We are still at .7 for white blood cells. That is okay. But we do have numbers for ANC levels, it is 399. We were told in the beginning of this whole BMT, that the ANC has to remain at 500 two days in a row, for him to be able to go out in the hall with his mask on.

Hayden had PT today, where we added another play mat so he can work on crawling which he is slowly getting. After playtime with Physical Therapy he got platelets since he was at 16k today. As usual, he gets a dose of benedryl, tylenol, and then the platelets so he doesn’t have a reaction, so he was really tired when naptime came around.

They have also decreased his TNA down to 16 hours a day with 0 fat vs. the 19 hours of liquid food. So this morning we had scrambled eggs, yogurt, and even his first pancake which seemed to get stuck a lot in that mouth. Morphine is reduced to .2 as well.

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Hayden is again doing well. His white cells are up to .7 and platelets are at 31k. He is eating and drinking well. He is fighting on taking his naps, so we know he is getting back to his normal sassy self.

He is moving around so much that we are constantly calling the nurses in to untangle his lines. He sets a beeping noise off on his machines that we have grown accustume to when he is “occluded” or cut off from his drips. So we call the nurse back in. Hayden has really learned how to wave good bye well to people coming in and out. I work with him on using his signs as Abby did. It makes for better communication between us for eating, playing and even manners. He knows milk, more, and eat and we are working on please, and thank you.

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Hayden is pretty much the same as Day 16, very active, laughing and eating well! He is back to chewing on everything including his crib railing which is metal-ouch! He is back to enjoying his baths, and loving the exercauser. White blood cell levels are at .6, which is up from yesterday. Still good! He might have a virus, which has to run its course. UGH.

Today, when he saw Abby in the window he actually got upset, he wanted to touch her and see her closer as he tried to get away from me as  I was holding him. That is hard to see. Hopefully soon he can come out of his room and hug and play with her, with his mask on. Besides that he thinks everything and everyone is funny!

He has a long way to go yet with his engraftment but it is hard to believe we have made it this far. He is a trooper and sure lucky to have two parents that would give everything for him, always right by his side everyday through this. We wouldn’t want to be any where else but with our kids.

Hayden slept from 6:45pm until 8am last night! He really wore himself out! He got up, drink formula, ate apple/bananas baby food hoping to bind his stool today, played  and went down for a nap at 11am. It feels like a normal day at home except for being stuck in a 15′x12′ hospital room with no room to run, or crawl in Hayden’s case.

Doctors are discussing tapering down on his morphine each day and the TNA feeding nutrients. So when his numbers are up and sticking we will be off the machines and taking any meds orally.

White blood cells are at .4 today! Yah for them!

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Hayden still remains at .3 for his white blood cell level. His TNA feeding has decreased to 20hrs/day. For four hours (4pm-8pm) he is off the nutrition. He continues to eat well, still working on getting normal stools but at least they are coming, slowly.

He is still in a very good mood, playing, laughing, and eating well. He tired himself out early today with a small nap in the afternoon, so it wasn’t even 7pm and he was nodding off in the exersaucer. I held him for a while and then retired him to his comfy bed!

Tomorrow is another busy day in Hayden’s room!

Abby is doing really well with having Hayden gone so long. She loves coming to the hospital to play in the playroom while Rick and I take turns with each of them. She recently made a “wishing tree” with Child Life volunteers and wished on all the leaves for Hayden to come home.  Abby, Grandma JoAnne and I met Kate and Michael (my friend and son) at the Farmer’s Market by the Capitol today. It was so nice to get out and spend time with Abby. Abby wanted to go into the Capitol so we toured it a bit while using the restrooms. She thought that was pretty neat! Of course we had to get cheese curds and spicey cheese bread from Stella’s too!

Rick and I are getting used to the crazy schedule of living in two locations, but can’t wait till we can go back to normal.

kb

Today white cells are still at .3, so doctors think this is the real deal, the early stages of ENGRAPHMENT seem to be happening. It still is early yet, so we will hope for the best and see what the next few days bring. Lungs still sound clear and pain level is still at a low. We will have to shine up that walker soon, at this rate he will be out in the hall, chasing the nurses in no time, with his mask on!

Hayden is still active, PT was very successful today along with eating yogurt and drinking formula. We continue to watch those stools and make sure they happen, but most of all he plays and naps!

kb

Hayden is doing very well, no fevers, his lungs sound okay, he’s very active, he’s eating a little, and he’s having a few soft stools.  His tummy is still quite large and hard but it is getting better. 

The best news is his white cell count is at .3, the day before it was .2 and the day before that it was .1.  One of the head doctors said he doesn’t think much of .1, sometimes .2 can amount to something, but .3 is usually the real deal.  To recap, the .3 means his white cells are detectable and so the new stem cells are probably growing marrow.

All goods news today, a nice change.

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And what a stool it is. We are very relieved, after 5 days we all were very concerned. There were doctors after doctors coming in to assess things today. So this is good news for us all! Especially Hayden, his tummy can return to the normal size!

Tuesday was much better, no fevers since Sunday and mouth pain is under control with the morphine. We are now very concerned with his lack of stools. He hasn’t stooled for 5 days now. At 1pm, he had a small soft stool after many attempts with laxative medications.
I also hear that tummy gargeling more which means things are moving.

On Monday we tried massage with OT, jumping up and down in his exersaucer, and some bike movements with his legs, nothing has worked yet. We will all be so happy when this all comes out and his tummy returns to normal size! I am sure he will be the happiest.He still continues to drink his formula which is a very good thing! He also shows water retention, but doctors feel it isn’t a concern since he doesn’t show excess fluids in his body.

Abby and the dogs are in Green Bay until Thursday or Friday, hanging out with Grandpa and Grandma Augustine. This allows me and Rick more time with Hayden while he’s so sick!

Most disturbing is Hayden’s chest x-ray now shows an infection, most likely pneumonia, he also has a different infection in his blood which came from his hickman line.  Right now he is receives a variety of antibiotics to fight the infections.  One caused an allergic reaction called “red man reaction” where his face and skin turned very red and itchy, this made him very uncomfortable.  He still receives this med but is given Benadryl prior to avoid the reaction. 

He has on and off again fevers that need to be closely monitored.  For about the last 30 hours his temperature has ranged from normal to 102.9, which is an improvement. 

His lungs show fluid build-up which is concerning and needs to be removed.  This fluid in his lungs causes him to breathe rapidly.  Normally he would take 28 breaths per minute and now he averages 48-64, sometimes going as high as 95.  To counter this he is given Lasix which makes him urinate profusely.  Despite laxitives he has not had a bowel movement in at least two days, this is causing him to have a bigger stomach (and also causes pain).  The bigger stomach puts presure on his diaphram which in turn makes it harder for him to breathe.  His skin sucks in at his ribcage and his chest muscles flex during each breath, this is referred to as retraction.  His oxygen saturation has long periods where it dips down to 88-90%, I’m not sure what will be done about this at this point.

The combination of all these medications is not good for his kidneys, so this is being watched cloesely.  Some changes in antibiotics were made this morning to put less stress on them.  His creatin levels are the same today as yesterday which is good.

He eats very little now and sleeps, or tries to sleep all the time.  He insists on being held.  If you pick him up off your chest even to turn him around  in your lap he turns bright red and becomes very scared.   His pain has increased so he has been receiving more morphine, this too makes him sleepy.

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