Monday, June 30, 2014

I guess I wasn't done. A follow up to my earlier post.

I just wiped Jude down with his antigermicide special wipes. He was cold at first so I promised him I would put him in his pajamas shortly. He shivered as I ran the wipes all across him and I held back the tears. As I slipped the pajamas over him Jude started to giggle. I picked out his adorable green St Patrick's pajamas with the green clovers all over them and the phrase "Lucky Dude" on the front. Once I got him in his clothes I started his feed so I could get something in his tummy before I started his medications. Then I gave him his breathing treatment to open up his airways for the surgery.  They will do another breathing treatment prior to surgery.

I turned Jude to his side in case he threw up, I put his boppy under his legs to keep him positioned, his pillow behind his back to keep him from turning, and his special beiege pillow under his ankles to keep his legs in place. I snuggled his blanket around him and I said "Tomorrow they are going to put some medicine in you that will make your legs feel SO much better!!". Then I stopped and said "Jude mommy will be here tomorrow when you wake up. I will hug you so tight and say HI JUDE!" and he just smiled so big like he understood every single word!

This is the part of being Jude's parent that is super hard! It's not the sleepless nights, the diaper changes, or the tube feeds. It's subjecting Jude to procedures that you know will help him but initially cause him pain. It's like when I know he is developing pneumonia and no one will listen.

This part of being a mom is hard. Sometimes our babies go through hard times and we hate to see them hurt. From Emily crawling in my lap over a broken heart to Jude suffering after surgery. All you can do is hold them tight and love them the best we can. I am so lucky I have this little boy in my life. I am grateful for him.

The Pre Op

The Pre-Op went well overall.  We got there and Jude's assigned nurse visited us first getting his medical history, list of medications, and taking his vitals. The nurse was very nice and was very sweet to Jude. Next a very nice RN from anesthesia came in and went over Jude's history. Both nurses seemed very concerned about how wet Jude's cough was and how congested he sounded. They kept asking Charlotte and I questions about his congestion one being "How long has he had this?". Which in turn Charlotte answered "About three years". So true! They were concerned about what seems so normal to us. The anesthesia nurse was very sweet and at one point sat down and said, "He is so happy, clean, and you can tell well cared for". The nurses kept reiterating this line. I said "We have great help and we love him very much, but it makes me sad sometimes to hear this". I explained that every time we call 911 or bring Jude in we hear this same thing. It's so nice, but it makes me wonder how many kids like Jude they see that are not cared for properly. They both responded "You wouldn't believe it!". I heard stories about kids covered in the smell of cigarettes, roaches, filthy, neglected, and not fed right. UGH. Just terrible. I don't understand not caring for your children. I just want to go hold them all. People say "you are so strong". No.............I am just taking care of my child and so should everyone else.

Lastly they took blood so they could get a metabolic reading. They then sent us home with strict instructions on feeding, breathing treatments, and new wipes to clean him with tonight. We have to be back at the hospital by 5:30am. His surgery will be at 7:30 am and we hope he will go to a regular room to recover. If his breathing is an issue they have already said he will then go to PICU for at least 24 hours. He also has to lay flat for at least 48 hours. The challenge with that is keeping pneumonia from setting in.

I am so thankful Emily's dad took her with him to California. I know she will be well cared for and it leaves me time to concentrate on the situation at hand.

On another note I stepped on the scale today and I am considering burning the thing in the backyard. grrrr!

Happy 4th everyone. I will keep you updated on Facebook and as soon as the surgery is over.

Wednesday, June 25, 2014

Starting to prepare

Today we start washing Jude with his antibacterial soap and using the special product on different parts of his body. This will reduce the risk of infection after the surgery.

I put a notice out that I will not be in the office next week. Someone asked me if I would be on no. Honestly, I haven't taken a full week vacation off work for leisure in a long time. I carefully schedule Jude's procedures and doctor appointments on my allotted time off work. It all works out for the most part. If I go over due to Jude's issues my boss generally works with me and subtracts it from the following year.

Jude has been very happy lately! He thinks everything is funny and especially funny when I say "JuJu Bean" in a high pitched voice. If you are not on the Facebook here is a video of Jude. This truly makes me day! He is such a blessing. He knows nothing bad in the world......only love.

Monday, June 23, 2014

Just thinking

Jude's pre-op is in a week.

All I keep thinking of is how happy Jude is. I know this is for the best and we will have a very relaxed Jude after his healing is complete, but my mind still drifts. It makes me sad that I am taking a happy boy into surgery which will cause him pain. I guess this is a normal reaction

I know in the end it will be beneficial. I will just keep telling myself that.

Wednesday, June 18, 2014

Making excuses and getting closer to the surgery

I have had a hard life.

A lot of emotion can be stirred by that tiny little sentence. We humans think in pictures and when you say something as harsh as the above statement our brains become a View master of possible scenario's. It's really not worth going into details because other parties do not need to be drug through it again. Let's just say I could be a poster child for a lot of different problems in America and what people shouldn't do! I was just a child and I got the brunt of it, but learning hard lessons at a young age can have a positive impact. I decided that God gives us two paths and it's up to us which one we choose he is just there to hold our hand. I didn't want to be the victim the rest of my life and blame everyone for what happened to me as a child. I was determined to make my life a success and to have a positive outcome. Overall my life has had it's up and downs, but I think I have done an okay job considering.

We can't always keep everything positive in our lives. Tragedy strikes when you least expect it and sometimes turmoil too. I think it's how you handle that tragedy and turmoil that defines you as a person. We all make mistakes when handling issues in our lives.........goodness knows I am at fault for that. However there comes a time that we have to realize that blaming others, escaping, or wallowing in our sorrow becomes old. I look back on what happened to my mom and I realize that it was so much easier for her to drink vs. face life itself. It's so much easier to blame others and wash away our problems vs. looking internally and figuring out what the real issue is. She has been a great teacher through her tragedy. I have learned to not make excuses for my behavior by blaming it on my past. I have to own what I am doing. However, one thing I have struggled with is accepting I cannot do anything about how others act or react. It's their life...........I cannot change them. It's so hard for me to accept that. I constantly tell Emily, "you cannot expect someone to react the same way you would in a situation because we are all different". Yet I cannot seem to learn that very same lesson.....maybe someday.

Next week we go into safe mode for Jude's surgery. He will be bathed with specific soap and we will keep him away from everyone we can to make sure he is germ free. He has his pre-op on 6/30 and then the surgery will be early on 7/1. I will post prior to then, but please keep Jude in your prayers on that day. Thank you!

Thursday, June 5, 2014

Jude's surgery

We met with the neurosurgeon Dr. Roberts yesterday for the first time since Jude was originally diagnosed with a in utero stroke. He was kind and professional and I remembered him. He took his time to carefully explain the surgical procedure to us. He also explained the risks of the procedure and the benefits. The doctor's main concern is pneumonia since Jude has a lengthy history of battling this issue. After the surgery Jude has to lay horizontal for 48 hours and with his aspiration this can be a concern. So he said they will watch monitor him very closely. He also gave us a prescription for a specific soap and wipes to use five days prior to the surgery. This will eliminate any type of skin "bug" Jude could be carrying.

I asked the Dr how often they do these surgeries. He said it's not like a brain tumor, but they do them a lot. He also said the most common patient are those like Jude so he is familiar with handling a child with a large scope of potential issues.

Jude's pre op will be on Monday 6/30 and the surgery will be 7/1. I will be with Jude everyday at the hospital except Thursday the 3rd due to work. Mike will be with him that day or family. Emily was suppose to attend a wedding but due to the surgery that isn't going to take place. Her father so kindly worked her into his schedule and she will be flying to CA with him. He understands the extensive nature of the surgery so he is really helping out.

Mike put it best yesterday when he told the doctor, "Look we don't want to do this but we know what we have to do. Our main priority is making Jude's quality of life as comfortable as possible". We know the trial was a major success for Jude so therefore we need to move forward.

The doctor did say he thinks Jude has enough "fat" to place the device under his skin vs under his muscle which will be less painful. He said Jude is lean but his weight is a testament to his nutrition and how we monitor him. He seemed pleased, but said he won't know for sure until he puts the device into Jude. So we will pray for the best outcome.

If Jude has to have the surgery I am glad it will be done at cooks. The restaurant area is nice and they are parent friendly.