Update on Jack's Health

I've had a little more time to post to my blog this week since we've been spending our evenings sitting on the couch watching the Olympics. Micah has been working on his laptop at the same time, so I figured I should try to be productive as well! Of course, blogging is enjoyable for me, and he is putting in extra hours for work, but at least I don't feel like I'm being too lazy since there isn't much time for laziness in our busy household.

I have been wanting to write an update on Jack's health for awhile, but I wanted to wait until we had a little more information. He had another blood draw yesterday, and I'm excited to announce that his platelets were 169,000 (normal is 150,000-400,000) and his neutrophils were 2,200 (normal is 1,500 to 8,000). BOTH NORMAL!! Jack's last IVIG treatment was almost five weeks ago, so this is great news! It means that not only is the treatment working, but his body could be figuring out how to eliminate the platelet antibody which has been destroying his healthy platelets over the last 14+ months.

IVIG

During the last six months, Jack has received five IVIG treatments. He received two outpatient treatments that each took about seven hours, one around the beginning of March and one about four weeks after that at the end of March. He seemed to handle the first treatment well, although he did throw up twice about 24 hours after the treatment ended (which is a normal side effect). The second treatment also went well, and he had no obvious side effects. The treatment helped Jack's platelet count, but they still weren't in a normal range for long.

After the first two treatments, one of the doctors we saw in Denver last January told our doctor in ABQ that he wanted Jack to receive a "double dose" of IVIG. We decided to admit him overnight in the hospital since he would receive a dose over the course of six hours, and then have a few hours off, before receiving a second dose over the course of six hours. We had the option to take him to the Infusion Center two days in a row for this, but we ultimately decided it would be easier on Jack to just stay at the hospital and get it over with. Plus, an overnight treatment meant Micah could be there part of the time instead of me being at the hospital for two full days in a row with Jack.

Jack had his first double dose of IVIG at the end of April. Micah's mom came to town so that she could watch the girls while I brought Jack to the hospital in the afternoon. Micah went home after work and put the girls to bed, and then came to the hospital for the overnight shift so that I could sleep at home. The next morning I went back to the hospital and Micah went straight to work. It wasn't easy for any of us, but it worked okay. Jack handled the treatment well, although he did get quite sick about 24 hours after the second dose was finished, as he threw up six times over the course of six hours.

The double dose had better results than the single, and Jack had his second double dose of IVIG in the beginning of June, right before we went to Michigan for three weeks. I took all three kids to the hospital in the afternoon, and the girls were entertained by the Child Life playroom and the volunteers while Jack got his IV placed. Micah brought dinner to the hospital after work, and then the girls and I went home for the night. We went back to the hospital the next morning so that Micah could go back to work. Thankfully, Jack received a prescription for Zophran which helped Jack's nausea significantly.

Jack didn't have his blood drawn the entire time we were in Michigan, and it was nice to not worry about it for our trip. When he had his blood drawn the day after we returned to ABQ, his numbers were still good! His platelets were close to normal, which was surprising since he hadn't received a treatment in four weeks. Jack's doctors still wanted him to receive one more double dose of IVIG in the next week, though, to give him an extra bump. We scheduled his third double dose (his fifth IVIG treatment) for a Friday afternoon (July 8) so that Micah could come to the hospital after work and stay with him until he was discharged around noon on Saturday (which was great for the girls and I since we didn't have to go back to the hospital the next morning). We were surprised to discover that Jack's platelets were actually in the normal range (about 150k!) before his treatment that day, but the doctors wanted to precede with his treatment in hopes of helping his body even more.

We are definitely excited that Jack's platelets have been within the normal range for the last two months as a result of his IVIG treatments, but it's hard to let our guard down completely at this point. We are supposed to get his labs drawn in two weeks, and then we will continue to check periodically from there assuming his numbers are in the normal range. If he drops significantly he will receive another treatment. It's impossible to know what will happen, but Jack's doctors seem optimistic. We are so thankful to have found a treatment that works for Jack. Thank you to all who have prayed for Jack over the last 14 months!

Blood Draws

On a side note, we have been going to a lab for Jack's blood draws, instead of the Infusion Center, since mid-March. Originally the doctors wanted us to get his labs drawn at the Infusion Center in case he needed treatment right away. But Jack's veins are not easy to get an IV into, so it usually took several attempts before the IV was placed and Jack was becoming very traumatized from our visits at the Infusion Center (as was I since it's hard to hold down a child through numerous unsuccessful pokes). After a particularly bad visit mid-March, I asked his doctors if we could go to the lab instead. Our trips to the Infusion Center took up our entire morning between the drive, numerous pokes, and waiting 30-60 minutes for the results. This was tough with three 2-year-olds. The doctors agreed that it was fine for Jack to go to the lab, which has changed everything for us. I've learned the best time to go for the shortest wait (W-F late morning or in the afternoon), so we usually only have to wait for 15 minutes or less, and he has never been poked more than once at the lab. I always go to the same location since there a couple of phlebotomists there that know Jack and are great with him. It's odd to be "known" at a lab, but this is just something that comes with the territory of a blood disorder.

Yesterday I took Jack in for a routine blood draw. He actually hadn't had his blood drawn in almost five weeks (not since his July 8 treatment), and I was shocked at how well he handled it. In recent months he had been very resistant to getting poked so we had to work hard to restrain him. Yesterday, though, he held out his arm, held it steady when the needle was put in for the draw, and besides tearing up a little, he didn't cry at all! I think he now knows that it is easier and less painful if he holds still and lets the phlebotomists do their work. I feel sad for him that he is so familiar with blood draws, but it sure is easier now that he understands the process.

The girls are extremely empathetic when it comes to Jack's blood draws. When I told him yesterday that we needed to go to the lab, he immediately said he didn't want to go. Faith walked up to him, gave him a little side hug and a kiss on the cheek. And then both girls proceeded to empathize with him and say things like, "You don't want to go because it hurts, Jack?" It is adorable to witness, and I'm thankful that they are great at empathizing since it really seems to give him strength and courage.