LONG day

Brant right after his ECHO

Today was long... I'm exhausted, Brant is exhausted but it was a good day. We started our day leaving the house at 5:45 this morning with my mom & dad and headed to Seattle Children's. We got stuck in traffic around Mountlake Terrace then I had to go to the bathroom SO bad. We were already running a little late but there was no way I was going to make it so we pulled off somewhere and stopped at the gas station. Somehow we still made it to Children's on time. We checked in at 8:50 on the Cardiology floor for his ECHO. We still don't have the results back yet and probably won't get them until Monday. The actual ECHO went really well. When she told us it could take an hour and a half we all got pretty nervous... yeah trying to keep Brant still for an and half, NOT going to happen. But she put a movie for him and she had me lay on the bed with him. I had to hold his hands because he kept grabbing the thing out of her hand. It didn't take too long though and he did really well.

After that we had some time to kill before his pulmonary appointment so we headed to one of the Starbucks that they have there. Once we got checked in at the pulmonary clinic and got called back he started to get really sleepy and was REALLY mad when I had to strip him naked to get his height & weight. He weighed 16.4 lbs and is 27 inches long AND is on the growth charts for his chronological age which is a pretty big deal! The appointment went really well. She wants to get him off oxygen asap rather than waiting until Spring. She thinks he doesn't need it and it won't be long until he's crawling and its going to be a big mess with the tubes. So we will start weaning him off during naps and then call when we are ready to retry the 2 night sleep test. If that goes well he will be off oxygen unless he gets sick! We then were sent down to their flu shot room so he could get his second dose and so I could get a flu shot. Poor guy, he was passed out when they gave him the shot and he was NOT happy when he woke up to that.

After his appointments we headed over to UW to visit some friends who are there on bedrest... it brought back some emotions thats for sure! Prayers for both families would be much appreciated! They both have a long road ahead of them but they are for sure in the best place possible.

It was really weird to walk past my old room and see the hall that I walked down bawling my eyes out headed to the OR. It was the first time for my dad to be back there since we brought Brant home and as we were walking in the front doors he said "Gosh its like we never left!". It was funny because I said the exact same thing the first time I came back. Everything you go through there is worth it though. I could not imagine life without Brant and I often think back and wonder what did I do with my time before I had him?? I'm seeing more and more too how much he has Darren wrapped around his finger. Every morning Brant comes and snuggles in bed for a little bit with us and the other night Darren actually kept asking me if he could sleep with us tonight. It's pretty cute to see them play together. If Darren is home, where ever he is, Brant is.

BUSY week!

We've got quite the busy week! I worked yesterday, worked a couple hours this morning, then took Brant to the Walgreens Infusion place in Bellingham and he got his first Synagis shots. Then Darren & I ran a few errands in Bellingham, each taking turns staying in the car with Brant. Tomorrow we have the Noreco guy coming and delivering more oxygen stuff plus we have to try to get the right pulse-ox probe that will fit on his foot (he has outgrew the ones we have). And that can be a process because they carry so many, we have to find one that will fit his foot AND have the right adapter to go to his monitor.

Thursday me, mom and dad are taking Brant to his Seattle Children's appointment with his pulmonolgist and he will be getting an ECHO just to check his heart and make sure everything is normal. We are doing it just for peace of mind because of the issues he had last month when we tried to wean him off oxygen during the night. We think that when we tried doing that he was coming down with a virus and that is why he was having de-sats; not because of pulmonary hypertension (which is what we will be looking for in the ECHO). After that we will be making a stop at UW to visit a couple mom to be's that are on bed rest there. Then back home and back to work on Friday! Hoping for a very quiet weekend!

Back to today and his appointment for his first round Synagis! Synagis is a prescription medication that is given via shots in the legs. It contains virus-fighting antibodies that will help Brant if he were to get RSV (Respiratory Syncytial Virus). His weight today was 16 pounds, based on that weight he gets 2 shots, 1 in each leg and will get them every 4 weeks through March or April depending on how long the season lasts. They are very stingy on who they give the Synagis to because it is a very expensive drug- a LOT of paperwork goes along with getting it. The lady who gave him the shots said he was the first in this area to get it so we are very thankful for that!