“If our view is limited to mortal life, some things become unbearable because they seem so unfair and so permanent. “ –Boyd K. Packer
As you might be able to imagine, getting to this point in the process, waiting for more test results to come in, after all Kal had been through, is exhausting. Luckily, I have the Gospel of Jesus Christ in my life. It has brought me so much strength. Also, through this experience, I have been blessed to talk with many people who have gone through medical trials as well. People that before, I was not having normal, daily conversations with before, have approached me and opened up about what they have endured before, or currently. These people have lifted me up more times than I can even put into words. May God bless those individuals for opening up their hearts to me and my family! I know talking about what medical issues they, their family member, their friend, etc. have endured or are enduring brings back a lot of memories and strong emotions. I know that because that's what updating this blog has done for me. There are days that I just feel sick to my stomach after writing a blog post, because it brought back everything of those moments I was writing about.
In order for me to help others to understand how it
feels like to be in this situation, and allow others who are going or have gone
through similar situations know their feelings are valid, I want to be
pretty candid with how my opinions and feelings were/are in these
moments.
I've gone back, and included some of my thoughts shared with the aforementioned people, so you will know what was really going through my head in those times:
"In the moment it feels like this will never end. I
never get my hopes up anymore that the tests will come back with
anything conclusive. That way, I won't set myself up for disappointment.
The doctors had some guesses, but those tests came back negative.
Thankfully, it's not lupus or rheumatoid arthritis. ... Other than that, we are still waiting. I heard them discuss amongst
themselves (the 2 Rheumatologists and 1 Immunologist) about the
possibility to talk to the GI specialist."
"I guess the wondering used to bug me a lot more than
it does now. I guess I'm just waiting to be surprised that they finally
figured it out."
In the beginning of May, we finally got a call from his Immunologist. The test results were the same as the first results that came in, which meant they were almost positive Kal has Chronic Granulomatous Disease. This news was crushing, yet we couldn't help but count our blessings.
In the words of my sweet husband's post on Facebook, after we found out:
"To all of our friends who prayed for my family, wished us well, and prayed for our baby Kal's recovery, in a way your prayers were answered. It is not the best answer we were hoping for but I feel like all of you guys should know the answers we received from your prayers. I wanted to share this experience to let you know that our Heavenly Father hears and answers our prayers. This is the chronological order of the answers that my family received all in one day. Yesterday morning, my boss at my new job all of a sudden came in my office and shut the door. I thought I did something wrong. He then told me that he got an approval that I will be given a raise. I knew that this was an answer to our prayers because I have only been working in my new job for 5 months but he gave me a five-digit increase in pay. I cried in front of my boss because we really need it. Then when I got home from work, my wife was on the phone with the doctor to find out that our son Kal has signs of an incurable disease called Chronic Granulomatous Disease. To summarized it, our baby's immune system has malfunctioned and that he will always be sick for his entire life. His body will not have the ability to fight sickness. Starting last night, Kal has to be in Antibiotics for the rest of his life. God may have not given us what we wanted, to heal our son, but he blessed me and my family with the an extra means to maintain the drugs that my son needs to survive. It will be a struggle and challenge everyday, but I know that we will make it. It is heart breaking to hear that our baby will be sick for his entire life. My wife has been really strong and caring. I love her so much for doing everything to take care of our kids. I thank you all for your prayers. May our good Lord bless you for taking a time in your day to pray for us even just once. —
feeling blessed"
The fact that he has this life-long disease made it hard to bear. I tried to keep positive thoughts, but in some moments, I coudn't help but think, "Why does this sweet little baby have to have this disease? Couldn't it be something else- something that could be easily fixed, and then easily forgotten?"
My conversation with of my friends at that moment:
Her- "Just saw that the Dr gave you a diagnosis. How are you guys taking it, holding up?"
Me- "Uhm, it's hard. I'm not going to lie or try to act
like I'm just fine. I'm just trying to soak it all in and all the
emotions..."
Her answer was simply perfect, and exactly what I needed to hear in that moment:
"I'm glad you are allowing yourself to feel. Mourn if
you need to. Life long diagnoses are some of the hardest to hear. ... I hope the Dr. can help you guys adjust to your new normal.
Modern medicine can bring about many of God's miracles. We'll keep
praying for you guys!"
At that time, Kal was also having issues with a new rash/skin lesions growing on his face and legs, into big, hard spots. He was also throwing up his medicine whenever we gave it to him, which was twice a day. Also, he had a persistent yeast diaper rash and mouth sores. In addition, Kal had come down with some sort of congestion and cough. The night before we received that call, we had to go to the InstaCare, and then the Emergency Room at Primary Children's, because he had a fever of 102 and was occasionally having difficulty breathing while coughing. He had also not been gaining any weight in his previous, recent appointments, which made the specialists more concerned for his well-being.
With all of that going on, his Immunologist thought it would be best to admit him into Primary Children's Hospital to try and get everything under control. Throughout the hospital stay, even though we were there for 4 days, it was absolutely exhausting. I don't even know how parents keep sane and have the energy during extended hospital stays. Specialists were coming in and out of our room so much that at one point, there was actually a line of doctors and doctor conferences amongst different specialists outside of Kal's hospital room door.
Despite it all, Kal was still so cute with his sweet smile. He kept the specialists and nurses melting in cuteness whenever they would check in on him.
 |
| "All smiles and curiosity with his IV line, despite all the pokes. This kid is the sweetest, even during hospital stays. What a charmer!" |
Jonald: "Day 2 in the hospital. After lots of blood,
skin and genetic tests done today, Kal had to be put to sleep as they
did colonoscopy and endoscopy then a tube to his nose for feeding and
drugs. The doctor suggested to think about considering a bone marrow
transplant. He's been a trooper though! Showing his mom and dad the
definition of being tough and strong. Please continue to pray for our
child. Thanks!"
Handing off my son to the nurse, even though it was to have a simple endoscopy, colonoscopy, and feeding tube put in, was almost too much to bear. With everything else going on, in that moment, everything snowballed down the hill and fell on my chest. I wanted to hold my baby close and protect him from any more pain and illnesses. But, in the back of my head, I knew it was all those doctors and nurses who were the ones that could help my son best. I had done all I could as his mama, and they needed to do their part to help my son. After he had his procedures done and had his feeding tube put in, Jonald and I went to the surgery recovery room for when he woke up. He was so irritated with the feeding tube. He kept coughing and gagging. I literally had to lean against the wall while first looking at him with his feeding tube. I just felt so lightheaded and sick to my stomach. I wrote to my friend: "I am
feeling really nauseous at this point. I don't feel hungry most of the
time for that reason, but I knew I needed nourishment to feed Kal, so I
ate anyway."
After that, it was just a waiting game to see if his inflammatory counts would go down, as well as if his other symptoms subsided, especially his cough. We were able to go home the next day, and boy were we glad to be home! It was such a relief to sleep in our own bed again, and not have nurses and doctors coming in all the time, even throughout the night.
As good as it felt to be home, the weight began to be very heavy on our shoulders to make a decision for Kal, concerning if we wanted him to continue with his maintenance medicine his whole life or to opt for a bone marrow transplant sometime. We knew we were kind of juggling with time before he would have a serious infection and put him back in the hospital again. If he would have a serious infection, it would increase the risks of a bone marrow transplant. We began to pray earnestly to be guided in our decision, and for peace in whatever decision we would decide to make.
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