Hiccups, they are basically harmless but rather annoying none the less.
A few days ago Kiah developed a rash along with a fever that after being discharged to the Ronald McDonald House hiccuped us right back into the hospital. After cultures were taken and an X-ray was done they determined that he may have a slight pneumonia. As for the rash they are unsure but it may be an early sign of GVHD (graft-verses-host disease- common complication after transplant). It's too soon to tell but in the meantime we've been trying to rule out other possible causes (new laundry detergent etc.)
The good news is that he is relatively stable breathing wise and doesn't seem to be getting worse. His main discomfort comes from the rash. It is making it difficult for him to sleep (by difficult, I mean not at all). He spent all of last night scratching and asking for cream. We started a new steroid today hopefully this one works.
Right now I'm holding my breath (hiccups and all), hoping that he starts to get better soon. The thing about hiccups is that though they are often harmless… they sometimes lead to heartburn.
Oh and meet Bodie…
Kiah and Bodie have a lot in common, you know. I put him together with some sewing help from Auntie. Kiah named his new little friend after another new little friend born around the same time our Bodie was fluffed and stuffed. Truthfully it was love at first sight. When he first saw the lil guy Kiah gasped "Bodie have tubes too… Wow!". He's been quite the companion ever since…
Today was a good day, a cherry on top day, an icing on the cake day… Today we added stinky shoes to our make-believe soup. Today we said "thank you" for things big and small to everyone we came in contact with including all of the cleaning staff. Today we drummed to the beat of silly songs. Today we shot imaginary hoops in the hallway with the nurses and cheered loudly. Today with butter in the trunk we sat excitedly in a red fisher price car waiting for Daddy. Today we labelled sprinkles on top of our ice-cream sundae as sesame street characters. Today we pretended not to cringe at the rodents brought to the Ronald McDonald house to visit the children (okay that one was just me). Today we watched a video of the two of us giggling and giggled just as hard. Today we karate chopped our Monkeys right off of the bed. Today followed many good days in the last week. Our boy continues to push through any adversity that stands in his way. We are amazed by his courage and in awe of his spirit.
Kiah's cell count is climbing already which is the reason he's feeling so much better. His counts started to come in on day twelve which is on the early side considering that typically engraftment takes place between day ten and day forty-five (and on the later end for cord blood over bone marrow). The doctors are hopeful but also preparing us for the possibility that these could be Kiah's own cells coming back and the transplant could have failed. On Monday they took an extra blood sample which will determine how much of the cells in his body are the old cells and how much are the new. This test will take a week or two before we receive the results. So now we wait, once again.
In the meantime though we are beginning to get ready for discharge. Starting with an afternoon pass today. Kiah was able to leave the hospital to come to the Ronald McDonald house for a few hours and soon we'll be staying there all together as a family. He will then be an outpatient and return to the hospital for a few hours a few days a week. Though we will be unable to return home to Edmonton until after the one hundred day mark, this transition is a great first step for us. And even though we are not out of the woods we are comforted by our sweet boys resilience.
Today was a very good day, and tomorrow will be more of the same.
Ps. On the hair front, we shaved those wispy strands and now completely bald, Kiah is quite proud to share the same haircut with "Daddy and Giko (gido) and Uncle Sean and Kiah too" (and the other children on the oncology unit).
So the other shoe dropped… really it was dragged through the dirt and then kicked through the mud and then plummeted into a pit, never to be seen again (at least not seen for awhile). Basically the shit hit the fan…
The last few days have been more difficult. Kiah developed a fever along with an ear infection and Mucositis (sores in his mouth and GI tract- common side effect of chemotherapy). He is on Morphine and Ketamine to help with pain and after a few days of figuring out doses he seems to be much more comfortable.
Thankfully today we've gotten more and more glimpses of that fallen shoe. First through shy smiles and moments of familiarity. Short conversations through horse voices and strained laughter. And later even more so as he giggled with the nurses, clapped to the tune of a band playing in the hallway outside his room and even shot a few hoops with Daddy before bedtime. My sweet boy is back for the moment… Momma just needs to take it one day at a time and lace her shoes tightly.
Ps. On a side note… I've been using a lint roller for the curls strewn about his pillow and it's been hard to keep up. We were curious as to when he would start to lose his hair and how quickly it would go. It started on Sunday and by Monday evening after bath time he was left with a few wispy strands all over. I personally think it adds to his charm, my little old soul now has a little old haircut.
don't let the pictures fool you… this sweetness was captured before and after shit (i mean) shoe hit the fan ;)
