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.
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