Update on Jack's Health

It has now been three months since Jack was discharged from the hospital after his three night stay for having low platelets and neutrophils (a component of white blood cells). The good news is that we made it through the rest of the summer without him being admitted to the hospital again. The sad news is that we have had to go to the infusion center at the hospital every 10-14 days for the past three months for blood draws to check his platelet and neutrophil levels, and as of right now there is no end to these appointments in sight.

A normal platelet range is between 150,000 and 400,000. Jack's platelets were below 3,000 when he was admitted to the hospital in June and they were up to 42,000 the day he was discharged. Since then his platelets went up a bit, with one count in the normal range, but lately they have been going down. Today was his lowest count since being hospitalized as his platelets were only 51,000.

A normal neutrophil range is 1,500 to 8,000 and Jack's were at 100 when he was hospitalized. Since then he has had one count at 1,500, but the rest have been much lower and today they were down to 500.

So what does this all mean for Jack? At this point we are not sure and the best explanation that the doctors can give us is that he has some form of ITP (idiopathic thrombocytopenic purpura) that is also affecting his neutrophils. Overall he has been very healthy and he has not had any abnormal bleeding and bruising since his hospitalization, which is amazing considering his abnormal counts, so the doctors are not overly concerned right now but they do want to keep monitoring him. The hope is that in time his body will heal itself and he won't need further treatment (he received a platelet transfusion while hospitalized), but we have no idea how long that will take and although we hope it will only take a few more weeks or months, we know that it could take years.

In the grand scheme of life we know that Jack's condition, as of right now, is not a big deal. He gets to live a mostly normal life (although the doctor said today that we have to stay away from trampolines and other things that might cause big falls, and we've been told to avoid McDonald's play areas because of the germs). But his condition is always in the back of our minds and we have been living with the resulting low level stress for the last few months. When Jack takes a big fall or when he's exposed to germs I think, "What if his platelets are really low right now and his blood doesn't clot properly? What if Jack gets sick and his body can't fight off the infection due to low neutrophils so he ends up in the hospital?" Both of these things are possibilities and we have to be extra aware of changes in Jack.

Going backwards down the slide is fun for Jack, but I'd be lying if I said it didn't make me nervous with his low platelets!

Honestly, besides the low level stress that his condition has added to our lives, the most annoying part of it for me is the appointments every other week. We have a 20 minute drive to the hospital and the parking situation isn't good so we always have a long walk in. When we go in for a blood draw we have to sit and wait for the results, so the whole appointment ends up taking about 1.5 hours. That is a long time for a 2-year-old to sit and wait, and many times I have all three kids with me for the appointments (thanks Val for watching the girls the last two times!). The appointments end up taking our entire morning, and lately I haven't walked away feeling very encouraged since his numbers have been dropping.

For Jack, the worst part is definitely getting poked. Unfortunately he is always a bit dehydrated as he doesn't like to drink much and it seems the more I try to push fluids the more he avoids them, so it is super hard for the nurses to find a good vein. Jack usually gets poked two times every appointment as the first vein doesn't end up working, and one appointment he got poked four times! He is very brave during the first part of the appointment when they take the vitals, but as soon as the band is put on his arm for the blood draw he loses it, and quite frankly I don't blame him. He has no idea why he is getting poked so much and it definitely hurts him. As soon as the blood draw is done he is back to his normal, happy self, but he always avoids eye contact with all of the nurses and doctors at the infusion center as he doesn't trust any of them.

Someday I know this will be behind us and it will seem like a small hurdle, just like our two month stay in the NICU feels today. During the midst of unknown health issues things are stressful, though, so we appreciate your prayers for Jack's health.