Friday, June 4, 2010

Blake's Health Update 2010/06/04

Well, this third dose of Methotrexate has really zonked my poor little guy.

Blake already had a rough time with things last week, feeling nauseated and fatigued every day. On Wedneday (June 2) we headed to Kingston for Dose #3. He was dog-tired when we got home. We had borrowed my Mom's van for the drive to Kingston so we stopped at my parents' place for a quick visit on the way home. Blake had a yogurt for a snack and then my Mom gave his hair a quick chop-chop. It was desperately needed! Blake had a nice visit with my Dad and seemed to "perk up" a bit.

We headed home, and he ate some supper with no problem. However, at 8pm things changed. His nausea became much worse and he ended up with the dry heaves (which surprised me because he had food on his stomach, so I don't know how it all stayed down). He was in a lot of pain and the wave of nausea seemed overwhelming. By about 45 minutes later, things were settling down. He still suffered with the nausea and some pain all night, but certainly no where near to the extent that he experienced at 8pm. We both decided if this happened again, we'd be off to Picton's Emerg.

After an evening of popping more Gravol & Tylenol #1's, he ended up staying in bed all day Thursday. He was completely zonked. He sat up to eat an English Muffin and a few grapes late morning. By mid afternoon he had a bowl of cereal. He basically rested the balance of the day. For supper we went to my sisters. He seemed to perk up a bit. I think it was good for him to have a change of scenery and get outside for a while. By the time 8pm rolled around, he needed to lay down again. After about a half-hour rest, he joined all of us to watch a movie.

I think he rested pretty well last night. He seems to moan out in pain through the night, but rolls over and drifts off again. He awoke to feeling nauseated again this morning. He is still quite thin and very pale. The acne on his face has just exploded. I was reading online about the side affects of Methotrexate, and acne is one of them. When he was on Cipro & Flagyl, it seemed to help control it somewhat. But now that he's off those two antibiotics and on the Methotrexate, his face is terribly irritated and literally sore with acne.

Our next appointment with the specialist, Doctor Depew, is June 9th. I am going to ask him if we can consider this Methotrexate a failure and move back to the Remicade. I cannot see Blake going through this for many more months. It will take at least another five doses before the med even BEGINS to do what it's supposed to, and even then there are no guarantees. Each dose is making him sicker and weaker. BRING BACK THE REMICADE!!!!!! It's so frustrating when right before our eyes sits a drug that can heal his little body and get him back on course; yet our government will not allow it because they'd rather take the cheaper route. And the sacrificial cost is my son's health and ultimately his life!

Again, I need to make you folks aware that I am not upset with the Doctors. Their hands are tied. There is nothing more that Doctor Depew wants than to put Blake back on the Remicade. But the government is telling him "No". ARGH! The Doctor has gone to the Deputy Minister of Health in the past to get them to understand the need for this medicine for many of his patients; and time after time they are denied. He said, "I don't know what to do. Maybe we all [Crohns patients] need to get together and go [crap] and bleed all over [the government's] lawn!" I told him that we'd be in that group for sure!

Meanwhile, we'll just keep nursing Blake through this. I will take him to Emerg if he gets worse; however, our local newspapers are reporting a virus outbreak at our local hospital, and with Blake's immune system being so low, I do not want to risk yet ANOTHER problem. We'll try and "tough it out" here at home until next Wednesday, and then we'll see what Dr. Depew & Dr. Flemming think we should do next.

Last week, "The Word For Today with Bob Gass" had an amazing devotion called "God Will Take Care Of You!". I would like to quote the last half of that devotion. It was truly amazing. I printed it off to keep here by the computer, where I can see it every day.

(He will take care of you... Psalm 55:22 NLT)
Sometimes God calms the storm, other times He lets the storm rage and calms us. Either way, He sustains us and brings us through. We always have a choice: either we give the burden to God or we try to carry it ourselves. How does God provide for us? One day at a time. Remember the Israelites in the wilderness? Each day God fed them by sending manna from heaven. Notice how it worked. The number of people in your family determined the amount of manna you received, no more and no less. And God would only allow you to collect enough for each day; if you tried to hoard more, it rotted. Getting the idea? So trust God for today and leave tomorrow in His hands. 'Give your burdens to the Lord, and He will take care of you.'

One day at a time..... that's what we're doing, folks.

Thank you for your continued prayers.

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