There are moments/years in life that truly help shape and define you. I think I will always hold 2012 near and dear to my heart because it added to the army of angels surrounding our son and he continues to live better each day. And all I have to say to 2013 is....BRING IT.
Here we are at the close of another year, I can't believe how quickly time flies the older I get and how time can stand still simultaneously when someone you love is battling an illness. This past year we spent two whole months at home (February & September). All the other months we had at least one hospital stay at our time share in San Diego. If Kelptyn was not in the hospital then he had 1 to 3 doctor's appointments each week. We've had moments as a family that have brought us to our knees and moments that had us filled with joy. A roller coaster ride, indeed, 2012 has been. However, we end the year on a high because Kelptyn has now rebounded from his 11th surgical procedure (which was the worst one of all, seriously, worse than both his BMTs) and his bones from an Xray view point appear to be remodeling despite having donor cell counts jump all over the place per chimerism reports.
There are moments/years in life that truly help shape and define you. I think I will always hold 2012 near and dear to my heart because it added to the army of angels surrounding our son and he continues to live better each day. And all I have to say to 2013 is....BRING IT.
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Today, we celebrate Kelptyn's 1st "bone"day. One year ago today Kelptyn received a life-saving gift that has helped him start to make new bones. Below are pictures of what his right and left arms looked like in 2011 before his bone marrow transplant and two pictures from his skeletal bone survey taken just yesterday. Right Arm 2011 2012 Left Arm 2011 2012 Despite having chimerism results all across the board this past year, Kelptyn is showing signs of bone remodeling. I know the images are difficult to see since I took the pictures of his X-rays with my cell phone from the computer screen at the hospital, but I wanted to share them with all of you that have cheered him on. I am not a radiologist and we are still waiting on a final follow up read of the scans, but I think the bone shape has changed and his bones are no longer just solid white, dense bones with "whale tail" like ends. Kelptyn IS remodeling his bones! This is outstanding progress and again we are reminded of what a sailor our son is. Kelptyn's voyage through this storm has been filled with highs and lows, yet steady he goes.
As if this is not the best gift we could receive today, we have even more good news today. Kelptyn is acting more and more like himself, his blood pressure is well controlled, and we have been granted permission to go home from the hospital today! This recovery has been extremely slow and long. There have been many, many sleepless nights, screaming, and all kinds of bodily fluids, but our little man has once again pulled it together just in time to surprise us. It looks like we just MIGHT be home for Christmas after all. This most recent ICU visit has knocked us down twice and has covered us in all kinds of bodily fluids. Once with Kelptyn's most recent skull surgery and then came the really bad news just two days after his surgery. Kelptyn's Grandma and I spent the morning with Kelptyn as one of his surgeons unwrapped Kelptyn's wounds and blood literally poured from his head all day and all night. After just a hour of sleep the night before, I had to run in to the bathroom cause I felt so extremely nauseated seeing Kelptyn like this.
Then after starting the day off that way. Kelptyn's hematologist/oncologist hit us with the worst news....Kelptyn's donor cells have dropped off to 13% and 6% on the two different markers. Yes, crazy, I know, especially since just 5 weeks ago he was 100% on both markers. Again, we are left speechless and realize we all still know so very little about what his body is doing. This news leaves us with just two questions that may never really have answers: How many donor cells are enough and will he hold on to them? I contacted the expert in the field this weekend and he told me that Kelptyn's fluctuation in donor cells is very unusual. However, he did know of some patients that were able to remodel their bones with about 10% donor cells. Our Happy Star will continue to show us the way and time will tell. We will continue to check his donor counts weekly for now. Kelptyn is still in the ICU. Hopefully, he'll get moved to the floor tomorrow. Thank you for all the prayers and well wishes. ICP: This is a video of what Kelptyn looked like when his inter cranial pressure was high in the ICU before they got it under control with medications. I must warn you, it is heart breaking to watch. I only took this video to show the neuro docs just in case he bounced back quickly from the ICU meds before they could see him like this. Pre-Surgery: The night before Kelptyn's expansion cranioplasty with jackscrew distractors. Post Surgery: Recovery #11. After several discussions and questioning, the Neuro docs gave Kelptyn a high resolution CT scan this morning. The results demonstrated a need to make room for Kelptyn's growing/developing brain. Most of his sutures have completely fused, so much so that you can't even see the lines really of where they once were (not so typical for a 22 month old). There is also not much space between his brain and skull. We believe with these latest results that we cannot treat his cranial pressure long enough with just medication for his bones to remodel and make room for his brain.
Kelptyn will enter the operating room tomorrow morning at 7:30am for an expansion cranioplasty with jackscrew distractors. We are calling on all our angels once more to guide his doctors and surgeons through this 4 hour surgery. If all goes well and is textbook then he will remain in the ICU for the rest of the week until they can remove the external head drain from the procedure. Kelptyn will have a spacer and plates placed in his skull and they will need to be removed surgically once his bones heal (maybe in 4 months). And we will be trained how to manipulate his head screws each day for 15 days post op to slowly make more cranial space until they can remove the external screws. He may look like a baby frankenstein for awhile, but we know he is just shy of an angel to us. We are hopeful that this will be one of the last hurdles Osteopetrosis asks our son to jump. Thank you for putting in a good word with your angels for our son. Kelptyn continues to teach us that we need only to rise one more time than we get knocked down. Kelptyn had an MRI/MRV late on Thursday evening. The results were compared to his previous ones and demonstrated that his vein drainage has actually improved since he was about 6 months old. This is a sign that his bones might be remodeling. While this is a huge relief, it just gives us one piece of the puzzle. We are still unclear as to why he is having cranial pressure. Doctors are still toying with the idea that his brain may be just slightly out growing his skull. Bone remodeling is a very slow process. We are still trying to see if we can come up with the right cocktail of medicines to buy Kelptyn enough time to remodel his skull/bones and grow with his brain. If this fails to relieve him of his cranial pressure then we will have to move on to a more nuclear procedure, a skull expanding surgery. Thank you for your continued thoughts, prayers, and support. We've had some very scary moments this week and not a whole lot of sleep.
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AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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