Timmy's appointment was at 10 and we were actually in the car, on our way, at 9:30. I pulled into the parking lot and the place was packed so we had to park in one of the unassigned parking spaces between a couple of the buildings. Which meant that we would have to cross the path of cars at least twice. The kids did really well staying right by me. Everyone had a case of the sudden munchies and wanted fruit snacks, but they are coming to terms with having to hand them over before we go through the doors.
When we walked in, it was pretty obvious that it was a busy day. However, Timmy's name was called before I could even get us all seated. Perfect! (Turns out that a lot of people are trying to squeeze in visits right before school starts. The nurse told me each doctor had seen 30 patients the day before. Glad I called to schedule a couple of months ago!)
The nurse weighed Timmy and, even though he's now over 12 months and can be weighed with his clothes on, his official weight only came to 16 pounds 10 ounces. Not the stellar 17 from last week, but still not too shabby. You could definitely see a jump on the chart! (Even though he still has yet to hit the curve in the weight department.) He measured 27 inches long. Really doing so well all around.
Dr. Peterson was very pleased with him. And even more impressed by the other kids. Normally, she can hear them long before she gets to the door but they had discovered a secret hiding place between the examination table and the far wall and I asked them if they thought they could be quiet and surprise her. They loved it! They love playing hide-and-seek. (Even though their idea of "finding" a hiding spot is to go to the last place James was hiding.) She came in shortly after we were taken to the room so they didn't have too long to get antsy.
Callie wouldn't hold still so this is the best shot I could get of her with my cell phone.
The visit went really well. Timmy was only due for a tetanus shot so even that wasn't too bad.
I love getting to talk to Dr. Peterson. Her oldest daughter starts college in a few weeks. I think that has set her kind of into one of those bittersweet reminiscent phases. This is her first to leave home. She's going to UC San Diego so at least she isn't going to be too far away. I was impressed that Dr. Peterson remembered meeting me for the first time when I was pregnant with the twins and only had Trevy.
Then she got me into the phase too when she talked about how far Timmy has come. There was a resident there so Dr. Peterson gave her the run down on all the obstacles - PPROM, delivery at 29 weeks, NEC, ileostomy, reanastomisis, intubation, extubation, blood transfusions, steroids, tracheostomy, staph infection, TPN cholestasis... - that Timmy has overcome and we reviewed his growth over the past year. He was stuck at 6 pounds for quite a while. Up and down in the ounces from about June to September and then finally hit 10 pounds at Christmastime. Then he got stuck there for a while too and didn't make it to 12 pounds until he turned a year in April. And look at him now! A full four pounds and change heavier in only three months!
Which got us thinking. If he's finally hit a growth spurt and things continue, could Timmy be decannulated in the next couple of months? I was happy that Dr. Peterson had the same thought. Makes me feel less crazy if someone else brings it up. I asked her if she knew what the cutoff date was for decannulation before RSV season. She said she didn't know. But she was wondering if we can get him to somewhere in the region of 19 pounds or so if that would be good enough. Timmy is even looking bigger. He's much healthier and much stronger than he was even a few months ago. I told her that Timmy's next appointment with Dr. Parry isn't until December and asked her if she wouldn't mind sending him a note regarding the weight gain. I think her signature would have a lot more pull than a mom calling in saying, "Hey, my son's hit a growth spurt, any chance you could take his trach out?" She was more than happy to oblige. We'll even go back to see her in six weeks for another weight check to see where we stand on the official scale.
I'm hopeful, but not overly. I don't want to get my hopes up. I'd much rather plan on having the trach taken out next spring and possibly receive a surprise decannulation sooner than hope for sooner and be let down when I hear that 22-pounds isn't negotiable. We really don't want to run the risk of attempting to have Timmy decannulated and having him fail or have severe respiratory issues this winter during RSV season. However, if the trach can come out without any problems, why have the poor kid have to deal with that plastic straw in his throat any longer than necessary?
So that's where it stands. Believe me, this will be a bolded, extra large font post when it happens either way but, unless I get a call from Dr. Parry in the next couple of weeks, I'm just going to be satisfied thinking that we're under the year mark!
Before we left, Dr. Peterson brought one of the other nurses, Leah (who has seen Timmy a few times and was the first to take care of him), to see him. Yes, he showed off his scooting, his spinning, clapping and waving. And plenty of toothy smiles! I guess she hasn't seen him for a while and she had such relief on her face. Dr. Peterson told me that she could tell me now that when I first brought him in, everyone just couldn't get over how little and sickly he looked. He really was quite a nasty shade of yellow-green and his head has always been big for his body, although now not as much. No one ever really let on to me that they all thought he looked like "an alien", albeit a "cute alien". I knew there was a lot of concern, especially when his weight wasn't going up very fast and the bilirubin numbers weren't dropping. Just makes for a bigger cheering squad for this little miracle man!
1 comment:
Not getting my hopes up right there with you!!!! EEEE!
Post a Comment