Long Day at LPCH

On Saturday the MRI department at Stanford called us to tell us there was an opening on Tuesday for an MRI and we could reschedule our MRI from the 19th to 11th. I jumped at the chance because Beckett wasn't sick and had been doing really well with his congestion since we got the new nebulizer medicine. On Monday the nurse called me and said that they would be able to access Beckett's port for the general anestheisa after he was already asleep from the gas. That morning I told Beckett that we would not need to use the EMLA cream (numbs his skin prior to getting poked) that we usually use when he gets his port accessed because he HATES it and everytime I put him in the car seat he says, "No cream today." So in the morning, I said, "That's right no cream. Just a little medicine."

When we get to the hospital, and I saw the jam-packed waiting room I new we were in for a long wait. Around 10:30 which was when we were supposed to go in for our scan, the nurse called us in for the physical exam. She, of course, noticed his stuffy nose which I told her was chronic and he has had several scans before in this condition and that if we waited till he was completely clear it wouldn't happen.

Anyway, this was the first time that he has had general anesthesia through his port and he usally gets it accessed in the oncology clinic where they do it all the time. So the nurse tells me that it's better to access port in order to administer the general anesthesia and skip the gas step altogether and so he does need to get poked while awake. The nurse said she didn't understand why the other nurse had told me otherwise.

So then another nurse came in. I should have realized when she asked ME what size needle to use she might not be as experienced as I would want someone to be. So then she tells me Beckett will need to lie on the bed perfectly still for her to do it. Um, yeah right. He's 2, for Pete's sake. I told her that in clinic I usually hold him on my lap and she said, "Well as long as he doesn't kick me, I just had surgery." Beckett was really upset by this point and saying, "No, please, no please, no hurt." I said, "Should I take him down to clinic to get accessed?" and she said, "No, I know what I am doing,'" and finally stuck in the needle. Then she tried to use the port and nothing happened. This means that the needle was in the wrong place. The nurse said, "Have you ever used this port before?" Um, yeah. Like 14 times. She said, "Well, if they didn't flush it right the last time, then it doesn't work." So basically she was blaming day hospital, who do nothing but administer chemo and flush ports all day long because she goofed.

Thankfully the other nurse came and said, "Let's give him a break. Since you have a long wait, I'll do it in a little while and give him a little topical medicine so he doesn't feel it."

So finally around 12:45 she came back and we finally got the port placed but it was certainly no picnic. After waiting around another 30 minutes for the anesthesiologist, we finally went down to MRI. They let me stay until Beckett went to sleep and then I went to get food. (Did I mentioned that Beckett had last eaten at 7:30 pm the evening before?)

I went back up to the waiting room and after a few minutes I saw the doctor walk by with Beckett in the bed. She called me over and said that they had been unable to do the scan because his oxygen saturations had gone down too far and he needed a breathing treatment and oxygen administered. He was okay, but they couldn't do the scan because administering the full general anesthesia caused his airway to be disrupted.

I waited for awhile in in the recovery room and Beckett woke up.(He actually could have slept a lot longer as it was his regular nap time, but we woke him up.) When he woke up he promptly gobble two purple popsicles and was his usual cheerful self. We were cleared to leave around 4:15 pm (original appointment time: 9:00 am check in, 10:30 scan).

Afterwards I took Beckett to (yikes!) McDonalds and he ate a WHOLE chicken sandwhich and a carton of milk and then when we got home he ate strawberries and yogurt.

So all's well that ends well and now we are just going to wait for a new MRI time and discuss how we are going to deal with the respiratory issues during it.

And in other news...

Beckett is going to be a big brother. We are really excited to be 24 weeks pregnant with number 2. We are taking a lot of precautions this time around as Beckett was born 11 weeks early (at 29 weeks) due to HELLP Syndrome . We were lucky and he a had a relatively uneventful NICU stay (7 weeks) and aside from the optic glioma is doing quite well for a former 2 pounder.

The info so far:
We found out a few weeks ago that our new addition will be a boy.
He's on track on growth scans (as of today 1 lb 6 oz) .
My health is pretty good with only minor increase in blood pressure.
We are being watched and monitored very closely with monthly growth scans and other tests for now.
I am taking daily injections of Lovenox and also daily baby aspirin to prevent problems from occuring.
I am WAY bigger than I was at this time with Beckett. In fact, I am bigger than when I delivered him, which we are taking as a good sign.
This past week we had an ultrasound and got an awesome picture. We also found out that so far things look good but in the words of Doctor Taslimi, "We're not letting our guards down."



This is a profile shot in case you couldn't tell! (It takes awhile!)

Cousins

Beckett and his cousin Milly get along so well! It was great to have everyone out here and see the kids together again. I am glad that they get to see each other as they grow up and they can be friends, even influence each other. Today, Beckett said, "I climb Milly." (He wants to climb like Milly.) I think she might also have a positive effect on potty training, but the jury is still out. Beckett also loves to look at pictures online of Milly and Jed and watch their videos on Youtube. Each of Milly's videos have about 80 views and I am sure that most of those are Beckett.


The picture above is from the newly remodeled playground in Ben Lomond, which has awesome play structures, including a giant rope web to climb in, a bunch of different slides, a super cool padded surface, swings, one of those cool phone things, etc. Of course, as you notice in this picture, the kids are playing with grass. What could be more fun?

They also had fun at the grocery store. (Also newly remodeled.) I can't wait until they're teenagers and they actually drive. (NOT!!)










We still haven't heard about the last giardi test, but we're willing to bet Beckett will need another round of antibiotics. His sinus infection does seem to be getting better though, partly from being out of daycare and partly from more treatments.