Aaron's Hyper IgM Journey

Saturday, December 31, 2011

Sleepy Day (Day -3)

The yuckies finally hit Aaron pretty hard! He has been throwing up very forcefully over and over again. The doctor decided to add a second and then a third anti-nausea medicine to help him. The medication made him very sleepy.

We also learned that his transplant has been moved to January 4th. The donor's cells will not be finished processing in time for the 3rd. This should not affect anything.

Friday, December 30, 2011

Little Beckham (Day -4)

Aaron loved to kick his Thomas the Train ball up and down the halls of the Ronald McDonald House. One of the volunteers would call him "Little Beckham." He now has a mini beach ball that we kick around his room. He threw up pretty bad today and has started having diarrhea. As you can see, none of that is slowing him down any. He is still very happy and active.

Thursday, December 29, 2011

Today Aaron starts a different type of Chemo.

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Wednesday, December 28, 2011

Day of Rest (Day -6)

Today was supposed to be a day of rest, meaning no chemo. Aaron did not have chemo, but he did not rest well. His cold is really getting to him and he is sneezing a lot. He threw up today. This was actually a good thing. He was sluggish all day until he threw up. Afterwards, he was ready to play and jump and have a good time. He ate one french fry and one bite of cottage cheese and nothing else all day. His pants are starting to fall off of him. He still looks good and has some energy. The doctors say not to worry, so I am not going to worry.

A Day With Daddy (Day -7)

Daddy came back from working. He spent the day with Aaron while I caught up on laundry and phone calls. The day was a little rough since Michael did not know the routine. Neither of them slept much that night. I finally got a good night sleep. :) Here is a picture of Aaron's new tent bed. He calls it "the green bed." This is much better than the crib.

Monday, December 26, 2011

We are sick (Day -8)

I had a cold and got over it. I wore a mask, but Aaron still got sick. He tested positive for parainfluenza 1 virus. This is a common cold. They are going to start giving him his IVIG once a week now to help boost his immunity. The doctors are not worried and say it will pass just like it would for anyone else. Aaron has had a little sniffles and sneezing, but not bad. Other than that, Aaron has not shown any adverse effects from the chemo so far. He is a tough little guy. In fact he has eaten better today than he did the last two days. His diet consists of M&Ms, teddy grams, frosting off of cupcakes, goldfish crackers, chocolate bars, cheerios, and cheese quesadilla. Most parents would probably be horrified by this, but I am the happiest Mom in the world!!!

Sunday, December 25, 2011

Merry Christmas (Day -9)

Santa made two stops for Aaron this year. We woke up to presents in the hospital and presents were delivered to the Ronald McDonald House. We opened them slowly throughout the day. Christmas was a fun day. Aaron did not get sick at all for his second day of chemo. We also upgraded Aaron to a Posey bed. This is a hospital bed with a tent around it. This is sooo much better than his old cage crib. When he wakes up in the middle of the night, I can lay with him.

Saturday, December 24, 2011

First day of chemo (Day -10)

Aaron's transplant is considered Day 0. The 10 days before that are a count down. We finished the first day of chemo. Aaron did great! He was a little tired all day, but I think that is because he was up from 12am to 5am. The nurses poke at him all throughout the night (and day) and he does not always fall back to sleep very well. We watched Nick Jr for hours. Aaron is not eating much, but that is not too different from his normal eating habits.

This is Aaron getting his first dose of chemo.

Thursday, December 22, 2011

Settling In

We don't have a routine down yet, but we are getting there. The last two days were much better. Aaron doesn't seem to mind his caged crib. They brought a play mat for him and told us he can get out and play on the mat with his toys.

Aaron's baths are done in his crib. They are more like a sponge bath, but seem to work out well. The shower cap has a shampoo inside it. We massage his hair with the cap on, take off the cap and then let his hair dry. I LOVE it! Wish we had these at home.

The Occupational Therapist visited us today. What fun!! She quickly realized that Aaron loves to run. She hung up one coloring page on the door to the room and one coloring page on the other side of the room. They would run to one side and color then back to the other side and color. This continued for quite some time.

Physical Therapy was even more fun. Aaron is allowed out of his room today and tomorrow. After that, he is bound to his room until his ANC counts reach a certain level (this will take weeks). Aaron went to the physical therapy room and had a blast. He ran all over, played with balls of all sizes, went bowling, made music with the keyboard, and so much more.

Tuesday, December 20, 2011

The beginning of a tough road

Aaron was admitted to the hospital today and so the journey begins...

Our day started so nicely. We drove around Cincinnati in search of a good train spotting location. We found one but did not have time to wait for trains. Aaron had to be to the hospital for surgery. He had a double lumen catheter placed. This is for the chemo and numerous blood draws.

In the evening we were moved to Aaron's new room. I will write plenty more later on our new home, but for now, it feels like we have had our freedom taken away. Aaron is in a crib that looks like a cage and we were told to keep him in it as much as possible. The nurse said it is best if he doesn't run around because he could get hurt.

We were sad when we saw a family packing up their things to move out of the RMH. They had to take their two week old off of life support. Today was not fun and not a very great day. We have a lot of adjusting to do. Today we are all going to bed tired. Tomorrow is a new day.

Friday, December 16, 2011

A tough day

Since Aaron had a long day we weren't able to get his morning run in. He had a full eye exam with dilation. Two hours later, we met with the doctor. She was excellent but only brought bad news. Aaron's eye surgery was not successful in correcting Aaron's lazy eye and he will unlikely ever have depth perception. The doctor said he won't be able to be a pilot like his daddy and grandfather. I remember my father telling me a story about how he was told he could never pilot an airplane due to his vision, but he went on to become an F4 pilot in the air force and a pilot for Southwest Airlines (the best airline in the industry). We believe Aaron will be able to do whatever his heart desires.

By this time, Aaron missed his nap and his lunch. He was miserable. We had a meeting with the BMT doctor to go over the consent forms and timeline. This was our chance to get any questions answered. Aaron threw his first full-blown tantrum the entire time. He kept screaming "I want to run." The meeting didn't go well but we believe we are aware of the risks and benefits of the transplant.

Saturday, December 10, 2011

2nd Week of Testing

The second week just flew by. Monday we had more labs taken as well as stool and urine tests. Everything came back pretty good. He may have a virus in his stool called adenovirus. This is a very serious virus. However, the doctor assures us that it is found in almost everyone's stool and that they will follow it very closely.

Tuesday, Aaron had his biggest procedure yet. He was put under anesthesia. He had a bone marrow biopsy to check his bone marrow for any additional problems. He then had a bronchoscopy. The doctors looked at his anatomy and took samples of pulmonary fluid. They found a couple of nodules near his larynx. This explains the funny sounds he makes periodically. They were caused from when he was previously intubated.

Wednesday, Aaron had his infusion.

All the test results continue to be really good. Now we just wait to be admitted on December 20th.

Wednesday, December 7, 2011

All You Can Eat Chocolate Cake

Good news for Aaron. We met with the dietician today. We explained the issues we have had getting Aaron to eat. She said to let him eat whatever he wants. He can eat all the chocolate cake and cookies he wants. We need to keep him wanting to eat. During transplant, the patients often lose their desire to eat. After he recovers from the transplant, the dietician will work with us to get him back on a healthy eating plan.

Sunday, December 4, 2011

Improv Show

There is ALWAYS something going on at the Ronald McDonald House. Unfortunately, we cannot attend most events because Aaron would be exposed to other people. We love that the theater is located downstairs with a view just outside our room. Tonight was an improv show by a couple of goofy guys. They would ask a 3 year old several questions and use her responses to make up a totally wacky skit. Again, I enjoyed it. Aaron just watched trains on my phone.

Saturday, December 3, 2011

Clown visit

We were able to watch the clown show from upstairs. There is a theater downstairs. Aaron was more interested in watching trains on my phone than the clowns, but I enjoyed it!

Friday, December 2, 2011

The Rest of the First Week

The week has not let up any. In fact, I don't think I remember most of it. My goal is just to get Aaron to each appointment on time and I feel like we have succeeded!!!

Tuesday... Aaron had a PICC line placed. This allows blood samples to be taken without poking Aaron. He fussed a little bit, but got through it pretty well. We spent time with the home health nurse learning how to take care of the PICC line. We have to inject heparin twice a day to keep it from clogging or getting infected.

Wednesday... We had a visit from home health at 8:30am. We went to cardiology at 9:30am for an echocardiogram and EKG. These are usually done under sedation for this age group. However, they said Aaron is the easiest kid they have ever seen and decided he can handle it. He laid still the whole time watching Micky Mouse Clubhouse and didn't make a sound. Later, Aaron had more labs taken.

Thursday... Aaron had a CT scan of his whole body. Again, they were supposed to but him under anesthesia. Aaron sat still the whole time and did not have to be put under sedation. We are so proud of him.

Friday... Aaron had to do a 4 hour test of his kidneys called a GFR.

By the end of the week, most of the results came in and they told us that Aaron's results are the best they have ever seen in a pretransplant work up. Thank you Lord!!!

Christmas train

Aaron begs to go downstairs many times a day to see James (the train) go around the Christmas town train track.

Location:Erkenbrecher Ave,Cincinnati,United States