Hi Ho, Hi Ho, It's Back to the Hospital We Go.

So the last blog update was written while we were at home. Unfortunately this one comes from All Children’s Hospital once again. Many of you also follow Caelin’s Journey on his Facebook page, and if you do then you already know of his trip back to the CVICU but for those of you who do not, I will explain how he got back here and how things have been the last week.

Cael feeling festive on Monday!

Watching Mickey with his Mickey on Tuesday.

Smiley boy on Wednesday with Mommy right by his side.

Believe it or not, this was in between vomiting #2 and #3. He just got a bath but threw up soon after. 

Such a cute boy in his hospital gown. <3

Got his peripheral IV & just arrived in the CVICU.

Looking out the window Thursday afternoon.

Practicing sitting up with Daddy on Friday while watching Mickey Mouse!

Playing with his Mickey!

Fast asleep on Saturday. Today was one of his least energetic days.

Fast asleep with Daddy Saturday night.

Sunday, another day with low energy. Sporting an oh- so- true, tee shirt!

Kisses and cuddles with Momma.

Not sure how he's feeling about being here. (His shirt has a guitar & says, "Chick Magnet.")

Definitely teething.

There is a smile! Finally!

Sleeping on Momma Tuesday morning.

Fast asleep during his afternoon nap. He looks so comfy!

Caelin had a pretty rough Monday, a decent Tuesday, and a horrible Wednesday. Tuesday night Caelin did not sleep well at all. Mommy and Daddy were up with him frequently trying to get him to calm. Finally just before 3:00 AM he made his way into bed with us (the earliest we had ever brought him in) but it didn’t help like normal. He was still pretty fussy and restless. Daddy’s alarm sounded for school just after 5:00 AM and only minutes later did Cael wake up vomiting. We figured he needed his tube to be vented so we let out all the air and it seemed to comfort Cael. Before 2:00 PM Caelin threw up three more times. After the third time throwing up, Mommy called the Pediatrician and left a message. And right before she spoke with Daddy, who was at school, Caelin threw up again. After discussing his vomiting and still not hearing from the Pediatrician, we decided to call Caelin’s Cardiologists to see what they recommended. Ultimately they told us to hold his 9:00 PM dose of Lasix (to not dehydrate him extensively) and if he continued to vomit throughout the night to bring him to the Emergency Center at All Children’s. All day until bed time, the only place Caelin was content was in Mommy’s arms. It did not matter if she was next to him, he wanted to be as close to her as possible. So he went to bed but slept lightly and fussed a little while asleep. So at 1:55 AM when Mommy’s alarm was going off to give Caelin his nighttime medications, she walked in his room and he began to stir. With the subtlest movement, Caelin started retching and gulping. Afraid to leave him in case he started vomiting, Mommy quietly but quickly turned toward the door to go grab his vent to let out the air from his tube. Before she could take two steps Cael’s noises turned wet and she knew it was coming. He projectile vomited all over. She yelled through the monitor to Daddy and he darted in the room. He paused the feeds, grabbed Cael’s vent, and helped clean up. As we contemplated taking him to the EC, Cael’s feeds were still paused but he was sad, tired, and looked ill. We decided if he threw up again, we would take him. Luckily Mommy had packed everything including formula and medications after speaking with the nurse at the cardiology office because before Daddy even finished his suggestion of holding off leaving until one more time, Cael threw up again. Then again. So on our way we went. Luckily Cael kept everything down while in the car although we were prepared with a bib, a blanket, and burp cloths. We walked into the Emergency Center and as Mommy was filling out the admission sheet, Cael threw up a little bit again and had dry heaving. Upon seeing him do this, the guy at the front desk sent us to the back where Cael was weighed and got his blood pressure taken. Then we were directed to his room. He was seen by the nurse then the doctor and ordered to get a belly film (X-ray). The X-ray looked good but the doctor wanted blood work. It came back in only a few minutes and showed his liver enzymes were dangerously elevated. They were over 1,000 (one thousand) when they should be around 40 (yes, forty) apparently. As a result of this test, he had a belly ultrasound performed. Caelin was such a great boy during all of this, especially the ultrasound! He moved and rolled cooperatively and let the technician get some very good photos. It was during this ultrasound the tech noticed he had some sludge in his gallbladder and it was a bit enlarged, but his liver looked normal. The combination of all of these things led to the decision of his admission. At first he was to be sent to PICU but at the last minute CVICU took him instead. Thank goodness! We were nervous to be in a different part of the hospital where they were not as familiar with Cael (although the same cardiologist and a familiar ICU doctor would have seen him). So it was definitely great for him to be in a place where he recognized voices and faces. It was also great for Mommy and Daddy because it was more comforting to have nurses and nurse practitioners we know, trust, and adore.

Here are the posts we wrote on Caelin’s Journey. They pretty much summarize the details of his stay:

Thursday 9.27.12 (Morning) So the GI docs seems to think his throwing up & gallbladder/liver issues are viral based on his other enzymes and levels being normal- the liver ones are the only ones that are high but they are VERY high. They are going to run a few viral cultures but it takes a few days to get results. So we are thinking he will be here for at least through Saturday. He is not allowed to have formula for 24 hours so he is just on IV fluids- they will retest his tolerance tomorrow. He is getting an echocardiogram today, too.

Thursday 9.27.12 (Evening) We're still hanging tight, waiting on results of all the cultures (will take a couple days) & Cael's being monitored. They still plan to resume feedings tomorrow morning, but possibly starting with Pedialyte.

Friday 9.28.12 Caelin had a decent night even though he slept lightly. Right now he is doing alright- he has been very tired for most of the day but still flashing smiles. His liver enzymes went down a little while his billirubin level more than doubled but the docs still do not think anything is wrong with his liver or gallbladder & are focused on it being viral. We convinced them to start Actigall though (helps absorb fat & hoping it will break down the sludge) as a prophylactic step instead of having to be reactive in case they are wrong about his vomiting being caused by a virus. He is on 10mLs of Pedialyte now & they are increasing every 4 hours by 5 mLs to a goal of 35. If he tolerates it, they will switch to formula, if not we are not sure what their plan is. With how he has been since being on 10mLs, I do not think he is going to tolerate full volume... But we will see. His blood pressure is also high so he is now maxed on his Captopril (2.0) but his echocardiogram yesterday looked good. The cardiologist said his Tricuspid Valve regurgitation has ever so slightly worsened. :/ We’re still waiting & hoping for a real diagnosis and a resolution so we can get back to being a family at home.

Saturday 9.29.12 So today Caelin woke up full of smiles and we thought for sure he was feeling better. Then 10:30AM came and he pretty much slept from then on. When he did wake up, he was very lethargic and out of it. Because he tolerated full volume Pedialyte in the morning, Cael was put on full formula feeds at noon but didn't tolerate them. He didn't throw up but when we vented his tube at 4:00PM he pushed out 50mLs which is an hour and a half of feeds. As a result, they have reduced him to 1/4 formula 20 calorie & 3/4 Pedialyte. This is only because we pushed for him to keep something in his belly for nutrition and to get him to poop to hopefully help the Jaundice (he woke up with yellow eyes & skin and an even higher bilirubin level this morning). They wanted him to be on just IV fluids for another 24 hours and then restart his formula at an even slower rate because they are still hung up on this being a virus. Even if it is a virus, we did not want him to be restricted to only IV fluids for another 24 hours. The GI doctor is coming to talk with us in the AM about everything since not one GI doc has come to see him since he's been here, only the GI nurse practitioner. We really do want this to only be a virus but our instincts are telling us it's more... Praying for healing and recovery for our baby boy. We miss his energy and personality & we miss cuddling and playing at home.

Monday 10.1.12 Yesterday morning the GI doctor came and apologized for not coming sooner. (We were told she said Caelin was a priority for Friday night/Saturday and she would be in to talk to us… but she never came). So Sunday morning she reassured us that because his liver enzymes are still coming down relatively quicly and his bilirubin was ever so slightly lower than Saturday, she still really feels like it is just an unusual virus he caught. Unusual meaning he did not have a fever, diarrhea, or increased white blood cells and it seemed to really only affect his liver. They think the sludge in his gallbladder is nothing to worry about & say it is actually quite common and most people who have it are asymptomatic. Because today is Monday, a new ICU doctor (Dr. Pettigrew) and cardiologist (Dr. Wilmot) are on this week and they, too, believe it is viral. We truly do hope they are right and want to trust them as they have been two of our most favorite doctor’s during Caelin’s journey at All Children’s! Yesterday he was put on half formula (20 cal) and half Pedialyte and he tolerated it well. He is now on 3/4 formula (20 cal) and 1/4 Pedialyte. He will be on 3/4 feeds all night and if tolerated, he will be put to 100% formula at 20 calories (his normal diet is 24 calorie) in the morning (Tuesday). He has been having spurts with more energy but is overall still feeling under the weather and sleeping more. Most of the viral cultures have come back negative finalized. But it would be next to impossible and impractical for them to test for every possible virus. He will get more labs done in the morning to test his levels to ensure they are continuing to lower (they gave him a break from blood draws today). Also, his bowels are finally moving again so hopefully he gets the waste and bilirubin out of his body so his Jaundice clears (he was not put on lights because it is not alarmingly high & they wanted to see if pooping would help it). On a good note, his temperature, heart rate, respiratory rate, oxygen saturations, and blood pressures have all been good. All of these vitals being in normal range are also reassuring! =) Thank you all so much for sending such wonderful, encouraging blessings, thoughts and prayers! Hugs & Love from Caelin!

News from today (Tuesday 10.2.12): His labs this morning showed two of his liver enzymes are continuing to decrease while one increased, along with his bilirubin (up to 4.6 from 4.0 Sunday). The doctors during rounds said they are not concerned with the slight increase in these numbers even though he has stooled twice because he is not yet on full, proper nutrition. They said that these two numbers are often the slowest to come down and it may take a couple weeks of adequate nutrition and regular bowel movements to make the numbers level out back to normal. Caelin is teething but we are instructed not to give him Tylenol because it can negatively affect his liver. Yikes! Orajel it is, if necessary! His little left, front, bottom tooth that began making its appearance is finally becoming more prevalent. It is really cute watching him feel and play with it with his fingers and his tongue. One of the surgeons or a PA was supposed to come by Cael’s room today to check out his sternal wires placed from his Glenn. He has two that are very close to the surface of his skin and we are nervous about him rolling over and doing increased tummy time with him in fear of one of the wires popping through and poking a hole in his skin and in turn, causing an infection. Neither a surgeon nor a PA was able to make it in today so hopefully they will stop by tomorrow to give us their opinion and offer any advice. Although the doctors have labeled Caelin’s sickness as a virus, we discussed the possibility of it being caused by inappropriate medication dose (we got refills of all his meds at a different Walgreen’s location the Friday prior to him getting sick and they had to adjust the compounding ones for some reason for them to be covered under our insurance). Although the actual concentration of the medications cannot be tested, one of the pharmacists from All Children’s (ironically the one who overdosed Caelin on Clonidine back in June) called Walgreens to get the prescription dosing and compounding details to ensure they were all appropriate. Apparently everything is cleared and the medications should be fine. The doctors still discussed writing him all new prescriptions and getting them filled at the original Suncoast Walgreens where we had no issues with his compounded medications before (and this is where we will get all his meds in the future just for peace of mind). We also discussed the possibility of his sickness being a reaction to his first ever immunizations given on September 20^th. This was brought up because Dr. Smith (ICU doc on Saturday) held his Synagis (for RSV) shot because there was a 1% chance it could negatively affect his liver. Unfortunately, the only way we will know this for a fact is if it happens again with his next immunizations, which I am COMPLETELY DREADING by the way. L One good bit of news from today is Caelin had A LOT more energy! After his afternoon nap he was nonstop kicking, playing, smiling, and even let out a couple giggles. It is so great to see his little personality shining through again! We have missed it so very, very much! 

 We know Caelin is a fragile kid and we have heard many instances of children with heart defects needing to be hospitalized for infections and viruses but this really solidified it for us. We are so nervous to take him places in fear of ending up back in the hospital, but at the same time, we do not want him to live a sheltered life. We will have to work on finding him that happy-medium, but for now, home it is with outings only as necessary!

Several people have inquired about the Gerber Generation Photo Search 2012- we have not been personally contacted at all but this afternoon Gerber posted an update saying they would be revealing the 6 milestone winners on or before November 1^st. On Gerber’s page they also posted that they would be contacting the family of the winner by phone, e-mail, or letter. I am getting butterflies in my stomach, hoping Cael has been one of 6 chosen. But regardless of the results, in our eyes he will always be the chosen one.

I do have to share, whether we are in the hospital or at home, tonight I recognized a feeling like no other… there is something truly special and heartwarming about watching my son rub his eyes, grab his Wubbanub and put it in his mouth, then roll to his left side while swinging his right arm over his eyes. In the comfort of my presence he drifts off to sleep slurping on the end of his Soothie. I think, “When did he get so big?” Then I wisper, “I love you, goodnight.” Now the day is complete and I anxiously wait for the next to begin. Especially tomorrow as Caelin should be headed back home in the afternoon as long as he is tolerating full volume 24-calorie formula. As always, thank you for your prayers, especially during Caelin’s difficult times.