The Three-Hour Tour

Just call me Gilligan.  Or really I'd prefer to be the millionaire.  Or even just his wife!

I decided to get Timmy's bloodwork done this morning, as I called the hospital and the lab has to have some of the specific labs drawn before noon so they can be sent out.  Timmy had an appointment with Dr. Morales at 11:30 for a Synagis (medication for RSV) consult so I figured if I picked Marianne up at 9:00, got her and the kids back home around 9:30, made it to the hospital at 10, left the hospital by 11:00, arrived at Dr. Morales's office at 11:25, we'd be looking sitting pretty.

Much like the boat tour, this tour didn't go as planned and took far long too!

All the kids were up by about 7:30.  Plenty of time for breakfast and getting everyone dressed.  Timmy woke up around 8:30 so we were a little late heading out after I fed him but still on the road by about 9:15.  Marianne was ready to go too so I was able to drop her and the kids off at our house, show her where snacks were, plead my case for the nightmarish mess in the living room and head to UMC by about 9:40.

Parking was our first issue.  The garage was completely full and it took me a good 10 or more minutes of driving around to find someone pulling out.  Wouldn't you know that, by the time I had Timmy and all his stuff loaded into the stroller two spots opened up just a few spaces away?

It's been a couple of weeks now since Dr. Ammoury's nurse gave me directions to the lab so I had to ask.  Glad I did because there were no signs telling me it was downstairs.  Checked in at centralized check-in and we were in the phlebotomy waiting room at 10:23.  Cutting it a little close, but I figured there weren't too many people there and, after all, they just needed to draw blood.

I like to take Timmy out of the stroller when we're waiting.  It's just nice to get some extra one-on-one snuggle time and then it helps speed things along when they call us back as I don't need to unbuckle him.  Not today.  No sooner had I seated him on my lap then he through up all over himself and my pants.  Missed the seats and carpet, but we definitely had a mess to clean up.  I had extra clothes for him but nothing for myself.  So glad I wore khakis today.  =(

Timmy was finally called back at 10:43.  I could overhear the phlebotomists discussing "pyruvate" and "lactate" so I knew they were talking about Timmy.  Apparently no one was sure what the minimums were for some of the tests they needed to run.  They really don't want to take too much blood from Timmy and I really don't want them to either.  However, at 10:55, when they hadn't even attempted to start taking blood, I told them we had another appointment at 11:30.  Asked if we really did need to come before noon or if we could come back later.  They were very nice and said yes, they do need the blood before noon and, since tomorrow is Friday and they won't be able to run the tests over the weekend, it would be best to bring Timmy back on Monday.  Great that James will be home then.  Not so great that I've now had a babysitter for an hour and a half that I didn't need and we had plenty of other things to get done at home.

We blazed out of there - once we passed the older woman in the hall.  Not to be rude, but I really do feel that anyone who is walking slowly, be if from old age, infirmity or just the sheer joy of being leisurely, should walk to the side of the hall, street, sidewalk,...

I noticed the clock on the front panel of the car read 11:06 when I started the AC for Timmy.  He still has a bit of a cold so still making lots of secretions and requiring extra suction.  Suctioned and loaded, we pulled out around 11:13.  As long as I could find Dr. Morales's office right off, we should be fine.  Never factored in that I would hit EVERY red light between hear and there, but we made it.

Dr. Morales is another pulmonologist in town and one of few who give the Synagis shot that Timmy's pediatricians have recommended he get, as a former preemie with lungs that are more fragile and would have a harder time combatting RSV (respiratory syncytial virus).  Her staff was so nice.  They got us back right away and did their thing.  Timmy weighed in at an even 7 pounds.  He was very smiley with everyone.  They had a heck of a time getting the pulse-oximeter to stay on long enough for a good read, but they did eventually get one.  And then a few more and our half-hour Syngagis consult turned into a 2-hour visit where we left with almost more goodies than could fit on the stroller.

I really liked Dr. Morales.  She took the time to really go over Timmy's discharge summary and explain the reasoning behind giving the Synagis shot.  The good news is that it's an actual medication, not a vaccine, so it doesn't tend to have the negative side effects that come with vaccinations.  On the downside, it's only effective for about a month and has to be repeated every 28-30 days during RSV season (November to April).  It is also an expensive shot - roughly $1500 per injection - so one has to qualify for it and we definitely feel that Timmy does.  He will be older than 6 months before RSV season starts (by a few weeks), but the trach alone buys him the excuse.  So we will be back in November for his first dose.

Dr. Morales was very concerned with Timmy's oxygen saturation while we were there.  He mainly fluctuated between 83% and 87%, occasionally getting up to 91%.  I remember them not being too impressed with those numbers in the NICU either.  80's aren't terribly detrimental unless they are prolonged.  Timmy's O2 sats have been stellar since he was trached in mid-July so I'm not worried that it has been more than a few days and that this cold is to blame.  Dr. Morales listened to his chest and heard some wheezes in his upper left quadrant.  Adriana, one of the nurses, brought in a nebulizer with the cutest little rhino mask and we tried to see if having that break up some of the mucous followed by a good suctioning might bring up Timmy's sats.  Only briefly.  The doctor repeated a couple of times that if things appeared to get worse, I should take Timmy in for a chest x-ray.

She called Dr. Brown, the pulmonologist who works for the university whom Timmy has already seen, and was unable to speak with him directly but she spoke to a colleague and Val Vickers (seriously love the woman!) in order to avoid stepping on any toes and they concurred that Timmy should probably come home on a pulse oximeter and that we should also have oxygen in the house at the ready should he need it, rather than have him need it and need to have him admitted to the hospital.  Especially now that we will be entering the cold and flu season shortly.

She also called Dr. Peterson, Timmy's pediatrician, to get her input and, between the two of them, it was decided that we should just go ahead with the chest x-ray rather than wait.  Fabulous!  I really appreciate all the phone calls Dr. Morales made and the time she took with Timmy.  Not thrilled in the slightest to add to his home equipment but I would much rather have him have what he needs.  Just hope we can kiss the 0.5 l/min of oxygen good-bye very soon!  I really think he'll be fine once he can kick this cold.

I was given several sample boxes of Xopenex, a nebulizer, to use at home along with another cute zebra trach mask and a generic to hopefully get us through this.  Adriana told me to feel free to call if we ran out and they could call in a prescription and then she told me on the way out that they always have samples and I could just stop by and get some if I ended up needing more.  I so hope not!  They gave me five boxes with three vials each.  I'll use one vial per day total.  Between the Ursodiol and the Xopenex on top of all of Timmy's other equipment, I'll be more than happy to start ditching things again!

 We left the office at 1:45.  I climbed in the van to start the AC before putting Timmy in and...nothing.  Sigh.  At least I knew what it was this time.  I popped the hood and adjusted the connector cables on the battery.  Before I'd even had a chance to close the hood, the receptionist was outside asking if I needed to call someone.  So sweet.  I explained that this was not a first and James had told me it was just the cables.  Hoping the van started right away.  It did.  Definitely need to get rid of a little corrosion in there and tighten some things up.  This could get really annoying!

The Radiology Ltd. ladies were great too.  Aimee checked us in and I overheard that she is the head of her son's PTA and they are trying to put together a cook book for a fund raiser.  Guess those things can get pretty pricey!

Patricia was our radiology technician.  It was so funny.  I saw her come out and there were only two of us women in the lobby at that time so I was hoping it was our turn.  She kept looking around and then finally said, "I'm guessing it's the one in the carriage."  She had been searching for a man and couldn't see anyone.  She was super sweet.  Very spunky lady.  And one who can relate in a way to Timmy.  She is missing all of her colon, oddly enough.

Two quick pictures and we were done.  She was right on top of them.  Printed them out and sent them right away for stat evaluation.  I had just enough time to get home at 3:00, run Marianne home and get us all back home before Dr. Morales called at 3:30 to tell me that Timmy's lungs are clear.  (As we figured.)  No pneumonias, but some hazy patches, most likely from all the mucous. 

Right after I hung up with her, the phone rang again from our equipment company to let me know that they had received the order and a respiratory therapist would be coming by at some point to set things up.  As I was waiting to find out what our new rental fees are, I heard my neighbor, Denise, outside calling me to let me know the lights were on in the van still.  Bless that woman for looking after all of us!  I went outside while I was still on hold, turned off the lights in the van, thanked Denise and looked up to find Landon climbing into the stale water left in the ice chest from the melted ice from Timmy's blessing luncheon.  He looked like he was having so much fun in his little pool, what choice did I have but to grab the camera?  He's such a thinker!

Feeling content with cute photos, I finally coaxed him out and drained the ice chest.  (Yes, probably not the best thing to leave an ice chest with several inches of water in it available for little kids to play in.)  While I was doing that, the kids went inside and found another way to get their water fix - fill their cute little water bottles.  You know, the kind that has an opening at the top that's about as wide as a nickel.  And preferably from the water dispenser in the door of the refrigerator.  More fun that way as one has to guess where the water spray will be and adjust the water bottle accordingly.  Apparently they missed most of the time.

I told them they could play with their water bottles on the back porch.  This resulted in more water on the kitchen floor. 

Timmy and I were both hungry at this point - 8:30 to 4:00 on a bowl of Raisin Bran just doesn't work - so I ignored the latest pond in my kitchen and grabbed another bowl of cereal, fully intending to make dinner so I didn't want to fill up.  After several slips in the water and more water dumped on the kitchen floor, I decided cereal was going to be dinner for all. 

Bath time came around 5:00 today.  Just so tired and the kids were already wet and messy from their water fun and Cocoa Puffs.

It was once again time to feed Timmy after baths so I let the kids watch AristoCats.  So discouraging to look around the living room and see this enormous mess.  I had really thought we would be back from Timmy's appointments by 1:00 in time for naptime and I could get the clothes folded or something.  Nope.  At least James is understanding and sympathetic when he gets home and finds the house even worse than when he left. 

He helped me get the kids to bed and cleared the rug in the living room before the Preferred Home Health RT came.

Another fun photo shoot while we waited.  Everyone else was asleep so I could just play with Timmy.

I LOVE these next two.  Such sweet little smiles!

I guess there has been a big need for respiratory therapists today so he wasn't able to get to us until a little after 9:00.  He sounded very knowledgeable and got everything all set up for me.  So not looking forward to having Timmy connected to an oxygen tank all the time.  One perk is that the moisture canister connects to it and it is soooo much quieter than the compressor.  Not to mention that it comes with 25 feet of tubing that allows it to stay centralized in the living room so we don't even have to sleep in the same room with it!

So to tally up the equipment we now possess:

O2 compressor and portable tanks.  Hmmm...missed the O2 reducer.

One of the tanks is on the bottom in the backpack.  This is also the pack for the pulse oximeter.

Timmy all hooked up ready for bed.  Here's the actual pulse ox.

Still have the suction machine and apnea monitor.  On top of that we now have a nebulizer.  Didn't get that in the photo, but the trach masks and Xopenex for it are what is on top of the apnea monitor.

Look at those sats!

And we still have out trusty moisture compressor.  May still need it, depending on how Timmy's secretions are with the moisture that comes out of the O2 compressor.

Timmy fell asleep during the pulse-oximeter lesson so he is already in bed without me.  It's just been another action-packed day of adventure.  Now time for some sleep before my sweet little guy wakes up again!