So, I know I haven't posted in FOREVER, but a lot has gone on. We moved 2 states away into a house that has required a LOT of work, so to say it has been crazy would be an understatement.
But, on October 20, 2013, our world got knocked of it's axis and I am still struggling to get things back to rights. It was a Sunday morning, but to really understand, I have to go back. For a few months prior, we were in and out of the hospital, b/c his new teachers were insistent that there was blood in his urine and yet I couldn't get any, nor could any of his doctors. It actually got pressed to the point that they threatened to call child protective services on me.
Well, the Friday before, my husband and I let him and our other two children spend the night with their aunt and uncle, which was VERY new to us, since no one ever really felt comfortable enough to have him overnight, except for my parents-in-love. The next day (Saturday) we picked him up and he started showing cold symptoms, which wasn't surprising, since it was starting to cool off and he always got stuffy noses.
So, Sunday morning, I decided that I would check on him (as I was throughout the night before) just before church to determine whether or not he and I would go to church. When I went to check him my heart sunk with what I saw. Isaiah was laying facedown in his own vomit. It wasn't surprising, though, since he would always vomit at some point, if he was stopped up. But, when I turned him over to get him off the vomit and get him cleaned up, my heart stopped. His breathing was VERY shallow. Trying not to freak out, I asked my husband to check him, as I packed my backpack for the hospital and tell me if I am overreacting. He immediately yelled at me to call 911. My world begins to tilt. I normally took him to hospital myself, he has never told me to call 911.
I called 911 and the ambulance was at my home in minutes. They surrounded his bed, it seemed so surreal. It seemed to take forever and they finally explained to me that they were trying to get him stable enough to transport him.... What?!?!?! Finally, they do and they rush us to the regular hospital, instead of the children's hospital, because they don't think he will make it all the way to the children's hospital. *it's okay..... Just breathe..... We've been here before.... Just breathe....*
At the hospital, we were met with by some of our recently met friends from our new church, which was so surprising! It's a Sunday morning! Surely, you would much rather be at church, praising the Lord, right???
When, I get past that, I find that the doctors and nurses are working feverishly on Isaiah. They start CPR and epinephrin shots... * Wait, what?!?! I know what epinephrin shots are for!!!! WHAT IS GOING ON??? We aren't even supposed to still be here!!! We are supposed to be on the way to the
children's hospital, so we can stay for a couple of day and then go home! * They did CPR for over 2 hours! I thought I was going to lose my mind in those 2 hours!!!! The doctor kept coming up to me and talking, but I couldn't hear or understand him! Finally, he tells me that the cycle are trying to stabilize him to be life flighted to the childrens hospital, because they aren't capable of handling pediatric issues. Then, the life flight people walk in and tell me that they only brought the ambulance, since they didn't even think he would even make it long enough to get on the helicopter. *HUH??? What the heck is going on????*
Well, they "stabilized" him enough to go to the children's hospital. Now, let me tell you, remember the new friends I told you about? I really expected them to all tell me and my husband to let us know how it goes and that they would be praying for us. THEY FOLLOWED US!!! We had a TRAIN speeding behind our ambulance!
I was a little stressed going to the children's hospital, but hey, isn't this classic Isaiah? Get as close to
death as he can, with as many dramatics as he can and then whip around as though nothing had ever
happened! So, they took us straight to the PICU, which comforted me, since I had been here before. They had to put a PICC line in to handle the drugs he needed, so they kicked us out.
When we went to the waiting room, there were even MORE people from our new church there! They had a bunch of "to go" boxes there and I was told that, they couldn't figure out what we would want to eat, so they got one of everything!!!!! In there, we joked and laughed and talked and it was great! I called my parents to let them know what was going on and my mom said they were on their way FROM GEORGIA!!! I didn't understand why they had to come, but I certainly didn't mind!
Forever later, nurse came out and one of my friends told me that she's just a nurse, it is still okay. And it was, the nurse just said that they are in the middle of trying to get the PICC line in and it should just be a little longer.
A few minutes later, my world toppled over. The doctor came.
She asked for me and my husband.
She rushed us everywhere, trying to find an empty private room.
She talked about Isaiah, about his heart going into cardiac arrest every time they tried to put the PICC line in and that they would remove as much as they could for me to be able to hold him in his last moments.
She didn't say "I'm sorry", though. We are still okay, right?
As she walked us to the room, my husband kept repeating to me that "it is not okay, Veronica. Do you understand? Everything is not okay."
We got to the room and the head nurse came in and said it.
"I'm sorry. There is nothing more we can do."
I got to hold him, but I knew that the machines weren't helping him. He was gone... Only his body remained. My world is now completely upside down.
I had to make the decision, because I know my husband doesn't want to even make me think about it,
if I don't want to. I have to take my beautiful heart off of life support.
I had to leave my heart in that hospital bed.
This last year has been so surreal as my husband, children and I try to adjust to this new family unit. We have been pools of tears, bubbles of laughter, wads of fear, but - over all of it - full of trust that God knows so much better than we do, what is best for every one of us. I can't say that I completely understand why God had to take him, but it really has opened my eyes, yet again, to His amazing ability to prepare us for this journey. He took Isaiah soon after we began our new life here in Mississippi, which meant that I didn't have to try to live in a house that we built around him. He took him before my husband and I set up our new bathroom to meet his needs as he grew older and bigger. And He only took him after we had our incredible new church family and loving friends firmly placed around us to soften the blow. This was the most crippling hit I have ever been dealt, but because my God loves me, I have had the most amazing friends to help me keep getting back to my feet, when I have those days that try to push me so hard into a pit of despair.
I'm just in awe of how the Creator of the universe could think of some of the most minute details of a little nothing like me! "His love is like a hurricane and I am a tree, bending beneathe the weight of His wind and mercy."
Thursday, October 30, 2014
Wednesday, October 9, 2013
Sometimes you've got to release!
So, Isaiah threw up yesterday morning and I had to keep him home from school. I know I already wrote some about this yesterday, but it was so hard to watch him... I kept him home to keep an eye on him, something I thought would be a simple, watch him get through this stomach bug, but he didn't throw up again. He didn't get a fever, no diarrhea, no nothing, except the heart wrenching cries and screams that started early yesterday afternoon and continued into this morning.
Lee and I wracked our brains trying to figure out what was wrong. We gave him an enema that didn't produce much.Then, knowing he was in some type of pain, I gave him some tylenol in hopes that he would hopefully get some respite from the pain to sleep. Finally, this morning at 4am, when he woke up screaming again, I made one last attempt, by giving him some infant gas relief. We were at our wits end! Without fever, lethargy, throwing up or diarrhea, nor did his eyes show any inkling that his shunt was malfunctioning, I had no clue what to do. My heart kept breaking with every cry of pain and I couldn't do a thing to help him!
When I figured that there was nothing else I could do to help him, I took him to the hospital. All I could think was that it must be his shunt. After testing and CT scans and X-rays, it turned out that he was simply backed up with constipation. My son is in a massive amount of pain, b/c I didn't take care of his bowels correctly! I felt (and am still working through the feelings of) like a HORRIBLE mother and, even as I am writing this, he is still crying in pain! How did I not see that he hasn't had a decent bowel movement in who knows how long?!?!
That got me to thinking... (admittedly, just before writing this blog) that there are so many times that we get backed up (sometimes with poop, but in an emotional and spiritual sense ;). We hold on to our drama. We hold on to the anger at the person that cut us off, or the pain of what was said about us, or the fear of trusting, or the self-consciousness of our ever increasing body mass. But unlike me, God is never off His game. He's never so overwhelmed with life that He forgets that we have needs. He's right there with His hands extended to us allowing - no, begging - us to release it to Him. Reaching for us to let it go to Him and lay it at His feet, so that we may live in peace. Our cries and sometimes screams break His heart to no end. He wants to relieve the pain and hurt, but that's where the difference comes. He can't do, nor will He do it, without our permission.
Lee and I wracked our brains trying to figure out what was wrong. We gave him an enema that didn't produce much.Then, knowing he was in some type of pain, I gave him some tylenol in hopes that he would hopefully get some respite from the pain to sleep. Finally, this morning at 4am, when he woke up screaming again, I made one last attempt, by giving him some infant gas relief. We were at our wits end! Without fever, lethargy, throwing up or diarrhea, nor did his eyes show any inkling that his shunt was malfunctioning, I had no clue what to do. My heart kept breaking with every cry of pain and I couldn't do a thing to help him!
When I figured that there was nothing else I could do to help him, I took him to the hospital. All I could think was that it must be his shunt. After testing and CT scans and X-rays, it turned out that he was simply backed up with constipation. My son is in a massive amount of pain, b/c I didn't take care of his bowels correctly! I felt (and am still working through the feelings of) like a HORRIBLE mother and, even as I am writing this, he is still crying in pain! How did I not see that he hasn't had a decent bowel movement in who knows how long?!?!
That got me to thinking... (admittedly, just before writing this blog) that there are so many times that we get backed up (sometimes with poop, but in an emotional and spiritual sense ;). We hold on to our drama. We hold on to the anger at the person that cut us off, or the pain of what was said about us, or the fear of trusting, or the self-consciousness of our ever increasing body mass. But unlike me, God is never off His game. He's never so overwhelmed with life that He forgets that we have needs. He's right there with His hands extended to us allowing - no, begging - us to release it to Him. Reaching for us to let it go to Him and lay it at His feet, so that we may live in peace. Our cries and sometimes screams break His heart to no end. He wants to relieve the pain and hurt, but that's where the difference comes. He can't do, nor will He do it, without our permission.
Tuesday, October 8, 2013
On the Move!
So, I haven't written in a while and suddenly I felt the urge, so.... here goes!
I think my last blog was over a year ago. I guess, I should give a little update. When I last wrote I was in Georgia and at the beginning of the year we moved out here to the calmer pace of Mississippi.
This journey started in November of last year....... *harps doing the bloobly thing* and we are driving home from our visit to Mississippi. My husand (Lee) and his brother (who is his only sibling) have wanted to move closer to each other ever since I've known them and finally, this last Thanksgiving, I felt comfortable with moving out here. So, we found a HUD home that fit everything we have ever wanted in a home! It's an actual ranch on THREE acres of land!!! AND IT'S ALL FLAT!!!!!!!! PLUS, it has a POND!!! Anyway, in order to get it, Lee had to move out here before the kids and I could. That meant, he had to leave his job, which was our security blanket and our access to insurance. Needless to say, those months were filled with a LOT of prayer and trust! What's funny, though, is the fact that God told me that this entire thing was going to be about trusting Him.
Well, trusting Him has been all I could do! Our house in Georgia was one that we had put on the market FOUR times, b/c of our need for a ranch. This being our fifth time had me stressed to no end. Long story short, we had a TON of showings, but no bites. Then, we finally got an investor that wanted us out in two weeks (oh, by this time we had FINALLY closed on our MS home), which was no problem to us! It was Easter weekend and his mother was kind enough to watch our children while his brother went with us to Georgia. We left at 6pm Friday and got back to Mississippi at about 8 or 9pm Saturday, so his brother would be back for Easter with his wife and baby. We were getting antsy for Friday, which was when we would be done with the house is Georgia!!! Thursday afternoon, though, shut all of that right down! I checked my email to find a termination letter regarding our Georgia home! WHAT?!?!?! I just got through sending paperwork for the closing in the morning!!! I frantically called our agents only to have them confirm that it was exactly what I thought, they were cancelling the closing. That next week, Lee and I stressed over what we were going to do. We finally decided to try to rent it out after a lot of tears and worry over the thought that we may have missed God. Then, the next week we got an offer for MORE than we were even asking! I was skeptical, but we did finally close and everyone was happy! At least in regards to that...
I got a chance to get the kids in school just in time for the last week of it. I was so excited to see where they would be and how they would like it. Well, I went to Isaiah's school. I like to drop in on them to see what they do with him and how he's liking it. What I saw broke my heart! I had never seen Isaiah so sad. He just looked so depressed. Unfortunately, it was the last week, so there wasn't much I was going to be able to do right then, but this year, we got things cleared up and have him in a better set up. BUT, between his new teachers freaking out over everything (which is understandable, since they don't really know him) and him actually getting sick with UTI's and now some kind of stomach bug, he's not even been in school an entire week and we are about 2 months into the school year! And that's been one of the toughest parts of this move: transferring him - and everything that goes with him - over here. I've had to take him to the hospital twice in a week and yesterday was his first day back. He finally stayed a whole day with no phone calls and then he threw up right before the bus got here this morning, which kept him home today. What stinks is that his mood has been all over the place today. I mean, even after throwing up, he was cracking up. Then, all afternoon he's been very whiny. We thought he may be backed up, so I gave him an enema only to find that he didn't have much to put out. He hasn't seemed lethargic and he has seemed lucid, so his shunt seems to still be functioning.... Then, after a visit with his pediatrician, I found out that he also has Cerebral Palsy, which may seem obvious or no big deal to some, but I had never heard of Spina Bifida before Isaiah, so to have CP added to the list hit me like a ton of bricks. Although, I do have to say I appreciated that doctor telling me as opposed to "putting it under the umbrella of Spina Bifida". The thought had never occurred to me that there could be something else going on, which explains why he can't speak and has less function on his left side. I don't know, as usual I am writing when I am exhausted, so I don't know if any of this makes any sense.
Some good things, though, are that we LOVE it out here!!! My mother-in-love actually offers to watch him! She actually offers to cath him!!! I can't believe it!!! I've never had anyone willing to help on that level with him! Plus, he is seen at LeBohnuer Children's Hospital, which happens to have some of the best doctor's in the nation! Our church, Cornerstone, actually has a special needs department! AND, the lady that headed up the Spina Bifida Clinic at LeBohnuer is over the children's church ministry at Cornerstone!!!! So, although it's been tough in some areas and scary in others, God has shown me time and again that I can trust Him. He's got us covered! Keep His kingdom first and ALL THESE THINGS will be added unto you!
I think my last blog was over a year ago. I guess, I should give a little update. When I last wrote I was in Georgia and at the beginning of the year we moved out here to the calmer pace of Mississippi.
This journey started in November of last year....... *harps doing the bloobly thing* and we are driving home from our visit to Mississippi. My husand (Lee) and his brother (who is his only sibling) have wanted to move closer to each other ever since I've known them and finally, this last Thanksgiving, I felt comfortable with moving out here. So, we found a HUD home that fit everything we have ever wanted in a home! It's an actual ranch on THREE acres of land!!! AND IT'S ALL FLAT!!!!!!!! PLUS, it has a POND!!! Anyway, in order to get it, Lee had to move out here before the kids and I could. That meant, he had to leave his job, which was our security blanket and our access to insurance. Needless to say, those months were filled with a LOT of prayer and trust! What's funny, though, is the fact that God told me that this entire thing was going to be about trusting Him.
Well, trusting Him has been all I could do! Our house in Georgia was one that we had put on the market FOUR times, b/c of our need for a ranch. This being our fifth time had me stressed to no end. Long story short, we had a TON of showings, but no bites. Then, we finally got an investor that wanted us out in two weeks (oh, by this time we had FINALLY closed on our MS home), which was no problem to us! It was Easter weekend and his mother was kind enough to watch our children while his brother went with us to Georgia. We left at 6pm Friday and got back to Mississippi at about 8 or 9pm Saturday, so his brother would be back for Easter with his wife and baby. We were getting antsy for Friday, which was when we would be done with the house is Georgia!!! Thursday afternoon, though, shut all of that right down! I checked my email to find a termination letter regarding our Georgia home! WHAT?!?!?! I just got through sending paperwork for the closing in the morning!!! I frantically called our agents only to have them confirm that it was exactly what I thought, they were cancelling the closing. That next week, Lee and I stressed over what we were going to do. We finally decided to try to rent it out after a lot of tears and worry over the thought that we may have missed God. Then, the next week we got an offer for MORE than we were even asking! I was skeptical, but we did finally close and everyone was happy! At least in regards to that...
I got a chance to get the kids in school just in time for the last week of it. I was so excited to see where they would be and how they would like it. Well, I went to Isaiah's school. I like to drop in on them to see what they do with him and how he's liking it. What I saw broke my heart! I had never seen Isaiah so sad. He just looked so depressed. Unfortunately, it was the last week, so there wasn't much I was going to be able to do right then, but this year, we got things cleared up and have him in a better set up. BUT, between his new teachers freaking out over everything (which is understandable, since they don't really know him) and him actually getting sick with UTI's and now some kind of stomach bug, he's not even been in school an entire week and we are about 2 months into the school year! And that's been one of the toughest parts of this move: transferring him - and everything that goes with him - over here. I've had to take him to the hospital twice in a week and yesterday was his first day back. He finally stayed a whole day with no phone calls and then he threw up right before the bus got here this morning, which kept him home today. What stinks is that his mood has been all over the place today. I mean, even after throwing up, he was cracking up. Then, all afternoon he's been very whiny. We thought he may be backed up, so I gave him an enema only to find that he didn't have much to put out. He hasn't seemed lethargic and he has seemed lucid, so his shunt seems to still be functioning.... Then, after a visit with his pediatrician, I found out that he also has Cerebral Palsy, which may seem obvious or no big deal to some, but I had never heard of Spina Bifida before Isaiah, so to have CP added to the list hit me like a ton of bricks. Although, I do have to say I appreciated that doctor telling me as opposed to "putting it under the umbrella of Spina Bifida". The thought had never occurred to me that there could be something else going on, which explains why he can't speak and has less function on his left side. I don't know, as usual I am writing when I am exhausted, so I don't know if any of this makes any sense.
Some good things, though, are that we LOVE it out here!!! My mother-in-love actually offers to watch him! She actually offers to cath him!!! I can't believe it!!! I've never had anyone willing to help on that level with him! Plus, he is seen at LeBohnuer Children's Hospital, which happens to have some of the best doctor's in the nation! Our church, Cornerstone, actually has a special needs department! AND, the lady that headed up the Spina Bifida Clinic at LeBohnuer is over the children's church ministry at Cornerstone!!!! So, although it's been tough in some areas and scary in others, God has shown me time and again that I can trust Him. He's got us covered! Keep His kingdom first and ALL THESE THINGS will be added unto you!
Saturday, February 18, 2012
It's not about me, It's about Him!
Hey all! So, I've had a few people read this or hear me talk about Isaiah and a lot of them respond with "you are such an AMAZING mom!" Or, "I don't know how you do it!" And it got me thinking...
See, I don't write this blog for sympathy or praise, one of my main reasons is for people to see how AMAZING God is! You see, I'm not an amazing mom, or even a great mom, b/c of what I deal with regarding Isaiah. It's God living in me, it's the fact that Jesus is the Lord of my life and with that comes the blessings of peace, strength, hope and the endurance to push through the trials of having a special needs child.
It may look easy or it may seem like I have it all together, but the reality is that without Jesus I would be slap drunk and overdosing on pain meds to deal with the drama (and don't think those ideas haven't come to mind at times!). This is the hardest thing I have ever had to go through. I mean, I've been through my own drama that only affected me, but now it's my son and I can't do anything about it. On top of that, the doctor basically blamed me for Isaiah having Spina Bifida. So, if I didn't have Jesus, I would have no hope. I would EASILY be able to drown in my sorrows.
Some of you may say, "there she goes, she off in lala land thinking this Jesus thing is real, but all she is doing is using Him as a crutch, instead of dealing with her emotions" or some such thing, but I lived a lot of my life without Him, thinking He didn't care about me or what I did. It was a lonely, hopeless, dark road to death. But when I truly allowed Him to be Lord of my life, He gave me what I needed to live again! And, yes, at one point He was my crutch, b/c there was no way I could stand without Him, but as an awesome friend of mine said in our homegroup, He is now my legs upon which I stand!
When I was faced with the news that I could lose my son, I was immediately overwhelmed with peace, knowing that Isaiah is really God's little boy and if He wanted to take him at that time, then it was for a purpose. You see, every good and perfect gift comes from God and sometimes those gifts may look kind of crummy at first, but it's to grow us into perfection!
So, my hope is that when you read these posts, you (if you know Christ as your Lord and Savior) walk away encouraged to face whatever trails you must face or (if you do not know Jesus as your Lord and Savior) you see the Light at the end of the tunnel that is beckoning you to come to Him, so He can remove the heavy load that you are carrying. He loves you so much. He wants you to be able to praise in the tough times. He wants you to be able to laugh when it looks like there is no reason to! But most of all, He wants to gush all over you with the love of a Father that truly misses His child.
See, I don't write this blog for sympathy or praise, one of my main reasons is for people to see how AMAZING God is! You see, I'm not an amazing mom, or even a great mom, b/c of what I deal with regarding Isaiah. It's God living in me, it's the fact that Jesus is the Lord of my life and with that comes the blessings of peace, strength, hope and the endurance to push through the trials of having a special needs child.
It may look easy or it may seem like I have it all together, but the reality is that without Jesus I would be slap drunk and overdosing on pain meds to deal with the drama (and don't think those ideas haven't come to mind at times!). This is the hardest thing I have ever had to go through. I mean, I've been through my own drama that only affected me, but now it's my son and I can't do anything about it. On top of that, the doctor basically blamed me for Isaiah having Spina Bifida. So, if I didn't have Jesus, I would have no hope. I would EASILY be able to drown in my sorrows.
Some of you may say, "there she goes, she off in lala land thinking this Jesus thing is real, but all she is doing is using Him as a crutch, instead of dealing with her emotions" or some such thing, but I lived a lot of my life without Him, thinking He didn't care about me or what I did. It was a lonely, hopeless, dark road to death. But when I truly allowed Him to be Lord of my life, He gave me what I needed to live again! And, yes, at one point He was my crutch, b/c there was no way I could stand without Him, but as an awesome friend of mine said in our homegroup, He is now my legs upon which I stand!
When I was faced with the news that I could lose my son, I was immediately overwhelmed with peace, knowing that Isaiah is really God's little boy and if He wanted to take him at that time, then it was for a purpose. You see, every good and perfect gift comes from God and sometimes those gifts may look kind of crummy at first, but it's to grow us into perfection!
So, my hope is that when you read these posts, you (if you know Christ as your Lord and Savior) walk away encouraged to face whatever trails you must face or (if you do not know Jesus as your Lord and Savior) you see the Light at the end of the tunnel that is beckoning you to come to Him, so He can remove the heavy load that you are carrying. He loves you so much. He wants you to be able to praise in the tough times. He wants you to be able to laugh when it looks like there is no reason to! But most of all, He wants to gush all over you with the love of a Father that truly misses His child.
Friday, February 10, 2012
WWWAAAYYY to close for comfort!!!
Sorry, folks! I am NOT good with keeping up with this thing! Plus, last year was a pretty good year! Then, December hit....
So, Isaiah was in class with only a few days left till Christmas break and his teacher texts me that he was kind of lethargic, but that they were going to feed him lunch and see how he does. Less than ten minutes later she calls telling me he vomited everywhere. Unfortunately, it was a self declared "pajama day". So, Jeremiah and I were NOT dressed to go anywhere and as some of you know, it's tough enough dressing yourself in a hurry, but a 3 year old?! It's a WHOLE other ballgame!
Well, we FINALLY made it out the door about twenty minutes later and all I could think is, "maybe, it's the shunt", "should I even waste my time taking him to the doc or should I go straight to the hospital?". I will tell you, though, that it does stink paying $150 to go the emergency room to be sent home with nothing. So, all I could do is get to him and figure it out from there.
We get to the school and I'm trying not to stress too much, since the nurse was waiting at the door for me and it only sounds like shunt issues, which we have had. So I know I can handle shunt issues and Isaiah would go through it like a walk in the park. But, then I got to his classroom.....
He looked lifeless in his teachers arms and she was crying and completely stressed out. I desperately wanted to hold him, but knew that I needed to act quickly without adding any stress to the people there.
I gently, but quickly grabbed him and started loading him onto his wheelchair, since that's the only way he can travel in my van and started getting him ready to go! Since I hadn't expected what I saw there, I still had Jeremiah with me, but since we go through so much with Isaiah, I have made it a habit to give Richard a heads up that I may have to dump Jeremiah and run with Isaiah to the hospital, which became the case. I drove as quickly and safely as I could to Richards job to give him Jeremiah, all the while checking Isaiah in my rear view mirror. It seemed as though he was getting worse by the second! Dear, Lord, what was wrong with my baby?! This is NOT a shunt issue!!!
After dropping Jeremiah with Richard, his Neurosurgeon's nurse called and I told her what was going on and she (THANK GOD!) told me that, if I needed to, pull over and have an ambulance meet me! Which is EXACTLY what I did! I had them meet me at my parents house that was less than 5 minutes away. And, on a side note, if you have someone flashing their lights at you, frantically waving for you to scoot over, just do it! My son was literally dying in the back of my van and this guy wanted to play around on the road, instead of letting me pass! It was the scariest thing ever! Isaiah looked like he was NOT going to make it to the hospital!!!
When we finally got to the hospital, my suspicions were confirmed when we were taken straight to trauma! I had never been there before, so I didn't know what was going on! I asked why we were there and they simply said that it helps the doctors and everyone to move faster with him, since they can have everything set up. Now, keep in mind that the furthest my brain is going is shunt issue, since everything has been totally fine with his cathings and flushings....up until they cathed him.
They put him on a bag and BROWN urine came out! BROWN! Not dark yellow, not yellow with traces of blood, BROWN!!!!! Then, they started asking me if he could have possibly gotten to some drugs that he wasn't supposed to take or if he could have drank any chemicals and I'm like, "WHAT?!" I am totally LOST!!!! Then, they tell me that we taken and kept in the PICU for a while and I am still lost! No one is telling me what is going on and I still can't seem to wrap my brain around what I am seeing!
We get up to the PICU and I am immediately kicked out for them to put a PIC (sp?) line in. A PIC line, as I found out in 2010, is a bigger version of an IV, also a more stable version. It's only used, though, when totally necessary, it's not a first choice kind of thing. Well, in 2010 his veins started collapsing from all of the IV's and that was why they went with the PIC line. So, I thought that was why they did it again. I was SO wrong!
Let me insert here that 10:30 am was when his teacher had originally text me, we got to the PICU at about 5:30 in the afternoon and at about 9:30 was when a doctor FINALLY spoke to me to give me an idea of what the heck was going on!
So, I'm sitting in the waiting room, well after my husband has left (he had to get our other two children from my parents house) and a girlfriend of mine was with me. The doctor FINALLY comes in to tell me what is going on and she isn't really telling me much, b/c she has NO CLUE what is wrong with him! I'm in SHOCK! She's supposed to know! She's supposed to come in, tell me "this is what is wrong and this is what we are going to do to fix it!" Instead, she tells me that they are running all kinds of tests and they can't find anything, but that something is attacking my sons ENTIRE body and he is dying! They have placed him in critical condition! I'm still stuck on "Wait, wait, WHAT? So, his shunt isn't malfunctioning?!"
They FINALLY let us in the room with him and he's has more tubes coming out of him than I have EVER seen on ANYONE! They think his lungs may collapse, so they have him on a breathing tube. They are pumping him full of the STRONGEST drugs they have, which is why they have 2 PIC lines going (for my nurse friends, I'm sorry I can't remember the real name of the one that is in his thigh). Then, I found out why he is considered "critical": it's b/c if they take him off any of those powerful drugs, he will die. My son was being kept alive by all the drugs being pumped into him. I was told "he is the worst case in the PICU" by one of the nurses. Now, before my nurse friends or anyone else gets upset at her for telling me that, I asked her to give it to me straight, b/c everyone was fluffing it up so much that I couldn't understand what was going on. I was thinking a day or two in the PICU and then we would go to a regular room for a while. No, his body was in shock when he got to he hospital. He WAS dying in my van.
I've had to do CPR on my son twice and this was the closest I had EVER come to losing him.
Now, some of you may ask: Hold up, I thought she was a Christian! How could God allow this to happen?! Surely, she would have turned from Him this time!
I am a Christian. And no where in the Bible does it say that it is going to be an easy road just b/c of it. As a matter of fact, I am doing a Beth Moore study right now on the book of James and he says "Consider it PURE JOY, my brothers, when facing trials of many kinds. B/c, you know, the testing of your faith develops perseverance. Perseverance much finish its work for you to become mature and complete, not lacking anything!" See, it's not easy. It's sometimes not fun, but "every good and perfect gift is from above" (James 1:17) and as I have recently learned in this study, "perfect" doesn't mean what we think it means, it means that it is a gift that is growing us into perfection in Him. So, even this trial is a gift from Him to grow me into perfection in Him!
As though that wasn't enough, as most of you know, I'm a minister of dance. While I was in the hospital with Isaiah, I was given the opportunity to minister to "Praise You in this Storm" by Casting Crowns. I was able to minister to the other parents and children in the same position I was in! See, what we see as hopeless, God sees as an opportunity! Isaiah isn't mine for me to get the glory (or even the fun) out of. He's God's little boy that He's going to bring others to Him by! My son is bringing people to Christ that we would have NEVER reached had he been a "healthy" boy!
Welp, I'll get off my podium now. I pray God helps you to see His plan in your trials!
So, Isaiah was in class with only a few days left till Christmas break and his teacher texts me that he was kind of lethargic, but that they were going to feed him lunch and see how he does. Less than ten minutes later she calls telling me he vomited everywhere. Unfortunately, it was a self declared "pajama day". So, Jeremiah and I were NOT dressed to go anywhere and as some of you know, it's tough enough dressing yourself in a hurry, but a 3 year old?! It's a WHOLE other ballgame!
Well, we FINALLY made it out the door about twenty minutes later and all I could think is, "maybe, it's the shunt", "should I even waste my time taking him to the doc or should I go straight to the hospital?". I will tell you, though, that it does stink paying $150 to go the emergency room to be sent home with nothing. So, all I could do is get to him and figure it out from there.
We get to the school and I'm trying not to stress too much, since the nurse was waiting at the door for me and it only sounds like shunt issues, which we have had. So I know I can handle shunt issues and Isaiah would go through it like a walk in the park. But, then I got to his classroom.....
He looked lifeless in his teachers arms and she was crying and completely stressed out. I desperately wanted to hold him, but knew that I needed to act quickly without adding any stress to the people there.
I gently, but quickly grabbed him and started loading him onto his wheelchair, since that's the only way he can travel in my van and started getting him ready to go! Since I hadn't expected what I saw there, I still had Jeremiah with me, but since we go through so much with Isaiah, I have made it a habit to give Richard a heads up that I may have to dump Jeremiah and run with Isaiah to the hospital, which became the case. I drove as quickly and safely as I could to Richards job to give him Jeremiah, all the while checking Isaiah in my rear view mirror. It seemed as though he was getting worse by the second! Dear, Lord, what was wrong with my baby?! This is NOT a shunt issue!!!
After dropping Jeremiah with Richard, his Neurosurgeon's nurse called and I told her what was going on and she (THANK GOD!) told me that, if I needed to, pull over and have an ambulance meet me! Which is EXACTLY what I did! I had them meet me at my parents house that was less than 5 minutes away. And, on a side note, if you have someone flashing their lights at you, frantically waving for you to scoot over, just do it! My son was literally dying in the back of my van and this guy wanted to play around on the road, instead of letting me pass! It was the scariest thing ever! Isaiah looked like he was NOT going to make it to the hospital!!!
When we finally got to the hospital, my suspicions were confirmed when we were taken straight to trauma! I had never been there before, so I didn't know what was going on! I asked why we were there and they simply said that it helps the doctors and everyone to move faster with him, since they can have everything set up. Now, keep in mind that the furthest my brain is going is shunt issue, since everything has been totally fine with his cathings and flushings....up until they cathed him.
They put him on a bag and BROWN urine came out! BROWN! Not dark yellow, not yellow with traces of blood, BROWN!!!!! Then, they started asking me if he could have possibly gotten to some drugs that he wasn't supposed to take or if he could have drank any chemicals and I'm like, "WHAT?!" I am totally LOST!!!! Then, they tell me that we taken and kept in the PICU for a while and I am still lost! No one is telling me what is going on and I still can't seem to wrap my brain around what I am seeing!
We get up to the PICU and I am immediately kicked out for them to put a PIC (sp?) line in. A PIC line, as I found out in 2010, is a bigger version of an IV, also a more stable version. It's only used, though, when totally necessary, it's not a first choice kind of thing. Well, in 2010 his veins started collapsing from all of the IV's and that was why they went with the PIC line. So, I thought that was why they did it again. I was SO wrong!
Let me insert here that 10:30 am was when his teacher had originally text me, we got to the PICU at about 5:30 in the afternoon and at about 9:30 was when a doctor FINALLY spoke to me to give me an idea of what the heck was going on!
So, I'm sitting in the waiting room, well after my husband has left (he had to get our other two children from my parents house) and a girlfriend of mine was with me. The doctor FINALLY comes in to tell me what is going on and she isn't really telling me much, b/c she has NO CLUE what is wrong with him! I'm in SHOCK! She's supposed to know! She's supposed to come in, tell me "this is what is wrong and this is what we are going to do to fix it!" Instead, she tells me that they are running all kinds of tests and they can't find anything, but that something is attacking my sons ENTIRE body and he is dying! They have placed him in critical condition! I'm still stuck on "Wait, wait, WHAT? So, his shunt isn't malfunctioning?!"
They FINALLY let us in the room with him and he's has more tubes coming out of him than I have EVER seen on ANYONE! They think his lungs may collapse, so they have him on a breathing tube. They are pumping him full of the STRONGEST drugs they have, which is why they have 2 PIC lines going (for my nurse friends, I'm sorry I can't remember the real name of the one that is in his thigh). Then, I found out why he is considered "critical": it's b/c if they take him off any of those powerful drugs, he will die. My son was being kept alive by all the drugs being pumped into him. I was told "he is the worst case in the PICU" by one of the nurses. Now, before my nurse friends or anyone else gets upset at her for telling me that, I asked her to give it to me straight, b/c everyone was fluffing it up so much that I couldn't understand what was going on. I was thinking a day or two in the PICU and then we would go to a regular room for a while. No, his body was in shock when he got to he hospital. He WAS dying in my van.
I've had to do CPR on my son twice and this was the closest I had EVER come to losing him.
Now, some of you may ask: Hold up, I thought she was a Christian! How could God allow this to happen?! Surely, she would have turned from Him this time!
I am a Christian. And no where in the Bible does it say that it is going to be an easy road just b/c of it. As a matter of fact, I am doing a Beth Moore study right now on the book of James and he says "Consider it PURE JOY, my brothers, when facing trials of many kinds. B/c, you know, the testing of your faith develops perseverance. Perseverance much finish its work for you to become mature and complete, not lacking anything!" See, it's not easy. It's sometimes not fun, but "every good and perfect gift is from above" (James 1:17) and as I have recently learned in this study, "perfect" doesn't mean what we think it means, it means that it is a gift that is growing us into perfection in Him. So, even this trial is a gift from Him to grow me into perfection in Him!
As though that wasn't enough, as most of you know, I'm a minister of dance. While I was in the hospital with Isaiah, I was given the opportunity to minister to "Praise You in this Storm" by Casting Crowns. I was able to minister to the other parents and children in the same position I was in! See, what we see as hopeless, God sees as an opportunity! Isaiah isn't mine for me to get the glory (or even the fun) out of. He's God's little boy that He's going to bring others to Him by! My son is bringing people to Christ that we would have NEVER reached had he been a "healthy" boy!
Welp, I'll get off my podium now. I pray God helps you to see His plan in your trials!
Thursday, October 20, 2011
AAAaaaaannnnnnnddddddd we're back!
Okay, so sadly I completely forgot I had even started this last year! But this morning I thought about it and tried to see if it was still up and here it is!!! Then, I got to thinking that I don't know some of the people following and they (and some of the people I haven't seen in a while) may be curious of what's been going on with my little man since the last time I posted. So, I'm gonna try to keep the communication lines open!
So, ummmmmm, last year one of my biggest prayers was that things would calm down by the end of the year with Isaiah, b/c we held him back from kindergarten one more year and I really wanted him not to be left hanging this year. I think I need to clarify that a little better! Well, we decided to keep him in pre-k last year, b/c he was in the hospital most of the time from January till the end of the school year. So, if we sent him to kindergarten (who looks at the progress from January till the end of the year!), they would have basically considered him a vegetable and left him in a corner. With that knowledge, I needed him to be out of the hospital from January to the end of the school year earlier this year. Well, finally on December 27th of last year, I received the news that he was okay. Then, in January, I had the appointments set up with his urologist and neurosurgeon and that's when I was told what was actually going on...
When I spoke to his urologist he told me what he really wanted to say, but didn't have time to at his last check up. He told me that Isaiah's MACE and mitrofinoff looked AMAZING! He said that he expected it to look fine, but he was amazed at how good it looked!!!! Then, when I took him in to see his neurosurgeon (who usually sees him right after a Cat-Scan, that we were planning on doing right after seeing him this time), he told us to take him home and leave him alone! He told me that he looked great and that he didn't think Isaiah needed to do anything else!!!!!!
So! Isaiah started Kindergarten this year and is being worked on and worked out!!! That, though was another interesting (at least to me) story...
Well, Isaiah had been in pre-k for three years. Same school, same teachers, same parapros, everything the same for THREE YEARS! On top of that, his Assistant Principal was in the marching band with me in high school! So, he loved all over Isaiah for THREE YEARS!!! On top of THAT, my daughter was going into his school this year for kindergarten!!!! Then, the bummer....Isaiah was moved to another school..........:o( I was so bummed that I actually cried about it a couple of times. They loved all over my little boy for three years and all of a sudden they were going to be replaced by someone that doesn't know Isaiah from a hole in the wall!!!
I felt bad for his new teachers. They had HUGE, AMAZING, BEDAZZLED shoes to fill!!!
I have to say that I am still not completely digging them. They are doing a great job, but they just aren't the same! And seeing that I am very pro "if it's not broke, don't fix it", it's REALLY hard for me to warm up to them! I'm usually okay with change, but this is NOT change that I like! Welp, I can't really do anything about it, since Isaiah has to go to a school that accommodates his special needs. So, I guess I'll suck it up and deal with it! LOL!!!
Well, there are more updates, but I will talk about those in the next coupla days.....
So, ummmmmm, last year one of my biggest prayers was that things would calm down by the end of the year with Isaiah, b/c we held him back from kindergarten one more year and I really wanted him not to be left hanging this year. I think I need to clarify that a little better! Well, we decided to keep him in pre-k last year, b/c he was in the hospital most of the time from January till the end of the school year. So, if we sent him to kindergarten (who looks at the progress from January till the end of the year!), they would have basically considered him a vegetable and left him in a corner. With that knowledge, I needed him to be out of the hospital from January to the end of the school year earlier this year. Well, finally on December 27th of last year, I received the news that he was okay. Then, in January, I had the appointments set up with his urologist and neurosurgeon and that's when I was told what was actually going on...
When I spoke to his urologist he told me what he really wanted to say, but didn't have time to at his last check up. He told me that Isaiah's MACE and mitrofinoff looked AMAZING! He said that he expected it to look fine, but he was amazed at how good it looked!!!! Then, when I took him in to see his neurosurgeon (who usually sees him right after a Cat-Scan, that we were planning on doing right after seeing him this time), he told us to take him home and leave him alone! He told me that he looked great and that he didn't think Isaiah needed to do anything else!!!!!!
So! Isaiah started Kindergarten this year and is being worked on and worked out!!! That, though was another interesting (at least to me) story...
Well, Isaiah had been in pre-k for three years. Same school, same teachers, same parapros, everything the same for THREE YEARS! On top of that, his Assistant Principal was in the marching band with me in high school! So, he loved all over Isaiah for THREE YEARS!!! On top of THAT, my daughter was going into his school this year for kindergarten!!!! Then, the bummer....Isaiah was moved to another school..........:o( I was so bummed that I actually cried about it a couple of times. They loved all over my little boy for three years and all of a sudden they were going to be replaced by someone that doesn't know Isaiah from a hole in the wall!!!
I felt bad for his new teachers. They had HUGE, AMAZING, BEDAZZLED shoes to fill!!!
I have to say that I am still not completely digging them. They are doing a great job, but they just aren't the same! And seeing that I am very pro "if it's not broke, don't fix it", it's REALLY hard for me to warm up to them! I'm usually okay with change, but this is NOT change that I like! Welp, I can't really do anything about it, since Isaiah has to go to a school that accommodates his special needs. So, I guess I'll suck it up and deal with it! LOL!!!
Well, there are more updates, but I will talk about those in the next coupla days.....
Friday, September 3, 2010
All Laundered Out!
So, as you know the mitrofinoff has had issues since we left the hospital. Well, since that's the one going to the bladder, it's been a TON of fun dealing with it! We've tried everything we could possibly think of to fix it, even temporarily, but NOTHING worked. Our last attempt was a couple of days before school started and lasted all of about two weeks. So, we have come to the unpleasant realization that the one surgery we have tried to avoid like the plague is the only option we have left.
So, we are scheduled to be at the hospital on September 19th and the surgery is scheduled for the 21st. That scheduling works awesomely in the sense that the kids are off of school for that week, so my mom can watch my other two while we are at the hospital. It's sucks on the other hand, since it means that we have another 16 days of dealing with him peeing EVERYWHERE! You see, he no longer pees out of his penis where is diaper is. NO, No, no, he pees out of his belly, where a diaper can only cover so much. We have to "wrap" a diaper around his belly, and the reason I put that in quotation marks is because of the fact that the diaper doesn't really make it all the way around, which means that it doesn't anchor. So, it keeps sliding below his mitrofinoff allowing all of the urine to go out onto his clothes. Then, since he sleeps on his belly, we sleep in a pool of urine every night, b/c Richard and I can only do so much!
It's frustrating, b/c we may not be the cleanest people, but doggonit! we aren't that bad! It's so gross and we can only bathe him SO much!!! And as if that wasn't enough, he is now getting a rash on his belly where the skin is breaking down from all of the moisture! We've tried diaper rash ointment, aquaphor, powder, everything! And NOTHING works! Why? B/c it's on his BELLY! Nothing will stay on there when he's crawling all over the place and the diaper won't stay in place either!
It's so hard to see all of this going on and not be able to do anything about it. The doctor wants to dedicate an entire day of surgery to Isaiah and that makes it even harder for us to get the date pushed up.
There are so many times that I completely understand why someone would give their special needs child up for adoption or to the government to care for. On the same token, though, I don't get how anyone could go through with it, you know? I mean, it would definitely be easier, but there is NOTHING I would give Isaiah up for! Even with all of the drama, he's one of the most AMAZING people I have EVER had the opportunity to know! He's had more surgeries than anyone I have ever met, yet he laughs so much, he hardly ever whines or complains, and he always has this peaceful attitude that is so contagious. I mean, when I can hang with him, no matter where we are, I can't help but be at peace when I see his calm, peaceful eyes. I also can't help but laugh at the situation when I hear him start cracking up over the most random things!
So, really, I thank God for the opportunity to care for this amazing little man and I wouldn't give it up for anything!
So, we are scheduled to be at the hospital on September 19th and the surgery is scheduled for the 21st. That scheduling works awesomely in the sense that the kids are off of school for that week, so my mom can watch my other two while we are at the hospital. It's sucks on the other hand, since it means that we have another 16 days of dealing with him peeing EVERYWHERE! You see, he no longer pees out of his penis where is diaper is. NO, No, no, he pees out of his belly, where a diaper can only cover so much. We have to "wrap" a diaper around his belly, and the reason I put that in quotation marks is because of the fact that the diaper doesn't really make it all the way around, which means that it doesn't anchor. So, it keeps sliding below his mitrofinoff allowing all of the urine to go out onto his clothes. Then, since he sleeps on his belly, we sleep in a pool of urine every night, b/c Richard and I can only do so much!
It's frustrating, b/c we may not be the cleanest people, but doggonit! we aren't that bad! It's so gross and we can only bathe him SO much!!! And as if that wasn't enough, he is now getting a rash on his belly where the skin is breaking down from all of the moisture! We've tried diaper rash ointment, aquaphor, powder, everything! And NOTHING works! Why? B/c it's on his BELLY! Nothing will stay on there when he's crawling all over the place and the diaper won't stay in place either!
It's so hard to see all of this going on and not be able to do anything about it. The doctor wants to dedicate an entire day of surgery to Isaiah and that makes it even harder for us to get the date pushed up.
There are so many times that I completely understand why someone would give their special needs child up for adoption or to the government to care for. On the same token, though, I don't get how anyone could go through with it, you know? I mean, it would definitely be easier, but there is NOTHING I would give Isaiah up for! Even with all of the drama, he's one of the most AMAZING people I have EVER had the opportunity to know! He's had more surgeries than anyone I have ever met, yet he laughs so much, he hardly ever whines or complains, and he always has this peaceful attitude that is so contagious. I mean, when I can hang with him, no matter where we are, I can't help but be at peace when I see his calm, peaceful eyes. I also can't help but laugh at the situation when I hear him start cracking up over the most random things!
So, really, I thank God for the opportunity to care for this amazing little man and I wouldn't give it up for anything!
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