Day +13: Miracles Happen

"Count Your Blessings"

 

When upon life's billows you are tempest-tossed,
When you are discouraged, thinking all is lost,
Count your many blessings; name them one by one,
And it will surprise you what the Lord has done.

(Chorus)
Count your blessings;
Name them one by one.
Count your blessings;
See what God hath done.
Count your blessings;
Name them one by one.
Count your many blessings;
See what God hath done.
 

Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings; ev'ry doubt will fly,
And you will be singing as the days go by.
 

When you look at others with their lands and gold,
Think that Christ has promised you his wealth untold.
Count your many blessings; money cannot buy
Your reward in heaven nor your home on high.
 

So amid the conflict, whether great or small,
Do not be discouraged; God is over all.
Count your many blessings; angels will attend,
Help and comfort give you to your journey's end.

Text: Johnson Oatman, Jr., 1856-1922
Music: Edwin O. Excell, 1851-1921

This song above, "Count Your Blessings," has been running through my mind all day, and there are many good reasons why! Although today still had it's difficult aspects, I am in awe of God's mercy and love towards me, Kal, and my family. You'll definitely know why by the end of reading this post, and hopefully be merrily humming along the tune of this song too. (;

Well, my goodness, today has been a whirlwind! Phew! I guess I'll start from the beginning...

Last night was pretty rocky. I am beyond exhausted. (Oh, and by the way, since I left you guys on a cliffhanger from my Facebook post, I felt compelled to update you all tonight and not wait until the morning, despite my exhaustion. I'm currently eating yummy, yet zingy salt and vinegar chips so I can stay awake to finish this post. Mhmm, you're welcome.)

After Kal's congestion, low oxygen levels, and pulling out dead tissue with the suction incidence around midnight, his mouth was actively bleeding through that whole ordeal. We were concerned about his platelet levels. The nurse then ordered a platelet transfusion and did that around 2 a.m. without a hitch.

Around 3:45 a.m. or so, though, Kal's oxygen levels kept dropping and rising back up again. The alarm kept going off like crazy. The nurse and I decided it might help if she tried to suction a little bit of mucous out to help him. She went in his mouth and inner cheeks this time, and after a little while, ended up pulling out about a 2-inch long piece of tissue. Sick-nasty, for real.

After that, I swaddled him and then cuddled with him in the rocking chair for a little while. Kal kept having issues with his breathing still, though. He would either be breathing rapidly or kind of be breathing in twice and then breathing out once. It concerned me, so the nurse decided to put on an oxygen tube that goes to his nose to make sure he was getting more direct oxygen. Even after that, though, his breathing kept being odd and his oxygen levels kept dipping down (once getting down to about 79%). The nurse also began to be concerned, so she asked the charge nurse to check Kal out. Then, the charge nurse was a little concerned, so he called someone from the Respiratory Team to come over and evaluate him. I was told they may decide to have that team suction the out down the throat if it was bad enough. Uh-oh. Although I had been very concerned about his breathing earlier, I know what it means to call up the on-call respiratory specialist at that hour of the morning. After the nurse informed me the respiratory specialist was on his way and then left the room, I couldn't help but get down on my knees and pray a quick prayer, my plea to God: "Please help my son breathe. Please bless him that he will be all right. Thy will be done, though. He is yours, and I leave him in your hands. Please give me peace at this time."
 

His new accessory!

Soon after, the respiratory specialist came in to examine him. As soon as he came in the door, Kal started to breathe much better, and his oxygen levels were back at an acceptable range. He still sounded kind of gurgly, but he was breathing well enough that the respiratory therapist said he was breathing great. It is so amazing that in that short amount of time, Kal's breathing issues had subsided significantly. That was truly a miracle to me!

A little while later, his breathing would occasionally act up again. It set off the alarm again. I stood up, and stayed next to his crib to try and get him breathing better. I was so shaken up from earlier that I was on edge about his breathing. I wanted to stand by his crib and watch him breathe all night, with my hand resting on his chest, just to be sure everything would be okay. I mean, what if he had some issue breathing or was choking on mucous while I slept? I just didn't want me to miss something and not be able to help him because I was asleep. Eventually, my exhaustion won and took over, so I headed back to bed, immediately falling asleep.

In the morning, the nurse tried giving him a break from the oxygen, but Kal's oxygen levels kept dipping down again. At first, they tried using the oxygen funnel again, but it wasn't doing the trick. They had to put the oxygen tube to his nose again to help keep everything at a good llevel. Seriously guys, though, he is so adorable with it. With his swollen, scrunched up face, him balding, and that little tube, he looked like a little old man! Oh the cuteness!

Using the oxygen funnel to raise his oxygen levels.

Wearing his little nose oxygen tube, thing. How cute, right?!

During the day, the nurse and I also discovered and discussed some other odd things going on. Because Kal had such a rough night and was needing extra doses of morphine, she decided to up the dose on it to help keep the pain at bay. Also, his mouth sores are still pretty gnarly and I can see exactly where they were bleeding last night. In addition, I noticed some pus coming from Kal's ear this afternoon. That means that his eardrum must have ruptured. Luckily, he's been on antibiotics for a good while, so whatever pus there is in his ear is sterile already. They will still be monitoring it for signs of infection, though. Also, Kal is still having issues with not peeing enough fluid off with his diuretic. They switched it over to a different kind, but it is still not having as good of an effect as we'd like. Furthermore, Kal's blood pressure was pretty high today. They will keep monitoring it to ensure it is not being caused by his medicine.

So, now that you've gone through and read all the crazy stuff that's been going on today, how about some good news?! Well, we found out today that KAL HAS ENGRAFTED! Woot woot! Before, they had told us that his neutrophil count needed to be 500 consistently for 2 days to be sure he has engrafted. But, since Kal's neutrophil count jumped from 200 yesterday to being 600 today, they said he will just continue to increase in his counts, and they are counting it that he has officially engrafted today! Ahhh! I'm so excited and happy right now!

So, about what's next: before Kal is allowed to go home (typically a process of about a week or so), he needs to accomplish some things. He needs to eventually wean off of his pain medicine. He needs to take all of his medicines by mouth, instead of IV like he's been taking them lately, His mouth sores need to be healing/healed. He needs to have no sign of fever and be free from any graft-vs-host symptoms. They would like it if he starts eating something again, but is not necessary, as he will most likely be sent home on TPN and lipids anyway to keep his calorie count up. Also, his swelling needs to subside. Those are some of the basic requirements. If these are not met in a timely manner, the longer he will have to stay in the hospital before he is discharged.

Tonight's sunset was a perfect outlook on Kal's near future. Amidst the rain and lightning of the storm, the sun popped out of the clouds long enough to allow me to watch it set. There may be complications that may be going on and need to heal now, but there is a bright future that just popped over the horizon!

As you read earlier about the complications still going on with Kal, just because he has engrafted doesn't mean that he's instantly feeling better. He should start to turn a corner towards feeling better in the next couple of days, though! There is still a long road ahead, especially the next 9 months to a year or so, because his immune system will still be building itself up during that time.

So, I just need to point this out, though. As I mentioned before, with Kal getting stem cells from umbilical cord blood, we were told the average time to engraft would be between days 20-30 post-transplant. Kal, on the other hand, has officially engrafted on Day 13. That's a whole WEEK before the earliest average day for similar patients to engraft. Not a single person placed a guess on Kal's Engraftment Calendar that Kal would engraft this early. No one expected this to happen so fast. That is simply incdredible!!!

According to the doctors: Yes, he is a baby, so it was possible for him to engraft earlier because of his smaller body requiring less time to build up his cells again. Yes, his donor's cord blood was a perfect, 10/10 match for him and it had a high number of stem cells in that unit. Yes, he received placental stem cells, which could have potentially sped up his engraftment process. These were all of the doctor's explanations as to why Kal has engrafted so early- he had everything going right for him to set him up for early engraftment. As for me, I see it as many miracles adding up to this wonderful miracle of early engraftment. There's no doubt in my mind that miracles happen, and I am certain that I witnessed two of them today!