks but atleast we will have some time home!
Tonight my dear hubby has planned to take us all out to dinner. The 7 of us rarely EVER go out so I'm excited to get to tonight!
More updates and some pictures tomorrow
They decided to simply do the MRI outpatient. The hospital was able to get Pfizer to donate 1 month worth of Eli's growth hormone($3000 worth of meds!). So we were able to come home!! We are so happy to be home.
We will be at the hospital ALOT over these next few weeks but atleast we will have some time home!
Tonight my dear hubby has planned to take us all out to dinner. The 7 of us rarely EVER go out so I'm excited to get to tonight!
More updates and some pictures tomorrow
Monday, July 25, 2011
Quiet Weekend / Start of Week
Day 7
It was a fairly quiet weekend. Eli started his Growth Hormones and did pretty well with them so far. They have raised his BS a touch and kept his BP slightly low, but nothing to concerning. The docs have also decided to up his feeds a bit. We did a calorie increase yesterday going from 22kcals to 24kcals. Still mixing with the pedialyte which adds 3kcals more per ounce. He seems to be doing pretty good with it. They are concerned if we don't get his calories increased decently, that the growth hormone will kick in trying to push his body to grow, and if Eli doesn't have enough extra calories to support that his body will break down things it shouldn't for energy.
Eli has had alot of grouchy time these last 2 days. He's done with this entire hospital stay. Normally when we are here he's actually sick. But right now we are here solely to get this shot every day. That's causing for a bored grouchy man. I totally get it though! :)
Today is hopefully Eli's sedation MRI. Since he has the growth hormone issues and the front half of the pituitary gland not working he has to have the MRI. There is a slight chance that a tumor is what is causing all of these problems, although they don't believe that is the case. He will also be getting his GJ tube swapped out today.
I will update more as I know more!
It was a fairly quiet weekend. Eli started his Growth Hormones and did pretty well with them so far. They have raised his BS a touch and kept his BP slightly low, but nothing to concerning. The docs have also decided to up his feeds a bit. We did a calorie increase yesterday going from 22kcals to 24kcals. Still mixing with the pedialyte which adds 3kcals more per ounce. He seems to be doing pretty good with it. They are concerned if we don't get his calories increased decently, that the growth hormone will kick in trying to push his body to grow, and if Eli doesn't have enough extra calories to support that his body will break down things it shouldn't for energy.
Eli has had alot of grouchy time these last 2 days. He's done with this entire hospital stay. Normally when we are here he's actually sick. But right now we are here solely to get this shot every day. That's causing for a bored grouchy man. I totally get it though! :)
Today is hopefully Eli's sedation MRI. Since he has the growth hormone issues and the front half of the pituitary gland not working he has to have the MRI. There is a slight chance that a tumor is what is causing all of these problems, although they don't believe that is the case. He will also be getting his GJ tube swapped out today.
I will update more as I know more!
Friday, July 22, 2011
Another Diagnosis Means Hospital Life Continues
Yesterday was a long day. Eli had his endocrine/adrenal testing. It started with having to get an IV placed which is never an easy task with Eli. Then he was given the first phase of meds. They caused his blood sugars to go all over the place. The second phase brought another medicine. It messed up his blood sugar, dropped his blood pressure really low, made him sweaty, and put him to sleep. He had to be fasting for this test and someone screwed up and didn't get fluids ordered. By the time the test was done his body was bouncing back. He wasn't peeing and ended up needing bladder ultrasounds and IV boluses.
Today began with lots of docs and checkins and such. This afternoon was his team meeting. There were 10 plus doctors there. His endocrine tests came back showing a problem. He has a growth hormone deficiency. The entire front half of his pituitary gland isn't working. He will be started on growth hormone injections tonight. Normally they do 5 a week but Eli requires them 7 days a week. He will remain inpatient until the meds are started and going properly AND until they have all the approvals thru insurance and the meds ready to deliver. So we have to soooo hope that there are no denials or appeals as that would mean we could be here for months. His endocrinologist doesn't believe it is safe for him to be outside of the hospital without this medication.
They believe that this issue is causing alot of the sweating, dehydration, fluid retention issues, inability to control his body temp, and even some of the fatigue. The endocrinologist did caution us and all of the other doctors there to remember that Eli does have an underlying issue, Mitochondrial Disease, that is also contributing and may block the meds from being a "miracle cure". Right now we are just hoping for some relief.
We have a long road ahead and everyone admits that. There were alot of differing opinions and plans of care ideas at the meeting, but the difficult road ahead isn't one of them. There was discussion about us not choosing this road we are on, but having to follow it. How hard it is and how rough it is to see him suffer. How there are no other options and how we simply have to do what we can. I hate these kinds of conversations, and they are a real struggle to get thru.
We got moved to a more long term stay room with more space and a bathtub for little man tonight. We also got moved to a new team that has residents and such available at all hours of day and night, as well as an attending available during the day. We will see how it all goes. Bob brought up the 4 older kids and we did pizza for dinner and now everyone is watching a movie. Little man is exhausted but enjoying having time with his siblings.
We will update as we know more. Right now we are as always trying to learn how to cope with all of this new information the last few days and how to continue to be as much of a family as possible while having Eli and I live inpatient.
Today began with lots of docs and checkins and such. This afternoon was his team meeting. There were 10 plus doctors there. His endocrine tests came back showing a problem. He has a growth hormone deficiency. The entire front half of his pituitary gland isn't working. He will be started on growth hormone injections tonight. Normally they do 5 a week but Eli requires them 7 days a week. He will remain inpatient until the meds are started and going properly AND until they have all the approvals thru insurance and the meds ready to deliver. So we have to soooo hope that there are no denials or appeals as that would mean we could be here for months. His endocrinologist doesn't believe it is safe for him to be outside of the hospital without this medication.
They believe that this issue is causing alot of the sweating, dehydration, fluid retention issues, inability to control his body temp, and even some of the fatigue. The endocrinologist did caution us and all of the other doctors there to remember that Eli does have an underlying issue, Mitochondrial Disease, that is also contributing and may block the meds from being a "miracle cure". Right now we are just hoping for some relief.
We have a long road ahead and everyone admits that. There were alot of differing opinions and plans of care ideas at the meeting, but the difficult road ahead isn't one of them. There was discussion about us not choosing this road we are on, but having to follow it. How hard it is and how rough it is to see him suffer. How there are no other options and how we simply have to do what we can. I hate these kinds of conversations, and they are a real struggle to get thru.
We got moved to a more long term stay room with more space and a bathtub for little man tonight. We also got moved to a new team that has residents and such available at all hours of day and night, as well as an attending available during the day. We will see how it all goes. Bob brought up the 4 older kids and we did pizza for dinner and now everyone is watching a movie. Little man is exhausted but enjoying having time with his siblings.
We will update as we know more. Right now we are as always trying to learn how to cope with all of this new information the last few days and how to continue to be as much of a family as possible while having Eli and I live inpatient.
Wednesday, July 20, 2011
Lots of Info
HOLY COW. It's been a heck of a day.
Eli's day started off with a meeting with his inpatient lead. She has some plans and is also coordinating a meeting with ALL of Eli's doctors.
Pulmonologist ~ Wants to do some basic sleep study type things. Wants more O2 monitoring and wants to figure out why on CPAP Eli seems to do worse, not better. Also wants to get the carseat issues figured out.
GI/Nutrition ~ Going to be working on changing his feeds. Trialing no pedialyte, as they are concerned it's causing alot of the swelling from all the extra sodium.
Endocrine ~ They have quite a few ideas as to what they think is going on but are going to be running over 16 tests tomorrow to try and figure it out for sure. They have also changed his sugars from every 6 hrs to every 2 hrs. The doctor is pretty aggressive and pretty thorough so we will see how it goes.
Eli met with Speech, OT, and speech/audiology. They got all of his therapies immediately regoing so that we don't lose any of the things we've been working towards.
Eli also got his AFO's today. They were able to get us in a few days early since we were already inpatient and they had a cancel today. He wore them for about 1 1/2 hrs. Hoping to get a bit more time with them on tomorrow.
I've left our biggest visit for last. Hematology came by. They have all of his lab results finally in. His genetic chromosomal testing came back abnormal. He has a condition called Factor V Leiden. This causing his body to struggle with controlling when it stops clotting. It increase his chances of having more blood clots, along with his risks of already having a clot and his other issues. We weren't expecting this at all. We all assumed that all of the testing would come back clear.
Eli is exhausted this evening and so are we. There were alot of meetings today and alot of information. Tomorrow we begin testing at 8am and it will apparently go most of the day. I will update when I'm able.
Eli's day started off with a meeting with his inpatient lead. She has some plans and is also coordinating a meeting with ALL of Eli's doctors.
Pulmonologist ~ Wants to do some basic sleep study type things. Wants more O2 monitoring and wants to figure out why on CPAP Eli seems to do worse, not better. Also wants to get the carseat issues figured out.
GI/Nutrition ~ Going to be working on changing his feeds. Trialing no pedialyte, as they are concerned it's causing alot of the swelling from all the extra sodium.
Endocrine ~ They have quite a few ideas as to what they think is going on but are going to be running over 16 tests tomorrow to try and figure it out for sure. They have also changed his sugars from every 6 hrs to every 2 hrs. The doctor is pretty aggressive and pretty thorough so we will see how it goes.
Eli met with Speech, OT, and speech/audiology. They got all of his therapies immediately regoing so that we don't lose any of the things we've been working towards.
Eli also got his AFO's today. They were able to get us in a few days early since we were already inpatient and they had a cancel today. He wore them for about 1 1/2 hrs. Hoping to get a bit more time with them on tomorrow.
I've left our biggest visit for last. Hematology came by. They have all of his lab results finally in. His genetic chromosomal testing came back abnormal. He has a condition called Factor V Leiden. This causing his body to struggle with controlling when it stops clotting. It increase his chances of having more blood clots, along with his risks of already having a clot and his other issues. We weren't expecting this at all. We all assumed that all of the testing would come back clear.
Eli is exhausted this evening and so are we. There were alot of meetings today and alot of information. Tomorrow we begin testing at 8am and it will apparently go most of the day. I will update when I'm able.
Rough Night
Tiny mans blood sugars dropped around 4am. Doc paged. Wanted a ton of labs plus an IV to run some d10. 1 1/2 hrs later we still couldn't get labs or an IV. sugars at this point fly up the opposite direction. Doc says hold on IV and labs and give him a break. They will recheck his sugars at 7am. Nurses want to have a serious talk with the doctors about needing a PICC line at minimum. I'm not looking forward to the talk but my poor little man is miserable and it's a major risk.
Will update more this morning as I know more.
Will update more this morning as I know more.
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