5 Months

5 months … that is just crazy talk!!

This past month has been a big one!

We had pictures done before surgery to capture his sweet and adorable face!

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We survived a weekend without A/C. IMG_0885.jpgIMG_0870.jpg

Then, he had surgery.

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And tomorrow, this sweet little boy starts preschool!!

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Don’t ask me where the time has gone, because I have NO idea!! Before I know it this year will be over and he will be going to Kindergarten!!

I’m excited for him to start school. It will be a new adventure!!

Recovery 

Ari has done so well with recovery from this surgery!! I shouldn’t be surprised, but yet he never ceases to amaze me!! 
He has only needed Tylenol once in the last 2 days and the swelling is continuing to decrease. The top of his head continues to display significant swelling (if you touch the top, you cannot feel bone).  He is starting to move his head more and is able to hold it up almost as long as he could prior to surgery – and I expect this time to increase as he regains his strength. The hope is that he will gain head control and then, hopefully, sitting balance! 

A huge shout out to my Mom (Bubbles) … she went to Dallas with us for surgery and then came back home with us for the past week … it was so great to have her here. It really makes me miss being so close so they can see him more!! (Picture from his birthday party)

Post-Op Day 2

Well, the original plan was for discharge today, but Ari doesn’t like to play by the rules! 

Last night he woke up several times, but was content and even spent some time “talking” around 1:00am. I was happy to hear this because I hadn’t heard a peep out of him (other than crying) since before the surgery.  I was really hoping that his overnight awesomeness would spread into today, but it just wasn’t meant to be.

We woke up around 7:30 and I ordered his breakfast (it has been taking ~ a hour for food to come) and I made some instant oatmeal My mom had brought to hold him over. The sweet little boy was starving!! He ate the entire bowl of oatmeal and fell asleep. From a deep sleep he began retching- but nothing came out. It was just downhill from there. 

He refused to eat anything from the breakfast tray I had ordered and refused to drink anything from his cup. We skipped lunch because he was so agitated even with IV Tylenol on board, he was given some Ativan to take the edge off until he could have his Toradol (which was the first time he needed that). He was very restless all day, struggling with gas pain. He was able to eat a little vanilla pudding and a few bites of banana.


For dinner I got him some chicken noodle soup but he ate very little. He ate a few bites of his leftover tuna fish, but he was just not in the mood for food. 

He was able to sit in my lap for a few hours today – but I feel bad moving him because he is in such pain. He did fall asleep in my arms and it was good for him to have a position change, but it is hard to handle him and his head when it is just so swollen all over. 


The swelling today has been rough. His right eye has swollen shut and the left eye is just a little sliver. I really hope we have hit the peak of the swelling … even his ears are swollen and it has to just be so uncomfortable!! 


We are staying the night tonight, not too sure what the plan is for the rest of the weekend. His craniofacial surgeon wants to take it day by day to see how he does. I’m so happy that they are so open to how the family feels and want us to be comfortable going home. 

Praying that tomorrow is easier, both pain and swelling wise! 

Post-Op Day 1

Last night went ok – Ari was sedated for the most part, but had several instances of intense breakthrough pain. My number one goal was to keep him comfortable and, for the most part, that was achieved. 

He ate 2 bites of oatmeal around 7:30 and promptly threw them back up. He was given some IV Zofran and he then ate some more oatmeal, some scrambled eggs and a few bites of banana & banana muffin. He stayed awake for most of the morning, looking around the room and watching his iPad. He was able to sit in my lap for cuddles for a few hours and he just snuggled right in.


For lunch he ate a little bit of pasta with marinara and broccoli. He also ate several bites of chocolate cake. He was so funny because when I showed him the chocolate cake he spit his paci out so fast!!! The boy loves his chocolate cake!!

Around 2:30, we were moved out of the PICU to the floor. He continues to be fairly content unless moved. His swelling continues to increase and will likely come to its peak tonight or tomorrow.


For dinner, he ate a few bites of tuna fish salad and some more chocolate cake. He hasn’t drank too much, so the IV has stayed to ensure he stays hydrated. 

The plan, as of now, is to be getting discharged tomorrow. We will stay in Dallas until Sunday just in case something happens and we need to get back to our surgeons quick. 

Surgery Day

Well, the day finally came where I again had to put full trust and faith in Ari’s absolutely amazing team of doctors. 

I couldn’t sleep last night, went to bed around midnight and woke up at 2:30. Just too many thoughts running through my head. Ari slept great and didn’t wake up until I woke him at 5:30 so he could drink some Boost before his milk cut-of time. He drank an entire juice box size in less than 15 mins – I gave him a second one, but not much of it was consumed before his 6:30 cutoff time. He did drink some water before his 9:30 off  time, so I felt fairly confident that he could make it until 12:30 without becoming upset due to wanting food.

We left the hotel at 9:40 and got to the hospital right at 10:00. He was such a good boy waiting for his surgery time. He watched some Bubble Guppies, played with an awesome light up and spinning toy from ChildLife and snuggled. He fell asleep in my arms and was asleep as they rolled him into the OR. 


It was a long 4 hours … We got some lunch, I got some work done that I was unable to do over the weekend (not having AC really keeps you from doing too much!). I caught a tiny nap and just sat around watching the kiddos who were waiting for their siblings surgeries to be done. 

Finally, around 4:30, the called to say they were done. They said he had very little blood loss and were able to reuse his blood .. I didn’t even know that was a possibility. So, they keep a pan under his head to collect blood he looses, send it through a machine to clean it, and then give it back to him in his IV … How cool is that?!?

So far, so good. He looks good and had only gotten upset twice.. The first time the nurse immediately gave him some IV Tylenol and he calmed fairly easily the second time. His light up bunny is helping him calm down and hopefully he will sleep some tonight.

Thank you to everyone who has called, texted, emailed and Facebooked us – your love, prayers and support mean the world!!

Here is a pre-op/post-op comparison – but it may be different here in a few weeks as he already has some swelling. 


Hopefully tomorrow will bring less swelling than I expect and we’ll be able to get rid of the catheter and some lines. 

Pre-Op

Today, we had several pre-op appointments in preparation for tomorrow. 

First off we saw ENT. They did a quick hearing test and he seems to be hearing well. They will go in at the beginning of the surgery, clean out his ears and then place tubes in if they see a build up of fluid (which they think may be there). 


After having some yummy Chinese food for lunch, we went to the hospital pre-op area for a blood draw (that Ari was NOT happy about), pre-op pictures and measurements of his head.  Once we were done with everything the hospital needed, we went to visit the craniofacial surgeon. He told us that the plan is to be done in less that 5 hours and hopefully go home on Friday. However, it all depends on how he tolerates the pressure change in his brain from the decreased fluid the neurosurgeon removes. 

This surgery is focused on mainly decreasing the fluid and decreasing height of his skull.  Hopefully these things will reduce the size and weight enough that he can hold his head up. We won’t know if future surgeries will be needed until he is fully recovered from this one. 

I feel that the saddest part of this procedure for me is that post-op his head/face will be so swollen that his eyes will swell shut and stay that way for several days … that is SO hard for me because he may be scared and won’t know what is going on.   

Well, it 11 pm here so I guess we need to get some sleep. He cannot have food after 4:30 am, no milk after 6:30 and no water after 9:30 … hopefully he will still be happy at 12:30 when the surgery is scheduled. 

Progress and Gratefulness

As we prepare to head to Dallas tomorrow for the next surgery, I decided I needed to catch everyone up on what has been going on. I will try to blog as much as I can while we are in Dallas – but I don’t guarantee anything 🙂

Ari has been doing well! In the last few days he has started rolling over to get toys across the room. Right now he is able to go from his back, to his belly and back to his back over the opposite side he started on … perviously he just rolled back to belly and then back to the position he started from. I would call this great progress!! I hope that once we get over the recover phase of this surgery that he will be rolling across the room with ease!


This past Friday, Ari and I came home to a house that was warmer than usual. It took me a few hours to realize that the house was getting warmer but the vents were blowing. I went outside to the AC unit and it was not running … so I called the AC people. Saturday around 11:30 they came out, the guys went out to check the unit and came back in with a piece from the bottom that was over 70% black and scorched. Somehow the unit caught on fire and it burned out all of the electrical components (THANKFULLY it didn’t catch the house on fire!!). And, of course, since the system (furnace included) is over 12 years old, they don’t make replacements for it any more …. so an entire new system has to be put in the house. What a wonderful thing to happen just days before this surgery that I’m already stressed about! Oh well – thankfully they will be able to replace it before we get back. Praying we come back to a very cool house!

Since our house has been much warmer than normal this weekend, we went out to eat dinner (not typical for us). I decided today to try out Steak & Shake – Ari has never had it so I figured we would try. Well, wouldn’t you know, he LOVED his cheeseburger …. that isn’t something I have ever said before! He has had burgers at various places and never really cared for them – eating less than half a burger typically. Well, tonight, he ate the whole darn thing and drank an entire cup of water (that is a BIG deal!). As we finished, we went to go pay and SURPRISE, someone had paid for our meal!! I have no idea who it was, but I am very thankful. We retreated to a restaurant for cooler air and an easy meal  but came away with gratefulness for a stranger!  Thank-you, whoever you were!!

Tomorrow morning we are headed to the Social Security Office to get Ari’s name corrected on his SS Card (it is in his Chinese name … it is just what they do). While I am there I will also be checking on his resident status. Occasionally children who are adopted internationally will accidentally be put into the “system” as resident aliens instead of citizens … but I want to make sure ALL the ducks are in a row and that there will never be second guessing on his citizenship status. Once we are done there, we will head to Dallas as Ari has 4 pre-op appointments on Tuesday starting at 11.

Surgery is scheduled for Wednesday at 12:30pm. He will be the second surgery of the day since the other child scheduled that day is younger than him. It should be interesting to see how he does with no food. My plan is to make sure he wakes up before his cutoff time and eats … even if that means he is up for the morning – I can nap later! If I can get some protein in him, hopefully he won’t be too upset about no breakfast & lunch!

The goal of this surgery is to decrease his head size and weight enough that he can hold it up independently. If we can get head control, we may be able to get sitting- which would be a HUGE relief for me. Anything extra past sitting is just icing on the cake!

We’re off – the beginning of the journey to the next part of our adventure!