Our “New” Normal Life….
I would like to thank you all for your kind words, prayers and support. Even though I may not have answered you personally, I have read your comments and they meant so much to me. Especially as I would read them from the hospital.
We are now home and the surgery went well. For those of you who would like to know how things went and how we are doing, I thought I would let you read the emails that I sent out each day during the surgery. I promise that I will soon be back to posting about gardening 🙂
Kai getting ready for his first outing….to the mailbox.
Well, we are now in the waiting room and Kai has just been taken into surgery. He did very well this morning, although we could tell he was nervous. As soon as he walked into pre-op, they let him choose a stuffed animal to keep. He chose a little dog that looks like our dog, Tobey.
They gave Kai some medication, Versed, to make him less nervous, but warned us that it may make him sleepy or act like he is drunk. Well, Kai certainly acted drunk. It was really kind of hilarious. I have had Versed before, a few times, but do not remember what I did, which is probably a good thing 🙂
We finally had to take turns sitting next to Kai on his bed and holding him in our arms so that he would not fall out. The hospital chaplain came to visit and led us in prayer before surgery. I know that Kai won’t remember that.
As I was holding Kai in my arms, he looked at his dad and the doctor and said that they each had two heads. Then he looked up at me and tried to touch my nose.
Kai has had the same anesthesiologist before and he remembered Kai, which was nice. The doctor talked to us and went into more detail about what they were going to do. They will remove the old plate and screws from his hip and replace them due to metal fatigue. Then the will enlarge the hip socket and perform another bone graft.
We have been through this before, which makes it easier in some ways and I was doing pretty good today until Kai was being wheeled into surgery. As we were walking down the hall away from Kai after kissing him goodbye. As I turned back, Kai was watching and I waved goodbye and he returned my wave….then he held out his arms for me to hold him as they wheeled him through the door. I started to lose it then, but thankfully Kai did not notice.
Surgery should take 2 – 3 hours. Thank you all so much for your prayers and support.
I will update more later 🙂
Friday – Post Surgery:
Kai’s surgery lasted 2 1/2 hours. They ended up doing more than we had expected. They removed the metal plate and screws that have been holding Kai’s hip in it’s socket due to ‘metal fatigue’ and replaced them. They also had to cut his femur as part of the procedure as well as perform a bone graft. After the surgery, we went back to post-op and sat with Kai. He was in pain, but as soon as they gave him morphine, he drifted off and slept soundly. He snores after surgery, just like he does when he normally sleeps.
We were taken to Kai’s room very quickly and settled in. Kai’s legs are being held in a foam structure to keep them from moving in order to keep his hip still.
The doctor said that the surgery went well but we had to be very careful not to move his hip since there are only a few screws holding it together…..his words, not mine. That is what makes me so nervous when we take him home and we have to lift him to go to bed and to the bathroom.
Kai’s pain is quite intense and he gets morphine every 2 hours. But he did have a little appetite for dinner (he was sick to his stomach earlier). When they asked him what foods he liked, he said “everything”. They then asked if there was anything he didn’t like and he said “salad”. I didn’t know that….we have salad a few times a week and he never complains.
We were so encouraged today by a visit by my brother, our pastor, my in-laws who brought us pizza and our friend who is a nurse and the house supervisor at the hospital and a good friend from our small group at church. She has made our stay at the hospital as nice as can be. As I mentioned before, she was there with us in pre-op and then in recovery and then made sure that we were assigned a nice, quite hospital room by ourselves. She even came by later before she left for the day and gave Kai a gift. Tonight, my cousin is stopping by to visit.
Kai’s dad is spending tonight with Kai and the doctor will come by tomorrow morning to check on Kai and see if he will be able to come home tomorrow. While I am excited to get Kai at home, it brings a whole host of different stresses since we do need to move him from time to time and it really hurts him.
I could write more, but I only got 5 hours of sleep last night and am a little tired 🙂
I just want to thank you all so much for your support and prayers today.
This morning, we found out some disappointing news. Kai will have to spend another night in the hospital. He is having too much pain for him to be able to come home. They now have him on both morphine and valium.
This is the first time after six surgeries that he will have to spend a second night, which disappointing, but I would rather have him in the hospital where they can better handle his pain then here at home. So, I will spend tonight with him so that his dad can get a good night’s sleep at home.
Kai is upset that he cannot go home too and he misses his sisters. So, I am bringing them today to help cheer him up.
Thank you again for your prayers….they are much appreciated.
Right now, it is very peaceful in Kai’s hospital room, except for his snoring. It is actually a very sweet sound because it means his pain is being managed enough for him to sleep.
Every two hours, he does experience significant pain and receives more pain medication. But, he is handling it very well. Kai is very sensitive to his bed being bumped or anyone even leaning on it because it hurts him. He asked me very politely “Momma, could you please not bump the bed.” If it were me, I probably wouldn’t be quite as polite.
We have been so blessed by family and friends. The only time that Kai smiles is when someone comes to visit him. His sisters all came today and his brother-in-law along with grandparents, cousins and friends. Kai is happy they are here, but he is usually preoccupied by his discomfort.
Later this evening, he started to cry because he was homesick. Hopefully, he can go home tomorrow….we are optimistic about that. We did discover movie channels a little while ago that play kid movies, which made Kai very happy. He also ate a fairly good dinner, which is always a good sign.
Kai’s dad has gone home to get a good night’s sleep and I am getting ready to watch a DVD on my laptop before I try to sleep in 2 hour increments (between pain medications).
Thank you again for your support and prayers.
Well, we made it home! As nice as everyone was at the hospital, I am so happy to be home.
Yesterday, Kai’s dad left after dinner to go home and sleep….he really needed it. Kai and I were doing pretty well and he was still receiving morphine to help manage his pain. As long as he was on morphine, he had to stay in the hospital. Kai went to sleep at 9:00 last night and I was getting ready to when we found out that they would be moving a new patient into the adjoining bed. And so, once the new little boy and his dad were settled in, I fell asleep around 1:00 a.m.**I almost hate to mention this, but both the little boy and his dad snored and it was really hard to sleep.
Even though I didn’t get to sleep until late, the night was not without it’s victories. Kai slept for 5 hours straight and only woke up because his IV machine was beeping. Before, Kai would regularly require pain medication every 2 hours. The other great part was that since he was doing so well, we decided not to add the morphine to his other medications to see how he would do. He did great.
After sleeping a total of 4 hours in 2 hour spurts, I waited for the doctor to arrive at 6 a.m. He was happy with Kai’s progress and said that he could go home later once we met with the Physical Therapist and practice how to lift and move Kai. We have done this for him after his previous surgeries, but it is always helpful to have a refresher course.
I wish that I could say that Kai had a nice time this morning in the hospital, but he didn’t. Between being moved, which is scary and does hurt, he also had to have the dressing on his surgery incisions changed. This meant that Kai had to be almost on his side which was scary for him, but he was really so brave.
He does not like being moved and starts to tell us exactly how to move him (he gets a bit bossy), but he does it so politely, it is almost funny. For example “Dad, don’t lift my legs until you lift the rest of me….please?”
Once we got him into his wheelchair, we took him around the hospital to see the sights. We even ventured outdoors….there is just something so rejuvenating about enjoying the outdoors after being stuck inside for a couple of days.
We went by the cafeteria and the vending machines and let him pick whatever he wanted to eat and drink. Kai chose a bag of Cheetos and bottle of Orange Fanta soda – definitely NOT things that we let him eat usually. Then on the way home, we stopped by the McDonald’s drive-thru for lunch. I did mention that once we get home, we will be back to eating our ‘normal’ foods and he will need to eat what I cook for dinner. Actually, Kai eats pretty much anything and actually likes my cooking and never complains about food 😉
I was so tired after we got home that Kai’s dad took care of everything so that I could “check-out” for a few hours for a nap. I feel so much better now.
We would appreciate your prayers for Kai’s continued healing and that the pain will lessen. He is still in pain, but it is manageable. Also for endurance as we take care of his every need. I put the gifts he received in the hospital in a gift bag next to him so he can easily pick what he wants to play with – although he isn’t playing with anything today…maybe tomorrow.
Thank you for your support and prayers.
I hope you aren’t getting tired of these updates…if you are, I honestly don’t mind if you delete it. But for me, in addition to updating our family friends, they are also a good way to document our journey with Kai.
Kai is doing better in general. He is definitely happy to be at home. He slept fairly well last night in his own bed and his dad spent the night on the floor in his room. Kai has to take medication every 2 hours.
He is definitely more involved in the happenings of our daily life. Like previous surgical recovery episodes, Kai’s day revolves around being in one of 3 places….in a bed we made for him on the floor in the family room, in the bed in his room and in his wheelchair.
Up till now, his dad has been the one carrying him from place to place, but I started carrying him today as well. He has definitely grown in the two years since I have had to carry him….he is heavier. After the first time I carried him, he said, Dad does it different then you…..I don’t touch his chest when he carries me.” I told him that my chest is a little different from his dad’s 😉
Kai’s appetite is gradually coming back which always makes me happy. He is still in pain, but it is less then the day before. We gave him a sponge bath tonight, which made him feel more human. He asked me to push his wheelchair to where his sisters were playing Wii. He doesn’t feel comfortable using his left hand where he had his IV, so he just encourages them as they play their game and gives advice.
Kai’s sense of humor is returning too. His grandparents bought him a giant cookie cake and I cut it up into slices for everyone. Kai wanted the one with his name on it and as soon as I cut it, I said, “Here is your cookie”. And Kai replied, “I can’t quite reach it,” all the way from the family room.
For my husband and I, our lives are slowly getting back to normal. We are mentally and physically tired and are having to fulfill all of Kai’s needs….. getting him water & food, repositioning his legs and body a couple of time each hour, bringing him his toys, helping him go to the bathroom, etc. Even making dinner tonight was a chore because I had to keep pausing to help him. We did try to do some normal things today like going to the gym as well as making a homemade dinner. That seems to help us settle back into our old and now modified routine.
The girls are being so nice and understanding and we are working on spending time with each of them. When Kai is in pain, he likes having his left foot massaged and the girls have also learned how to do it. Kai says when his foot is massaged that it helps the pain in his hip.
Today, Kai will go on his first outing….our weekly Tuesday night dinner at my mom’s. Kai will be happy to see his aunt, uncle and cousins.
Thank you all again for your prayers.
I hope you all had a wonderful holiday weekend.
Noelle, thank you for sharing the emails with us. I can't imagine how hard it must be for all of you, what a brave little boy Kai is. I will continue to keep him in my thoughts and prayers during his recovery.
Oh, Noelle, I am so sorry to hear about your sweet Kai needing surgery! He sounds like an amazing little boy, and so strong. I don't know if I would have been as polite as he was about the bed bumping, either! 🙂 Hugs and prayers being sent your way. So glad he is back at home and recovering well!
Tell Kai I think he looks very cool in those shades ! Handsome , brave boy , God will take care of him, Gina
And Noelle, your older daughter who hurt her feet? Has she recovered?
I read every word till the end with trepidation and am so thankful he is now home. Wishing him a speedy and successful recovery.
Thanks for keeping us up to date. To be honest, I knew very little about Kai's series of surgeries. Whit and I will be praying for you all.
Big hugs all the way from Australia for your little soldier, yourself and the rest of your family -including aunts, uncles and grandparenst who all suffer when a little boy is hurting. Tell Kai that as I am typing this I have looked out of my window and watched two big kangaroos hop past my house!! That doesn't happen very often so maybe they wanted to say "hi" as well.
Thanks for letting us all know how he is doing. What a strong boy. Blessings to you all.
It's always so stressful when a loved one needs surgery or is in the hospital. It's good Kai is home but I know the next few weeks will be as difficult for you and your husband as it will be for Kai. I don't what to say except hang in there!
Wow, Noelle. I was getting very teary reading that…
I'm sorry you have to go through so much, although it's worth it for your son. I don't have any kids, so I don't know what that's like. I can only imagine…you're an awesome mum, and I hope things continue to brighten for your family 🙂
Dear Noelle, Thank you so much for sharing the emails. My husband and I have had Kai, you, and your family on our minds (and in our prayers) all weekend … we are so relieved he is home and on the way to recovery! We will continue to keep the brave (and so polite) young man and his wonderful family in our prayers. Pam x
PS Don't worry about garden blogging … we understand.
Glad to hear the surgery went well and he looks very cool in his shades. Sounds like you have a very close family with lots of love and support. He is a cutie!
I am glad you all are home!
Glad the surgery went well. And, I agree…he does look cool, in his shades.
Sounds like you still have a lot of work ahead.
Such a big surgery for Kai, I'm so glad that he's now home. Each day will get better, and he has the advantage of youth on his side. Sending speedy healing wishes in Kai's direction, and hoping that your old normal returns soon.
Bless your hearts Noelle. I've missed this whole thing for some reason.
I believe Kai's healing will be swifter and more complete now that he is home.
May God's love, peace and strength surround and flow through all of you.
Hugs ~ FlowerLady
Bless his little heart. What a trooper he has had to go through so much. Glad to hear he is now doing better ad is home. We will still be praying that he heals fast and all goes well.Thanks for sharing the news with us Noelle.
Hi Noelle…thinking of you and your family and wishing you all the best! ((hugs))
Oh my Noelle, the things you have all been through. Kai sounds like a brave young man, with patience we could all learn from! Prayers going out for all of you. Hope you are getting some rest too.
Glad the surgery went well. Tell Kai that I think he is a very brave and strong boy,and handsome too! He has the best parents in the whole world! My best wishes to Kai and you all!
Noelle, God bless Kai, you and your family! He's such a strong boy, both mentally and physically, that I have no doubt he'll be up and about in no time! All the best, Arleen.
Noelle thankyou so much for letting us see your personal emails to your family. Kai has been through so much these past few days and he's been ever so courageous considering all the pain he has been in. I'm so glad he is at home again with you all and that you are all getting some needed rest. It must be such a relief having the operation over now as it must have been heavy on your mind in the past few weeks.
God Bless you all at this time and (((hugs))) to Kai . Rosie xxx
Noelle, Thank you for sharing this with us. Kai is so brave! I'm glad that the surgery went well, but I hope that the pain has lessened. I wish him a speedy recovery so that he can soon be back on his feet, playing Wii with his sisters and checking out his special rose. Keeping you in my thoughts and prayers,
Hi Noelle, be strong our prayers go for Kai and your family. Kai is such an old soul, and your family is so wonderful for him. May he be fully blessed and recover soonest. Take care of yourself also.
So glad he made it through surgery well and is back at home. Definitely no place like home 🙂
I hope is pain is lessening and he gets to go out on some more outings soon.
Thanks for posting the e-mails. I've wondered how Kai was. He's got more strength of character than most people thrice his age.
Hope he continues to heal well, recovery is fast, and you're visited with extra strength.
He looks like a rocker with those shades. That's a lot of surgeries for one little body, though it sounds like he handles it well. It's not easy looking after someone after a surgery. Best of luck.
Please know that your family is in my prayers. Many times I think about you and your family and hope that things are getting better all the time!
Noelle, we've prayed for each of you all weekend and all week. I'm so glad to hear a good report. Your little Kai is such a trouper. We'll continue to keep you all in our prayers!
BTW…my children have taken a special interest in Kai and his recovery. Please tell him he has long distance friends that are thinking of him!
Noelle, my heart goes out to you and your family as you readjust to the new "normal" — which sounds pretty exhausting. Luckily, you all have so much love between you to smooth over any friction that arises from the exhaustion and frustration. 🙂
I've been out of the loop for awhile and I'm so sorry to see this. Glad, though, to read through the updates and to see that Kai is improving.
Hi Noelle, your Kia sounds like an incredible little man coping with all of that pain and discomfort and still managing to be polite! I can't imagine what it would be like to watch your little one go in for major surgery.
I hope his recovery continues to go along well and send you wishes for lots of energy and very revitalizing sleep when your get the chance to get some!
Noelle, Best wishes to all of you. Kai is such a lucky kid to have found your family!
It's good to see that you are all back home. Poor little boy having to suffer all that pain. Will he have to have these operations every couple of years because of metal fatigue, I wonder? He is certainly special.
Having been an 'infrequent blogger' and facebook user as of late, I have not visited you on either place for a while. I'm sorry I missed most of this–but so happy that Kai is home and beginning his recovery. I remember you had mentioned this a while back. So happy to hear your little guy got through the surgery and is now home. I wish you all the best during this time:-)
Hugs to you and your family. Having worked through a huge recovery (in our case, a spinal cord injury) I have particular empathy for what you are all going through.
it sounds like you already know this, but I'll say this anyway: Savor the little victories. Keep laughing. Give yourself the time you need to recover, both physically and mentally. Your whole family is involved in this recovery.
When Kai is more mobile, I wonder if he might benefit from the use of an adapted bike? Even if he can't run, he'd probably love to zoom around, with the wind in his hair. There are all sorts of great bikes and trikes (and tandem bikes) made for kids with special needs. Perhaps your insurance might cover this, as part of physical therapy.
My sweetie Robb is partially paralyzed with paraplegia, but he's cycled over four thousand miles since his accident.
Thank you so much for your thoughtful comments. They have really helped me during these difficult days. Kai is doing much better. Hopefully he will soon be able to sit upright.
My daughter, Brittney, has finally gotten rid of her casts and is walking well. Thank you for asking.
Mary-Anne, I told my son about the kangaroos and it brought a smile of wonderment to his face.
Lisa & Robb, thank you for the helpful tips. I will definitely have to look into that.
Thank you all again!
Glad to hear Kai is doing better. You have such a lovely family and I truly admire both you and your family.
Bless his heart and yours too! Wonderful photo of Kai!