Will Took His Trach Out Today

I woke up this morning to find that Will had apparently removed his trach, and when I tried to put the trach back in, I felt some resistance, so I tried with a smaller trach tube, and still couldn't manage to get the tube in!!! I called "Nurse Cameron," and she had no luck either. Cameron immediately called 911, and an ambulance was dispatched to our house.

During this whole entire fiasco, Will's oxygen saturation levels never came out of the high 90's, and during the ambulance ride to St. Mary's, the levels still stayed the same. The Doctors at St. Mary's tried the same thing the Cameron and myself tried to do, and came out with the same results. Their conclusion was that the stoma (hole in his neck) had sealed closed, and still saturation levels remained in the high 90's.

We decided to have St. Mary's transport Will to Egleston, so his team of Doctors could run some tests and observe him overnight.

Well, it is now 10:42pm. and the trach has been out for about 20 hours. Will's saturation levels are still in the high 90's, 98-100 to be exact, and is sleeping well. We will find out tomorrow when the Doctors will do a Bronchoscopy and a sleep study. Hopefully those two tests will go well, and Will will be a baby with no accessories!!

-Matt



Happy Will

Serious Will

Will is doing much better. His steroid regimen seems to be helping. I had to take both the twins to the pediatrician yesterday. Will needed a re-check and Hays needed his six month checkup and vaccinations. Poor little guy did not think much of that! And he's running an icky little fever this morning as a result. Hopefully Tylenol will knock that out pretty quickly.

The doctor thought both boys were doing really well. Will weighs 13.11 pounds and Hays is 9.11 pounds. I notice it most in Hays. I bought him some little footie sleepers a couple of weeks ago, and he's already outgrown them!! But the pediatrician says that for their adjusted age they are right on track and that he's amazed by how on track they are.

We're ready for the long weekend. Poor Matt doesn't know it yet, but I have a decorating project in the works. Yay!!!!!!! With the help of slipcovers and paint, we're redoing the den. I'm soooooo tired of it and it's time to brighten it up. I'll post pictures when it's all done- as long as it looks good. But my plans today include shopping for slipcovers and paint. Woohoo!! I love decorating!!!!!!

Poor Will had to go to the doctor today. I thought he was getting better, but this morning his cough sounded awful. We wanted to catch any sickness in the making before it got really bad, so we headed to the pediatrician. His chest is pretty junky, but we got a steroid, an antibiotic and a steroid breathing treatment that should fix him up in no time. We have to make suere he doesn't get pneumonia because that would send him back to the hospital in no time flat.
Last night was exciting because our power went out at 10:30 and didn't come back on until midnight. We had to grope our way blindly through our pitch-black house to get to Will in order to connect all his equipment to battery backup. Luckily, we have enough battery power to last 14 hours. I still prefer the power on, even though it was very peaceful. Initially I was restless because I'm so used to always having something to entertain me. But once I settled down and stopped pacing, it was kind of nice to enjoy the peace and silence and just let my brain rest. But I would much rather the lights stay on tonight!

Well, I had an absurdly good time on my birthday. I went to dinner with friends, hung out in a bar, then went dancing at an 80's club. I had a blast, but I definitely felt the pain the next day. I am just too darn old to stay out until 1:30 in the morning! Oh well, it was worth it!
All the kids are doing well, Will's little cold or whatever it is seems to be getting better. He's not needing the breathing treatments as often. He is doing so well with stuff like holding onto toys and reaching for objects. People from Babies Can't Wait are coming out tomorrow to develop a plan for theboys. I am both nervous and excited to see what kinds of therapy they'll need. I hate the fact that they need any kind of therapy, but I'm very grateful that the service is available. And with early intervention, we shouldn't have any problems with developmental delays down the road.

Will had his first follow-up appointment with the pulmonologist yesterday and it went really well. The doctor thought that he was looking great and didn't make any major changes to Will's care plan. We don't have to go back until December, so yay!
The babies are happy because they have some cool new toys. I went to a huge consignment sale on Thursday and got them TONS of clothes and toys, so they're set for fall and winter. I wound up with 19 sleepers, a bouncy seat, an activity gym, a neat mobile, some shirts, pants, pajamas and a winter coat for Mason, all for $92!!! Fabulous.
And today is a big day for me because it's my 30th birthday! So tonight I plan to party like a rockstar. I'm going downtown with a big group of my girlfriends to have a nice dinner and then a little bar hopping. It should be boatloads of fun and I can't wait!

Will had a good day yesterday and a great day today. I'm not sure what caused his problem Monday, but whatever it was, he seems to be over it. He had to stay on the vent all day yesterday to kind of recover from the day before, but he was on his trach collar most of the day today and he did great. He kept his sats up and was happy as a clam.
He had a rough night the night he came home from the ER, but that's largely our fault. His sats were really low and he was kind of wheezy. The breathing treatments helped some, but not like they did at the hospital. By the morning, I was getting pretty worried and thought that another trip to the hospital might be imminent. I couldn't figure out why he wasn't responding to the Albuteral like he had at the hospital. The reason became clear when I went to administer the next treatment with my nurse, Boh. I had been connecting the nebulizer to the wrong vent hose! I put it on the one that he exhales through rather than the one he inhales through. I just didn't even think about the fact that it would make a difference, and no one had ever really pointed out that it would make a difference. I felt completely stupid and I was mad at myself for making his night tougher than it needed to be. But what are you going to do? It's a learning process and I'm still learning. At least I won't make that mistake again. After his correct breathing treatment, he was doing MUCH better. It's amazing how well medicine works when you give it to them properly!
But now we're back to two healthy, happy babies. Hays aapears to be going through a growth spurt, because all he wants to do is eat and sleep. He has learned to love his rice cereal and has now started on bananas, which he adores. He had them for the first time yesterday morning. He tasted them, thought for a moment, then broke into a huge grin and gobbled the rest of the bowl in about two minutes! Tomorrow he's going to cross a new frontier into sweet potatoes. Let's hope that goes over as well as the bananas.

We about had more excitement than we could stand today. Mason had a good day at school, but Will didn't have such a hot day. His oxygen sats were low this morning, so we put him on the vent and gave him a breathing treatment. But by the afternoon he was having a hard time breathing and his chest was really pulling. I called our pediatrician and was told to head to the emergency room. I called the NICU before heading to the hospital to see if they had any advice for getting in quickly. They said they would call ahead for us, so when we got there they were waiting on us and took Will straight back. So a million thanks to our beloved NICU nurses!!! They gave Will breathing treatments with Albuteral and that helped almost instantly. They drew blood and checked his secretions for infections and did a chest x-ray. Luckily he showed no signs of RSV or pneumonia. We thought they were going to keep him overnight for observation, but our pediatrician happened to be the doctor on call. After he checked Will out, he sent us home.He said that Will had basically had an asthma attack. Will was doing great, and since our hospital doesn't really deal with pediatric trachs, we were better equipped to care for Will than they were. And hospitals are filled with germs that he does not need. So after 5 1/2 hours in the ER we were on our way home.
The fun started wjhen we stopped by the pharmacy to pick up Will's Albuteral and steroids. He started pitching a fit and forgot to breathe, and then turned a lovely shade of dark purple. So I had to bag him with oxygen in the middle of the Wal;greens parking lot! But it worked, and he returned to a healthy pink color. But it was pretty scary. We got him home and he's zonked out. It was a long day for that guy. Everybody pray that we don't have to repeat that particular adventure!!

Tomorrow is Mason's first day of preschool! We spent today getting ready. I had gotten him a little back to school present that consisted of the blue Power Ranger he's been begging for, a math workbook, and paints. He was thrilled with all of them. He's been big into the workbooks lately. Every night after dinner, he wants to do "homework" which means doing a couple of pages in his workbooks. Guess I'd better enjoy that while it lasts!

We baked chocolate chip cookies for his teachers, then he helped his daddy wash the cars. After that I went to run a couple of errands, whereupon I discovered the fabulousness that is Steve and Barry's. I'd never been there before, and if you don't have one in your town you might not know that it's a store that sells cool, decent quality clothes and shoes for $8.89 or less. It's awesome!!! I bought myself two pairs of shoes and a sweater and I got Matt a pair of shoes, two pairs of jeans and four button down shirts for less than a hundred bucks. That totally rocks my frugal little world!!! While I was returning something to Target, I found Batman pajamas (complete with a cape) for my little superhero. He was sooo excited. I had to wash them right away so he could wear them all afternoon!

While we were waiting for the Batman pajamas to be washed and dried, I took Mason to get a haircut. Someone that works at the salon had found a baby bird a couple of weeks ago and has been caring for it at the salon. So Mason and I got to see this cute little baby bird, Peep. He was just getting his feathers and he was the cutest little thing. He has really taken to his adoptive "mom" and was sitting on her head when we left!

Everybody keep your fingers crossed that Mason has a great day at school tomorrow (And that he doesn't insist on wearing his Batman mask and/or pajamas to school!).

Well, we have had an exciting couple of days. Yesterday I gave Hays rice cereal for the first time, and his reaction was priceless! He screamed and his face turned so red it was almost purple. You would have thought I was feeding him burning lava or something! He was just horrified by it. I have video, and if I can get Matt to upload it for me, I'll post it. Even though he cried through most of the feeding, he finished the whole bowl of cereal, then slept through the night. Woohoo!!!!! I guess that nice full belly helped him sleep really well. He didn't protest as violently when I fed it to him tonight, but he wasn't too happy with it either.
Mason had a fun day today. We went to open house at preschool and met his teachers and saw his classroom. He has not been excited about going back to school, and he was not looking forward to today. But once he got in there and saw all the cool toys and met his sweet teachers, he felt better about starting a new year. After open house we went to Chick-Fil-A for a playdate with some of his friends from last year. His best buddy, Bo, was there and they played hard. His utterly adorable little "girlfriend," Hannah, was there too. And she brought Mason a picture she had colored for him of Alladin and Jasmine, above which she had written "Mason and Hannah." She also gave him a heart she had cut out of red paper. How cute is that? I'm not so sure about this girlfriend stuff, but if he's got to have one, Hannah is darn cute!

Will had a much better day today. His sats were good and he wasn't nearly as sleepy. I guess he recovered from his wild weekend. If Hays drools any more we might have to buy flood insurance and a rowboat. I swear, that kid is like a faucet! I had to change his sheets today after his nap because he was lying in a puddle. If that tooth doesn't come in soon I'm going to have to start wearing a raincoat when I hold him.
I went to Mason's preschool parent orientation tonight. School starts Monday, hallelujah, praise the Lord!!!! He's already pitching a fit about going. Lately he doesn't want to do anything but hang around the house. I think it's a delayed reaction to the time that I had to spend at the hospital. He dealt with the upheavel really well at the time, but now it's like we're all home and he never wants to leave again. I know it's just a phase and he'll grow out of it, but it sure is frustrating. We've got open house on Friday so Mason can meet his teacher and see his classroom. He's less than enthusiastic about it, but tough patootie!

Will's had a rough couple of days. I think we wore him out this weekend. We probably overdid it a little, but he'll be okay. He hasn't been really bad off or anything, he's just been tired and his oxygen saturation levels have been lower than usual. Yesterday we kept him on the ventilator most of the day, and today we had to give him some oxygen. He slept a lot today and that seems to be helping. His oxygen sats are much better tonight, so I think he's recovering from his busy weekend! We had some drama in the middle of the night last night when his trach popped out, but we got it right back in, so no harm done. We're not really sure how it happened. Best we can figure he had scooched down in his bed a good bit, so his vent hoses were pulling kind of tight. His travh ties tend to loosen up after he's been wearing them for a while, and we think he must have just turned his head and popped that sucker right out! We don't know how long it was out, but his sats were fine and he didn't seem to be having any respiratory distress. He was a little wound up from having all the lights turned on and his trach put back in at four in the morning, but who can blame him!
We also think that teething has started for Will. Hays is still a drool factory, but the tooth has not yet made its appearance. Now Will's starting to drool like crazy and wanting to put everything in his mouth. Yay, two teething babies. What could be more fun?

We made it to church this morning! We were a few minutes late, but we were all there looking cute. I would have pictures of the boys in their adorable church outfits, but my stupid self forgot to turn off the camera after I uploaded pictures last night and killed the battery. But all three of them looked precious and were perfect angels. Mason went to children's church, but we kept the babies with us. My mom and I wound up sitting in rocking chairs at the back of the sanctuary because Will is awfully loud on his HME. We didn't want to disturb anyone, so we sat back there and rocked them and they were both as content as could be. We were so proud to finally be able to show them off to the people that have been praying for them for so long.

Babies' day out!

Looking good in their matching outfits!


Ready to hit the road!


My cutie boys ready to party

We had our first outing as a complete family today and it went beautifully! Our friends, Jessica and Kyle, (Zach's parents) were having a party for Kyle's birthday, so we joined them to celebrate. We had a great time hanging out with everyone, and the twins were great. They got lots of snuggles from Jessica and Susan, one of our beloved St. Mary's NICU nurses. Mason had a great time playing with Maddie Grace, and I was so happy to finally get to take all of my kids somewhere together.
Honestly, it wasn't any harder than it would be for anyone trying to go somewhere with two babies and a four year old. We had to take a little more stuff than most people would, but it was really no big deal. Will stayed on his HME the whole time and no problems whatsoever. It was a great feeling to see that we really can go places like any other family. We're going to see how things go in the morning, but we're thinking about attempting church with the kids. We haven't been since the babies were born and we miss it. Hopefully we'll be able to introduce Will and Hays to their church family tomorrow.

Our nurse this morning was two hours late. She apparently slept through hr alarm. She's a good nurse- she was here a couple of times at night- but good lord! Two hours? That's ridiculous. And mornings are the craziest part of the day. All three kids are up and hungry and Matt's trying to get ready for work, so I really need an extra hand then. But since our nurse was MIA, I had to go it alone. Matt was able to watch Hays for me while I did Will's trach care, so at least I was able to do that without having to contend with a screaming baby.
I'll tell you what, it's a good thing I didn't know how unreliable nursing care was going to be before I brought Will home or I would have been scared to bring him home. The upside of it all as that we have had to make sure we are completely proficcient with Will's care. We never know when problems will arise (proven by last Saturday's mucous plug adventure), so we have to know how to deal with anything that may come up. If I had known how many times we would have to go it alone just in the first two and a half weeks, I might have had to leave him at the hospital! But now we've proven to ourselves that we can handle this stuff and that's a good feeling. My mother in law's neighbor came in to see Will today, and after seeing all of his equipment she said, "I just can't imagine how y'all are doing all of this." And I told her it's like any baby, you bring them home and think, now what do I do? But then you figure it out and it becomes routine. My biggest fear when we found out Will needed the trach was that this stuff would never become routine. That it would always be a struggle and that we would always be terrified. Thank goodness I was wrong. A mom on the trach message board told me, "it will become normal to you and you won't give it a second thought." She was right.

Super Mason

Things have been pretty settled over the past few days. It's always kind of hectic trying to juggle all of the boys, but we've pretty much gotten our routine down, and that helps. Today the twins took long afternoon naps, and it was downright boring! I definitely feel like I've got a handle on things at this point, but it's still nice to have an extra pair of hands.
Mason is still doing a great job with the babies, but I think having to stay home all the time is kind of wearing on him. He used to us going somewhere or doing something pretty much every day, and I think he's getting pretty restless being stuck in the house. I can't say as I blame him. There are days that the cabin fever gets to me as well. But he starts preschool in a couple of weeks and that will be a good thing. He was hilarious today. He was watching the show "Super Why" on PBS and there is a kid on there who can fly with a rocket booster thing strapped to his back. So Mason goes running off to his room and comes back with his toy dustbuster, wanting me to strap it to his back so he could fly. With the help of a couple of ribbons, Mason got his rocket booster! Then he needed a cape. He proceeded to "fly" around the playroom with his cape and jet pack, much to the amusement of me and our nurse!

Blessed

I finally got to spend a little time with Mason today. We went to the mall because we needed to pick up a couple of little onesies for Will and Macy's had them on sale. Our mall now has this play area with these inflatable bouncy things that Mason wanted to play in, so I let him run around and do that for a while. He had a good time, and I think he was grateful to get out of the house and to have some quality mommy time. After he had bounced himself out, I took him to a little newstand-type store by the play area and got him a slush puppy. The woman behind the counter asked if he was my only one and I told her that I had twin boys at home. Her face lit up, and she exclaimed, "Oh my, you are blessed!" And she is absolutely right. Today was one of those days when I was truly able to look at my children and fully realize that we are blessed beyond measure. The boys are sweet and loving and fun, and life is good.

Close Call

We got off to a scary start this morning. When our night nurse left at 6 am, I checked on Will and noticed he was making kind of a raspy sound that I'd never heard before. But his oxygen sats were good and his color was good and he was sleeping peacefully, so I let it go. An hour later I heard crying loudly and I knew something was wrong. A child with a trach can't cry loudly because air doesn't get to their vocal cords, so if you hear them at the volume of a regular baby, something's wrong. When I went in I couldn't figure out what was wrong. His trach was in, his sats were fine and his color was fine, but his chest was pulling when he breathed and he sounded raspy. I thought he might need a breathing treatment, so I gave him one. It helped some, but he still sounded pretty wheezy. Then Matt noticed his humidifier was off.
Now, the humidifier is probably the most crucial piece of equipment to a trached child. Since Will doesn't breathe through his nose, he can't humidify air himself. Without humidified air, the secretions in his trach will dry up and form a mucous plug which blocks the trach. This can be, and often is, deadly. Once we realized that the humidifier had been off for God knows how long, we decided to change the trach to be safe. After replacing it, I found that the tube was completely blocked with a mucous plug. Thank God he has enough space around the tube that he was breathing around it. That's why we could hear him cry so loud. It is truly for the grace of God that this did not kill our child.
We have no idea how the humidifier got turned off. We know we turned it on after the doctor's visit because we had to adjust the settings to get the temperature right. This machine is hard to turn off and on, you can't "accidentally" turn it off. The only thing we can figure is that the night nurse turned it off for some unknown reason and forgot to turn it back on.
Luckily all's well that ends well. Will is absolutely fine and the rest of the day turned out quite nicely. But we will be checking that humidifier like crazy from here on out!

Like ripples in a pond, the virus continues to spread. It has now claimed two of Debi's four kids and our other daytime nurse. Poor things! Will the infestation ever end? The good thing that came out of it is that we have a night nurse tonight and tomorrow to make up for yesterday's missed shift. Six blissful hours of sleep, hallelujah!
Today I made my first foray with Will. We took him to the pediatrician's office. It went really well. The hardest part was packing all the "just in case" stuff in the car. we had to bring the vent, the battery, oxygen, portable suction machine, extra trach, vent circuits, etc. The minivan was pretty much a rolling hospital! And since Will was on his HME, we didn't need a bit of it (except the suction machine). But we found out he weighs 12.3 pounds, so he's gained almost a pound since he came home from the hospital! We changed his feedings around a little. He's getting a little more during the day and a little less at night because he's been spitting up the past couple of nights. Other than that, everything's looking good.
I did think I was going to have to slap the nurse tech at the doctor's office. She had never seen a kid with a trach, so she had a lot of questions. The questions were fine, but the horrified, slightly disgusted look on her face wasn't. I seriously thought about kicking her. I bet Debi would have held her while I did! There was another lady in the waiting room who heard Will before she saw him. He makes a real raspy sound when he's on his HME, somewhat reminiscent of Darth Vader. She commented, "Aww, somebody's got the croup." Then she saw him, but recovered very nicely! She just said how adorable he was and that he had the cutest chubby cheeks. Ahe handled it much better than the nurse!
Hays seems to be feeling better. He was sleeping much better today and had fewer diaper blowouts. And he weighs nine pounds! Matt weighed him using the slightly less scientific method of standing on the scale holding him, then without him and subtracting! So go big Hays!!!!
And the cute Masonism for the day- This afternoon I took Mason and Hays to the grocery store and they were both perfect little angels. Mason gets gold post-it note stars to stick on his bedroom door when he does something good, so after I told him how proud I was that he had been so good, he asked if he could have a star. I gave him one tonight before bed and he told me, "Mommy, make a star for Haysie too and I'll put it on his door for him. He needs a star for being good at the store too!" He is such a sweet big brother!