It has been an eventful week. Monday started with Russell's Heart Cath which went amazingly well. I have to stop and think about that for a bit, to remind myself how big a deal the Cath is. They send a catheter into Russell's neck and then basically go exploring in Russell's heart. They measure pressure, and take a biopsy to check for rejection, and do a whole bunch of things to stress the heart to see how it is performing. Although, it is a day procedure it is not minor in any other way. Everything went well during the Cath. While Russell is "out" they take blood to do tests...it is just easier. As a result, we were told that his Potassium levels were high. We have been through this before. A med was prescribed to take the Potassium level down...been there...done that. No big deal. Well...nothing in our life is ever simple. The med is this brown slop that we have to give insane amounts to Russell. 40 ml...every 6 hours. Keep in mind...that no other med we give Russell is more than 1 ml. Russell is awesome at taking his meds...but when you have to give him this volume he digs in his heels and says "no way." Never mind the fact that getting the med from the pharmacy was a bit of an adventure in and of itself. I went to a pharmacy, close to work, but got a powder that we had to mix with water. This didn't seem right to me as we had been given a liquid before. I did some checking and the powder was correct. The problem with the powder is that it doesn't mix with water at all...it separates in about 3 seconds. It is the equivalent of trying to drink a glass of water with sand in it. Try constantly trying to shake a syringe while trying to pin your son down...holding his arms...and trying to pry his mouth open. On one session I got head-butted twice. As we had used this med before...i called our "dealer" (our regular pharmacist). To ask about what we did last time...he told me that we used a liquid, which he had in stock. So off I went to the pharmacy...to get a new batch of this nasty brown liquid. Although using the liquid was better (no mixing...no separating of the liquid) it was still just as much of a wrestling match to get Russell to take it. Giving the med was so awful that we decieded to skip some doses for our own sanity.
Thursday morning...I grit my teeth and said..."your getting your meds this morning." After a 20 minute session the med was in. Off to work....
At about 11:00, Thursday morning...I got a call from our babysitter. She told me that Russell was just not himself. He was drinking but not eating and had no energy. She had changed about 4 diapers with diarrhea. Normally, I would have just thought he was sick...but in conjunction with the high potassium I thought we should get him in to the lab for bloodwork. We were scheduled for the next day anyway...so i thought we would just go in a day early. The blood tests would show if there was anything to be concerned about. So I left work, and picked up Russell. I have to agree with our babysitter...he wasn't himself. He flopped into the car seat when I put him in the car. He started to nod off to sleep right away, which concerned me a little. High potassium levels can cause arrythmia...and he wasn't acting "tired" sleepy...he was acting "things aren't good" sleepy. I have to confess I left my hand on his leg as i drove and jerked it from time to time to make sure he was ok. Some not very pleasant memories were coming back to me. He was OK when we got to the hospital. We were just waiting for the elevator at the Sherbrooke St Parkade when he launched everything he had eaten that morning all over the two of us and all over the floor. This wasn't a trip to the clinic lab anymore it was a trip to Children's Emerg.
I went to the clinic as they were waiting for us. Catherine (one of our techs) was there and she helped clean Russell up a bit. We collected ourselves for a moment and then headed off to emergency. The emerg was a gong show. I walked in and the waiting room was packed. There were probably about 60 people in the waiting room (Place appropriate four letter adjective here quickly followed by a prayer for forgiveness and patience.) The advantage of being "special" is that we don't wait in waiting rooms...especially ER waiting rooms. I gave Lea from Variety (our Heart Clnic) a quick call to let her know we were there and to call for backup in case anyone hassled us about getting into a treatment room ahead of the 60 others waiting to get in. Lea made the quick jaunt from across the street and looked at Russell and immediately said how "dry" he looked. It was obvious he was really dehydrated. Without any real issues we were quickly escorted to Room 10 in the Emergency Room.
I can be very critical of some of the medical people we encounter who don't know a lot about Russell's medical history...but I need to learn to be more patient. Everyone tries very hard and they do try to their best for Russell. The problem is Russell is very complex and therefore the Doctors and nurses become VERY careful. Everything slows down and starts moving at a "snails" pace. I assumed that they would start an IV, to re-hydrate the boy, and as soon as that IV went in I knew we weren't going anywhere soon. After a few hours of fluid through the IV he already started to perk up. At about 6:00 that evening...we started feeding him Cheerios and Juice. Russell was already starting to entertain the nurses and be a regular "ham". This is when I get the most frustrated. You have a kid who is feeling fine and is acting like his old self but no one is going to let you go anywhere. From here it becomes a negotiation to have us leave the hospital. We received the news that they wanted to admit him to monitor his potassium level and make sure he didn't have the flu. Fantastic...we weren't leaving anytime soon. This is when frustration turns to anger. There is nothing that they will do in the hospital that we can't do at home. Pull the IV and let's go already. He is drinking and eating... what more do you want. The only thing that changed in the past 48 hours was that we had introduced this nasty brown slop med...which obviously has given him diarrhoea...which has caused him to be dehydrated. Let's stop the med and leave the poor kid alone. Ahhh yes...but we must be careful. So this is how it went for the next 24 hours until we negotiated a day pass to go home on Friday evening. We returned Saturday morning for bloodwork and waited for the results before we finally were formally discharged.
So that was our week...how was yours?