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.

Friday:

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 🙂

Noelle

Friday – Post Surgery:

Hello Again,

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.

-Noelle

Saturday:

Hello Everyone,

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.

Noelle

Saturday Night:

Hello,

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.

Noelle

Sunday:

Hello,

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.

Noelle

Monday:

Hello,

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

The Long Road Back…

Noelle Johnson, aka, 'AZ Plant Lady' is a author, horticulturist, and landscape consultant who helps people learn how to create, grow, and maintain beautiful desert gardens that thrive in a hot, dry climate. She does this through her consulting services, her online class Desert Gardening 101, and her monthly membership club, Through the Garden Gate. As she likes to tell desert-dwellers, "Gardening in the desert isn't hard, but it is different."