Monday, March 21, 2011

Rainy days and Mondays...

It's a dreary Monday morning, and I would like nothing better than to go back to bed and not deal with reality for a day. OK, maybe a week. Or longer. Please forgive me while I take a few minutes to whine so I can let go of things and get on with my day.

Last week, all I did was run from one appointment to the next, although it wasn't really different than most "normal" weeks for me. In an effort to make up all of my own doctor appointments that I missed last year, I finally went to the eye doctor last Monday morning. When I got home, there was just enough time for Collin and me to eat lunch, and then we were off to his therapy appointments that afternoon. Tuesday morning I went for my annual physical, and Tuesday afternoon Collin had a clinic appointment to have his bi-weekly labwork done. We got home from the clinic minutes after Bill picked Neya up from school to find out she had slipped on the sidewalk at the end of the driveway and fallen right on her front tooth. It was a tiny bit loose, and since it's a permanent tooth, I called the dentist. He saw her right away and did an X-ray; luckily the tooth is fine. Wednesday morning I spent two hours at a lab for a glucose tolerance test and other bloodwork since it hasn't been checked in over a year. Then Wednesday after school Neya had her seven year check-up, which thankfully showed that she is very healthy.

During Neya's check-up, I mentioned to our pediatrician that before Collin's eye surgery two weeks ago, one of the surgical staff mentioned that the EKG that was done in September to check Collin's heart before the high dose chemo and stem cell rescue showed that he has a hole in his heart. I had not been told anything about it following the EKG, so the physician's assistant told me it is a benign condition called patent foramen ovale; essentially it is a small hole in the heart that everyone has in utero, but normally it closes after birth. I ran it by our pediatrician to get his opinion; in the quick research I did on the condition, I read that in rare cases it can cause things like stroke or endocarditis, and I don't want Collin to have to deal with more than he already has to. Our pediatrician felt it would be a good idea to have Collin evaluated by a pediatric cardiologist, and made a referral for us. So Collin has a cardiology appointment at the end of April.

Thursday Collin had therapies and did very well. He had a great session with his Speech Therapist, and he is doing so well in PT that his Physical Therapist wants to see him once a week now instead of twice. He is so close to walking on his own, and just needs to keep practicing. Thursday night Neya wasn't feeling well, and Friday she stayed home from school with a fever and sore throat. I made another appointment with our pediatrician, which revealed she had strep throat and an ear infection. I had Bill take her, because I just couldn't face sitting in a doctor's office or waiting room one more time! Luckily we caught the strep very early, and I'm praying the rest of us don't get it. We made Neya stay in her room from Friday to Saturday night with movies and games, until she had been on the antibiotics for 24 hours and was no longer considered contagious.

Collin is doing pretty well following his eye surgery. I haven't noticed too much of a difference in the positioning of his eyes in the last week, but his right eyelid is now droopy and half closed. When I called to let his ophthalmologist know, he said some of the botox he had used to relax the muscle that pulls the eye in had probably seeped out of the muscle and is affecting the eyelid muscle. It will wear off over time, but now I don't know now well Collin will be able to see when I go back to patching his left eye like the doctor ordered. Collin had two therapy appointments scheduled for this morning, but I cancelled them because he was awake and vomiting between 2 and 3 this morning. Neya said she felt a bit nauseous when she woke up, so I kept her home from school again today to be safe. I will spend the day doing the pukey laundry, trying not to feel guilty and resentful when Neya tells me I love Collin more than I love her because I never do anything fun with her and I take better care of him than I do her, and trying to hold on to my sanity and not give in to the exhaustion that I can't seem to escape from.

Sunday, March 13, 2011

Sunday, March 13 - Maintenance Chemo Round 1, Day 55

Collin had his eye surgery Wednesday (March 9). We had to be at the hospital at 6 am; it was early, but since he couldn't eat anything after midnight, I was very glad not to have to wait until early afternoon. It's difficult to get a two-year-old to understand that he can't eat.

We arrived at the hospital, and registered with admissions. They took us to the pre-op area around 6:15. There was a lot of waiting, during which time a nurse went over all of the paperwork, and I tried to keep Collin happy and occupied by letting him listen to Wiggles songs on the iPad. The nurse got a kick out of him as he tried to sing and dance to his favorite songs while we waited. Finally one of the anesthesiologists came to talk to me. I told her that I wanted to escort Collin to the operating room like I had for his last few procedures. They always tell me it's not standard practice for them to allow a parent into the OR, but the doctor said that as long as one of the OR nurses was willing to escort me out to the waiting room as soon as Collin was asleep, she didn't have a problem with it. (In my humble opinion, having a parent escort a child to the OR, especially one who is very young and doesn't understand what is happening to them, makes the whole experience easier on everyone; the parent and child are way less anxious, and the doctors and nurses don't have to deal with a child who is screamng and crying because they are being separated from their parent in a scary situation!)

So when it was time for Collin to go to the OR (around 7:30), I put on the disposable scrub pants, top, shoe covers, hat, and mask, and I carried Collin to the OR while the physician's assistant wheeled the crib down the hall. I put Collin on the table, and talked to him and rubbed his back while they put a warm blanket around him. I hugged him and held his arms when it was time to put the mask over his face that would deliver the anesthetic gas that would put him to sleep. He always struggles against the mask because he doesn't understand what it's for, and the gas smells pretty bad, but at least my voice was the last one he heard before going to sleep. Then I gently layed him down, gave him a kiss, and thanked them for letting me be there before the nurse walked me to the waiting room.

Around 9:30, the ophthalmologist came to let me know the surgery had gone well. He was able to make the adjustments to tighten the muscles on the outside of each of the eyeballs, and inject botox into the muscles on the inside of each eyeball to help those muscles relax so the eyes could turn out. He said the botox will become effective over the next two weeks, and that the eyes would most likely turn outward too far before straightening. In about six weeks, the eyes should be in their straighter positions, and then he'll know if he'll have to go back in to make any further adjustments. He gave me a tiny tube of antibiotic eye ointment that needs to be administered to both eyes four times a day, and told me to continue putting lubricating drops in the right eye every two hours in between ointment doses to keep that eye from getting too dry since it still doesn't close or blink all the way.

When the ophthalmologist was finished talking to me, a nurse brought me to the Post Anesthesia Care Unit (I always emphasize that I want to be with Collin when he wakes up as well!). Collin started opening his eyes and coming out of the anesthesia pretty quickly. I expected him to be very groggy and fussy as he was after his last few procedures (the anesthesia used during a painful medical procedure is longer acting and different than the shorter acting propofol they use on Collin during his MRIs when they just need him to be still and there is no painful stimuli), but he woke up relatively quickly and calmly. They moved us to the recovery area, and it wasn't long before Collin was sitting up, talking, and taking sips of water. After a little while, the nurse took the IV out of his foot, and I was allowed to get Collin dressed and take him home, where he ate a big lunch and went back to playing as normal like nothing had been done to him.

We marveled at how much of a change there was in Collin's eyes immediately following the surgery. Right away both eyes were noticeably straighter. There wasn't a lot of swelling either. He occasionally has some bloody tears in the corner of his eyes, and his eyes seem to get very red in the inside corners at times, especially when he is tired. the ophthalmologist was so pleased with how Collin looked at his first post-op appointment Friday afternoon that he said he doesn't need to see Collin again until six weeks post-op unless anything changes. He also said I can go back to patching the left eye three hours a day starting next Friday, because Collin is still using the left eye more, and the right eye needs to be worked more to preserve the vision in it. Hopefully patching will be a little easier on both of us now that Collin won't be left staring at his nose for three hours with the uncovered eye!