T&A: Day 4

Nolan's "prize" from his Aunt and Uncle

Day Four is dawning a much better day: Nolan is eating again, and even ate a whole waffle at breakfast time. We're still having difficulty with the fluids, but he's eating Jello and Popsicles, so that should cover the fluid requirements.

He is actually playing this morning and acting silly again, which is a relief. I am concerned about some drainage from his left ear: the Floxin ear drops won't even go down the ear canal. I certainly hope he isn't getting an infection in that ear so soon after surgery. He hates the ear drops more than any other medication, so getting an infection would be a real bummer (we'd have to increase the number of drops).

Here's to a much happier day- hopefully this means we've turned the corner with recovery!

T&A: Day Three

A rare moment of calm on Day Three.

Day Three is not going as well as the first couple of days. Lots of crying, screaming, and generalized unhappiness seem to characterize today. Nolan's also refusing popsicles, which are the only fluids he's been getting (he won't drink anything at all, even though he'll clutch his cup for comfort).

Let's hope that codeine kicks in so the little guy can take in some fluids...

Tonsillectomy/Adenoidectomy and PE Tube Surgery

Nolan was surprisingly cooperative and in a good mood on Tuesday morning as we headed up to Buffalo Children's. He allowed the nurse to take his vitals, we discussed the runny nose issue (his lungs were clear, so we were allowed to proceed), and we headed down to the surgical waiting room. Things were on-time, so the little guy only had to wait for 2 hours and 15 minutes once we arrived at the hospital, and Nolan was entertained by Mickey Mouse cartoons on the waiting room television.

Our ENT came in and took our little guy from us, and we waited for about an hour until the pager went off to let us know he was out of surgery. Everything went very well, and Nolan was taken directly to the PICU (Pediatric Intensive Care Unit) for monitoring. He was awake and screaming when we arrived, both in pain and confused from the anesthesia.

Because he has severe central apnea, the anesthesiologist only gave him half the dose of Morphine most children receive. He also received no pain medication after the surgery, to ensure that his breathing was stable. Our ENT prescribed Tylenol with Codeine for pain relief, but the Codeine has been cut in half to reduce any potential complications with respiration.

He was quite upset for the first two hours in the PICU, crying and becoming hysterical. He looked like a Very Sad Boy, with bloody ears (from the PE tube placement- this can be shocking the first time you go through the procedure, but sometimes the ears are a tad "messy") and a swollen neck. Luckily, the Tylenol with Codeine took over and he fell asleep.

He slept for about 2 hours, with no desaturations or apneas. When he woke up, he was a tad fussy, but not hysterical. A few popsicles and watching Cars on the PICU television settled him down nicely. He was fussy off and on throughout the day, and fell asleep for the night at 11:00pm.

He set off the alarms quite frequently during the night, but only once for a desaturation and only about 5-6 times for apneas. The alarm was constantly going off for "extreme brachycardia" (slow heart beat) which caused me some panic. The nurses explained this is a common (and normal) heart rhythm in children.

In the morning, he ate some jello and had a few more popsicles. The attending came in the morning to discharge us, and we headed home. Nolan was doing extremely well on the car ride home, even crying for french fries from McDonald's. We kept him to smooth foods that first day, just to be safe with his throat- so no fries for poor Nolan.

He ate macaroni and cheese for dinner last night and had oatmeal for breakfast this morning. He is refusing to drink anything, but will eat Popsicles. We're using Popsicles for his hydration needs, and hopefully it will be enough to stave off dehydration. Keeping up on the Tylenol with Codeine seems to be the most important thing at the moment, as he gets cranky as he gets toward the end of the 4 hour interval between doses. I have been warned, however, that the real pain of a tonsillectomy occurs later in the week- something that someone else who has been there confirmed. Sometime around day 7-10, the scabs in Nolan's throat will fall off and his throat will be extremely raw- this is also the time he is in danger of bleeding.

For now, we are managing quite well and he is becoming quite the Popsicle addict. Those Mighty Minis ("slow melt") are wonderful. I don't know what we would do without them!

Tonsillectomy Update

Recovering with a "Mini Melt" Popsicle

This is short and sweet because we're all tired. The tonsillectomy/adenoidectomy/PE tube placement went exceptionally well, Nolan had a completely uneventful night in the PICU, and we are home. He's eating popsicles and is doing amazingly well when we keep up on the Tylenol with Codeine. So far, this has been much, much easier than I expected it to be!

A more detailed update to follow.

Pre-Registered for Tuesday

I was a wee bit concerned this morning when I noticed that Nolan's cold seems to have gotten worse. He's slightly warm (99.2) and his nose is flowing. His tonsillectomy is on Tuesday, and the pre-surgical documentation states "Call the surgeon if the child has been ill within 7 days prior to surgery."

Beautiful. My mother-in-law is flying in on Sunday to help take care of Matt during the surgery, so I was really, really hoping we wouldn't have to cancel surgery.

I called our ENT's office and told them Nolan had a cold. She asked if he was coughing or had a high fever. Since the answer is "no," she said the tonsillectomy is still a "go" for launch. Some congestion or a head cold are acceptable (after all, the chronic congestion/colds are the reason we are doing the PE tubes and adenoidectomy). The low-grade fever is also OK, as long as it doesn't get above 101.5 F. Nolan normally cycles between 96 degrees-100 degrees anyway, so we're not too worried about the 99.2 degrees he's currently sporting. And no, we never have figured out why he has cyclical temperatures- it's just another part of the whole "mystery diagnosis" thing.

They pre-registered him and gave us the instructions and time of the procedure. No solid food or milk after midnight, diluted juice allowed until 5:30am. Do NOT give him his Nexium (this is a change from our MRI instructions, when we were told to give him the Nexium). We will check into the hospital at 7:30am and the surgery will be performed at 9:30am.

After a $250 co-pay, we're all set for the surgery on Tuesday. I am really praying that the rest of this cold disappears before Tuesday!

Preparing for Nolan's CPSE: Deciding on Services

Nolan's CPSE meeting is rapidly approaching, and our wonderful speech therapist asked us to start thinking about what we would like for services next year. We currently get speech therapy an amazing three times per week, which is quite good. Many children only get speech therapy once per week. Our county does not have any teacher of the deaf services for children younger than kindergarten, so our speech therapist covers all roles with ensuring Nolan's language development stays on track.

When Nolan graduates to the school district, we would like to maintain two days per week of speech services. While his language is on par with his hearing peers, he has lost some sounds that he used to have- most notably /f/ and /v/. These are more difficult sounds for a child to obtain, but Nolan used to have them and has since lost them. "First" now comes out as "horse" and "for" is "hor."

He never had a true /v/ sound, but used to substitute /b/ for /v/, which is normal for his age- "biolin" for "violin." He has now lost the sound entirely. He substitutes /h/ for /v/ now- saying "hiolin" for "violin." Since he is not voicing the letter in this position, it is likely he is not hearing the /v/ or the /f/ in these words. He also occasionally confuses /m/ and /n/, saying "nilt" for "milk" and "meed" for "need."

Because of the articulation issues, we are likely to maintain the two days per week of speech services. I don't have the official articulation scores yet, but he will probably score lower this time than he did last time, due to the loss of those sounds.

The next pressing issue was whether to include classroom services by our therapist. Nolan doesn't actively engage during library story hour or during circle time at his 2 year old preschool program when I am present. I have mixed feelings on the subject, because I don't know if having classroom services would be more distracting or helpful to Nolan. I decided to ask his preschool teachers about the idea, since they see Nolan during the entire portion of the 2-year old program and I am only present for the parent/child portion.

They did agree that Nolan is clingy and doesn't participate when I am present. However, he does just fine when I am not there, behaving and participating in the same manner as his peers. This doesn't surprise me, since we have the same situation with (hearing) booth tests. They feel he doesn't need any help in the classroom. They also said they were impressed at how much Nolan knows and understands (such as colors/shapes/letters), and that many of the children without any "special needs" do not have these concepts. Of course, with one-on-one therapy three times per week in a quiet setting, he's ahead of the game when it comes to many of the more academic pursuits.

Because of this, I think we will request the 2 days of speech therapy (45 minutes each session) and not ask for the classroom services. If we feel he isn't doing well at preschool, then we'll reconsider at a later date.

This and That

This week seems insanely busy. Between therapy, preschool, library story hour, and Mothers of Preschoolers (MOPS), my week is so full I don't have time to do laundry. My next project will be trying to have a lighter schedule!

Nolan's CPSE meeting is set for April 27. I am getting very anxious about this meeting, as we are in the middle of testing him with the PLS-4 and he is doing rather well. While I'm thrilled that he is making leaps and bounds with language, I'm also concerned that we'll lose services. Our SLP wants to point out his "language holes" and articulation issues to keep his services intact- otherwise he'll get absolutely nothing in the years preceding Kindergarten. I'd like to have him monitored, at the very least, until he's in Kindergarten. I'd rather prevent a delay than work to remedy one.

Nolan has his tonsillectomy scheduled for April 13.. which is next Tuesday. He's also developing a runny nose. I truly hope a cold doesn't delay the operation, especially since we have family coming in from out of town to take care of Matt during the procedure. Mr. Nolan has also been rather cranky- I'm not sure if he is getting sick or if he is just trying to become the poster-child for the "Terrible Two's."

He also had a complete freak-out attack at MOPS when the nursery worker tried to change his diaper. He shook, cried, and went hysterical for a full 45 minutes after she tried to change his diaper. This is going to present a challenge when we go to California for John Tracy. I either need to get him toilet trained (unlikely) or more comfortable with others changing him. He has a bit of "white coat syndrome" from recent medical procedures and won't let anyone but me take care of him.

I also need to call the pediatrician to get a TB test scheduled for the John Tracy Clinic Summer Session, but I think I will wait until after he is recovered from the tonsillectomy before I have that test performed. I don't want to take him into the pediatrician's office until we are free and clear from the tonsillectomy (we simply don't need any more germs to contend with- preschool offers enough)!

Nolan's speech continues to blossom and we are getting longer phrases from him. Recent "Nolanisms" are:

• When asked "How old are you?" he answers with "THREE!" instead of two, with a devilish grin.
  
• I asked him if he would stay little forever. He answered, "No, I big boy. I be Spiderman (when) I grow up!"
• "Dinosaurs eat tigers for lunch."
• "I want candy for lunch."
• "I want to go to Disneyland tomorrow."
• "I want coffee in my (sippy) cup."

He's definitely developing more personality!