Thursday, July 31, 2008

Superman, Spider-Man, Batman, and ... Giant Cow




Lee and I took Caleb to superhero night at Chick-Fil-A this evening. Caleb had a blast. Lee and I were not prepared for how crowded it was! There are a lot of superhero fans in Boiling Springs. Caleb got to see all of his favorite superheros: Superman, Batman, Spider-Man, and Giant Cow. His favorite superhero is Spider-Man. There were lots of little boys dressed up as Spider-Man, and we think that Caleb would have been just as happy getting his picture taken with one of them. He was nervous when the real Spider-Man picked him up. He did better with Batman, to whom he gave "knuckles."

Wednesday, July 30, 2008

We Are Home

Graysen woke up late last night. He ate a bottle and had a wet diaper, so we were allowed to go home. We were discharged at 11 PM last night, and went to bed around midnight. It was a very long night, but we were happy to wake up in the hotel and not in the hospital. The picture above is of Graysen last night in the hotel with his heart monitor. He was happy to be out of the hospital and is back to his usual self. We are glad that this trip is over. The next step is to receive a date for surgery and to receive the results from the home heart monitor. At least our life should return to normal for a little while.

Tuesday, July 29, 2008

Heart Cath Results and Possible Hospital Admission


Graysen's heart cath went well today. All of his pressures looked good, especially the pulmonary artery pressure. (That pressure must be OK in order to be cleared for surgery.) The surgery request was sent to the surgeon today, and we should know the exact date within a few weeks. Tentatively, they are planning on the surgery being between October and December.

Graysen did well during the cath. There was only one complication during the procedure. His heart went into an abnormal rhythm (super ventricular tachycardia). They think that it may have been due to the catheter hitting the wall of the heart, but it did not resolve itself when the catheter was removed. They had to give him medication to get it back into a normal rhythm. Since it did not resolve on its own, the doctors are investigating if this rhythm occurs with Graysen. He was given a take-home heart monitor. He will wear it for 24 hours, and then we will mail it back to MUSC. MUSC will read the results, and determine if he needs to be seen by their specialist for arrhythmia. It can be corrected by medication if necessary.

Graysen's 6 hour post-cath time was 5:30 PM, which was the time that we were slated to go home. Unfortunately, we are still here. He has not woken up form sedation, and is not showing any signs of doing so. He woke up for a few minutes at 3 PM in a foggy haze, and ate a bottle. He immediately went back to sleep and has not woken up since. His oxygen levels are around 75, which is 10 units lower than baseline. (They want him to be at baseline before he is released.) He also will not urinate. His body became very swollen like a marshmallow and they had to use a cath to remove the urine from his body. So, he is not allowed to go home until he urinates by himself, and until his oxygen stats are above 80. They think that the low oxygen and fluid retention are due to the sedation. It appears that he is very sensitive to the sedative and is not coming out of it as quickly as expected. So, they are thinking about keeping us overnight. They have moved us to 7C, which is the pediatric cardiology inpatient unit. We have a room here, and are technically under observation. They are going to make the decision at 8 PM on if they are going to officially admit him as an inpatient. All of the paperwork is filled out, and they are ready to do so. If we are admitted tonight, we should still be able to go home to Spartanburg tomorrow. It just means that we are going to get home later in the day than expected.

Graysen's Heart Cath

Lee and I arrived at MUSC at 6 AM this morning. Prior to the procedure, the nurses took Graysen's vitals, gave him sleeping medication, and performed an EKG. He was rolled back to the Cath Lab at 8 AM this morning. In the Cath Lab, they will perform a sedated echo, and peform the heart cath. During the heart cath, they will insert catheraters through an artery in his groin. The tube will go through his body to his heart. They will map his arteries, measure pressures throughout his heart, arteries, and shunt, and inject a contrast dye to obtain video pictures of his heart. They are looking for areas of narrowing and will use the pressure readings to determine how well his heart is functioning. If they find a narrow area that is hurting his heart function, they will use a balloon to force the area open.

The purpose of today's cath is to ensure that Graysen is a good canidate for surgery, and to give the surgeon a blueprint of Graysen's heart and arteries. (If the pressure readings are too high, he will not be considered for surgery, and they will perform treatments until his pressures are acceptable for surgery.)

They anticipate that he will be in the Cath Lab for approximately 4 hours. They gave Lee and I a pager, and page us periodically with updates. The last page told us the the echo was complete, they are preparing to cath, and that Graysen is doing fine. After he is returned to the post procedure area, we will be allowed to visit him. He must remain still for an additional two hours, so they will keep him sedated during that time. After two hours, they can begin the process to slowly start waking him up, and getting him to a state where we can take him home. The plan is to take him to the hotel this evening as long as he is doing OK, and as long as they didn't have to use the balloon. (He automatically would be required to stay overnight if they had to use the balloon.) They told us to stay nearby MUSC tonight, and he should be OK to return to Spartanburg tomorrow.

The doctors will talk to us after the procedure to tell us their findings. If everything looks good, a surgery request will be sent to the surgeon. The surgeon will look over the request, and plan the surgery. His office will contact us in the next 1-2 weeks, at which time we should be given a surgery date.

Sunday, July 27, 2008

Grandma Arrives

Grandma arrived this evening. She came to take care of Caleb while Lee, Graysen, and I go to Charleston. We had a fun evening together. We watched the Carolina Panthers practice at their training camp, and then we went out to dinner for pizza and locally brewed beer. We are ending the evening giving both boys a bath.

Saturday, July 26, 2008

Night Night Boys



We put Graysen in Caleb's bed to see what the boys would do. Graysen loved it. Caleb is his hero. It is really cute to watch the two of them together. They both love each other, which is neat to see.

Friday, July 25, 2008

"Mama"


Graysen has been saying, "Mama" for the past several weeks. I cannot tell if it is intentional or not. He seems to only say it when I am around and he wants me. Although, it may just be wishful thinking on my part, and he is just practicing using his voice.

Thursday, July 24, 2008

Graysen Playing


I love watching Graysen play with his toys. He is very active and social. He spends all day playing with his toys.

McDonald's




We met Alisha and Katelin at McDonald's for lunch today. It was a lot of fun. Caleb loves McDonald's, and enjoys playing with Katelin. He received a Spy Gear arm laser in his Happy Meal. He loved it. The last picture is of another boy shooting Caleb with his laser gun. (Alisha was nearby, and I asked her if the boy was helping Caleb or shooting him. She said that he was shooting him.) I think Caleb just thought it was cool that a big boy came and talked to him. Unfortunately, the gun got lost in the play area.

We received Graysen's urine results today. His urine is clean! Everything is in order for his heart cath next Tuesday. Grandma arrives on Sunday to take care of Caleb. Lee, Graysen, and I will leave Monday evening for Charleston.

Wednesday, July 23, 2008

Random Stuff

Graysen's First "Knuckles"

This is a picture of Caleb coloring his favorite animal--horses. He set up his horse coloring book, and perched his Little People horse on the top of the desk.

Today has been a long day with Caleb and time out. Yesterday, Lee and I discovered that Caleb learned how to open doors. For discipline, we put Caleb in his time out chair in his room, and shut the door to his room, and to his toy closet. We set the kitchen timer for five minutes, and he has to wait until it beeps. Today I put Caleb in time out. When I went to release him from his room, I opened the door, and discovered that he had opened his toy closet, and started playing with his toys. I told him that was wrong, and made him repeat time out. I cleaned up the toys, shut the door to his room, and I shut myself in his bathroom. (His bathroom is attached to his room and I was in the process of cleaning it.) When the timer beeped, I opened the door to his room, and there were no signs of Caleb! The room was exactly how I left it. The door to his room was shut, and the door to the toy closet was shut. He had let himself out of timeout, and was in the living room. Needless to say, he had to repeat time out for a third time. Later this evening, Lee put him in time out. He followed all time out rules, and only had to do it once.

Tuesday, July 22, 2008

Thera-Play

Mmmmmmmmm... How does Caleb taste?
Caleb and Graysen's EI (Early Interventionist) came to work with them today. This is a picture of them waiting for her. Caleb knows that she works with Graysen on a blanket in the floor, so he was lying there with Graysen. Geoffrey even wanted to participate. They both did great. Caleb's speech is getting better. He is starting to put multiple words together, although they are hard to understand at times. Graysen is a much happier baby now that he can move his body.

Monday, July 21, 2008

Graysen's VCUG

This is a picture of Chad holding Caleb upside down. Kim watched Caleb today while I took Graysen to have a VCUG done. The results were normal, which is great! The UTI is a mystery, but they told me not to worry unless he has another UTI. So, we can put this past episode behind us.

Sunday, July 20, 2008

Bye Bye Kampi


"Bye bye Kampi." That is what Caleb said as we left Kampi tonight. Kampi is a Japanese steakhouse where the servers cook on the grill in front of you. It was my 30th birthday, and we thought that it would be fun to go with the boys. We were wrong. There was too much "hot" for Caleb's liking. Caleb whined loudly, and Lee had to distract him by showing him cars in the parking lot.

Friday, July 18, 2008

Thursday, July 17, 2008

Play Date at Emily's House




We had a fun afternoon at Lisa, Todd, and Emily's house. Graysen enjoyed interacting with Emily. Emily made him laugh by playing peek-a-boo. He is very close to turning over, but won't do it quite yet. Caleb and Emily enjoyed sitting in baskets and boxes. They played with a blanket over their head and had a blast. It was a very nice day and fun to relax for a while.

Wednesday, July 16, 2008

Back at Home

We are back home now. Graysen gave big smiles when he was put in his car seat to go home yesterday. He has been in a very good mood today as well. He has his antibiotics, and is fixed up. His VCUG is scheduled for Monday. I am enjoying spending today with my two boys. They are always a lot of fun. I can tell that both boys are happy that things are back to normal.

Tuesday, July 15, 2008

Going Home!

Graysen was cleared to go home today! I am looking forward to being back in our normal environment. He will receive his last dose of IV antibiotic at noon, which will last 24 hours. That will give the lab time to finish the sensitivity tests, and ensure that he is prescribed an appropriate oral antibiotic tomorrow morning. Tomorrow morning they will call in the antibiotic, and schedule the VCUG for him. In the meantime, he is doing great!

Monday, July 14, 2008

Caleb at the Taylors



Caleb is having a blast at the Taylors. They are taking very good care of him. He even had his first experience with the ice cream truck. If Graysen is still in the hospital tomorrow night, the Taylors are going to bring Caleb to visit Graysen.

Preliminary Kidney U/S Results

We received the preliminary u/s results for Graysen's kidneys. The u/s showed some nephrosis. The good news is that this infection uncovered a problem and it can be managed. The bad news is that it is probably caused by reflux as a result of a structural deformity. The doctors will schedule a VCGU in the next month which will determe the cause and severity of the reflux. Graysen will be on antibiotics until the situation is resolved via growth (several years) or surgery.

Update on Graysen

So far, everything looks good. We will have the results of the blood culture and kidney ultrasound tomorrow, but I anticipate that the results will be good. His urine culture is growing colonies, so they are sure that he has a UTI. They will type the bacteria and do antibiotic sensitivity tests to ensure that they give him an antibiotic that will treat his specific bacteria.

The doctor said to expect him to go home either Tuesday or Wednesday.

The unicorn in the picture showed up in his crib this morning. Lee woke up this morning and saw someone in a hospital gown looking at Graysen. The person left when Lee opened his eyes. Lee is pretty sure that it was a patient. Then, I noticed the unicorn in Graysen's crib this morning. I think that he might have an admirer, or there is a crazy patient on the loose. Strange.

Sunday, July 13, 2008

Poor Graysen


Graysen was admitted to Spartanburg Regional Hospital today. He has had a fever since Thursday, but no other symptoms. The pediatrician said that it was time to start investigating further, and sent us to the ER around noon. He was admitted this afternoon. They are pretty sure that he has a urinary tract infection. They took two urine samples and both contained high amounts of white blood cells. The confirming test is a urine culture. They started the culture today. However, they decided to start antibiotics since he is fragile and since they are pretty sure that he has the infection. They also took two blood samples for cultures today which will tell them if the infection has entered the blood stream, and possibly the heart. We will not have those results for three days. They will do a kidney ultrasound tomorrow. They need to make sure that damage has not been done to the kidneys since the infection is caused by urine reflux back up into the bladder and kidneys. An infection like this is very rare in baby boys. They were surprised when the urine indicated a problem. They said that there is a good possibility that it is caused by a structural defect in his urinary system.

The plan is to give him IV antibiotics through Tuesday. If his kidneys and blood look good, he should be discharged on Tuesday and will remain on oral antibiotics at least through the end of the month. Once healed, he will be scheduled for a urinary tract cath which will occur in the next several weeks. This cath will look for a structural defect and determine what needs to be done long term to prevent further infections.

By the way, if you notice the diaper on Graysen's arm, it was our invention to prevent him from eating his IV. That is what happens when your parents have engineering degrees.

Saturday, July 12, 2008

Caleb's First Train Set

Lee and I were at Barnes and Noble this evening and we found a 60th Anniversary Thomas Wooden Train Set for $21.00. It was in rough condition, and missing a piece, but Caleb doesn't know the difference. I searched Amazon, and it usually sells for $89.00, so I am excited about the deal. (Wooden Thomas toys can be very expensive.) Caleb, of course, loves it!

Bat-Bob Misses His Buddy



Katelin left this morning, and Caleb has been moping ever since. Lee and I foresee rough times ahead if a girlfriend ever dumps Caleb.

Friday, July 11, 2008

Pajama Party


Caleb had his first pajama party tonight. He really enjoyed dancing with Katelin. They both get along great. Of course, he had to wear his Batman pj's to impress her.

We decided to let Caleb and Katelin sleep in the same room. We thought that it would comfort her, and it worked out great (so far). We put our webcam on a nail in the wall so that we can keep an eye on them.

Update on Graysen

Graysen is doing much better today. He still has a fever, but it is only 101 F. The doctor thinks that he is on the road to recovery. We just have to watch the fever the next 24 hours and it should be gone by the morning.

Thursday, July 10, 2008

Graysen's First Illness

Graysen was sick for the first time today. I took him to the doctor and he had a fever of 103 and a heartrate of 185. They did a chest x-ray, white blood cell count, and consulted the cardiologist. All the test results were good. Most likely, it is just a virus. They decided to treat the fever, and as long as he does not have a fever by 11 AM tomorrow, everything is fine. If he continues to have a fever, they will do blood cultures and start looking for an infection in the heart (valves, lining, etc.) However, the most likely scenario is he just has a virus, and I am sure that he will be fine by tomorrow morning. As you can see from the picture, he is still a happy baby. (I only caught the fever because he had goosebumps and was shivering when he woke up from his nap.) Both our boys never show any signs when they are sick. The cardiologist said that as long as he is healthy by next week, the heart cath should continue as scheduled.

Wednesday, July 9, 2008

Chuck E Cheese





We went to Chuck E Cheese today with Alisha and Katelin. Both kids had a great time. I think that this is one of Caleb's favorite places. He ran around the apartment doing a "happy dance" when I told him where he was going.

Tuesday, July 8, 2008

Belly Laughter

video

Lee and I caught Graysen in belly-roll laughter this evening. Caleb was playing with him while he was finishing his dinner. It was cute to watch the two boys interact and we have never seen Graysen laugh so much! At the end of the video, you can also see Caleb's reaction when his finger gets dirty.

Back to the Usual Routine

We are back to our usual routine today. The EI (early interventionist) came and worked with Caleb and Graysen today. Caleb is putting together multiple words and is doing great. Graysen worked really hard trying to turn over and during tummy time. He was exhausted afterwards and took a long nap.

Monday, July 7, 2008

Trip to Florida

"I hate sand!"
"Quarantine"


We had a great trip to Florida. We really enjoyed seeing family and the weather was perfect. We finally had a good year of fireworks on the beach after several years of disappointments. (Last year, the fireworks were on a barge, and a big wave washed them into the ocean about 30 minutes before the show was supposed to start.)

Caleb loves the beach, but hates sand. He freaked out if his hands, shoes, or any part of him got dirty. We ended up having to put him in "quarantine." We cleaned him off really good and he enjoyed the beach from a dirt-free chair.

Wednesday, July 2, 2008

Going to Florida


We are leaving to go to Daytona Beach, Florida when Lee gets home from work today. Both boys are dressed in their surfboard outfits and are ready to go. I am excited because I have Florida/4th-themed clothes for them to wear all weekend. Lee says that little boys should not be dressed in themes, but I disagree. They even have matching outfits for the 4th!

Caleb knows that we are going to Florida. I told him that he could pack his tiger backpack with any toys that he wanted to bring to Florida. He packed it with about 25 matchbox cars. I gave him ideas like books, animals, letters, ..., but all he wanted were cars. He then put the backpack at the door and it is waiting with the other luggage until Lee arrives.

This will be my last blog until we return next week. We are not coming home until Monday, so I will probably not blog again until the middle of next week.

Tuesday, July 1, 2008

Cars, Carrots, and Bottles





My mom's friends, Joan and Tom, sent Graysen his first set of cars. He really seemed to like them. He likes to put everything in his mouth, so I am assuming that Graysen liked the taste as well. At McDonald's yesterday, Lee and I caught Graysen watching cars in the parking lot. He followed each one with his head. Maybe we will end up with two car fanatics in the family.

I fed Graysen carrots last night, but I do not think that he likes carrots. I plan to buy a fruit for next week. Caleb fed Graysen his bottle this morning. Caleb is great and loves to help take care of his little brother.