Bilateral- both sides. EUA - Examination Under Anesthesia, Fluorescein Angiography- the dye that highlight the cells in your eyes, Fundus Photus - photography of the back of the eye: the back inner wall, the retina, the optic nerve, and retinal blood vessels.
Okay. So here is how the day went.
Phoebe managed to sleep until 7:30 and immediately woke up asking for milk. I tried to giver her her regular water bottle, but she rejected it. She had had milk last night in her bunny sippy cup, which is what I was pretty sure she wanted. I had rinsed it out the night before, so just filled it up with water. She doesn't really know the difference in what she is actually drinking yet--- she just wanted the cup.
We had a fun bath and then played until about 9:30, when she took another nap. She got up around 10:30 and we were checked out and arriving at the Children's Hospital by 11:30! Everything worked out perfectly.
When we got there, the waiting room was much more crowded than the last time, when we were arriving at 7:30 in the morning. We were told straight away that they were already delayed. Now we were on what one of the nurses later described as "hospital time", basically you just had to hurry up and wait. And wait we did.
Phoebe passed the time playing with toys, watching Mickey Mouse, and coloring at a table with some big girls.
At some point a man came and told us it was going to be another 45 minutes, but it was definitely over an hour more until we got taken in the back. Then we got to wait in the exam room for a long time. This time there was the correct style of "crib" gurney, though it was no where near as comfortable for me to sit on with Phoebe in my lap.
Phoebe got weighed, breathing listened to, and they checked her oxygen levels checked with the little band-aid thingie with the red light sensor attached. The nurse gave her some Sesame Street stickers. We met the same Child Life person, Christine, that we had last time. I was pretty excited to see am familiar person, especially as I had liked her a lot last time. She didn't quite remember Phoebe right away, but then she said she started to remember. I'm sure she's seen a lot of other toddlers in the last month. She gave us bubble tubes to keep in our room and gave Phoebe more stickers. She got a mask for Phoebe to play with and we practiced putting it on her dog and baby doll, and made it smell like watermelon. We had actually been left with the mask last time and we weren't sure if we were supposed to, but we took it home. This turned out to helpful because I brought it out again this week and played with it and reminded Phoebe that it goes on her nose. So hopefully she was able to feel like the mask wasn't so scary and out of the norm. Later, she came back and brought Phoebe a toddler toy, a plastic book that had buttons and played nursery rhyme music whenever you turned a page. Phoebe liked that quite a bit. Eventually she came back one more time because her shift had ended and she said another Child Life person would come along for the separation, but I don't think anyone actually ended up coming. I would not have been super thrilled to have a brand new person at that moment because isn't their whole purpose to build a relationship with the child before that transition? But I totally get people needing to clock out and go home. I think shortly after we got the room, our nurse's shift also ended and we got a new one, but both were fine.
It had a big tv, so we watched some Paw Patrol that was on live tv. We've never watched it before, although it is super popular at school. Jason and I were unimpressed and Phoebe honestly wasn't very focused at that stage. Later we searched their movie options and Jason put on Disney's Robin Hood. He said he used to love to put it on when he worked at Camp, because although kids would protest at first, they would then all watch it because none of them had seen it before.
At some point, a different man came and told us it would be another 45 minute wait. He gave us two $5 coupons to the cafe for later. He said that Dr. N's patient before us had made it in, and as soon as they were done, they'd prep for our turn.
A nurse came in and told us we needed to do a lot of eye drops to start dilating Phoebe's eyes. She was a little surprised and then very grateful when I offered to do the drops myself. She said that she was great at IVs or injections or whatever, but eye drops were very difficult for her. It sounded like Dr. N's previous patient was maybe a 3 year old boy and she hadn't been able to successfully give him the drops, so they'd have to do it during the procedure, as he wouldn't cooperate. Poor kid.
Anyway, I did some initial drops, and then she came back and I did a series of 3 eye drops. Then she came back two more times every five minutes and I did those 3 eye drops again each time. At least one what the red lid bottle of cyclogyl we have at home. So hopefully Phoebe's eyes were good and dilated by the time of her procedure. These drops were all more liquidy than the hourly Lotemax gel we use; Phoebe did not like getting the drips on her face. Also, they were smelly and probably stinging.
After more waiting around, Phoebe got very tired (and no doubt blurry vision), and just wanted to cuddle up. She actually fell asleep in my arms, exhausted. While I was sitting there scrolling Facebook, I happened to read about some extremely SAD news about someone I don't actually know in real life, but it was really terrible timing and I was just crying, holding my sleeping baby with the Robin Hood "Love Goes On and On" song happening in the background.
Love
It seems like only yesterday
You were just a child at play
Now you're all grown up inside of me
Oh, how fast those moments flee
Once we watched a lazy world go by
Now the days seem to fly
Life is brief, but when it's gone
Love goes on and on
Love will live
Love will last
Love goes on
And on and on
Once we watched a lazy world go by
Now the days seem to fly
Life is brief, but when it's gone
Love goes on and on
(I'm crying again just thinking about it)
Then the nurse came in with some medicine for her, so we had to wake her up:
We again got offered the midazolam sedative drug, that has a yucky after taste and makes you feel relaxed and not really remember what was happening. It made me feel so nervous--- I hate how little Phoebe can understand of what's happening to her. I want to help her make sense of it all. And yet, if we have to do this again any time sooner than expected, I don't want her to be traumatized either from having a really painful separation. Anyway, Phoebe still seemed like herself after she had it, so that was good.
We met the anesthesiologist, and we know the drill by now, so we weren't super concerned. The only thing of note she said was that she was probably going to put a breathing tube in Phoebe's mouth/nose/throat (not sure which exactly), because with Dr. N examining her eyes, they would both be up doing their work in the same area and there wasn't enouch real estate for them to share and she wouldn't put Phoebe's breathing at risk.
Phoebe only occasionally cried and asked to EAT. It could have been so much worse, she really did amazing. I said, "I promise we will eat as soon as we're done at the doctor's." I didn't want to directly tell her, "No you can't have food right now".... tried phrasing it more positively.
At some point we were told that Dr. N or someone would stop by our room before the procedure but that did not happen, because then all of a sudden they were about to be ready for her. The OR nurse had come in, but not the doctor. We mentioned we'd thought we were going to see him, and they said they could call him in, but as we didn't really have any questions before hand, we said it was fine. We'd just be waiting to hear what the exam revealed.
Phoebe transitioned really well. The anesthesiologist put on Mickey Mouse club house on her phone and went straight to the Hot Dog song that Phoebe already loves. Excellent choice there! Phoebe got to hold the phone and was super happy as she was wheeled off.
I cried a little bit, but by then Jason and I were both super hungry (I can only imagine how Phoebe felt) so we were just so happy that things were finally in motion. It was 3:30 then. We went down to the desk and the board where we could watch for it to say #28, KATA, PHO and tell us when her procedure was in process. We gave our cell phone numbers for them to call when she was done.
We went to the Harvest Cafe and had some lunch. The hospital is GORGEOUS. I really can't say enough about all the little details that went into it's design. Birds on the ceiling, ocean mosaics on the floor, little animals here and there. Phoebe saw some statues of a raccoon family as we were leaving and thought they were cats, but they were so cute. Even since last month, more of the outdoor areas had been completed. We could see a huge park outside, with a big play structure that looked like a giant tree stump fort and this amazing, powerful stone wolf to climb upon. Cordelia would have lost her mind with joy playing in this magical haven. I can't help but think of how proud all the construction teams to work on this project must be. It's really wonderful.
This was one of the few pictures I could find on google,
it's still so new, there's just the promotional photos.
Phoebe's procedure had 2 hours blocked out, but I didn't know how long it would actually take. I messaged back and forth a bit with another JIA/Uvietis mom who is in SoCal. It's great to know we are not alone and to feel like there are people I've never even met sending us all this support. We talked about Remicade vs Humira, and how difficult insurance companies can be about them. I asked her how important she feels "bedside manner" is in a specialist because Dr. N had not impressed me much in the empathy department, and Jason was really unimpressed from what I'd told him and now the doctor not even showing up to our room before the procedure (after someone had told us he would) did not help. She said it is a common problem as they think they are so elite. But if we felt he doesn't listen to us, we should also look into seeing someone else. I was mentally preparing to make sure he knew were going to decide with our rheumatologist over which drug to use, even if he got pushy or something.
After 5, I looked at the board and it said Phoebe was finished and right then Jason got a call that we could be brought to a consult room to see Dr. N. We went back to one of the rooms with the amazing Charlie Harper animal print couch. We waited in there for a SUPER long time. Jason and I played a Disney Movie vs Pixar Movie elimination bracket game. My winner was Beauty and the Beast and his was Lilo and Stich.... I think we both had The Incredibles as our #2.
Eventually the nurse came back and was like, "You guys are still in here? I tried to call you that Phoebe is in the recovery ward now (...there was no cell reception in these rooms). Did the doctor never show up? That happens sometimes, they get interrupted and can't make it over here. We'll call him for you, but you can go to Phoebe now"
😡 😡 😡 grrrrrr Dr. N
Anyway, we got brought back over there, along with another family. I was scared Phoebe might wake up or something without us, if she had been waiting long, but she was sound asleep for a good long while, even after we came. They had tucked her in under her blankie, which was sweet, but so funny to see as Phoebe only uses it all balled up for comfort snuggling. She doesn't actually like to be covered up to go to sleep.
Dr. N came and met us by her bed. He was looking rather rushed, still in his surgical scrubs and hair net. But I was happy, he was much more engaging to talk with (as opposed to being super focused on typing notes in his computer). I mean, I still have some reservations, but overall, I'm happy with how the conversation went, especially since he was telling us some better news.
Phoebe's eye inflammation is better. (!!!!!!( He could see signs of past inflammation but he did not think that her eyes were inflamed still. So Mtx is working, yay. He said he spoke with Dr. B this afternoon, and that she said we were resistant to trying adalimumab (Humira). I repeated what she said about it being like "injecting broken glass" and he was like "Hmm. That is not so much what my patients tell me." (but I am not sure how many of his patients are pediatric patients) but he said he thought it would be fine to go straight to infliximab (Remicade) as they were both used for treatment, though it was his opinion that Remicade had more side effects.
I said, "If it sounds like her eye inflammation is improved with mtx, do we have to start a biologic?"
He said, "Yes, because it's needed to treat the arthritis in her joints."
I said, "Dr. B said her joints were actually doing better."
He said, "But she said that she still had fluid...."
Okay, yes, the synovial fluid cyst on her hand. But that showed up only 2 mtx injections in, it hadn't had time to build up yet. Yes, her knuckles are still swollen though..... But maybe Dr. B can reassess if her eyes are not so bad, and we can wait longer before trying a biologic. (?)
The more I read about them, I basically want to throw up about having to decide between them.
I have started joking with Jason that if she does go on Remicade, Phoebe will definitely be guaranteed mutant powers, as she will have mouse antibody powers.
Dr. N wants us to continue to wean Phoebe from Lotemax. He gave us like a 10 week plan to reduce slowly to 1 drop a day. He said he wants to see Phoebe again in 2 months and that he would want to do this same procedure again in 6 months. 😢
By then it was after 6 pm, when he left. I think he had a very long day too.
Phoebe finally started to wake up. She was coughing a lot, so I think they did end up putting in the breathing tube? We got her water and she immediately wanted all the sensors and things off of her, especially where her IV tube was still attached to her hand. She did not like that AT ALL, and kept saying OW and OFF and trying to get the band aid off. So that kind of alarmed me beause Remicade infusions take several hours and now I'm envisioning something pretty traumatic of her crying for hours about the IV. Oh dear. I don't know what would be worse, a horribly painful shot or a long infusion! I guess if Humira injections are only once a month maybe we could consider driving out there... I'm really hesitant to do it ourselves because you have to do it slow and hold her still and that just sounds like it would have such a hellish learning curve. MTX is bad enough and that's quick. Anyway, I just don't know what would be best for her, it's so stressful.
Phoebe got to have a popsicle and we also gave her an applesauce. She was very hungry. We got discharged and I drove home her home, with lots of snacks to eat.
Phoebe has been wanting to listen to a 90 second song about dogs barking the alphabet after a short little intro verse. OVer and over and over again where ever we drive. Finally after a long time of dogs yet again, I convinced her to listen to one of the other songs on the cd about a farm, so then she just kept asking for the cow song, as it's the first animal in the song.
Phoebe was very hyper when we got home and wanted to play and eat. We watched some Cookie Monster. Jason got home with Cordelia who then also asked for food. So our girls went to bed at like 10:30. I felt so bad to have to give Phoebe eye drops again.
Since it was so late, I begged Jason to take some of the morning off work and go in later, but he didn't think it would make much of a difference.
Well, Friday morning started with a major Cordelia melt down because she didn't want to get out of bed, and just wanted to stay home, where she hadn't been for 2 days, so sure enough, getting out of the house was an absolute nightmare. Cordelia was still in a terrible mood arriving at school, but eventually got into the swing of the day. I was kind of in a fog myself, but somehow pulled off Circle Time.
On the way home, we stopped at the store and got stuff we were low on, like milk, and I picked up things for the most last minute Passover seder ever. Passover started that night and I didn't even have any matzoh! I wasn't sure if I could pull it together and was considering just doing a second night seder, but I was able to do it. Phoebe went to a doctor's appointment with Meme.... I was sad that she had to go anywhere near a hospital after spending all day there yesterday, but it was probably nice to see someone else getting the special treatment, not her. I guess she liked the bed going up and down.
Tomorrow we are going over to see the cousins for their Easter celebration and then I'm on spring break... after missing so much work this week.... followed by yet another week off unpaid. So costly! 😕
But we only have one OT appointment planned for next week. I cannot tell you how happy I am about that after this crazy week.
Sorry for the typos and grammar issues... this post was put together pretty late and I'm still tired, so not my best writing.
Sorry for the typos and grammar issues... this post was put together pretty late and I'm still tired, so not my best writing.
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