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.
Wednesday, December 14, 2011
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...
Monday, December 5, 2011
ohio: day one
If there's one thing that I'm consistently reminded of in our journey with Cale is that there is always a child who is suffering more and a family who is hurting greater. As we've been walking the halls of the hospital we get a brief peek into what other families are having to deal with and it helps put the personal hardships of our journey into perspective. One child's room was decorated with lights and even had a Christmas tree, indicating that she had been there for quite some time and would most likely be there through Christmas. It makes our week long stay seem petty.
However with that said, today was no easy feat. We checked in this morning and were admitted into his hospital room. We met with one of the primary doctors that will be in charge of Cale's care and then he was taken to have an impedance probe inserted through his nose. This process was incredibly scary and uncomfortable for Cale and to be honest I had to look away as I held his head to keep him from moving. No matter how simple the procedure, the emotion of seeing your child in pain and in fear is always extremely difficult as a parent. His constant stream of tears made it challenging to tape the tube to his cheek. I hate seeing tears of fear.
The rest of our day was spent walking the halls, watching Max and Ruby, playing on his iPad, and typing on the computer. He was very despondent for much of the day and finally cracked a smile when he found a string of fiberoptic lights hanging from the ceiling of one of the play rooms. I anticipate spending much of our day tomorrow playing with these lights. I have no idea what draws him to these so much but I was thankful they brought on a smile and even a few laughs. Our Cale is one strong boy and I am constantly amazed by the bravery and poise he shows amidst the most difficult of circumstances.
The highlight of our day came late in the evening when we got to Skype with Riley. Seeing her and hearing her voice brought on the biggest smile we'd seen on Cale all day. Riley immediately noticed the tube in Cale's nose and asked him what it was for. Without waiting for us to respond she quickly asked if it was helping his tummy to feel better. Her words to Cale brought tears to all of our eyes! At only three years old she is one of the most compassionate people I know. Cale ended our Skype session by telling Riley that he loved her. :)
Now that today is over I am feeling even more confident that we are at the right place in the right hands. I'm hopeful and encouraged that these tests are going to reveal part of, if not all, the reasons Cale is in so much pain. The biggest encouragement so far has been the "constant" that is assigned to him. A "constant" is a nurse that is required to be with Cale 24/7. She monitors his every move; whether he is sitting or laying down, eating, coughing, gagging...anything! She will even sit at his bedside the entire night while he sleeps, which is a little awkward for Alex who is spending the night with Cale in the hospital. :) Apparently siblings are not allowed to stay the night which immediately made me unable to be with Cale. Alex and my mom will take turns spending the night.
Thank you for praying for Cale and our family. We feel every prayer and are so encouraged by the amount of love and support we have been given. More to come tomorrow!
However with that said, today was no easy feat. We checked in this morning and were admitted into his hospital room. We met with one of the primary doctors that will be in charge of Cale's care and then he was taken to have an impedance probe inserted through his nose. This process was incredibly scary and uncomfortable for Cale and to be honest I had to look away as I held his head to keep him from moving. No matter how simple the procedure, the emotion of seeing your child in pain and in fear is always extremely difficult as a parent. His constant stream of tears made it challenging to tape the tube to his cheek. I hate seeing tears of fear.
The rest of our day was spent walking the halls, watching Max and Ruby, playing on his iPad, and typing on the computer. He was very despondent for much of the day and finally cracked a smile when he found a string of fiberoptic lights hanging from the ceiling of one of the play rooms. I anticipate spending much of our day tomorrow playing with these lights. I have no idea what draws him to these so much but I was thankful they brought on a smile and even a few laughs. Our Cale is one strong boy and I am constantly amazed by the bravery and poise he shows amidst the most difficult of circumstances.
The highlight of our day came late in the evening when we got to Skype with Riley. Seeing her and hearing her voice brought on the biggest smile we'd seen on Cale all day. Riley immediately noticed the tube in Cale's nose and asked him what it was for. Without waiting for us to respond she quickly asked if it was helping his tummy to feel better. Her words to Cale brought tears to all of our eyes! At only three years old she is one of the most compassionate people I know. Cale ended our Skype session by telling Riley that he loved her. :)
Now that today is over I am feeling even more confident that we are at the right place in the right hands. I'm hopeful and encouraged that these tests are going to reveal part of, if not all, the reasons Cale is in so much pain. The biggest encouragement so far has been the "constant" that is assigned to him. A "constant" is a nurse that is required to be with Cale 24/7. She monitors his every move; whether he is sitting or laying down, eating, coughing, gagging...anything! She will even sit at his bedside the entire night while he sleeps, which is a little awkward for Alex who is spending the night with Cale in the hospital. :) Apparently siblings are not allowed to stay the night which immediately made me unable to be with Cale. Alex and my mom will take turns spending the night.
Thank you for praying for Cale and our family. We feel every prayer and are so encouraged by the amount of love and support we have been given. More to come tomorrow!
ohio: travel day
We rolled out of our driveway ten minutes later than planned and with three inches of fresh fallen snow the drive to the airport took a little bit longer than we had anticipated. Still, though, we got to the airport at a reasonable time and were pleased to see that the line at the checkin counter was only a few people deep. As we fumbled with luggage, car seats, strollers, and all the other crap that goes along with traveling with small children, we hear the guy at the checkin counter announce that the flight to Minneapolis - OUR FLIGHT - had been closed and that the gate was being shut. WHAT???!!! We still had at least half an hour before it was scheduled to leave! Thankfully, the employee had the departure time wrong and thought the plane left at 5:30 and not 5:50 like scheduled. Still, though, with all the chaos and confusion time was quickly slipping away and he was starting to tell people that if you had not yet checked in you would have to rebook the flight to Minneapolis. Thankfully Alex and I had just electronically checked in and held the tickets in our hands. We finally made it through that mess but literally had to RUN through security (or at least as best you can run through security) and after throwing shoes on the wrong feet, forgetting belts, and letting Cash's head bob crazily on my shoulder as we dashed to our gate, we finally made it on our flight, but not without the pleasure of receiving guilty stares as we obviously were the last people to board the plane...with two small children. I'm sure everyone just loved us.
Our flight to Minneapolis was nice and smooth and it was beautiful being able to watch the sunrise. Cash did okay on the plane, crying a few times until he finally allowed himself to fall asleep. My mom met us at our gate and we all got on the plane to Columbus, OH. That flight was also smooth and Cash behaved much of the same. Cale of course loved every minute of the flights and was a little sad when it was time to get our rental car. With the exception of nearly missing our flight it was a good travel day.
Once we got settled in our hotel we ran to the grocery store and looked for the nearest Starbucks. The latter of these two is by far the most important. :) We made dinner in our hotel room and took Cale swimming, something that he greatly enjoys and certainly deserved before the start of this week. Overall I think I would say our spirits are high and we are all incredibly hopeful that we are in the right spot seeing the right doctors. I think it's safe to say we are excited for the hope of finding answers.
I must admit, on the morning of Cale's first test I am mostly calm, which is pleasantly surprising. I know things will most likely change once Cale is admitted and the painful process of explaining to a thousand people why we are here begins, but for now I am certainly enjoying the calm.
I know without a shadow of a doubt that this calm comes from everyone who has been praying for us. I am so thankful for such an amazing support system. From those of you who have been there and done this to those of you that simply loves us and our little boy, thank you! It means so much to Alex and me to know that you're sharing with us on our journey.
We check in the hospital at 10:00 ET and Cale's first test begins today. It's a 24 hour test in which a tube is placed through his nose and down into his stomach. I'm not entirely sure what exactly this test is looking for but I will hopefully be able to update more tonight.
Thank you again for your continued prayers! If you want specific things to pray for here are a few things I know we'd appreciate:
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