With Timmy in the boat...

ARRRRRR!!!!!!!!!! Come with Cap'n Mortimer and we'll set sail on a fun-filled, swash-buckling, treasure-huntin', another-hyphenated-adjective adventure on First Mate Timmy's Seven-month Birthday Pirate Ship. If ye lily-livered selves dunna wanna come, this cap'n'll make ye walk the treacherous trach plank o're the Sea O' Dirty Daipo, feed ye to the deadly one-armed Suction Sea Monster, or shoot ye out of Cap'n M's Mickey Button Cannon. And I assure ye there'll be no buddies fer ye 'round that button, ye can count on that! AH HA-HA-HA-HA-HARRRRRRR!!!!

Here be some pics that survived the ordeal:

Timmy's Set-Up

Our family has been blessed with meals brought by several wonderful people--some of them we already knew, and some of them were complete strangers to us. Thank you, thank you, thank you! It is hard for this moose to explain how much it helped us to survive when we did not have to worry about cooking or making big grocery store trips. It was also wonderful for Timmy to have visitors. He loves meeting new people, and sometimes he gets bored during the day with just his mommy and me to entertain him. (While I am on the subject, several people have asked if it is okay to visit. We love visitors! We just ask that you let us know before you come and that you please not visit if you are sick or have a cold.)


It seems that one of the things our visitors have been most interested in (besides meeting myself and Timmy) is Timmy's set-up. So this moose thought it might be a good idea to show all of my fans what we have done to get Timmy through his day.


Timmy sleeps in his mommy and daddy's room at night. The machine in the upper right corner is the air compressor that provides mist (through the blue tube) for Timmy to breathe. His feeding bag hangs from an IV pole, and the white machine at the bottom of the picture is his pulse ox--it alarms and tells us if Timmy's heart rate or oxygen levels get too low. To the left of his air compressor is a little caddy that holds suction catheters, saline bullets, and other supplies. Usually the suction machine sits behind that caddy at night, but since this picture was taken during Timmy's nap, the suction machine is on the floor (but really hard to see).



This is a close-up of one of our supply caddies. Meijer was kind enough to sell a caddy that is perfect for holding trach supplies! In two of the front compartments, we keep suction catheter kits (each one holds three kits perfectly). Next to that is a compartment full of saline bullets and HMEs (the things that attach to Timmy's trach). There are two long compartments in the back that are perfect for holding diapers and wipes. Since most of Timmy's supplies are in his room, we have two of these caddies (one for the living room and one for Timmy's parents' room). If we stock these caddies several times during the day, we do not have to spend all our time running around looking for suction catheters!




Timmy has to share his room with his mommy's study. This is his half. He has only used his crib a couple of times for naps, but if we ever get night nursing, he will sleep in his crib at night. (We make him sleep in his crib for naps once in awhile so that he will get used to it.) We do not use the changing table for his diapers, but it works really well to do trach and g-tube care! We also keep all of Timmy's diapers and covers in the shelves of the changing table. And yes, Timmy has two mobiles. The first one his mommy and daddy bought for his hospital room in Columbus. But then the NICU in Cincinnati had a mobile in his hospital room already. Because he got some nasty infections in Cincinnati, they were not allowed to use his mobile for any other babies, so they told his mommy and daddy to take it home or throw it away. We kept it! Timmy's emergency bag always sits on the floor between his changing table and crib--if we always leave it in the same place, it will not be hard to find in an emergency! And the elephant on the wall serves two purposes. When we are doing Timmy's trach care, we take the elephant off the wall and use its hook to hang his feeding bag!





These white drawers hold a lot of Timmy's medical supplies. This moose suggested buying drawers like these to Timmy's mommy and daddy, and they think it was one of the smartest things they ever did!





Here are the rest of Timmy's drawers. Some of them hold more medical supplies, and the rest hold baby things like clothes and blankets.




This is the wall above the second set of drawers. On this dry erase board we keep track of everything we have to do for Timmy. Some things have to be done twice a day, some once a day, some MWF, some TF, some every 10 days, some every two weeks, and some once a month. This is where we keep track of everything! On this wall we also keep all of the phone numbers, emergency contact information, medication list, feeding plan, and "Timmy in a nutshell". This last one is a paper that gives the most important information about Timmy in case an emergency happens where Timmy's mommy and daddy are incapacitated and someone else has to know stuff like whether or not Timmy can be ventilated from his upper airway (he can!).





Behind a chair in the living room is where we keep all of the supplies that do not fit in Timmy's drawers. Most of these boxes hold extra suction catheters. The white box is Q-tips! Timmy's mommy and daddy use lots of Q-tips. (They figured out that they go through a minimum of 1,080 Q-tips a month.) Because the supply company does not provide Q-tips, they went on Amazon and bought a big box of 10,000 Q-tips. Now we do not have to worry about running out!




After a few weeks of being home, Timmy's mommy and daddy got tired of trying to figure out what to do with his feeding bag and pump. So they bought these nifty hooks and put them up all over the apartment. Now almost anywhere in the apartment where Timmy is, there is a handy dandy hook to hang his stuff from! We love portable babies!





Timmy has lots of paperwork. And there is not enough room for all of it in his mommy and daddy's file drawers. So the file box holds some of the most important paperwork. And the blue expanding file holds the most-most important paperwork. Timmy's mommy and daddy have figured out that hospitals and doctors' offices are not always good about transferring paperwork from one place to another. So now they insist on having copies of all the most important stuff, and bring it with them to every single appointment. They also have two notebooks where they have written down everything that has happened to Timmy. This way when a doctor asks a crazy question like "What was the reason Timmy was reintubated back in October?" they can look it up and give an answer!






Some of the parts of Timmy's medical equipment have to be cleaned fairly frequently. Most of them we disinfect with distilled water and vinegar. Here is a picture of some of the parts drying. In the pot is not a yummy concoction for this moose to eat. Instead, Timmy's mommy was boiling some of Timmy's old trachs so that they can have some spares in case of an emergency.





And when we say we go through gallons and gallons of distilled water and vinegar, we mean it! Hmmm...it looks like we are running low on vinegar. This moose better get his heels clicking and run on over to the store to pick up some more.





And last but not least, Timmy and I have a new big brother! This is Derek the Moose. Some of Daddy's friends at his work got Derek for Timmy and I to play with. He is lots of fun, but he scared us one day when we came home and it was dark--we thought someone was
sitting on our couch!

Lessons learned

We've been home now for two and a half weeks, and we've had a bit of an interesting time adjusting to our new life. Here are some of the lessons we've learned over the last few weeks!

1. It takes a lot of medical supplies to get Timmy through one month. Boxes and boxes. We were home for nearly two weeks before we had a day without a delivery from UPS.

2. Whoever decided on supply limits has never tried to raise a baby with a trach and g-tube. Only 150 suction catheter kits per month? Ridiculous! And if our pulse ox sensor has already lost its stickiness by the second day (and completely broken by the third) how are we supposed to survive on two per month?

3. A follow-up to #2. Just because your supply company tells you that your insurance company denied more supplies (suction catheters, pulse ox sensors, trach ties, etc.) doesn't mean they actually did. The result of this discovery? We've discovered that our supply company has lied to us on numerous occasions and our insurance company has given us their blessing to order as many supplies as we need!! Who would have thought that the insurance company would be the good guys?

4. Growing up, one jug of vinegar would last my family years. Now we go through one a week (along with several gallons of distilled water). I never knew before how useful vinegar water could be in disinfecting syringes, suction tubing, and all sorts of other things. I can never shake the feeling, though, that I should be dying Easter eggs with the vinegar.

5. It's a bad idea to run the air compressor, dishwasher, and dryer all at the same time.

6. Organization is the key to everything. Investing a small fortune (not really) in lots of clear plastic drawers and a dry erase board was the smartest thing we've ever done.

7. It never fails that Timmy's pulse ox will give false alarms a million times a night (when we're theoretically sleeping), but works like a charm when Timmy naps during the day (and I'm already awake).


7. If you take a child with a trach and g-tube anywhere (even just to the doctor's office) expect to get stared at. A lot. So just get used to it. (On a side note I thought everyone was staring at Timmy because he looked so cute in his little bear hat, but Mark pointed out it was all the tubing. Sigh.)

9. Just because the hospital sends you home with a trach spacer and a thing of Flovent doesn't necessarily mean they're compatible. Figure this out before you leave the hospital.

10. When you call the NICU in the middle of the night to figure out what to do with said Flovent and they tell you to whack the cap off with a screwdriver, whack very carefully. Otherwise you end up with a broken canister of Flovent that is still incompatible with the trach spacer. And the 24-hour pharmacy won't be able to help you.

11. Somehow, regardless of how easy it is to pour milk into a feeding bag during the day without spilling, it's impossible in the middle of the night. Put down a towel to protect the carpet.

12. The sun really does get stains out of cloth diapers! I had heard rumors of this miraculous phenomenon, but I was dubious. It works amazingly! Now I'm trying to see if a combination of the sun and lemon juice will get the tomato stains out of tupperware.

13. Timmy loves people, especially people he doesn't know. He gets a bit lonely home with me all day during the week. His happiest days have been the ones when we've been out and about doing something.

14. We're wracking our brains, trying to figure out how we got peed and pooped on so infrequently at the hospital, but how it happens so often at home. We haven't found a solution to that one yet. :)

15. The absolute hardest thing about having a kid with a trach and a g-tube is not the medical care, though that can definitely be overwhelming at times. It's the paperwork. And the neverending phone calls. On a regular basis we make calls, write letters, and send faxes to our supply company, our insurance company, our nursing agency (though we still don't have nursing), Medicaid, Help Me Grow (early intervention), Social Security, the Bureau for Children with Medical Handicaps, the speech therapy department at Nationwide Children's, our pediatrician, the pharmacy, and our several doctors in Cincinnati that we will be following up with. Crazy!

16. No matter how many other toys we give Timmy, his favorites will always be his trach, G-tube, and the associated tubes and wires.

And our favorite quote so far from our crazy supply company?

"Do you want the sterile trachs or the non-sterile ones?"

Really?

Firsts

To my long-lost fans, I am sorry that it has been so long since this moose has posted an update. As I am sure you can imagine, Timmy keeps us very busy! Timmy is doing great in his new home. For the first several days, his eyes were big as saucers, and he kept looking around. He even had trouble sleeping because he just wanted to be awake to take everything in. Timmy's mommy and daddy are gradually adjusting to the chaos. So far they have received nine big boxes of medical supplies (for the first month!). Once they got everything sorted and a system in place, things got a little easier. On another day I will show you pictures of Timmy's new room and the way his mommy and daddy set things up. But I think that first you will want to see what Timmy has been doing. Because so much has happened, it will be impossible for this moose to describe everything. So instead I will put up some pictures of some of Timmy's "firsts" over the last few weeks. (Besides, everybody knows that looking at pictures is way more fun than reading what this moose has to say.)

Timmy's first time meeting his cousins. (And his first time meeting kids!) He loved them!!





Timmy also loved cuddling up with his Aunt Rebecca!



Timmy's first cloth diaper. We started cloth diapers on the third day home, and we have not looked back! Timmy is also sporting a button buddy, sent by some friends of Timmy's daddy and mommy from high school. They go under his g-tube disc and they come in all sorts of fun patterns. We love them! Timmy's mommy and daddy are definitely going to have to get him some more of these!


Timmy's second cloth diaper. It is hard to tell in the picture, but it is a Grinch diaper. Timmy's mommy bought it for a going home present for him when we thought Timmy would be home for Christmas. He just barely squeezes into it now, so we are trying to get some good out of it while we can!



Timmy's first walk (we can take him outside now!). He did not stay in his stroller very long, and he was not quite sure what to think (it was a windy day). He fell asleep in his mommy's arms after about ten minutes. But we sure had fun!


Timmy's first time falling asleep in his swing (such a nice, normal baby thing to do!)




Timmy's first homemade baby food (sweet potatoes):



Timmy enjoying his first taste of sweet potatoes! (Timmy usually eats several bites. But we have also discovered that he seems to like eating food off of his bib more than off of a spoon. Hey, at this point we will take any mode of oral eating!)


The carnage after Timmy's first emergency trach change. (Okay, it was not really an emergency, because Timmy's mommy and daddy changed the trach before it became a true emergency. But there was a big ole' mucus plug stuck to the bottom. That's Timmy up in the upper right corner, sleeping all the excitement off.)



Timmy's second walk. (Okay, so this was not exactly a first, but he was just so darn cute that day this moose could not resist adding the picture!)

Timmy's first time playing a real piano! (We also discovered that as with the toy piano, Timmy prefers to play with his feet!)

Home!!

After 187 days in the hospital, we're finally home!! We made it home in the middle of a rainstorm around 6:30 Monday evening. The last few days have been a bit crazy, and our living room is currently buried in boxes of medical supplies. Everything is all a big mix of emotions right now--we're thrilled to be home, but we're also feeling pretty overwhelmed and exhausted (from alarms going off all night long). Mortimer is pretty tuckered out, and he and Timmy are both taking naps right now (thank goodness for naps!). We'll give a more detailed update when we get the chance.


For those of you who may need/want to get ahold of us, phone is probably best right now. Free time for the computer is pretty scarce. And for our friends in Cincinnati who might be reading this, Timmy is pretty bummed that he doesn't get to see you all every day. It's just not the same to put him in his Bumbo at 10:00 in the doorway of his nursery. There are no people to talk to! But mostly Timmy is thrilled to be home. His eyes have been as big as saucers for two days straight.


Thank you all for your thoughts and prayers over the last six months. One chapter is over now, but in some ways we feel like the craziness is just beginning!

It's beginning to look a lot like Christmas!!

Timmy's mommy and daddy have had lots of fun over the last few days getting supplies together and getting stuff ready for Timmy. It feels like Christmas (even better!) because they have had all sorts of fun stuff to open, and this moose has been testing it all out for Timmy.


This is Timmy's new IV pole. It folds up like an umbrella! We will use it to hang his feeds from when we are at home. I can also hang out on the IV pole and watch everything that is going on!


This is Timmy's new bag to hold his feeding bag full of milk and his feeding pump for when we are on the go. It is Timmy-sized, so when Timmy gets a little bit older he can wear it and run around without missing out on his food!



This machine is called a pulse oximeter. It measures Timmy's heart rate and his oxygen levels. If Timmy has an emergency, it will start beeping really loudly so that somebody can come help him. Timmy has a pulse oximeter in the hospital, too, and it drives us crazy. The sensor goes on Timmy's foot, and when Timmy is playing it always alarms. But this machine is very important for keeping Timmy safe. We tried to test it on me, but we discovered that moose hooves do not work very well with pulse oxes. I am just glad that Timmy has a pulse ox and not a pulse moose.


This is Timmy's emergency bag. It holds all the supplies that we will need if Timmy has a problem. This is the bag that we hope we will never have to use.















I let Timmy's Mommy and Daddy practice moose CPR on me with Timmy's special ambu-bag. This is another thing that we hope we never have to use.

Timmy also has his very own suction machine. It is very loud, so do not be scared if Timmy's mommy or daddy turns the machine on when you are with him. The nice lady at the equipment company told us to be sure and empty the goobers out of the suction canister if it gets full. It holds 800 cc (.8 liters). That is a lot of Timmy goobers! (Do not worry, we will empty it much more frequently.)


Timmy got this nifty stroller as a going home present. His car seat snaps into it, and there is just enough space in the basket underneath for his suction machine, emergency bag, and pulse oximeter. Timmy's mommy and daddy told me that I will be responsible for carrying his diaper bag, since it will not fit underneath. Here, we are testing it to see if they will be able to suction Timmy while they leave the suction machine underneath. It works perfectly!

Timmy has been practicing sitting in his carseat the last few days. We do not want Timmy's first time in a carseat to be the two-hour drive home. Timmy did not like his carseat the first time around, but he is starting to get used to it. He had fun riding around in his carseat in his stroller in the little bit of clear floor in his room.

And what does Timmy think about going home?

This moose has one more announcement to make. If Timmy does not do anything else crazy, he will be going home TOMORROW!!! I am so excited my purple antlers are getting all tingly!