12-30-09 hospital visit

Mommy and Kai
Kai hooked up to a lot of things, he was getting an EKG done and just slept right through it

Kai getting a sponge bath at the hospital. He was having fun playing in the tub of water next to him.

Kai is doing a little better. He was a little perkier yesterday. He even cracked a few smiles and let out a few giggles. He is still on the TPN IV with lipids. They may start pediatlyte again today. Monday and Tuesday night, Kai's heart rate dipped down on the overnight. So yesterday, they did an EKG (don't know the results yet) and then they hooked him up to a heart monitor and watched his heart rate. Yesterday they ran blood work again. I don't remember all the results, but they ran one test that was an infection indicator. This showed that Kai still has an infection. I'm not sure what their plan, maybe switch to a different antibiotic. The skin wound specialist came by and put this special patch thing over his J stoma site to help the site heal better. Kai also got a visit from his genetics doctor. She had explained some things about the skin biopsy, but I wouldn't be able to write about it even if I really tried...too many scientific names LOL! It was great that she had visit. She is a wonderful doctor and we know that Kai is in good hands with her.

Gavin and Jace are having a hard time with this all. They both really miss Kai and want to visit him. Gavin doesn't understand why he can't visit Kai. He told him "I got to visit him before" and then brought out the picture of when the boys got to visit Kai when he was in the NICU. I feel really bad. I just keep telling them that they aren't my rules, they are the hospital. I try to explain about all the icky germs. It's tough! They nice thing is they have been getting a lot of Grandma and Grandpa time. The love hanging out with them. They also got to play at Angie's yesterday. So that was nice that the got to play with some kids. It's tough as parent getting pulled in every direction and always know how to divide yourself.

Kai on PEDS floor

Kai on December 28, 2009

Kai got moved from the ICU to the regular PEDS floor on Sunday, the 27th. He is doing better. No more fever! He looks so much better than when he was first brought in. They still don't know what infection he had. They had him on two big antibiotics. They kinda thought, infection in his blood, MRSA, or a urinary infection, but they just don't know. They took him off of one of the antibiotics yesterday and so far is doing fine, so that is good. He has been getting pedialyte through his J tube. On Sunday, he was leaking a lot out the site of the J (leaking pedialyte). So, he was to give the J tube a break and just increase the fluids on his IV. Yesterday, they started the pediatlyte again and YEP, it started leaking again. So last night they put in a TPN, a main line IV. This will allow them to give him more nutrients. They are going to do this for about 2 days to give his intestines a rest. I talked to Kai's nurse this morning and it sounds like they are going to start with pedialyte again tomorrow. They are hoping that this leak will magically disappear. If it leaks again, then it sounds like they are talking about surgery. So right now, we are basically playing the waiting game. Kai will be in the hospital for at least a few days yet. He needs to be back on track with feedings and everything has to look good before he can be discharged. So that is the latest on Kai. Today I am taking a break from the hospital and trying to get caught up on things and spend some time with Gavin and Jace.

ICU-Children's

Kai was admitted into the Intensive Care Unit at Children's Hospital Christmas morning. He was running a fever, was lethargic and dehydrated. At first they were worried that his small intestine was leaking (from after the surgery), but luckily it wasn't because that would have required surgery. They ran some tests and kept an eye on his white blood cell count. They knew that he had some kind of infection, but wasn't sure what exactly. They were thinking an infection in his blood, but still unsure. Levi and I spent Christmas at the hospital with him. He went from lethargic to very irritable and inconsolable. That was sign that he was starting to feel a little better. Then ended up giving him something similar to Valium to relax him. The next day he was slowly getting better, but still irritable. But least he was consolable that day. They started some pedialyte that day through his J tube and slowly increased until he got to 30 mls per hour. On Sunday, the 27th Kai got moved out of the ICU and onto the regular PEDS floor.

Christmas 2009

Christmas started off with Kai at the ER in Mankato. We got there just a little after midnight. When we first got there, I believe Kai's fever was about 102.2. He did not look good at all. Shortly after we got there, it was decided that it would be best to get Kai to Children's Hospital. At first they were sure if they were able to transport due to the weather. They did some chest x-rays on Kai. Got him started on an IV and ran some blood tests. After about two hours of being, Kai looked absolutely horrible. He was at the point that no parent wants to see their child. His fever went up to 103 point something. He was very lethargic and dehydrated. Once they were able to get the IV in, they were able to get some fluids going. The labs results came back and showed that his white blood cell count was really low. They got some antibiotics started on him. By the time the ambulance crew got there, Kai looked a little better. Levi rode with Kai in the ambulance up to Children's Hospital in the snow storm. From Mankato, Children's is probably about 1.5 hrs away. It took the ambulance 3 hrs to get there. They arrived at Children's Hospital around 6 am. Kai was admitted into the Pediatric Intensive Care Unit. I had gone home to get the boys situated with grandma and waited until daylight and the roads to be plowed before venturing up to the hospital. For the continuation, see next post.

Christmas Eve 2009

Family Picture Christmas Eve
Levi and I

Our boys (poor Kai wasn't feeling that great)

Gavin and Jace after opening their presents

Christmas Eve at Grandma's (Kai really not feeling the greatest)

Christmas Eve at Grandma's; Jace is very excited that he got a jacket like daddy's

Opening presents Christmas Eve at Grandma's

Our Christmas Eve was not the typically Christmas Eve. Kai started a fever at wee hours in the morning. We brought him into the clinic right away that morning. The doctor concluded that he needed some pain management, so he was prescribed some pain medicine. At this point, Kai was seemed to be tolerating his G tube feedings (we had decreased to amount). Levi and the boys played out the snow in the afternoon and then the boys took naps. After naps, we opened presents and the boys played a little before going to Grandma's. We went to Levi's mom's in the evening. By this point Kai was not feeling that great at all and he had a pretty good fever, but he couldn't have anymore medicine. So we just got him down to his onesie and tried to cool him down with a cool wash cloth. We did the Christmas dinner and presents there and then went home. Kai was still running a fever and by bedtime-ish we were able to give him some more medicine. We put Kai to bed and started his overnight feeding (on the J-Tube) at around 10 pm. At about 11:30, Kai woke up and was extremely fussy. He had a pretty good fever at that time and then started vomiting the yellow stomach junk. Got him changed and tried to cool him down. He did not look very good at all. We ended up taking him into ER in Mankato just a little after midnight. For the contiuation, please read the next post.

Post Surgery-Kai

Kai post surgery a few days before discharge
He was getting back into playing

Kai was discharged from having surgery at Children's mid day on December 23rd. After we got home, we started up his regular feedings (on the G tube). Not too long after, Kai was vomiting. After talking to his dietitian, we thought he was just too full since he was on a continuous feed while in the hospital. Later that night we started his overnight feed (on the J tube). Not too far into the feeding, Kai started vomiting again. This time it was yellow stomach acid stuff. We were unsuccessful getting a hold of the pediatrician on call that night and decided to just take him into the clinic the next morning. We slowed his feeding down for the night and he slept on and off throughout the night. For the continuation, please reading the next post.

Quick update on Kai

For those who haven't heard, Kai got transported by ambulance up to Children's hospital wee hours in the morning of Christmas (yes during that nasty snow storm). He was brought into the Intensive Care Unit. He was lethargic, dehydrated and running a fever. He got some kind of infection. From my understanding they believe it may be an infection in his blood. Yesterday (the 27th), Kai was moved out of ICU and onto the regular PEDS floor. He is doing better and no longer has a fever. He is having issues with his J tube leaking on the outside. Not sure exactly what is going to go on with that. Kai will be in the hospital for at least a few more days. I haven't had much time to blog. He had just gotten discharged from the hospital on the 23rd and then ended up in the ER the night of the 24th. So it's been crazy around here at the Selly house. Levi and I haven't had much time with Gavin and Jace either. We are lucky that Grandpa and Grandma have been able to take them. I will try to update with more details soon.

Kai's surgery went well

Kai had surgery yesterday. Everything went well. He is doing fine. He is in some pain and is on some pain medicine. So he is sleepy. He seems really exhausted as well. He's not really even interested in his nuk. If you know Kai, he loves his nuk! For those who don't know all what Kai had done yesterday, here's a quick overview. Kai had a CT scan of his lungs, several blood test drawn (he has so many poke holes in him :( ). Some of the blood test was for hematology. One of the things they were testing for was to seeing how long it takes for Kai's blood to clot. The other blood tests were for food allergies. Kai also had that testicle surgery done (his had not drop down on his own). They also remove some white pus stuff. During this time they found a hernia, which they took care of. The next big surgery was the j tube placement. He had a j tube put in. The made about a 2 inch incision above his belly button. They cut through his bowel to place this feeding tube. Where they made this incision, they also did a skin biopsy. So now Kai has two separate feed tubes. A g-tube button and a j-tube peg. In a few months we can switch the peg over to a button. Kai has incisions and stitches in 6 places. Kai is in the IMC at Children's. This unit is a step down from the ICC. He is monitored more than if he were on a regular floor. Well, off to the hospital we go. For some security reasons, I'm not able to log into our blog at the hospital. I will post again soon.

Kai's surgery day

Today is Kai's surgery day. He will be in the hospital for a few days. We will keep everyone posted.

Kai's surgery day

Kai is scheduled for surgery this Friday, assuming he stays healthy for the next few days. He had his pre-opt this morning and he looks good. He still has just a little bit of a cold, but that is it. We are trying to keep him away from people as much as possible this week to avoid him catching any sickness. Levi and I will be staying in the cities Friday through Monday (possibly longer depending on how things go). We will have internet access, so we will be able to keep everyone posted on how Kai is doing. Until next time!

Kai is 14 months old!

Kai is now 14 months old! He is weighing in at 16lbs 3 ozs. He is still pretty small for his age, but don't let that fool you. He does a lot of the same things that an average 14 month old does. He likes to get into everything and he throws little fits when he is mad, especially when you take something away from him. So he may be tiny and have some physical handicaps, but cognitively, Kai is pretty much a toddler!

Kai getting into the dishwasher as I load it.
Kai helping himself to some cereal.

Christmas Tree

The boys, 2009

Kai (didn't wash his face very good after he ate)

Knees

This past week, Kai has been pulling himself up on his knees. It's so exciting to see him do that. It helps that he is acting like a normal toddler, in the aspect of "getting into things".

Snow

Pictures of our drifted sidewalk, I think the deepest part came to about my hip. I gave up on shoveling a path ;)

Kai

Kai is now almost 14 months old! I can't believe that he is that old already. Of course it doesn't help that he doesn't look his age. He is still weighing in at 15 lbs 11 ozs and 29 inches long. He has not gained any weight or grown in height in the past 3-4 weeks. I think partly due to the fact that he has had some upper respiratory gunk and that he is on the go so much. He gets around and gets to places he wants to go. He is still doing the tummy crawl, but pushes with his right foot. He doesn't like to stay in one room, he likes to be where everyone else is at. He is starting to pull himself up onto his knees, although he is not in proper position. He tries very hard to get into things he isn't suppose to be in ;) Now that he is more mobile, he doesn't always enjoy having his leg braces on. I think once he figures out what else he can do when he has his braces on, he won't mind having them on. Even though Kai is not a normal toddler, he sometimes sure acts like one! He gets mad when you tell him "no" and take things away that he shouldn't have. He gets mad when Gavin or Jace takes things away from. Already fighting with the brothers! Sometimes I look at other kids around the same age as Kai and I get a little sad. But after reflecting on all that Kai has accomplished, I am happy and so proud of him! He is definitely one unique little boy and I love him to death! Last week Kai got his right hearing aid re-molded. He ear has grown and changed a bit. We should be getting the new ear mold in a few weeks. He is definitely doing more babbling talk. He seems to be starting to understand what some words mean. At the end of this week, Kai will be visiting the neurologist and the upper extremities doctor. Next week, Kai and I are going to "hibernate" to avoid being around any sickness. We need to keep him as healthy as possible for his surgery day. He is scheduled for surgery on December 18 and will be in the hospital for 3-5 days, possibly 7. Hopefully he will get out in time for Christmas. I will keep everyone posted.

Kai in his stander

Kai in his new carseat; Combi Zeus 360, LOVE IT!

Very sleepy Kai

Kai doesn't like to stay put, he keeps flipping around in this chair

Kai in a new highchair that the school brought for him to use

Kai playing on his 4 wheeler

Holidays

Due to Kai's surgery and everyone's schedule, we did Christmas early with my sisters. Below is a picture of me, my sisters and all of our kids.

Jace and cousin Madison

Gavin playing with Cousin Ryan and Cousin Kaylee

Below is a picture of Levi's parents with the grandkids on Thanksgiving Day

Gavin, Jace, Kai and cousin Charlie

Wow, it's been awhile!

The boys! It's hard to get a picture with all three of them looking at the camera at the same time!
Gavin and Jace camping with Grandma and Grandpa

Kai, Jace and Gavin playing with beans

The boys keep very busy. It's definitely never quiet or dull around our house. Gavin is really enjoying preschool at Little Lambs. It's amazing how much he absorbs from school. He has just been a sponge lately. He is growing up so fast! I can't believe he is going to be 5 in a few months. Both boys are enjoying Sunday School as well. They have been busy practicing for the Christmas program at church. Jace is also really enjoying school. He loves riding the school bus! He is doing good at school and has had some really nice language improvement. He is still going to therapy every week as well. Jace's eating habits are getting a little better. He is more willing to try new foods. Last Friday, Jace had an assessment done at the Development and Behavior Clinic. He did really well. By the end of the day, they concluded that Jace has Overanxious Disorder of Childhood with Obsessive Compulsive Features. That's a big label! It was kind of a lot to take in, but we had already know about some of the OCD features. The physician that was there also notice that Jace had large tonsils and fluid in his ear that he doesn't have a tube in. This could be a reason why Jace doesn't sleep through the night. Recommendations that were made was to have the tonsils and adenoids removed, medication for the big label and possibly some in home therapy as well. Jace has an appointment with his regular doctor in a few weeks to talk about meds. And then he also has an appointment in early January with ENT. So hopefully once we get these few things taken care of, Jace will sleep better throughout the night have and maybe some of his behaviors will change. I will keep everyone posted as time goes on.

I was going to set our blog to private, but then decided not to since there are so many people that follow. If you leave a comment, please tell us who you are and how you came in contact with our blog. Thanks!

Working on walking

Kai at therapy

Kai is on the go!

Kai is moving all over the place. We had to finally put the gate back up at the top of the stairs. He does not like to just stay in the living area. He loves to chase after Gavin and Jace. He is still just tummy crawling, but he can get places fast! He uses all of us upper body strength and basically drags his back end. Check out the video in the previous post.

Today Kai saw the pulmonologist. From listening and looking at the most recent chest x-ray, everything looks pretty good right at this time. Still don't know exactly what that spot is on his lung. This doctor is going to try to coordinate a CT scan to be done at the time of his surgery. This will give him more information on Kai and then we will go from there once that is done. Otherwise right now, Kai obviously needs to avoid sick people and the doc said to make sure he isn't around 2nd hand smoke. I don't remember all the technical stuff he said about some of Kai's pulmonary stuff. I might have to just a give another little update when I get the dictation from this appointment.

We finally got a surgery date for Kai. He will have surgery on Friday, December 18th up at Children's. It's a little later than I had hoped for, but it was the earliest that they could coordinate with both of the doctors that will be performing the surgeries. It will be a busy day for him. Besides having the surgeries, he will also have some blood work done, possibly a skin biopsy, and hopefully the CT scan. Kai will then be in the hospital for about 3-5 days.

We get a little break from Kai's doctor appointments. No scheduled appointments now until December 10th! It is a much needed break.

Until the next post!

Video of Kai chasing a balloon

A little update on Kai

Kai has recently visited the eye doctor and cardiologist. Eye doc says things look good. We need to continue the eye ointment at night. Kai's right eye doesn't always shut when he sleeps, so he gets dry eye. Otherwise, he's good right now in that area. He will see the eye doc again in 4 months. He also saw a cardiologist. They looked at his previous chest x-ray and did an echo cardiogram on his heart. Things look great as far as his heart and he doesn't have to go back for 3 years!

Last week, Kai met up with a urologist. His testicles have not dropped yet. He will have that surgery done when he has his other surgery. We met up with the surgeon and talked over things about his surgery. Kai will have a j-tube placement done. So he will have a second feeding tube (a second hole) put in. He will have both surgeries done at the same time up at Children's Hospital. He will also have some different blood work done and possibly another skin biopsy. He will be in the hospital for 3-5 days, depending on how he is doing. We have not got a surgery date yet. Hopefully we will find out the date soon. Kai also met up with an endocrinologist last week. At this point, this doc has nothing to help Kai, especially since he is growing. Even though his growth is not at the pace we would like it at.

On Monday, Kai gets to visit the pulmonalogist (sp?) --lung doc and he is also having a car seat evaluation done at Gillette. After these appointments, Kai's busy appointment schedule should tame down for a little while. It has been an extremely busy month for appointments for him.

Until the next update!

Pumpkins and Halloween

Kai

Jace

Gavin