We're Home!!!

That's right, we got to come home today :) Dylan had an awesome night! We gave him Tylenol around 8:00 p.m. last night and put him in bed. I told the nurse that if he had a hard time sleeping, I'd like to give him the stronger drugs to get him some rest. Well, the little man didn't need them and slept until 9:00 a.m. only stirring a few times. He was SO much more like himself this morning. He ate a bunch of peaches and some pancake in Aunt Nicki's lap. He still hadn't pooped, so they gave him a laxative which worked almost instantly. That was our ticket out of there...soon after we got the green light to go. We got home around 2:30 and D took a super long nap...in fact he's starting to wake up now. I'll post more later with some pics...for now, it's great to be home!!!

Days 4-5

Sorry for the lack of posting yesterday! Things get a bit hectic and I've been awfully worn out. I'm sure all the other moms out there can relate, it's awfully hard watching your little one in pain. The good news is Dylan is doing great! Here's a recap from the last 2 days:

We headed back to our old room (that's right, we moved to our old room) on Friday afternoon. Dylan continued to seem much better than he had been but was still getting fevers. We gave him Tylenol to help break the fever and that definitely seemed to work. Billy made us rigatoni and brought it for dinner. It was excellent and a welcome change from hospital food (the food at Children's is actually great...there's only just so much of it you can eat). Friday night was pretty good...except they had to assess Dylan every 2 hours so although we all slept much better it was very interrupted sleep.

Dylan continued to get better on Saturday. Andrea and Morris brought up Ella and Maggie so we had a blast hanging out on the playground again. Ella loves all the slides and could go down them a thousand times before getting bored! It was a fairly uneventful day which was nice. Dylan continued to be feverish but nobody seemed overly concerned.

My mom noticed that Dylan's leg with the IV was starting to get tight, so we pointed it out to the nurse. We decided that it was probably best to start a new IV, rather than having this one go bad and have it be much more of a panic to get a new one in. Dylan's nurse tried to start one but was unsuccessful. She called somebody from the PICU (they are usually experts at IVs) but the two nurses from the PICU each tried twice unsucessfully. Finally, they decided to call an anesthesiologist who luckily was able to get the IV started.

So as I'm typing this and boiling it down, it all seems fairly low key. However, Dylan was absolutely hysterical about getting stabbed 6 times. Each time he'd get super upset as they tried to find the vein and then the subsequent pokes. We finally got the IV in around midnight so we were all exhausted (both mentally and physically). Dylan actually slept pretty well which was great, but I was kind of a wreck. I felt so guilty that I had "encouraged" the putting in the new IV which led to him getting stuck 6 times and 3 hours of pain, hysteria etc. I woke up this morning with a migraine and Dylan's fever was back. I was pretty down thinking we were never going to get out of here and worried that Dylan wasn't getting better. The surgeon rounded and said he thought Dylan was doing awesome, he wasn't at all worried about the fever and said Dylan could eat anything he wanted now and that we could maybe go home on Monday.

Dylan continued to have a great day. He ate much more (still nothing but milk), although nowhere close to what he usually eats. We turned off his morphine and he seemed to do pretty well with just Tylenol. He spent a lot of the day sleeping on me which was kind of nice. Unfortunately, he's developed a ton of anxiety around all of the nurses. Every time one walks into the room he gets a bit hysterical. I can't say I blame him, but I still feel kind of badly. He's also definitely in a mommy mode and is most content if I am holding him. Although I love the cuddling, it's a bit hard to not be able to hand him off without him getting hysterical. I'm sure it'll pass soon and he'll once again prefer Aunt Nicki to me :) The Morris clan came up again today and Andrea made us Easter enchiladas (there's nothing really Easter about them except that we ate them on Easter). Felicia and Andy also came to visit and brought D an adorable bunny rabbit. We tried to recreate the Easter basket shot in the hospital from last year, but were not very successful. We got some pics, but Dylan was fairly hysterical the whole time. Dylan is sleeping very peacefully in bed, so hopefully we'll have a good night. We're still looking for him to poop (his stomach is super hard and he definitely needs to), so hopefully that will come tonight or tomorrow. And hopefully we'll continue to progress and either get out of here tomorrow or Tuesday.

Here are some pics from the last few days. I don't have the Easter pics uploaded yet, but I'll try to get it with tomorrow's update :)

Comfortable laying on Namma!

Dylan's first jello!

Dylan got fussy and tried to stand up in his crib. Aunt Nicki picked him up and he fell asleep leaning on her. He looked SO cute!!

Dylan slept through Uncle Morris' visit!

Looking awfully peaceful!

Sleeping on mommy (this one is from today)

Day 3

Dylan did great last night! As hoped, we had a very uneventful night and we didn't have to change any of Dylan's levels on anything. The diuretic definitely did the trick, and most of Dylan's puffiness is gone. They also did blood cultures (to see if his fever is being caused by an infection) and started him on some antibiotics. The fever can definitely be caused by the trauma from surgery, but they started the antibiotics to be on the safe side. The cultures will come back after 48 hours and assuming he doesn't have an infection, they'll stop the antibiotics. If by some chance, he does have an infection, they will likely keep him here for a week so they can do a full round of IV antibiotics (apparently it's a bit better than anything through the mouth).

So, other than the sticking him to get all of the blood tests, etc, our stay in the PICU has been lovely. The one other downside is they don't really have beds, so I "slept" in a recliner that lay fairly flat and Nicki put a bunch of blankets down and just slept on the floor. Neither of us slept very well (the PICU is much more open than the floor, for good reason, so there were just lots of beeping alarms and people talking all night). Dylan slept fairly well and seemed much more comfortable than yesterday afternoon.

This morning, everybody that has come to check Dylan out has had nothing but great things about how he'd doing, looks, etc. The surgeons rounded and have made the decision to send Dylan back to the floor which is great. He's no longer on oxygen (they actually took him off that last night) and they took his catheter out. We're still hanging out in the PICU, just waiting for a bed to open up. The surgeons also indicated that they thought we'd get to go home in a couple of days, so I'm hoping that we can head home on Sunday (don't worry, we'll get the Easter basket pic either at home or in the hospital!). I'm not allowed to feed Dylan still, but hoping that I can maybe do it this afternoon or tomorrow at the latest.

So, good news from Children's Mercy. I'll post with some new pics later this afternoon when we get moved back to the floor. For now, here's a cell phone pic...not great but you can see how peaceful he looks!

Day Two

Today has been a bit tough...we started out great. Dylan did great overnight. He slept pretty well (or as well as one can sleep when you get poked and prodded every hour). Nicki and I slept pretty well also. We were both so tired that I'm pretty sure we could have slept standing up. This morning D started passing gas which is totally awesome! He was doing so great that they even let me nurse him. He was very relaxed eating from me and I could tell was very happy to be doing so.

Later the afternoon, we started having a hard time managing his pain. He was resting in his bed, but kept jerking around and just seemed to be having a hard time getting comfortable (everybody had warned me that the day after surgery was almost always the hardest). His heart was beating very quickly (a sign that he's in some pain) and he was breathing very rapidly. If you recall from his first surgery, his heart rate got fairly high and he breathed pretty fast then too. It's common and expected with these surgeries because when they push things back into his abdomen it created pressure on his lungs. However, because we couldn't seem to get ahead of his pain and his heart rate and breathing were super high, they decided to move him to the PICU (the pediatric intensive care unit). This was, of course, very hard for me to hear. Long term it doesn't mean anything, but it seemed like a step backwards (and more importantly it obviously concerns me that they were worried enough about him that they thought he needed closer monitoring).

We had a bit of an adventure when we got to the PICU. Somehow, along the way his IV came out and blood started squirting all over. So, they had to start a new IV, which unfortunately required a few sticks. They also wanted to draw a bunch of labs to make sure that everything was normal, so the poor little man has been stuck about 6 times since we've gotten over here. However, the excellent news is that for whatever reason as soon as they made the decision to move him he started to calm down, appeared to be in less pain and his breathing and heart rate both slowed (we decided he was just sick of his old room and needed a change of scenery). They gave him a pretty strong diuretic (it's fairly common to retain water after a surgery) and it appears to be doing the trick. He's sleeping very peacefully now and the plan is to move him back to the floor tomorrow morning (see he really did just want a field trip!).

So, sorry for the lack of updates today...it's just been so busy, first because I got to feed him and then I was just stressed out because I could tell he was in pain and just wasn't being himself. So, we're hoping for a very quiet night and a move back to the floor in the morning. Dylan is doing great, so no worries out there. But feel free to continue to send prayers our way. More tomorrow!!!

Thanks to all of our visitors and to everybody for the nice texts and messages. Even though I'm not always super responsive, I appreciate all of the support!

And of course...a few pics :)

In the pre-op room...D says, "Mom, now that I can walk I refuse to sit still!"

A very groggy D after surgery!

Aunt Andrea brought Ella and Maggie up. We didn't want them exposed to any germs in the hospital, so Nicki and my mom went and played with the kiddos on the jungle gym outside while Andrea hung out with D. I actually went and played some myself. It was super nice to see the girls and nice to get some fresh air.

Posing with Namma for his offical birthday shot. Of course, we did his 1 year pic on Sat., but still had to get some pics on his b-day. Thanks to Felicia for the adorable bib!!

Uncle Billy even managed to get a smile for the pic!!

Anything for a smile!


Happy in Aunt Nicki's arms before bedtime!

D this morning, getting ready to eat!

I think he's getting tired of sleeping on his back. So I had him sleeping on me in more of a sitting position.

We tried giving him some apple juice because we thought hunger might be part of the problem. He didn't really like it much and now we're back to not feeding him for a while. Hopefully, he'll have a great night and we'll get to feed him again tomorrow!

Update

10:30 a.m. - I just got to meet with the surgeon. Dylan is out of surgery and like everything else in his life, he totally rocked it!! Andrea was right, it was lucky to have his surgery on his birthday!! They were actually able to push his stomach completely flat and pull the ab muscles back together (they thought it would take another surgery for sure). While there is some chance that the pressure will cause a small hernia, there's also a chance that we're done with surgeries!!! (even if there is a small hernia, it would be a very simple repair compared to this surgery and the one he had it birth). Dylan is in recovery and is waking up from the anesthesia. I should get to see him in about an hour and we'll go get settled into a room. Dr. Ostlie was fairly confident we'd get to go home by this weekend, so maybe we'll avoid consecutive Easters at Children's Mercy. Thanks for all of the thoughts and prayers! They really do help! Feel free to continue hoping the little man recovers quickly (we get to pray for poop again, people!) and isn't in too much pain. I'm hoping that I'll be able to get some sleep so I'm not such an emotional mess. I'll try to get some pics up later!

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Dylan has been in surgery for about 2 1/2 hours now (they actually took him back around 7:30, so they haven't been operating that long). I got a call around 9 that everything was going great. They weren't sure how much longer it was going to be, but will call again if it's going to go much past 10. He did great this morning, although was definitely starting to get sleepy and hungry by the end. He cried when the nurse started walking away with him, which was awfully hard on me. I was crying as well and just wanted to run after him and carry him to surgery myself (apparently they look down on that).




I'm doing pretty well so far. I've been entertained with pics from Nicki's adventures in South America so it's been fun :) Although, I'm ready to see my little man again!!





Here's a pic of Dylan in the pre-op area. Kristen brought him a bag of toys and a happy birthday headband :)

It's My Party...

Okay, first things first, we're on for surgery tomorrow morning at 7:30 a.m. We have to get to the hospital by 6. While this is obviously early, it's actually definitely my preference for time because I know I won't be able to sleep very well tonight and it's less time that Dylan will have to go without eating (he can't eat anything after 3:30, so no birthday cake for the little man). The surgery should take around 2 hours (give or take), so I'm hoping to be holding my little man again by 11. I will make sure to post an update as soon as possible to let everybody know how he's doing. I'm doing my best not to panic too much. I know he'll be in great hands at Children's but obviously this is pretty terrifying for me. I keep reminding myself that it's harder on me than it is on him...and luckily I'll have my family and friends around to help distract me. I know I've asked before, but tonight before you go to bed and tomorrow morning when you wake up, if you could say a little prayer for everything to go perfectly tomorrow, we'd all appreciate it.

Because we're having surgery on his birthday, we had Dylan's birthday party on Saturday. He got a ton of presents and we're having fun exploring all of the new toys :) We had the world famous Morris chili for dinner and cupcakes for dessert. Dylan didn't even hesitate when it came to eating his cupcake. He loved it (hey, what's not to love) and ate the whole thing! In fact, the cupcakes were sitting on our table the next day during lunch, and Dylan kept pointing at them and doing the sign for more! I have lots more great pics to post, but wanted to get these up today :)

I can't believe it's been a year! And I can't believe he somehow manages to get cuter every month!!!

I'm not sure what this is, but it's got to be good!!

Ella says "you're way messier than me, Dylan, but aren't these cupcakes delicious!!"

Maggie is getting so big and so cute! She has started smiling this past weekend and is getting more and more alert. No cupcakes for her this go around...but soon enough!

One Small Step For Man...

First off, HOORAY!!!!! Aunt Nicki is back :) We're so excited to have her back in the States. She's spending the day with Dylan, who couldn't be more smiley this morning when he saw her! We're actually keeping D out of daycare today and then Monday and Tuesday to try to keep him healthy for his surgery on Wed. (3/31). I don't know what time it's scheduled for yet, but I'll try to update on Tuesday, once we know.

Now for the exciting news...D is officially walking on his own. Of course, he's not an expert yet, but he definitely takes steps on his own and gets very proud of himself! He also has his top two front teeth and I think is getting more in. He is starting to understand simple commands (he turns the light switch off at night before bed) and is experimenting so much with "talking". He has repeated nanna (for banana back to me) and will sign and say more (although not super consistently). We're having a family birthday party for him on Saturday (we want to limit the germ exposure before surgery), so I will make sure to post pics of that soon as well.

Now, here are a few pics and even more exciting a video of D walking!!

D on St. Patrick's Day. This picture isn't the cutest ever, but it's meant to show all of Dylan's war wounds...If you look at his left eye, he has quite the cut both above and below the corner from where he dove onto the computer while video chatting with Aunt Nicki. He also has two bruises on his forehead (although, they're pretty faded in this pic) from various dives he has taken (hey, this walking thing isn't easy!).

With mommy on St. Patrick's Day :)

I couldn't have a post without a new picture of Maggie. Maggie continues to do awesome! She's growing great, and will hopefully figure out that sleeping thing soon!

Look guys, I have enough hair to get it into a mohawk :)

And now, D walking :) He walks from me to the couch a few times and then crawls at the end of the video :)