The Good, The Bad and The Ugly News from Luke's last Doctor Appointments

Here are some pictures of the beautiful mural
wall at the Mary Bridge Out Patient Clinic

As mentioned in the previous blog Luke had two Dr. appointments on Friday. The first one was with his rehab Dr. we were discussing Luke's muscle relaxant, baclafen. We had tried to increase the dose but found that when we did Luke began to have more of his startle seizures, in fact they got so bad that he would do them without even being touched. The Dr. agreed that this wasn't good, therefore we are keeping him at the dose he's been for the past year. The Dr. did say that Luke was looking good and even thought that he looked like he had gained some weight, of which I had to tell him that this is not so, he actually lost a pound, but nevertheless it was good to hear a Dr. saying that Luke looks good. Losing a pound doesn't sound like a big deal unless you are way underweight and then it's a huge deal. We also discussed putting Luke into some casts to help get his ankles so that his feet are bending up towards his legs, he thought that might help his knees too, so we will be making that appointment after our trip.

After going to that appointment we headed over to the lab to do his bi-yearly full comprehensive metabolic bloodwork. Getting blood out of Luke is like trying to extract liquid from potato, I'm sure potatoes have some kind of liquid in them but getting it out through a microscopic tube would be just about impossible. I could tell the technician was having a huge challenge, but in the end she got just enough for the test.

We then took a bit of a walk around a beautiful park by the hospital, what a blessing to be able to take Luke on walks again now that the weather is getting nicer.

Our next appointment was with his pediatrician, we needed to see him about getting some prescriptions for a portable oxygen concentrator and oxygen while we are on our trip, we also wanted to discuss his bloodwork results. I was so disappointed to find out that Luke's Co2 numbers are still too high, in fact they are the highest they ever been on this test. PLEASE, PLEASE pray that Luke will start to take deeper breaths so that he can blow out that damaging Carbon dioxide from his body.

Luke and Lily stayed the night at Yoli and Juan's that night, they are so sweet to give us a break every once in awhile. They had a bit of a challenge when Luke was not doing so well, he was breathing really hard, needing to be suctioned constantly and his heart rate was soaring. I had forgotten to send Luke's Sudafed with him, so I took it over to him and after giving him the med and some prayers he settled down. I offered to take him home of course, but they said no they would keep him. What a HUGE blessing it was to get a full 9 hours of uninterrupted sleep.

We have less than a week before we leave on our vacation, while I'm so excited about going, I'm also very aware that I'm going to be going non stop to get everything pulled together this week, oh well it is what it is: -)

Love in Christ,

Luke's Mommy Sue