St. George, Easter & 9 Months!

It's crazy to think we have been on this journey for the past 9 months. That's at least one (usually more) poke a week for 39 weeks, which makes for one TOUGH boy! Although it's still a daily struggle, we are beyond grateful for each and every moment we get with Colton and so thankful for all the love and support from our family and friends.  Overall, things seem to be looking up.  We celebrated Easter with our family last weekend and we were able to take Colton to Easter Egg hunt with his cousins.  Yesterday's results seemed to have confirmed this as the doctors were extremely happy with Colton's counts.  His platelets and red blood cells are back in normal ranges and have maintained themselves for an extended period of time. Although this doesn't mean he's recovered, at least it feels like we can begin to breathe again. His tests from yesterday also confirmed, at least for now, his body is no longer hemolyzing his red blood cells.  This is huge news and so exciting because he's currently not producing the antibody against his red blood cells. On the flip side, his white blood cells are still low and the doctors are running some more tests to figure out if it is an antibody (destruction) or production problem. We should have those results on Friday. Of course we know things can change at any minute but for now we will embrace the good news!

Since, the doctors had to run a bunch of tests on his blood yesterday, he had to have a vein poke. He didn't like it much, but he is always such a tough boy. We also lucked out and were able to have Ryan draw his blood.

Colton and Mommy went on a date trip to St. George for a long weekend. Colton had a blast swimming, hiking, playing at the splash pad, taking lots of walks, playing in the sand, catching fish and being the center of attention

Colton is still house bound since his ANC is so low, but we did make an exception to celebrate Easter with all his cousins, which made for one extremely happy boy.

The plan going forward is to continue to watch him for any changes or fevers and have him checked again in 2 weeks! Yah for another week off with no pokes!

Stats From Wednesday's Visit (April 23rd):

• White Blood Count (WBC) - 4.5 (normal range is 6.0 to 17.0)
• Absolute Neutrophil Count (ANC) - .6 (normal range is above 1.5)
• Platelets - 189 (normal range is 150 to 400)
• Hemoglobin (HGB) - 11.7 (normal range is 11.5 to 13.5)
• Hematocrit (HCT) - 34.6 (normal range is 34.0 to 40.0)
• Red Blood Count (RBC) - 4.43 (normal range is 3.9 to 5.3)

Trip to St. George

Easter With Cousins

Sometimes Uncle Brant Comes To Visit When We Are At The Hospital

Happy Boy After The Hospital

Showing Off His Poke

April 9th Clinic & Allergic Reaction

Colton had another week of ups and downs.  He went in for his weekly CBC on Wednesday and his results came back really positive!  His WBC and ANC were down a little, but everything else was either right around or within normal range.  And he gets next week off!  Earlier in the week, however, Colton got a rash, which the doctors determined was hand, foot and mouth disease.  His symptoms were pretty mild, but still not fun.  He also had a bad allergic reaction to something in the backyard :(

 

Stats From Wednesday's Visit:

• White Blood Count (WBC) - 4.8 (normal range is 6.0 to 17.0)
• Absolute Neutrophil Count (ANC) - .7 (normal range is above 1.5)
• Platelets - 191 (normal range is 150 to 400)
• Hemoglobin (HGB) - 11.2 (normal range is 11.5 to 13.5)
• Hematocrit (HCT) - 33.0 (normal range is 34.0 to 40.0)
• Red Blood Count (RBC) - 4.3 (normal range is 3.9 to 5.3)

Loving riding his bike after some good blood results!

 

 Not happy during his allergic reaction :(

Feeling a little better :)

Unexpected Trip to the Hospital & Quilt Update

Colton was throwing up all Thursday night.  It gave both Dan and me a heart attack because the last time he threw up it was all blood (during his life threatening GI bleed).  It brought back a lot of horrible memories and emotions.  On Friday morning we thought he may have just caught a bug and was on his road to recovery until he came down with a fever.  Any fever with a low ANC means a trip to the hospital.  Thankfully the doctors didn't make us go to the ER.  They told us to get blood counts and, based on those results, would decide if he needed to be admitted.  If so, they would just do a direct admission.  Given how bad Colton looked and acted, we thought he would for sure get admitted.  To our surprise his counts were actually awesome and his body was having the correct response to fighting a fever!  We were sent home and he bounced back to his normal self the next day.  So much for getting a week off though :(

Although we received good news this week, we know all too well how quickly things can change.  We are trying not to have high expectations for next week.  Colton's blood pressure continues to be high.

Almost all of the quilt squares are completed and they are looking dang cute -- at least that's what everyone says (I'm not looking until the quilt is done)!  If you would like to participate, there's still time!  Check out the 'Making a Blanket for Colton!' post for details.

(Awesome) Stats From Friday's Visit:

• White Blood Count (WBC) - 6.3 (normal range is 6.0 to 17.0)
• Absolute Neutrophil Count (ANC) - 4.63 (normal range is above 1.5)
• Platelets - 64 (normal range is 150 to 400)
• Hemoglobin (HGB) - 11.3 (normal range is 11.5 to 13.5)
• Hematocrit (HCT) - 34.2 (normal range is 34.0 to 40.0)
• Red Blood Count (RBC) - 4.1 (normal range is 3.9 to 5.3)
• Mean Corpuscular Volume (MCV) - 83.4 (normal range is 75.0 to 87.0)

Feeling Sick at the Hospital

 Colton fell asleep waiting for the blood results

Hemolization & Week Off!

Colton's doctors let him have the week off, so no pokes!  Hooray!  Although Colton still asks daily if he can go to the hospital....goofball!

Colton's stool test came back negative for blood, which means he does not have internal bleeding. We will take that as good news :-)  Given those results, Colton's doctors suspect he has low hemoglobin because his body is producing antibodies that continue to hemolyze (destroy) his red blood cells (RBC's) through an autoimmune process.  However, when you hemolyze your cells, a byproduct is a release of bilirubin.  The doctors are a bit perplexed why Colton's bilirubin has remained normal and is not elevated. 

To make things more complex, another indicator of hemolization is low haptoglobin (a protein), which they have seen drop significantly, indicating hemolysis...a complete contradiction to the bilirubin.  In addition, his reticulocyte count (immature red blood cells) is 9x normal, so his body is producing new RBC's at a very high rate to compensate for the loss. The doctors just don't know where the loss is occurring yet.

The doctors were able to determine Colton has low iron in his RBC's, so we have started an iron supplement to help maintain good healthy cells.

Colton had high blood pressure the past few times he was tested.  He went in last Friday to have it checked.

 

Enjoying his week off playing with his brother!