I apologize for the lack of updates since Cale's surgery. We have had a tremendous outpouring of help and support and I'm feeling a tad bit guilty for not keeping everyone up to speed with Cale's progress. Alas, here is what's happening with the Burkhalter family.
Cale's surgery last Thursday was a success. I felt much better afterwards knowing that the doctor didn't hesitate for one second in telling us we did the right thing. Even so, seeing my boy in so much pain and seeing his little tummy forever changed by an impressive scar and foreign tube, I felt the wind quickly leave my sails.
Which is probably why the next few days left me so dejected.
Late Friday morning we hit our first major speed bump. After chatting with several visitors who had come through to see Cale, he attempted to test out his feet and stand up in bed. Upon doing so I noticed something leaking from underneath his gown. Hmmm. That can't be good. My mother-in-law lifted his gown and the tube that was previously anchored into his stomach was now dangling towards his knees. Not yet panicked, I stepped outside into the hall and notified his nurse as to what just happened. He stared at me for a few seconds and then quickly jumped into action. I didn't initially know what this all meant. I didn't know enough to be panicked or to even be concerned, but as soon as the parade of nurses and doctors hurriedly rushed around trying to think of the best way to go about fixing this situation, I knew that whatever had just happened wasn't an easy fix. I hopped into Cale's bed and cradled his head in my lap. I ran my fingers through his hair and told him not to be scared; that everything was going to be okay and that these people were going to take good care of him.
Right at that moment I was wishing more than anything that Alex was with us, with me. I was alone though. My mom had gone back to our house to shower and my mother-in-law had taken Riley and Cash down the hall to play. I was alone, my fear level rising more and more, and here I was telling Cale that everything was going to be okay. I needed someone there to tell me everything was going to be okay. My little boy was screaming in pain while they tried to feed the tube back through the hole they had made only the day before. The doctor told me that it was going to be painful but that they needed to do it as soon as possible otherwise the hole would close up and they would need to do surgery again. I watched the doctor's face as he tried to put it back in but I could tell it wasn't going well based on his expressions. Meanwhile Cale was screaming and crying in ways I had never heard before. I told him to squeeze my hand through the pain and I imagine his grip was similar to mine when Alex said the same to me when I was in labor. After a few minutes of pokes and jabs, Cale's surgeon looked at me and said the only way to safely proceed was to go into surgery...again.
That's when I broke down.
I hadn't cried up to this point but there was no stopping the tears. There's just no way to explain the emotional exhaustion of watching your child be put to sleep and in my mind I had crossed that finish line yesterday. I wasn't prepared to do it again, even as minor the procedure as it was.
An hour later Cale was once again being wheeled into the operating room.
Any progress we had made in recovering from the first surgery was now going to have to start all over. Thankfully we were able to choose different pain medications and coming out of anesthesia was night and day from the day before. Cale seemed to be more comfortable and once the surgeon was able to come out and talk to us, he sheepishly confessed that the tube may not have been placed correctly to begin with and that the tube falling out was perhaps a blessing in disguise.
The following days of recovery were much of the same. We were able to start tube feeds on Sunday and he seemed to get stronger and stronger by the hour. By discharge day, Monday, he was walking up and down the halls trying to get on any computer he could find. One would say he was finally starting to act like himself.
One thing I hadn't prepared myself for was the amount of responsibility we would have coming home. While in the hospital we briefly learned how to administer his feedings and care for the incision sites. I felt pretty capable to do all of these things but once we were discharged I literally had a series of mini panic attacks on the drive home. I felt as though we were driving home with our firstborn child and we hadn't read any baby books or been around anyone with a baby before. This was all so new to me and my lack of knowledge and feelings of unpreparedness were so unbelievably overwhelming.
A nurse met us at our house to give us all the supplies we would need and to set us up with a feeding pump. One part of getting Cale back to where he needs to be nutritionally is to have him receive a drip feeding throughout the night. I can honestly say this is what disappointed me the most. This is what set me over the edge emotionally. Cale's bedside no longer has a cute end table with a cute little car night light on top. No, instead his bed side is decorated with an IV pole and feeding pump attached to it. Each time I pass by his room I have to make a conscience effort not to look in, otherwise the tears start to flow again. There's just something about seeing such a specialized piece of equipment in our house and knowing that my child cannot properly grow without it that makes me so sad.
We are currently trying to adjust to a new routine. The "button" that is attached to the outside of Cale's stomach has two tubes that go inside; one tube leads directly into his stomach and the other tube leads directly into his small intestine. He gets "fed" every three hours through the tube leading into his stomach and the tube leading into his small intestine needs to be flushed with water every four hours. I feel like all I do during the day is connect and disconnect tubes. I'm either cleaning all of the supplies, administering medicine, mixing formula, making sure Cale isn't doing something that could lead to his tube getting ripped out, or feeding him and the rest of the family.
I feel like a nurse without the paycheck.
I've been especially discouraged today because Cale is experiencing the same pain symptoms as before the surgery and I can't help but let my mind spiral to the bottomless question of, What if? What if the surgery didn't fix anything? What if the surgery was just a mask over a bigger problem? Sure, I won't have to clean up vomit anymore but at this point I'd rather clean up vomit than watch him hurting all the time.
I feel like our journey with Cale is a dead end road. I'm so tired of this emotional roller coaster. I was expecting a pain-free little boy at the end of this and my heart is breaking, once again, with the realization that this may not happen.
Thursday, January 12, 2012
Thursday, January 5, 2012
surgery day
A quick update before my eyes roll back in my head and my face collapses onto the keyboard. It was a long day and I am e x h a u s t e d.
The surgery itself went as well as the surgeon could have expected. He didn't go into a whole lot of detail but he did say that when he saw how large the hernia was he was a little taken aback. He apparently didn't wake up expecting to see what he did. They initially told us to expect an hour and a half to two hours for total surgery time but Alex and I nervously watched the clock tick past two hours, then three hours, and finally at the four hour mark the anesthesiologist came and led us back to the recovery room. Cale was already awake and, rightfully so, very scared. I laid with him in the bed to try and calm him as much as I could but I think it was the third dose of morphine that finally was able to put him at ease. The surgeon explained to us that the size of the hernia was what increased the surgery time and apparently it was quite the battle to get his stomach back down where it should be. He affirmed us by saying we absolutely did the right thing and that this surgery was 100% necessary. Whew!
When we left Cale tonight (my mom is staying with him) his pain was seemingly under control but he spent the majority of the afternoon incredibly uncomfortable. He has been getting doses of morphine every hour and will continue with that plan through the night. Hopefully by tomorrow we can start backing off on the pain meds. One concern is he has yet to produce a wet diaper even though he has been on a constant drip of fluids since surgery. We're hoping it's just taking awhile for his systems to wake back up from the anesthesia but it's definitely something to be mindful of.
An encouraging thing that happened was that Cale was able to eat a few ice chips. One of the many cons of this surgery is that swallowing can be incredibly difficult during the first six to eight weeks after surgery, but Cale seemed to tolerate the ice chips without too much hassle. I'm hoping the same ease carries over into swallowing food.
We made it - the surgery is finally behind us. After today I am realizing the recovery process is going to be harder than expected but thankfully we have a giant sized support system to help us along the way. We had several people come and sit with us while Cale was in surgery and I can't even begin to describe what a blessing that was, especially since the surgery time went well beyond what we expected. My mom drove in from Billings and will be staying the night with Cale tonight and tomorrow night and then Alex's biological mom from Seattle will stay with him the remainder of the nights. Alex's bonus mom, Leslie, has also made herself available to be with Cale and help with Riley whenever needed. Others have offered to keep Riley entertained while we focus on Cale and Alex and I get to come home to a cooked meal each day. We are so blessed.
The "church" is much more than a building for people to enter. The "church" is a group of people shedding God's love upon others by they themselves showing love to other people. I can't think of a better testimony of Christ's sacrifice for us on the cross than lovingly meeting the needs of other people. Our family has been no stranger to the kindness of others and I can't even begin to express my gratefulness for such a loving and caring support of people.
More tomorrow! Also, Cale would love to have visitors so please feel free to text my phone if you want to stop on by. :)
The surgery itself went as well as the surgeon could have expected. He didn't go into a whole lot of detail but he did say that when he saw how large the hernia was he was a little taken aback. He apparently didn't wake up expecting to see what he did. They initially told us to expect an hour and a half to two hours for total surgery time but Alex and I nervously watched the clock tick past two hours, then three hours, and finally at the four hour mark the anesthesiologist came and led us back to the recovery room. Cale was already awake and, rightfully so, very scared. I laid with him in the bed to try and calm him as much as I could but I think it was the third dose of morphine that finally was able to put him at ease. The surgeon explained to us that the size of the hernia was what increased the surgery time and apparently it was quite the battle to get his stomach back down where it should be. He affirmed us by saying we absolutely did the right thing and that this surgery was 100% necessary. Whew!
When we left Cale tonight (my mom is staying with him) his pain was seemingly under control but he spent the majority of the afternoon incredibly uncomfortable. He has been getting doses of morphine every hour and will continue with that plan through the night. Hopefully by tomorrow we can start backing off on the pain meds. One concern is he has yet to produce a wet diaper even though he has been on a constant drip of fluids since surgery. We're hoping it's just taking awhile for his systems to wake back up from the anesthesia but it's definitely something to be mindful of.
An encouraging thing that happened was that Cale was able to eat a few ice chips. One of the many cons of this surgery is that swallowing can be incredibly difficult during the first six to eight weeks after surgery, but Cale seemed to tolerate the ice chips without too much hassle. I'm hoping the same ease carries over into swallowing food.
We made it - the surgery is finally behind us. After today I am realizing the recovery process is going to be harder than expected but thankfully we have a giant sized support system to help us along the way. We had several people come and sit with us while Cale was in surgery and I can't even begin to describe what a blessing that was, especially since the surgery time went well beyond what we expected. My mom drove in from Billings and will be staying the night with Cale tonight and tomorrow night and then Alex's biological mom from Seattle will stay with him the remainder of the nights. Alex's bonus mom, Leslie, has also made herself available to be with Cale and help with Riley whenever needed. Others have offered to keep Riley entertained while we focus on Cale and Alex and I get to come home to a cooked meal each day. We are so blessed.
The "church" is much more than a building for people to enter. The "church" is a group of people shedding God's love upon others by they themselves showing love to other people. I can't think of a better testimony of Christ's sacrifice for us on the cross than lovingly meeting the needs of other people. Our family has been no stranger to the kindness of others and I can't even begin to express my gratefulness for such a loving and caring support of people.
More tomorrow! Also, Cale would love to have visitors so please feel free to text my phone if you want to stop on by. :)
Wednesday, January 4, 2012
confession
I've been feeling a tad guilty lately over my emotions regarding my son. Yes, Cale's struggles and life journey have put me through the ringer and then some. I've experienced a side of grief that I never had before and my good days and bad days seem to change so fast that it's hard to keep track of which kind of day I'm having. I'm always aware of our situation because Cale is constantly with us (thank God) which makes it hard to escape from the different life that God has given us. I used to have periods in my life, mostly when Cale was younger, when I would constantly wish that Cale were like all of my other friend's kids. I compared Cale to his peers until my head would nearly spin off into the universe until finally comparing him to other kids got to be so depressing that I shut that part of my brain off completely. Those periods of wishing Cale were normal used to be a daily struggle, but thankfully those years turned into days and now I only seem to have those moments a few minutes at a time. I truly love Cale for who God created him to be and even though it's impossible to say for sure, I don't think I could love my children as fully if we had been dealt a normal life. I'm definitely in a place where I can genuinely thank God for Cale and accept that he is exactly how God intended to create him.
I've been feeling guilty because this surgery seems like such a big deal to me. And it is...to ME. If someone were reading this who had lost a child or was helping a child fight cancer I'm pretty sure they would roll their eyes at my sob story and sarcastically tell me boo hoo! And I get it. This surgery is not life or death and even though it's going to forever change the way Cale's body works, God willing he will recover just fine and make positive steps forward. Like I said yesterday, this surgery is not a quick fix and we have a very long road to go down from here, but Cale will get through this. We all will.
With that said, Cale's surgery is tomorrow morning at 8:30. We met with the surgeon today and he affirmed our decision to go forth with it. He fully agreed that this was necessary and for the moment put my mind at ease. Cale's recovery time in the hospital will all depend on how quickly his intestines "wake up" and if we can manage his pain effectively. The surgeon said anywhere between three to seven days in the hospital and then another six to eight weeks until Cale is finally feeling like himself. We've tried our best to prepare him for what's going to happen and I think he gets it, or at least as much as a five year old can get something like this. He gets incredibly excited when we tell him it won't hurt anymore when he eats and the thought of being able to drink as much water as he wants throws him into fits of giggles. He also doesn't mind that he gets a couple weeks off from school. :) I think he's ready and I think I am, too.
It's been a long road leading up to tomorrow and I don't know how we could have got through it as well as we have without the love and support from our friends and family. We truly have an army of supporters and it blows me away to see everyone surround us with prayer and love. I have some of the greatest friends who have offered to bring us meals and the thoughtfulness of everyone just tickles me to pieces! I think I've said this before but I really hope I can be as great a friend to those who have been so kind to us during this entire journey. So, thank you for all of the help, for reading this and checking in with Cale, and for praying for our family.
Tomorrow this part of our journey will all be behind us...
I've been feeling guilty because this surgery seems like such a big deal to me. And it is...to ME. If someone were reading this who had lost a child or was helping a child fight cancer I'm pretty sure they would roll their eyes at my sob story and sarcastically tell me boo hoo! And I get it. This surgery is not life or death and even though it's going to forever change the way Cale's body works, God willing he will recover just fine and make positive steps forward. Like I said yesterday, this surgery is not a quick fix and we have a very long road to go down from here, but Cale will get through this. We all will.
With that said, Cale's surgery is tomorrow morning at 8:30. We met with the surgeon today and he affirmed our decision to go forth with it. He fully agreed that this was necessary and for the moment put my mind at ease. Cale's recovery time in the hospital will all depend on how quickly his intestines "wake up" and if we can manage his pain effectively. The surgeon said anywhere between three to seven days in the hospital and then another six to eight weeks until Cale is finally feeling like himself. We've tried our best to prepare him for what's going to happen and I think he gets it, or at least as much as a five year old can get something like this. He gets incredibly excited when we tell him it won't hurt anymore when he eats and the thought of being able to drink as much water as he wants throws him into fits of giggles. He also doesn't mind that he gets a couple weeks off from school. :) I think he's ready and I think I am, too.
It's been a long road leading up to tomorrow and I don't know how we could have got through it as well as we have without the love and support from our friends and family. We truly have an army of supporters and it blows me away to see everyone surround us with prayer and love. I have some of the greatest friends who have offered to bring us meals and the thoughtfulness of everyone just tickles me to pieces! I think I've said this before but I really hope I can be as great a friend to those who have been so kind to us during this entire journey. So, thank you for all of the help, for reading this and checking in with Cale, and for praying for our family.
Tomorrow this part of our journey will all be behind us...
Tuesday, January 3, 2012
surgery update
I've been trying for the last hour to put into words what's going through my mind and how I'm feeling but each time I get a sentence down my finger latches onto the backspace button. So rather than try and make sense of my emotions I will just simply say this:
Cale is going in for surgery on Thursday. I've been tempted many, many times to call all of this off and postpone it for a few more months. I suppose in my mind I think a few more months will make me more ready for the changes that are about to take place in our lives but the truth in all of this is that I will never be ready. No amount of time is going to take away my fear and doubts. I'm scared beyond belief and the dread inside of me almost feels too much to bear.
My emotions make no sense to me. We've been waiting for this day for years and now that it's finally here I find myself back peddling on our decision. I've been alerted to many of the cons of the two procedures Cale will have and even though there is no other way to fix a hiatal hernia, I'm wastefully wishing there was another way.
We are meeting with the surgeon tomorrow for a pre-op appointment and we should know more after that. Right now it's my understanding that Cale will be recovering in the hospital for seven nights. Alex is currently in the middle of his work's busiest time of year and will not be available to take time off, which leaves me as the only parent to be with Cale. (my mom and mother-in-law will be here to help off and on) Based on experience, hospital stays are incredibly hard and taxing and this will be the longest one we've done yet.
I want to try and get a list of things we need prayer for but right now I can't seem to think straight. I will say this, though. Even amidst all of my fear and dread, I am confident that God's provision over us is pure. I believe in His sovereignty and trust Him with Cale. I'm so thankful that our God is good and that He forgives me when I let fear overshadow His perfect plans for us. Thank goodness He is in control because if I were in the driver's seat I would be adding and deleting things from my calendar faster than I could type them. I'm thankful for this Thursday and the road God has paved for us to get here.
God is good.
Cale is going in for surgery on Thursday. I've been tempted many, many times to call all of this off and postpone it for a few more months. I suppose in my mind I think a few more months will make me more ready for the changes that are about to take place in our lives but the truth in all of this is that I will never be ready. No amount of time is going to take away my fear and doubts. I'm scared beyond belief and the dread inside of me almost feels too much to bear.
My emotions make no sense to me. We've been waiting for this day for years and now that it's finally here I find myself back peddling on our decision. I've been alerted to many of the cons of the two procedures Cale will have and even though there is no other way to fix a hiatal hernia, I'm wastefully wishing there was another way.
We are meeting with the surgeon tomorrow for a pre-op appointment and we should know more after that. Right now it's my understanding that Cale will be recovering in the hospital for seven nights. Alex is currently in the middle of his work's busiest time of year and will not be available to take time off, which leaves me as the only parent to be with Cale. (my mom and mother-in-law will be here to help off and on) Based on experience, hospital stays are incredibly hard and taxing and this will be the longest one we've done yet.
I want to try and get a list of things we need prayer for but right now I can't seem to think straight. I will say this, though. Even amidst all of my fear and dread, I am confident that God's provision over us is pure. I believe in His sovereignty and trust Him with Cale. I'm so thankful that our God is good and that He forgives me when I let fear overshadow His perfect plans for us. Thank goodness He is in control because if I were in the driver's seat I would be adding and deleting things from my calendar faster than I could type them. I'm thankful for this Thursday and the road God has paved for us to get here.
God is good.
Wednesday, December 14, 2011
post ohio
We have been home for several days now and let's just say the transition back to reality has not been easy. An awful stomach bug has ravaged our household and everyone but Cash has been subject to the pukies. The "high" of finding answers in Ohio wore off the second the stress of finding a qualified surgeon to perform Cale's surgery set in. To top it off, Cale has been refusing food ever since we returned home and the sight of his frail, weak body literally makes my eyes squirm. The stress mounted on my shoulders right now seems unmanageable and once again I feel like I'm drowning in the uncertainty of everything. I feel almost guilty admitting that things are not all sugar and spice after finding such a huge answer to prayer in Ohio but I am quickly learning that our trip there was just a tip off the iceberg.
Alex and I have been talking to as many resources as we possibly can in attempts of picking the best surgeon for Cale's surgery. Everyone seems to have a different opinion and the responsibility of making this decision is horrendously overwhelming. Part of picking the surgeon also involves deciding whether or not we need to travel. From what we know, the recovery time is three to five days in the hospital once the surgery is complete and ideally I would like to stay in Missoula. There is one surgeon here who is qualified and has been recommended to us by several people and with Cale's nutrition in danger I think we will choose to have it done in Missoula, for time's sake if not for anything else. We are waiting for the doctors in Ohio to complete their report so that they we can get the referral to schedule the surgery as soon as possible. With Christmas drawing near I am really hoping we get the referral soon so that we don't have to spend Christmas in the hospital.
The stress of getting his surgery scheduled and the stress of watching his little body get weaker and weaker by the day has almost kept me from tapping into the whole emotional side of everything that has happened in the past couple of weeks. My head understands that he will have surgery to fix the hiatal hernia and a g-tube placed in his abdomen so that he can get nutrition directly delivered into his stomach, but a little bit of my heart is breaking knowing that all of our hard work for the past five years has basically been for not. My persona as a calorie-counting nazi was achieved by watching every calorie consumed, even being forceful at times, and being a regular at the weight-check station in our pediatrician's office. I've worked my tail off and gained several worry lines on my face by monitoring Cale's nutrition, and all of that work was done to avoid having a g-tube placed in my Cale. A g-tube was an option we had from the very beginning and I've fought with all of my being to keep it from being our solution. This new reality of Cale getting fed through a tube is heartbreaking and I know I'm just in the beginning stages of coming to terms with that. What kind of mom fails at being able to provide adequate nutrition for their own child?
Cale has been sedated more times than any adult will be in their entire lifetime. This surgery will just be another hashmark we can put in his records. I feel like I'm on such a roller coaster; either I'm feeling overwhelmed by God's goodness and His perfect provision for our lives, or I'm questioning His sovereignty and playing the timeless game of "why me". I wish I could believe and live out God's promises for me and trust that those same promises apply to Cale's life, but sometimes it's hard to believe God's goodness when our circumstances have been brought into our lives by God. Faith is impossible to perfect and I hate when I start doubting God's provision over our lives.
I hope to update again soon with a surgery date. Thank you again for all of the prayers. Even though God's goodness seems foggy to me at times, I want to believe that all of this will bring us out on a better side.
Alex and I have been talking to as many resources as we possibly can in attempts of picking the best surgeon for Cale's surgery. Everyone seems to have a different opinion and the responsibility of making this decision is horrendously overwhelming. Part of picking the surgeon also involves deciding whether or not we need to travel. From what we know, the recovery time is three to five days in the hospital once the surgery is complete and ideally I would like to stay in Missoula. There is one surgeon here who is qualified and has been recommended to us by several people and with Cale's nutrition in danger I think we will choose to have it done in Missoula, for time's sake if not for anything else. We are waiting for the doctors in Ohio to complete their report so that they we can get the referral to schedule the surgery as soon as possible. With Christmas drawing near I am really hoping we get the referral soon so that we don't have to spend Christmas in the hospital.
The stress of getting his surgery scheduled and the stress of watching his little body get weaker and weaker by the day has almost kept me from tapping into the whole emotional side of everything that has happened in the past couple of weeks. My head understands that he will have surgery to fix the hiatal hernia and a g-tube placed in his abdomen so that he can get nutrition directly delivered into his stomach, but a little bit of my heart is breaking knowing that all of our hard work for the past five years has basically been for not. My persona as a calorie-counting nazi was achieved by watching every calorie consumed, even being forceful at times, and being a regular at the weight-check station in our pediatrician's office. I've worked my tail off and gained several worry lines on my face by monitoring Cale's nutrition, and all of that work was done to avoid having a g-tube placed in my Cale. A g-tube was an option we had from the very beginning and I've fought with all of my being to keep it from being our solution. This new reality of Cale getting fed through a tube is heartbreaking and I know I'm just in the beginning stages of coming to terms with that. What kind of mom fails at being able to provide adequate nutrition for their own child?
Cale has been sedated more times than any adult will be in their entire lifetime. This surgery will just be another hashmark we can put in his records. I feel like I'm on such a roller coaster; either I'm feeling overwhelmed by God's goodness and His perfect provision for our lives, or I'm questioning His sovereignty and playing the timeless game of "why me". I wish I could believe and live out God's promises for me and trust that those same promises apply to Cale's life, but sometimes it's hard to believe God's goodness when our circumstances have been brought into our lives by God. Faith is impossible to perfect and I hate when I start doubting God's provision over our lives.
I hope to update again soon with a surgery date. Thank you again for all of the prayers. Even though God's goodness seems foggy to me at times, I want to believe that all of this will bring us out on a better side.
Friday, December 9, 2011
Ohio: day four
My Facebook post indicated that I would be writing this update yesterday, however the fatigue leading up to the end of this week has been setting in with a vengeance. As promised, here is the breakdown of yesterday...just a tad bit late.
The day started off much of the same. Alex stayed with Cale so my mom and I headed to the hospital bright and early.
As a side note I would just like to brag on myself for a moment if I could. The hospital is about a fifteen minute drive from our hotel and I am now able to navigate our way there without the use of Miss Garmin. Men are such great navigators but women often get the short end of the stick and I feel as though I've proven myself this week. Ha!
We arrived to find Alex a bit under the weather. I couldn't tell if he was tired from the lack of a good nights rest or if he was coming down with some sort of bug. Either way he didn't look very good and I could tell he felt it, too. We were very shortly taken downstairs to begin the first test of the day. This test was looking for how quickly Cale's stomach emptied a meal. Of all the tests Cale has been subject to this week this should have been the most easy. For whatever reason, though, Cale was terrified to lay down under the x-ray machine. Terrified may even be an understatement because his screams were so piercing that they hurt my ears. The techs strapped him down and he screamed during the entire three minutes he was required to lay there. Cale had to do this a total of three times throughout the day and even though he got a little more comfortable with each test his screams were still shrill.
After the first test Alex was feeling so bad that he decided to head back to the hotel to get some rest. I got a text from him when he reached the room informing me that he had made it back just in time to get sick. Great. My first thought was please don't let this stomach bug hit the rest of us and then I quickly prayed that Alex would get to feeling better very soon so that he could join us back at the hospital for the rest of the day. I hated that he didn't feel well but selfishly I needed him there, both for another set of hands to help with Cale and Cash and also for emotional support. I've found that the stress of being in a hospital can either wear down spouses to the point of anger, impatience, and bitterness towards each other, or it can bring them together and remind each other how thankful they are to be married. I'd like to think Alex and I fall into the latter category. I can't imagine doing this alone and I am so grateful that I have Alex to be my partner during such trying times.
Meanwhile, the sun was shining for the first time since we arrived in Columbus and so we decided to take advantage of it. With Alex back at the hotel my mom and I bundled up Cale and Cash and got ready to go for a walk. With Cale's IV pole, a stroller and a wagon, our crew made quite the display. The nurses outside of Cale's room raised some eyebrows but we were determined to get out of that hospital room no matter what! We charged right through and made it outside. It was quite a challenge to navigate all of us off curbs and across streets but we soon realized that the greater the challenge the more we had reason to laugh at ourselves. My mom and I spent the majority of our twenty minute walk giggling at how silly we must have looked. Cale enjoyed the sunshine, we got to breathe a little fresh air, and Cash slept through it all. I'd call that a success!
After returning to our room we hunkered down to wait for Cale's final scheduled test. This test was looking at the anatomy of his esophagus and stomach to make sure they were formed correctly. He was required to drink liquid barium while laying down underneath the x-ray machine and based on how he had done with the previous x-rays, we knew this test was not going to be easy. Like predicted, Cale started screaming as soon as he saw the machine. My mom stepped out of the room with Cash and the techs just looked at me while I tried to calm Cale down so that he could drink enough of the barium to get a good picture. In between Cale's screaming and my pleas, Alex magically appeared beside me and together we were able to talk Cale through the rest of the test.
Alex seemed to be feeling better after getting some rest and I immediately thanked the Lord for answering my prayer. We then spent the rest of the afternoon sitting impatiently around Cale's hospital room as we had been promised that the doctors were going to stop by to go over the results of all his tests. Around 4:30 the two doctors in charge of Cale's care entered our room. The lead doctor asked to sit down and she immediately started going over the results. She started off by telling us that Cale's motility is "normal" and I have to admit that I was immediately deflated upon hearing that word. She better have something better than that to report! But then she followed up with her findings of what's NOT normal! Here's what they found wrong in Cale's hurting body:
I will very quickly go over what we will do to fix all of the problems listed above. Cale will have surgery to repair the hernia. They will basically tie a rubber band around the top of his stomach to prevent any part of it from "ballooning" above his diaphragm again. He will then have a G-tube put in which is a direct line into his stomach. He will be "fed" through this tube while he recovers from surgery and we will decide later when and if to remove it. The doctor said that if it were her child she would have the surgery performed right away so as soon as Monday rolls around we will start making phone calls to get recommendations for the most qualified surgeons in our area. I can't even imagine a Cale free of pain. It will be like having a whole different child...a happier child! And if you know Cale and know how happy he already is, this will be like a happy Cale on steroids...I can't wait!!!
I will try and wrap up a final post about our trip later but this one is long enough and it's time for bed. Again, thank you to everyone who has been praying for us and especially for Cale. I've seen God at work through this entire trip and I've even been able to look back at the last four years and see how God has woven those into this last week, so thank you. A million times, THANK YOU!
The day started off much of the same. Alex stayed with Cale so my mom and I headed to the hospital bright and early.
As a side note I would just like to brag on myself for a moment if I could. The hospital is about a fifteen minute drive from our hotel and I am now able to navigate our way there without the use of Miss Garmin. Men are such great navigators but women often get the short end of the stick and I feel as though I've proven myself this week. Ha!
We arrived to find Alex a bit under the weather. I couldn't tell if he was tired from the lack of a good nights rest or if he was coming down with some sort of bug. Either way he didn't look very good and I could tell he felt it, too. We were very shortly taken downstairs to begin the first test of the day. This test was looking for how quickly Cale's stomach emptied a meal. Of all the tests Cale has been subject to this week this should have been the most easy. For whatever reason, though, Cale was terrified to lay down under the x-ray machine. Terrified may even be an understatement because his screams were so piercing that they hurt my ears. The techs strapped him down and he screamed during the entire three minutes he was required to lay there. Cale had to do this a total of three times throughout the day and even though he got a little more comfortable with each test his screams were still shrill.
After the first test Alex was feeling so bad that he decided to head back to the hotel to get some rest. I got a text from him when he reached the room informing me that he had made it back just in time to get sick. Great. My first thought was please don't let this stomach bug hit the rest of us and then I quickly prayed that Alex would get to feeling better very soon so that he could join us back at the hospital for the rest of the day. I hated that he didn't feel well but selfishly I needed him there, both for another set of hands to help with Cale and Cash and also for emotional support. I've found that the stress of being in a hospital can either wear down spouses to the point of anger, impatience, and bitterness towards each other, or it can bring them together and remind each other how thankful they are to be married. I'd like to think Alex and I fall into the latter category. I can't imagine doing this alone and I am so grateful that I have Alex to be my partner during such trying times.
Meanwhile, the sun was shining for the first time since we arrived in Columbus and so we decided to take advantage of it. With Alex back at the hotel my mom and I bundled up Cale and Cash and got ready to go for a walk. With Cale's IV pole, a stroller and a wagon, our crew made quite the display. The nurses outside of Cale's room raised some eyebrows but we were determined to get out of that hospital room no matter what! We charged right through and made it outside. It was quite a challenge to navigate all of us off curbs and across streets but we soon realized that the greater the challenge the more we had reason to laugh at ourselves. My mom and I spent the majority of our twenty minute walk giggling at how silly we must have looked. Cale enjoyed the sunshine, we got to breathe a little fresh air, and Cash slept through it all. I'd call that a success!
After returning to our room we hunkered down to wait for Cale's final scheduled test. This test was looking at the anatomy of his esophagus and stomach to make sure they were formed correctly. He was required to drink liquid barium while laying down underneath the x-ray machine and based on how he had done with the previous x-rays, we knew this test was not going to be easy. Like predicted, Cale started screaming as soon as he saw the machine. My mom stepped out of the room with Cash and the techs just looked at me while I tried to calm Cale down so that he could drink enough of the barium to get a good picture. In between Cale's screaming and my pleas, Alex magically appeared beside me and together we were able to talk Cale through the rest of the test.
Alex seemed to be feeling better after getting some rest and I immediately thanked the Lord for answering my prayer. We then spent the rest of the afternoon sitting impatiently around Cale's hospital room as we had been promised that the doctors were going to stop by to go over the results of all his tests. Around 4:30 the two doctors in charge of Cale's care entered our room. The lead doctor asked to sit down and she immediately started going over the results. She started off by telling us that Cale's motility is "normal" and I have to admit that I was immediately deflated upon hearing that word. She better have something better than that to report! But then she followed up with her findings of what's NOT normal! Here's what they found wrong in Cale's hurting body:
- During a 24 hour period Cale refluxed acid 240 times. A normal person should only reflux 10 times during that same amount of time.
- Cale has a severe hiatal hernia which basically means that part of his stomach is being squeezed above his diaphragm. Cale's hernia is so severe that over 1/3 of his stomach is basically sitting in his chest.
- The part of Cale's stomach that is sitting about his diaphragm is basically acting like a pool for the acid to sit in, which is why the antacid medicine he takes daily has not been effective.
I will very quickly go over what we will do to fix all of the problems listed above. Cale will have surgery to repair the hernia. They will basically tie a rubber band around the top of his stomach to prevent any part of it from "ballooning" above his diaphragm again. He will then have a G-tube put in which is a direct line into his stomach. He will be "fed" through this tube while he recovers from surgery and we will decide later when and if to remove it. The doctor said that if it were her child she would have the surgery performed right away so as soon as Monday rolls around we will start making phone calls to get recommendations for the most qualified surgeons in our area. I can't even imagine a Cale free of pain. It will be like having a whole different child...a happier child! And if you know Cale and know how happy he already is, this will be like a happy Cale on steroids...I can't wait!!!
I will try and wrap up a final post about our trip later but this one is long enough and it's time for bed. Again, thank you to everyone who has been praying for us and especially for Cale. I've seen God at work through this entire trip and I've even been able to look back at the last four years and see how God has woven those into this last week, so thank you. A million times, THANK YOU!
Wednesday, December 7, 2011
ohio: day two and three
I knew I should have just posted a quick update yesterday evening but I allowed myself the excuse of being too tired and now I don't know which events happened yesterday and which events happened today; each day has now morphed into one. So I will just do the best I can of getting everyone up to speed.
We finished the first test yesterday afternoon which meant the tube was removed from Cale's nose and his "constant" was relieved of her duties. I feel for the people that had to spend 24/7 in the presence of Alex, my mom, and myself. Cale seemed to throughly enjoy his freedom from all the tubes and wires, taking every opportunity to dash towards the nearest nurse's computer. He may have the entire hospital reprogrammed by the time comes for us to be discharged. His freedom didn't last long, however, and he was started on an IV around 8:00 pm. The nurse who poked him was phenomenal and got it on the first try with little crying from Cale. He was much stronger with this IV than he has been in the past. He got tucked into bed shortly after that and Alex and I headed back to the hotel with Cash while my mom stayed the night with Cale.
This morning we woke up bright and early and headed back to the hospital around 6:45. Cale was scheduled to be taken downstairs at 7:00 to be sedated and prepped for today's test. Let me just say now that I am so very thankful that I wasn't fully aware of exactly how today would go, otherwise I would have lost hours of good sleep worrying about it. The team of doctors in charge of his sedation were great - very caring, informative, and empathetic. They allowed us to stay by his bedside while they put him to sleep, which is something I hate to do but also couldn't allow myself not to do. I've watched Cale be put to sleep a number of times and each time it's been hard on me. I always cry but as soon as we've spent a few minutes in the waiting room I am able to pull it together. Today I watched the doctor push the medicine through his IV and I anticipated much of what I have seen in the past. This time, however, was different. Cale's eyes fluttered back into his head and he started gulping for air. His back started to arch in rhythmic motions and I immediately became completely and utterly terrified to my core. I didn't know if he was having a seizure or experiencing complications from the medicines but regardless it was one of the scariest moments I can recall from our medical journeys with Cale. The doctor saw the panic in my face and quickly assured me Cale was simply fighting going to sleep. The terror stayed with me, though, and I broke down after we were escorted into the waiting room. I don't remember a time of ever being that scared.
Once Cale woke up he was required to remain still for eight hours while a tube about the diameter of a straw went through his nose and down into his small intestine, measuring the pressures and contractions of his esophagus, stomach, and small intestine. Keeping a five year old still for eight hours is downright near impossible. We watched a lot of movies, played with a lot of electronics, and did our best to stay positive. Of everything we've ever had to do with Cale this was by the far the hardest thing to date. Cale was terrified and it was very difficult to try and explain everything that was going on. At one point during the test the doctors administered a drug through his IV to bring on contractions in his stomach and small intestine. This caused Cale immediate, unbearable pain. He started to throw up and finally within about an hour he seemed to be relieved of most of his discomfort. He was then allowed to eat his first meal of the day which was at about 4:00. As per usual he was in pain after this and as if on cue he projectile vomited right in front of the doctor. Even though vomiting is what we don't want to have happen it was God's doing that he did it in the presence of his doctor. This got her attention and I just know we are on the right path to finding a cause for all of this. Cale has won the hearts of everyone he comes in contact with and we have so many advocates on our side. I feel as though they won't let us leave until they are able to help Cale; it's as if they have all declared this their personal mission. I love it!
Cale's attitude through all of this has been amazing. He was downright miserable today. He has endured a great amount of pain, remained patient while being confined to a hospital room and forbidden to move for eight hours, given us all grace when we lose our patience, and even lifted our spirits when we get down. I feel somewhat of a failure because he is the one keeping me strong. As the parent aren't I supposed to be his strength? He's such an amazing little man and his light shines bright. It's so easy to become depressed in this environment. There are sick children everywhere and families walk around with tears in their eyes and faces marked with exhaustion. This hospital is not a happy place and it's hard to remain positive. There's something about the way Cale can be subject to such misery and yet come out on the other side with a joy that is inexplicable. I'm so very proud of him.
Tomorrow will be another long day with two different tests scheduled. They will be a piece of cake compared to today but I imagine Cale will have lost the desire to remain strong. We are all ready for this week to be over.
I cannot thank everyone enough for all of the prayers and words of encouragement we have received over the last few days. Each comment, e-mail, text, message, and phone call have lifted our spirits in ways I can't even describe. I am so grateful for the love and support of our family and friends and I hope I am able to repay your kindness someday. Thank you, thank you, thank you!
Until tomorrow...
We finished the first test yesterday afternoon which meant the tube was removed from Cale's nose and his "constant" was relieved of her duties. I feel for the people that had to spend 24/7 in the presence of Alex, my mom, and myself. Cale seemed to throughly enjoy his freedom from all the tubes and wires, taking every opportunity to dash towards the nearest nurse's computer. He may have the entire hospital reprogrammed by the time comes for us to be discharged. His freedom didn't last long, however, and he was started on an IV around 8:00 pm. The nurse who poked him was phenomenal and got it on the first try with little crying from Cale. He was much stronger with this IV than he has been in the past. He got tucked into bed shortly after that and Alex and I headed back to the hotel with Cash while my mom stayed the night with Cale.
This morning we woke up bright and early and headed back to the hospital around 6:45. Cale was scheduled to be taken downstairs at 7:00 to be sedated and prepped for today's test. Let me just say now that I am so very thankful that I wasn't fully aware of exactly how today would go, otherwise I would have lost hours of good sleep worrying about it. The team of doctors in charge of his sedation were great - very caring, informative, and empathetic. They allowed us to stay by his bedside while they put him to sleep, which is something I hate to do but also couldn't allow myself not to do. I've watched Cale be put to sleep a number of times and each time it's been hard on me. I always cry but as soon as we've spent a few minutes in the waiting room I am able to pull it together. Today I watched the doctor push the medicine through his IV and I anticipated much of what I have seen in the past. This time, however, was different. Cale's eyes fluttered back into his head and he started gulping for air. His back started to arch in rhythmic motions and I immediately became completely and utterly terrified to my core. I didn't know if he was having a seizure or experiencing complications from the medicines but regardless it was one of the scariest moments I can recall from our medical journeys with Cale. The doctor saw the panic in my face and quickly assured me Cale was simply fighting going to sleep. The terror stayed with me, though, and I broke down after we were escorted into the waiting room. I don't remember a time of ever being that scared.
Once Cale woke up he was required to remain still for eight hours while a tube about the diameter of a straw went through his nose and down into his small intestine, measuring the pressures and contractions of his esophagus, stomach, and small intestine. Keeping a five year old still for eight hours is downright near impossible. We watched a lot of movies, played with a lot of electronics, and did our best to stay positive. Of everything we've ever had to do with Cale this was by the far the hardest thing to date. Cale was terrified and it was very difficult to try and explain everything that was going on. At one point during the test the doctors administered a drug through his IV to bring on contractions in his stomach and small intestine. This caused Cale immediate, unbearable pain. He started to throw up and finally within about an hour he seemed to be relieved of most of his discomfort. He was then allowed to eat his first meal of the day which was at about 4:00. As per usual he was in pain after this and as if on cue he projectile vomited right in front of the doctor. Even though vomiting is what we don't want to have happen it was God's doing that he did it in the presence of his doctor. This got her attention and I just know we are on the right path to finding a cause for all of this. Cale has won the hearts of everyone he comes in contact with and we have so many advocates on our side. I feel as though they won't let us leave until they are able to help Cale; it's as if they have all declared this their personal mission. I love it!
Cale's attitude through all of this has been amazing. He was downright miserable today. He has endured a great amount of pain, remained patient while being confined to a hospital room and forbidden to move for eight hours, given us all grace when we lose our patience, and even lifted our spirits when we get down. I feel somewhat of a failure because he is the one keeping me strong. As the parent aren't I supposed to be his strength? He's such an amazing little man and his light shines bright. It's so easy to become depressed in this environment. There are sick children everywhere and families walk around with tears in their eyes and faces marked with exhaustion. This hospital is not a happy place and it's hard to remain positive. There's something about the way Cale can be subject to such misery and yet come out on the other side with a joy that is inexplicable. I'm so very proud of him.
Tomorrow will be another long day with two different tests scheduled. They will be a piece of cake compared to today but I imagine Cale will have lost the desire to remain strong. We are all ready for this week to be over.
I cannot thank everyone enough for all of the prayers and words of encouragement we have received over the last few days. Each comment, e-mail, text, message, and phone call have lifted our spirits in ways I can't even describe. I am so grateful for the love and support of our family and friends and I hope I am able to repay your kindness someday. Thank you, thank you, thank you!
Until tomorrow...
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