Day 4- Monday- Memorial Day May 26

Monday was the big day. My dad came up as usual but I was not going to be going home until we got everything we needed done. I needed to talk to the Doctor to get all the information I was going to need to get us home and what was going to happen at home. We needed to get him up and going and I wanted to see him off his electronics. The iPad was a great gift that made it so he survived his surgery.

Grandpa and I convinced a crabby pants Tyler to put his iPad down long enough to go find something to do at the kids zone. I had heard it was a pretty cool place and I was hoping that he would at least be willing to play a bit.

When you get into the play room they have to verify with your nurse you are allowed to play. We had no problem and only one restriction..Stay in your chair. We headed back to the video game section and we tried to play Mario Cart in which we lost terribly. It was awful.

We were very excited to see the air hockey table be open. Air hockey is one of his favorite things to do. So we played with it for a while. Pretty sure that Tyler kicked Grandpa's trash!

We moved on to play a game of pool. But his poor coordination allows us to make up games called Pool Bowling. He loved it. He did a few rounds and then was ready to go. He was getting tired by now so we went on home to our floor on the 8th floor.

I was left to call the home health company to be a mean mom and get our chair there. It was the ONLY thing that was keeping us from going home. FINALLY we were ready to go!!!!

Dallas stayed home with Grayson because we were suppose to be home MUCH earlier than we were. But we were up waiting for the LAST thing so I told him not to come up. It took us forever but we got us home.

We were SO SO glad to be home!!!

Day 3- Sunday May 24th

Sunday was just a long day.  With Tyler still on an epidural and continual pain meds he had a catheter in and he could literally not even feel his feet. Once again my dad got there bright and early to spell me off. It was seriously the best thing we have EVER done. It helped me be a lot less emotional but I was still pretty dang emotional.

My dad came up again in the morning to stay with Tyler. Today his epidural had been taken out and so he needed to get up and get in a chair and be taking regular pain meds where his epidural was round the clock. The biggest problem, the "regular" kids with surgery get is that in between their doses of pain meds they are given doses of Valium to of set the muscle cramps and the anxiety for the kiddo's. But Ty could have ONE dose in the morning and nothing in the afternoon because he takes a almost deadly dose in the evening time. So we had to find an alternative. Lucky for us he would just a  bit a crabby and they would give him toridol and let us keep his Valium at night.

I left when my dad go there and Dallas and Grayson were ready to go up to the hospital to give Tyler his gift from the toy store. It was SO nice to have a quiet, cool house and I felt very rested. I called up around the same time that Grayson was ready to come home, so I ran to the store and bought some stuff to whip up a dinner that didn't come from the hospital. So we had chicken and I made Dallas his favorite for a night snack when he got home. So this made it so that I didn't get to spend much time at the hospital on Sunday. While I was sitting there having a bit of guilt, I thought, wait, this kiddo had 3 people at the hospital all day. Grayson has 3 people around him that love him. I did OK. I headed up and slept at the hospital and wasn't going to be going right home in the morning because we need to talk HOME!!!

So I don't have any photos for the day on Sunday and I am OK with that! I did have a great nap.

Day 2- Saturday, May 23rd

The first night was such a worthless night. I was so thankful to have my dad walk in VERY early in the morning to sit with Tyler. I didn't even care that I didn't get to talk to the doctors and the only thing I wanted was my bed!  My dad was more than willing to sit and watch the worst set of kid hospital channels EVER and hang out. He was also the one that talked to the doctor and was able to relay what we needed.

He was only there for a little bit of time when Tyler finally settled in to sleep and my dad was awesome enough to ask people not to come in. So for a few hours he was sleeping soundly. We still couldn't get him to eat though. ( ok, not really. He would eat Ice Cream)

He wouldn't stop asking for a basketball hoop and he was trying so hard to get up and do things. After a good little nap for me, Grayson and I went ballon shopping and Dallas went to get everyone food and head up to the hospital. We all stayed there until Grayson got restless. My dad took Grayson home and Dallas and I stayed. I wanted to have a night to help put Grayson to bed so I went home later in the day.  Grayson and my dad and I went on a quick trip to the toy store. We were on a quest to find an over the door basketball for Tyler. And then Grayson got to pick one toy. That child found the trucks and he was not ever going to leave. Just as we were leaving we found the best mat for him. So him we went.

He was holding up SO good. He was able to stay with Grandpa while Dad came home and I thought he would sleep on the couch but he was still up when Dallas got home!  ( We have always had a strict, strict bedtime of 8-8:30. In the last 2 weeks that has gone out the window. Even now that we are home.... we are LUCKY if everyone is asleep before 11.)

I went back to the hospital to settle in for the night and start over!

We were still struggling to get the darn meds right, ( I mean it is SO hard to take what we get at home and convince a pharmacist to just follow the script or call the doctor.. sheesh )but once we did Tyler had a very good night. He was up bright and early but the nurses didn't even come in as often and we both did pretty good. He never complained and he did really well. I was pretty impressed. This kid is seriously the best kid ever. He is such a super hero.

Surgery Day- May 22

Tyler was one of the first cases that day. We checked in bright and early at 7 am at Phoenix Children's Hospital. Grayson stayed home with my dad, who came to help. The surgery was slated to take up to  8 hours. The list of stuff was long and the doctor was doing it solo. We knew all of those thing. So we prepared our self for a long day.

When surgery started, Tyler was wheeled back happy as could be and he didn't cry. I didn't cry. This was the first time in 9 years that I didn't cry when they took him away from me. They took my cell phone number and Dallas and I went off to find a place that was not a closed in, stink room of grossness. I had remembered from our previous stays that each floor had their own family rooms so we went off in there. I slept a bit but we had numerous texts from our  friends and family. ( Thank you to all who sent them and all the love and support we felt while there) They were very much appreciated. As we got settled in, we were called to run to the 4th floor, Surgery floor, and resign papers. There was a change in plans and the entire surgery is changing. ( Anxiety and our hearts were beating pretty dang fast!!)

We took off and met our surgeon and resigned papers. We agreed that what she was saying was OK. And that no matter what the outside stuff showed, under anesthesia he was a totally different kid and she knew exactly what she needed to do.

We signed.
She left.

The plan was to call me every few hours with an update so that we knew what was going on and what was happening according to plan and where we were by means of extra blood etc. An Arterial line was placed to keep his blood in check so we wouldn't have to transfuse. The nurses were right on in calling and we were kept very up to date.

At 7.5 hours we got the call to head up to the fourth floor and we could met with the surgeon. Dr. Emily came out and went over all that we did and all that we didn't do. A nurse from recover came to get us before Dr. Emily was done talking to us. She was a bit surprised and I am not sure she finished. I felt like I flew out the door to see my kiddo.

Dr. Emily was a bit surprised that he was awake so fast so she went with us to take a peek. Not only was Tyler awake, he was NOT crying and was asking for his mom ( and dad but mom is a sucker!!) because he " Wanted to go play basketball and a Dr. Pepper."

Did I mention he didn't cry!!? I cried!!! He looked so, so good!!

We were only in recovery for about 45 minutes. We called Grandpa and let him know the plan. We had Grandpa and Grayson come up for a little bit to see Tyler. Grayson was a bit concerned that Ty was in the hospital but Grayson did GREAT! Dallas left with my dad that night and I stayed up with Tyler.  Tyler had a pretty restless night.

The nurses and doctors had a issue getting the medicine that he is normally prescribed sent up to him to sleep. So he was up all night. They kept getting his Valium flagged and they were upset over the dosage of his seizure meds and he had no baclofen. There was no muscle relaxers!! The night was so insane. INSANE!!

 I was thankful for day one to be over!!!

Thalassemia

Thalassemia is an inherited blood disorder. It causes abnormal hemoglobin that doesn't have the protein to carry oxygen in the blood where it is suppose to go causing anemia. The disorder can be mild to severe.

That is the diagnosis.

Graysons red blood cells are more oval than they should be. And his red blood cell count, though currently normal, he is on the low end of normal. The test they did on his liver shows that the iron stores that should be in his liver are either super low or non existent.

We add Gummies with iron from Costco since liquid iron makes his skin break out something fierce and barf and more barf.

In a month we redraw labs. If our iron levels haven't moved, we go to the next step.

Long term we don't foresee major issues. With blood work, and a hematologist on board he should be fine. We might see a few blood transfusions in our day but we will be OK.