I have to tell you it's been tough!!

We are on our third night here at Shriners going into our third day after surgery.

It's been tough getting his pain under control . There are a lot of tweaking and moving, meaning repositioning him from side to side.

This is a big surgery! Yesterday he had a lot of visitors and I think that was to much.

Take into consideration what your child can handle. He had a lot of awake time but there were visitors and the rest he really needed didn't happen I think.

I called some friend and told them its not a good time. You have to be okay with doing that. They will understand . There will be lots of times to see him when he gets home.

The hospital is also trying to get him to a base line pain management control and that has been hard to get to.

One thing that I have found to be helpful to my some is imagery. When he is in pain and he gets his meds... They don't always take in-affect right away. So he is all worked up. I try to get him to calm down by trying to take big breaths. If he can't do that I then try to paint him a scene.. I say lets go on a trip.

We have been to were rainbow butterflies and unicorns and Pegasus live. We have been to space, the jungle, to Auntie Mindy's house for fireworks. We have been to the arctic and to an underwater adventure through the eyes of a turtle. We have even owls looking for food at night.

This has helped calm him down! Through these next couple of hrs I am trying to think of everything to help take the pain away.

I feel as though it distracts him from the pain and gives him something else to focus on. We tried. Tv and that didn't work, we tried music and that didn't really help. My Alex seems to like the sound of my voice.

Hope this helps. Some of my tricks that I have found to work sometimes ;)

My heart cries!

Tonight he has been a lot better! He had an episode of pain tonight at 2:00am. My heart cries for him. He calls out to me and I am supposed to comfort and help take the pain away!

There is nothing I can do as my baby cries in pain. I can't pick him up and hold him tight ! Can't take the physical pain away. I CAN be there. I CAN put a cold cloth on his forehead and tell him make believe stories. I CAN take deep breaths with him and the most important I CAN PRAY for him.

I have to be honest I could not be strong for him tonight or I should say this morning! Had to go and cry in the waiting room. I keep telling myself it will get better .. It has to get better ! His body will heal!

As a mother you don't want your son in pain! I went through his seizures and his eye surgeries and his Phnemonia hospital stays, but this is so different! So much has happened to that little body and now it is trying to heal. As much emotional pain I feel for my son he is feeling that much physical pain.

The comfort is in knowing that my father in heaven is watching this little guy , that he knows what is going on! I pray for a calmness And an understanding as to why the medication is not doing what it's supposed to be doing. To have the understanding that there are multiple things going on that can cause him different pain and each meds help treat the different pain.

Well as it is 3:09 am ... I must get sleep.
This is the reality of all this and I want to be real with you guys through the ups and downs of this experience. May you draw comfort if you have a child going through something like this, that your not alone! That there have been others who have and are going through it with you.

In my future post there will be good news! There will be a healing!!

The night after surgery!

Well, I have to tell you everything went well right up until around 10:00 pm, the night after his surgery!

He started to point to his leg and I asked him if his leg hurt. He nodded his head yes. All of the sudden the screams started and the flood of tears came from his eyes. "Mommy mommy mommy, ( mommy wasn't taking his pain away. ) Daddy daddy daddy, ( daddy wasn't coming to take the pain away. ) nanna nanna nanna (nanna was not taking the pain away. Back to Mommy mommy mommy.

The nurse gave him stronger med and he started to calm down a little. I told him lets go on a trip. And we're we will go has a beautiful rainbow and rainbow butterflies ... And the scene when on from there till he calmed down. Then he would be so tired and fall asleep.

This is what it was like every two hours all night long.

My heart was in nots and I was getting little sleep. To see your child like that. There are no words to explain. The worst part was I couldn't just pick him up and hold him! We are in a good place and they took care of it as soon as he started to cry!!

This morning they ordered a dose of epidural . That has gotten him tired today! So I pray today is better! He will be getting another does later this evening which I hope will give him a better night!

My little man is such a fighter. He is brave and strong . Just really tough all around.

Thank you for your prayers keep them coming and I will let you know how he is doing! It can only get better from here!!

The day of the surgery

Well everyone. The surgery went well! We got to Shriners around 5:15. Got to see all the Dr's and anesthesiologists, all the people we needed to see. They have him calming med around 7:00am and took him into the OR around 7:45. He was a little nervous but overall did very well. When they took him back he was given "general" anesthesia as well as an epidural. The nurse called me to tell me around 9:03, they started working in his Rt hip. I can't remember but some were around 11:45 she called to say they were working now in the left hip and all was going well. They finished around 1:48pm.

The Dr. Came out to talk to us. He said that they gave alex an epidural but they had to take it out and put it up higher. Then he told is that the surgery went well and explained what he did. That the actual surgery went smoothly and he had great strong bones. Because of all that he felt that he did not need to put a spica cast on him. I was surprised but was happy! They did say he lost some blood and had to give a blood transfusion . But that recovery seemed really good.

We were able to see Alex about 45 min later. Alex did get a pin in each hip with medal plates holding it .

Now he is sleeping off and on. He is doing great! I have videos to post and once I get that figured out I will post them. Have a great night everyone! I pray for some sleep:)

The night before...

We are almost all ready for Alex's surgery ! I gotta tell you I am overwhelmed! I was trying to post a video on this blog and it didn't work. I ended up having to post it on my Facebook page. I got so upset about not getting it on the blog I burst into tears!

However I think about it and it think it was about Alex. I am calm and collected and well organized up until the night before. I guess it's my time to breath and really take in what is going to happen. My son is having major surgery.

As I sit here writing... I know that I am not in control and that my Heavenly Father is. That gives me peace ! There is so much I can do.

We have to be at Shriners at 5:30am . His surgery is at 7:30 to 8:30.

I will try to write you tomorrow.

Time is drawing near!

So we have made it so far with out getting sick! were are almost to surgery day! Three more days! I pray that my little one does not get sick and that I stay healthy as well.

I have to say that so far I have been very good at getting organized. I am a list maker... I get satisfaction when I get to cross things off that I have done. I also am a visual person so... making list of what I have to do helps organize my thoughts and helps me not to forget anything.

My husband was going to throw out a wipe board that he had from a job he was working on. It was bent on the bottom but not to much. I took it and cleaned it up. On it I put Alex's surgery week. On this I write down a calendar on what will be happening each day we are in the hospital. The times and places were my other kids will be going and doing while we are away. This gives my husband something to look at when he is wondering were his kids are and who is taking care of them. I also put the phone number of who will be watching my kids as well as the Hospital address and the visiting hrs  and room number. I hope this will be helpful to him!

I also made a release form with information for my kids, to give to the adults who will be watching them. It has important medical info as well as their doctor and the hospital they should be taken too incase of an emergence. Along with that I will be giving them an Emergency care Authorization sheet incase neither my husband or myself can be reached. It will give them the authorization to make medical decisions.

Some of you make think this is maybe to much. I feel as though the less I have to worry about the more I can focus on my Alex at the hospital. I will know that everything is taken care off with my absents.  There will be no unknowns for me as well as those who are taking care of my children!

You may choose to do this or may not but... for me it is again a form of control that I have in an uncontrolled situation. My friend and family who will be helping me...I trust with the most precious things I have... My children. They will feel more comfortable and so will I. My children will be well taken care of. :)

Count Down Begins

 


Well the count down begins for Alex's Surgery. It is scheduled for April 15th and will be done at Shriners Hospital. I would not say that I am excited about it but I am glad that it is getting done!

From now until the day of the surgery my biggest challenge is to keep Alex from getting sick! This can be a challenge when you have two other children as well.

Here are some ways I have chosen to minimize the chances of Alex getting sick:

1. He rides the bus and goes to school... for this I have taken him out so that he can not be exposed to sickness and with great discussion with the teacher we thought this might be the best.

2. I don't take him out to public places such as the food store, target, Wal-Mart. Places like that because there are many ways he could get sick from just going to those stores. Such as sitting in the shopping cart.. as crazy as that may sound, kids before him could have been sick their hands are all over the seat.

3. I am having everyone wash their hands and I have that hand sanitizer that you spray into the hands and rub them together.

4. As much as I would love to get together with my friends and do my coffee dates...I am actually having no one come to the house.

5. My older son Eli goes to school... I drive him to school but I have such Amazing friends who pick him up and drive him home from school so that I don't have to have Alex go in and out of the car. (it has been very windy were I live and there is lots of pollen in the air.)

6. Staying in the house can me a tough thing...I sometimes open the door to get circulation of air through out my house. I don't do this all day but some times when it feel stuffy.

7. At night time the heater stays at one or two temperature. This will allow the body to stay around the same temperature through out the night. I am hoping this will help minimize the chances of getting sick.

8. And the most obvious, good sleep and good eating!

You may thinks this is an awful lot to do but... I am taking every pre-caution necessary. A little bit of stress but in the end as a mom, I have no control over something like getting sick. I can only do my best to minimize the chances. I hope this helps if you have a child who has to have surgery as well.

Alex had his pre-op appointment last Monday. I tried to be as organized as I could. One thing that I did that helped, was I looked up on line "What to ask when my child is going in for surgery. ?" It was very helpful. It gave me a list of questions to ask so there would be no surprises. (I like control and this was one way of having a little bit of that in an uncontrolled situation. :)

Questions I asked:

1. How many people will be in the operating room?
2. What kind of anesthesia will be given and how?
3. How much time do I have with my son before he goes in the operating room as well as how soon will I be able to see him once he is out of the operating room.

4. What kind of meds will be used to control the pain once he is out and in the recovery room.
5. What is the protocol if an emergency arises?
6. What are the risks involved with the surgery and with the anesthesia.?
7. How long will it take for the anesthesia to wear off?
8. What kind of pain or discomfort will He feel after the surgery?
9. What restrictions will my child have after surgery?
10. How long till he can go back to school?
11. Can you walk me through what will be happening before, during and after the operation.

There were many more specific questions I asked pertaining to Alex's type of surgery. I right this in  the  hope that it will give you some ideas on how to prepare yourself as a parent.