9-28-09 - Week of Sept. 21 through Sept. 27

Another quiet week for the Troxtel's. Monday we had no nurse because her family was sick. Dad just hung out with Aidan all day. Below is a picture I took Monday when I walked out of my office to get a drink of water:



Tuesday, Thursday and Saturday were dialysis days. Pretty uneventful.

Wednesday the early on team came to the house again and worked with Aidan.

Friday night Erik and I were able to go out for our anniversary. We went out to dinner, Best Buy to look for a new dishwasher then headed over to Target. We picked up a couple of Halloween outfits for Aidan.



Saturday Aidan wore his Michigan outfit that Grandma and Grandpa Marino got for him:



Sunday we gave Aidan a bath in the tub. He was a little weary in the beginning but then realized that he was able to kick his feet under the water and had a great time.





After the bath we put Aidan in his Lions shirt that daddy got for him from the game last week. The shirt must have worked because the Lions won for the first time in over 2 years. Daddy is convinced that Aidan wearing his shirt on Sunday helped the Lions win and he stated that Aidan has to wear it every Sunday now.

The big news for the week is that Aidan crawled a little on Wednesday. We were so excited. It was just a couple of steps forward but it was a big accomplishment for him.

9-21-09 - Week of Sept. 14 through Sept. 20

Erik and I made a promise that we would start updating the blog on a weekly basis. This past week was pretty uneventful. Which is nice to say for a change. We had dialysis on Tuesday, Thursday and Saturday. Everything went good on all 3 days. The only problem was mom was late for the Saturday's dialysis appointment due to the Michigan game starting at noon. We will have to leave the house at 9:30am now when there is a noon football game in Ann Arbor on Saturdays. Aidan had PT on Tuesday and an Audiology appointment on Tuesday. Both appointments went well. On Wednesday Early On came to the house. Aidan decided to show off a little. They were really impressed with his progress over the summer. Mrs. Lisa was also impressed by how big Aidan is getting. Friday was fun here at the house. We had the driveway and back porch redone. They started at 7:00am breaking up the existing driveway and back porch. They finished around 5:00pm. They did a really nice job. Sunday, mommy and Aidan let daddy go to the Lions game with grandpa Marino. They lost of course, but daddy did not mind because he was watching the game from a suite. Mommy and Aidan had a great day just relaxing around the house. Mommy was hoping to get some things around the house done, but that did not happen.

The biggest news of the week is that Aidan finally has a tooth popping through. It is the top front right tooth. Mommy and daddy are so excited because for a while there we thought that Aidan would be toothless for his 2nd birthday. We even questioned the doctor once if Aidan really had any teeth. We hope everyone has a great week. We will update again next Monday.

Hugs and Kisses.... The Troxtel's

9-13-09 - Renaissance Festival

Since it was such a nice day we went to the Renaissance Festival. Aidan got to see Lords and Ladies, Knights, and all sorts of medieval events.

I can't believe that mom made us go to the Renaissance Festival on the first Sunday of football season. The things that dad and I do to make mommy happy.

You told mommy we could go to the festival instead of watching football?

Aidan cheered for this jouster and he beat all the other knights.

Just chilling at the festival under a tree.

Mommy and Aidan

9-9-09 - Back on the Transplant List

Thankfully Aidan is back on the kidney transplant list. He was off for a couple of weeks. Hopefully we will get lucky and he will get a match soon.

9-7-09 - Labor Day!

Today is Labor Day! We had a nice cook out at Grandpa and Grandma Marino’s.

9-4-09 - Arts, Beats and Eats!

Summer is almost over. We went to Arts, Beats, and Eats today in Pontiac. It was a really nice day to get out and enjoy walking around. Aidan went to his first petting zoo. He seemed intrigued by the animals. There was a pygmy goat that kept licking his little nub. It was very cute. We can’t wait until he gets a little older and really starts to get into the animals.

Pygmy goat

Donkey

8-26-09 - Leaving the hospital

I am outta here!! Luckily Aidan only had to spend a few days in the PICU. What we originally thought might be pneumonia turned out to pulmonary edema. Thankfully Aidan was able to recover quickly. Unfortunately Aidan had to be placed on hold for the kidney transplant list until he is cleared by the doctors; hopefully by Labor Day.

Pulmonary edema is fluid accumulation in the lungs. It leads to impaired gas exchange and may cause respiratory failure. Symptoms of pulmonary edema include difficulty breathing, coughing up blood, excessive sweating, anxiety, and pale skin. A classic sign of pulmonary edema is the production of pink frothy sputum. If left untreated, it can lead to coma and even death, in general, due to its main complication of hypoxia. If pulmonary edema has been developing gradually, symptoms of fluid overload may be elicited. These include nocturia (frequent urination at night), ankle edema (swelling of the legs, in general, of the "pitting" variety, wherein the skin is slow to return to normal when pressed upon), and paroxysmal nocturnal dyspnea (episodes of severe sudden breathlessness at night).

Pulmonary edema is either due to direct damage to the tissue or a result of inadequate functioning of the heart or circulatory system. It can be caused by congestive heart failure, heart attack, severe arrhythmias (tachycardia/fast heartbeat or bradycardia/slow heartbeat), pericardial effusion, or fluid overload, e.g., from kidney failure or intravenous therapy as was Aidan’s situation.

It can also be caused after upper airway obstruction, intravenous fluid overload, or neurogenic causes (seizures, head trauma, strangulation, electrocution). It can also be seen with ARDS (acute respiratory distress syndrome) or the inhalation of toxic gases, aspiration, e.g., gastric fluid or in case of drowning, multiple blood transfusions, or a severe infection.

8-24-09 - Rushed Aidan to the ER (Scary Day)

Today was a very scary day. We had to rush Aidan to the ER. We think he stopped breathing at some point but the doctors were able to get Aidan breathing again very quickly. Mommy ran in from the car crying holding Aidan in her arms. We were fortunate enough to have one of the doctors that knows Aidan really well on at the time and she was able to give the ER team his history. After a brief scare Aidan was nearly back to his normal self. We initially thought he might have pneumonia again.

8-21-09 - Watching TV with Grandpa Marino

Tonight we all had dinner with Grandpa and Grandma Marino. Afterward Aidan watched wrestling with Grandpa. I think Grandpa was really loving it as they sat together on the couch.

8-14-09 - Happy Birthday Daddy!!!

Today is Daddys birthday!! Aidan also had surgery this morning to remove his PD catheter, replace his g-j tube with a g-tube, and had a bronchoscopy performed on his lungs. Mommy and Daddy spent the whole morning in surgery, the afternoon in dialysis, and then we visited some friends in the evening. The bronchoscopy led to a diagnosis of bronchomalacia for Aidan.

A bronchoscopy is a technique of visualizing the inside of the airways for diagnostic and therapeutic purposes. A bronchoscope is inserted into the airways, usually through the nose or mouth, or occasionally through a tracheotomy. This allows the doctor to examine the patient's airways for abnormalities such as foreign bodies, bleeding, tumors, or inflammation.
Bronchomalacia is weak cartilage in the walls of the bronchial tubes, occurring in children, presented with noisy breathing and/or wheezing. There is collapse of a main stem bronchus, on expiration. It can best be described as a birth defect of the bronchus in the respiratory tract. Symptoms varying from recurrent wheeze and recurrent lower airways infections to severe dyspnea and respiratory insufficiency can occur.

8-09-09 - Troxtel Family Visit

Today the whole Troxtel family stopped by to visit Aidan; Grandpa and Grandma Troxtel, Aunt Kim and Aunt Rachel and his cousin Courtney. It was a really good visit.

3 generations of Troxtel men.

Dad/Grandpa with his kids and grandkids

Grandpa Troxtel and Aidan

Grandpa Troxtel kissing Aidan.

8-7-09 - Aidan Stands for the first time

Today during PT she worked on getting Aidan to stand.

Aidan standing.

8-6-09 - My article in the paper and Aunt Kim and Cousin Courtney Visit

The article appeared today on the front page of the local paper. We rushed right out and bought over a dozen copies to give to friends and family. For those of you that missed it here is a link to the article. We were very pleased with the story and the pictures.

http://www.hometownlife.com/article/20090806/NEWS10/908060517&referrer=FRONTPAGECAROUSEL

Daddy’s sister and niece Kim and Courtney stopped by for a visit. It was the first time Aidan got to meet his cousin Courtney.

Doing my favorite thing "pulling hair".

Hello Aunt Kim.

Playing with my family.

8-4-09 - Livonia Observer

Today a reporter from the Livonia Observer came to the house to interview the entire family and to learn about Aidan’s story. She spent about an hour with us and we think it went very well. We can’t wait to see the article. Hopefully this will help inform people that kids need organs too and that adults can donate to children as well.

7-26-09 - Aidan is 18 Months Old

Today Aidan is 18 months old. I can’t believe that it has been that long since our little baby boy came into this world. Time sure does fly. I remember when he was just a tiny little baby just under 4 lbs. Now he weighs about 23 lbs. A lot has happened in the last 1.5 years. Some of it good some of it bad; the surgeries, the hospital admissions, and the numerous clinic appointments. All of the nurses we have gone through (bad again) until we found the ones that we could trust; Nurse Stacie and Nurse Amy. It has been a long and exhausting time in Mommy and Daddy’s lives but it has also been very rewarding as well. I never thought someone so small would have such a huge impact on my life. Everyday when I see that little guy smile at me it makes me want to do everything I can to help him overcome his challenges. I know we have a long road ahead of us, but if Aidan keeps smiling at me everyday it will be all worth it.

7-23-09 - Mommy's song to Aidan

Mommy’s song to Aidan -

I love you more than theres
Fishes in the sea
I love you more than theres
Stars up in the sky

I love you more. more. more. more

Mommy took some pictures of Aidan having fun watching TV.

Thanks for the song mommy!!!

Now how do I work this remote?

7-20-09 - Backyard Fun

Today is Aidan’s 2nd week of outpatient hemodialysis. Aidan spent a few hours outside this afternoon. He had a really fun time.

Hanging with Nurse Stacie

Who is that in the mirror?

7-18-09 - Dialysis Appointment

Today is Aidan’s 4th outpatient hemodialysis appointment and completes the weekly treatment schedule. Mommy and Nurse Amy took Aidan to his appointment to give Daddy a break. Unfortunately Aidan developed a small blood clot and the treatment took a little bit longer than expected.

7-17-09 - Blue Angels Visit

Today is Aidan’s 3rd outpatient hemodialysis appointment. The Blue Angels stopped by for a visit and gave Aidan some stickers and a booklet on their history. We also got some great news today from UofM. Aidan is finally on the kidney transplant list!! Anyone interested in getting tested as a possible match and wiling to donate a kidney please call Sandy Feldkamp at 734-615-3962. Due to HIPPA regulations we are not allowed to answer any questions you might have.

7-16-09 - Aidan Rolling Over

Aidan had a Neurology and Pulmonology appointment today. They both went well. Daddy was also able to catch Aidan rolling over giving his audience a special surprise.

Aidan farts in this video. (You need to listen really hard.)

Aidan shows off his new trick.

7-15-09 - 2nd Outpatient Hemodialysis Appointment

Today is Aidan’s 2nd outpatient hemodialysis appointment.


Dialysis Machine


Dialysis Machine

7-14-09 - Speech Appointment

We finally had our 1st Speech appointment at Milestones. Aidan met his speech therapist Casey. She is really nice.

7-13-09 - 1st Outpatient Hemodialysis Appointment

Today is Aidan’s 1st outpatient hemodialysis appointment. Daddy and Nurse Stacie have to take Aidan to UofM 4 days a week to get his hemodialysis treatment. We have to be there at 7:30AM.

7-12-09 - Plymouth Art Fair

Today Mommy and Daddy decided to take Aidan to the Plymouth Art Fair. It was a beautiful day and he actually spent most of it sleeping. We got Aidan onto the ground and played with him for about an hour while we watched some children put on a play about knights, dragons, and fairies. He is being very playful and smiling a ton. Mommy also bought him a plaque to hang in his room that says;

“Promise me you’ll always remember you’re braver than you believe, stronger than you seem, and smarter than you think” Christopher Robin to Winnie the Pooh

What a great quote and something that Aidan can definitely relate to.

7-11-09 - Aidan is coming home...

What an awesome day today turned out to be. Aidan is finally home!!! He is extremely happy to be home as are his Mommy and Daddy. It has been a very exhausting 6 weeks that we have spent in the hospital.

7-10-09 - Happy Birthday, Grandma Marino!

Aidan had another hemodialysis run with no problems. Today is Grandma Marino’s birthday!! We went out tonight to celebrate with a nice dinner.

7-9-09 - Getting Aidan on the Transplant List

Mommy and Daddy had a very long discussion with Dr. Collins today regarding his kidney issues and the possibility of getting him on the transplant list. He also underwent another hemodialysis run with no problems.

7-6-09 - Separation Anxiety Issues

Aidan seems to be developing some separation anxiety issues. He cries every time his Mommy walks away from him. Also today is a very good day because Aidan has come off the vent. He also underwent another hemodialysis run with no problems.

7-5-09 - What did you do with Aidan

Grandma Lee stopped by for a visit again on her way back home up north. Aidan was extremely fussy for 4 hours straight and everything that Mommy and Daddy tried to do to calm him down was not working. What a frustrating day!!




Aidan pulling Grandma Lee's hair again...

Playing with Grandma Lee

7-4-09 - Happy 4th of July

Happy 4th of July!! Aidan brought in cupcakes for the entire PICU staff. Grandma Lee and Ray also came down from up north for a visit. Aidan underwent another hemodialysis run with no problems today.

Aidan in his hospital bed.


Aidan and Mommy


Aidan and Daddy


Pulling Grandma Lee's Hair

7-3-09 - Blood Clots

Today was supposed to be Aidan’s 1st full in-patient hemodialysis cycle, but it had to be stopped early because he developed some clots in the machine’s filter chamber.