Lots of Visitors & Almost to the Glenn!

Finding my fingers!

Pulling out my nasal cannula- it makes me crazy! 

Cael & Uncle Tristan!

Uncle, Aunt, & Baby!

Uncle Tristan and Aunt Cassie helping with Caelin's bath!

Caelin learning how to play Euchre!

Reunited and it feels so good!

Kisses from Aunt Cassie!

Happy boy playing with his new Kick & Play Piano.

Meeting Grantie Wanda and Grantie Sue! 

*Pout*

Since last week, not much has changed. He remains on all of the same medications, except they restarted the Amlodipine because his pressures were trending higher while he was maxed out on Nitroprusside (IV med). The Colace finally kicked in, also, making his bowel movements much more comfortable and his attitude much happier! His current weight is 4.898 kilograms! He will definitely be to 5kgs next week as long as he continues to gain weight! We are trying to keep Caelin healthy, stable and gaining weight to get him to his surgery, which is supposed to take place next week.

He is scheduled to go to the cath lab on Monday, August 6^th, 2012 at 11:00AM. Dr. Chai requested a pre-Glenn cath because Caelin is requiring extra oxygen and is severely hypertensive. He does not want any surprises in the OR during the Glenn and the pre-Glenn cath will help better prepare Dr. Chai for Caelin’s surgery. We are happy with this decision because although the catheterization lab brings risks, the potential benefits outweigh them. Also, they are trying to get Dr. Chai to perform Caelin’s surgery on Tuesday, August 7^th so Cael can come out of the cath on the ventilator and remain intubated through the Glenn instead of having to be intubated then extubated then re-intubated and extubated a couple days later. One side not for the Glenn, Caelin will not remain intubated for very long after he comes out of surgery. With the Glenn anatomy, the new path of blood flow often works against the ventilator, making it more difficult to breathe. This is good news because Caelin HATES the vent.

This morning around 8AM he started desatting into the 60s consistently. As a result, the nurse and respiratory therapist had to put him on 55% oxygen at 2 liters from 45% at 1 liter. With this increase, his saturations are only between 69 and 76 while awake, mostly in the low 70s though. And while he is asleep he has been between 75 and 80. His care plan goal is between 75 and 85 so he is requiring a lot of support to be within the parameters. Because of this sudden change, the doctors have ordered an echocardiogram to look at his heart. They also ordered blood because his hematocrit is 40 and is hemoglobin was 13.9, which is at the lower end of where they want to keep him.

Otherwise, Caelin had a pretty good week last week and weekend. He got to meet Grantie Wanda and Grantie Sue for the very first time, as did Mommy! They brought him, The Little Engine That Could which is a perfect book for him! He has been full of smiles and loves having his Uncle Tristan and Aunt Cassie down here to visit. Mommy and Daddy are loving their company, also. We are spending a lot of quality time together and they are awesome helpers! They love helping take care of Cael and have offered on several occasions to help around the house! Today, they are helping Sean set up his new classroom at his new school, Dixie Hollins High in North St. Petersburg.

Thank you all for praying for Caelin and our family. This week our goals are to keep Caelin healthy and stable (hoping his echo shows his heart function is consistent and has not gotten worse), go down on his oxygen support (because 55% is a little high), and to get him a date and time for surgery next week.

P.S. Caelin now has 29982 views to his blog- almost 30K!!! That is remarkable! :) Thank you for following our son's story.

Gaining Weight & Waiting for the Glenn

Happy boy stretching his legs and doing an Irish jig! 

Getting bundled after bath time.

Working out my muscles!

Cael's famous sad face. *Heartbreaker!

"Hey Guys! Look at how great I can hold up my head!" 

Tummy time 7.22.12

"NO MORE PICTURES, MOMMA!"

Happy boy waking up from a nap while snuggled with Mom.

Good Morning!

Wow how the last week has gone by- it is hard to believe we have not given an update since last Sunday! Sorry :/ But the major things have pretty much been the same as the week prior with a few adjustments.

The current main concerns for Cael are his need for oxygen support, his hypertension, and his heart’s function. Over the last week the main changes have been with his medications. For his oxygen requirement, it has gone up and down between 25% and 44%. We have not been able to notice a trend of when he requires more or less; when he requires more, sometimes he is happy, sometimes he is mad, and other times he is sleeping, so it is difficult for us and the doctors to know why he needs the extra oxygen. For Caelin’s heart, his Milrinone was increased to 1mcg/kg/min from 0.75. For his hypertension, they increased his Captopril, added Clonidine (and increased it throughout the week), and added Nitroprusside, an IV medication. Before his most recent dose, the Clonidine did not seem to do much for his pressures but this morning his heart rate dropped a little over an hour after the dose was given. It stayed in the 90s and low 100s for almost an hour. The doctors attribute this drop to the Clonidine so we will have to keep a close eye on it. The NiPride enables instant adjustments as his blood pressure needs it but it is not a long term treatment. Initially they started him on the NiPride to get an oral medication regimen in place that would consistently control his blood pressures; however, the plan now seems to keep him on the NiPride as long as his next surgery, the Glenn, happens within the next two weeks.

That brings us to the latest update on the Glenn. Because the doctors do not know why Caelin continues to desat, needs oxygen support, and his hypertension is so severe and persistent, they are talking about doing the Glenn sooner than later. Caelin is currently 4.7 kilograms and Dr. Chai would prefer for him to be at 5.0kg. Cael has been gaining good weight and should be close to 5kg next week, so the cardiologists want the surgery to happen soon- possibly next week. Dr. Stapleton, the catheterization doctor, would prefer to send Caelin to surgery without the routine pre-Glenn cath. His reasoning is because Caelin is so fragile and would prefer to avoid putting Cael through an extra procedure if it is not absolutely necessary. An echocardiogram gives them a general idea of his pulmonary arteries, shunt, and pulmonary pressures (this is what the pre-Glenn cath looks at) and the echo shows that these areas are stable. With that said, echocardiograms are limited and therefore, not always accurate. But the cardiologists have to discuss this with Dr. Chai, Cael’s surgeon, before making a final decision. Although Cael really does not need to go through an extra procedure, at the same time it could be risky for him to go to surgery with elevated pulmonary pressures or have some other surprise that may have been detected during a cath. Ultimately, the doctors need to balance the risks and benefits of each route and hopefully they will make the best decision for Caelin.

Cael had an echocardiogram yesterday that showed his function has gotten better, his tricuspid valve regurgitation is still mild to moderate, and his shunt looks wide open with good flow. We are so thankful for this news because on Saturday his saturations were worse, as was his agitation. So we were nervous and worried about his heart function. But thank God it was actually improved!

We are hoping since Caelin has gained weight, the nutritionist will increase his volume of feeds or his concentration to a higher goal. This should help ensure he continues to gain weight as necessary. He got put back on Colace for his constipation and gas pains and today we asked for his dose to be increased to his initial dose from a couple weeks ago because he is straining significantly when trying to stool.

So as of right now, we are closely monitoring his oxygen need, blood pressures, and heart rate. But more importantly, we are waiting to hear back from Dr. Chai on the status of when Cael’s Glenn will take place and whether or not he will go to cath lab prior to surgery.

On a side note, we are really looking forward to Uncle Tristan and Aunt Cassie coming down Thursday to visit us for three weeks! J

4 Months Old

Bright eyes after a bath.

Smily in the morning!

Cheesin' for Momma!

Rolled from his back to his side all on his own!!

Someone played a bit too hard...

We were tired. Daddy took a picture of us before waking us up.

Blue diamond eyes. My how they sparkle!

Daddy & Cael on his 4 month birthday!

Mommy & Cael on his 4 month birthday!

Nurse Dana & Cael on his 4 month birthday!

Caelin is officially four months today. We find it hard to believe that Caelin has been born for four months and spent every day in the hospital. Never did we imagine he would be stuck here for this long; nonetheless, that is our reality. We look forward to the day we can take our son outside for the first time and familiarize him with life outside of an ICU room.

Caelin is now on four medications for his heart: Milrinone (increased this afternoon to .75 from .5), Amlodipine (twice daily), Clonidine (three times daily), and Captopril (three times daily). Yes, they are trying the Clonidine once again. But this time it came in 0.04 mLs as opposed to 20mLs- so we are confident he is now receiving the right dose. When he was supposed to go home on Monday, he was only on Amlodipine. They added the other three because of his decrease in function on Tuesday’s echocardiogram and his hypertension. His blood pressures have consistently been between 100 and 130 systolic. In addition to these medications, he is still on Lasix twice a day. This morning the intensivist, Doctor Saltiel, increased this to three times daily but Mom said she was not comfortable changing the Lasix with also increasing the Milrinone and adding the Clonidine. So Dr. Saltiel backed off and said we would reassess in a day or two.

On Thursday evening, Dr. Stapleton came in to tell us Cael’s echocardiogram showed his function looks better but that his right ventricle muscle looks like it has thickened with indicates it is being overworked. He also told us that Cael’s blood pressures are trending higher again so he is adding Captopril to help them. With that said, he still had no explanation for why Cael is requiring extra oxygen and flow. At this point he was only requiring about 35% oxygen… he is now up to 40% (down from 42% from this morning).

Since he is requiring more oxygen than he was earlier in the week, Dr. Stapleton ordered another echocardiogram. Of course right before the echo, Cael woke up and I was sure he was going to object; however, the echo tech was Manu and him and Cael are buds! Caelin was so patient and enjoyed Manu’s company and allowed for him to get some great pictures of his heart- which the doctors really needed. So after the echo images were sent to Dr. Stapleton and he analyzed them, he came in to speak with us. Cael’s function still looks good; he believes it is back to Cael’s “normal” (mind you he is still on the Milrinone). He said his Tricuspid valve regurgitation is unchanged and is still mild. He also said his shunt is wide open and does not seem to have narrowed or changed over time. Dr. Stapleton has absolutely no real explanation as to why Cael is requiring twice the amount of oxygen that he should. He has collaborated and brainstormed with Dr. Wilmot and the only thing they can try to do now is lower his blood pressures. Since Cael’s pressures have been trending up, they increased his Milrinone, added Captopril Thursday, and added Clonidine today. Dr. Wilmot mentioned trying Enalipril again but we are not comfortable with that addition since Caelin’s kidneys were adversely affected by it. He still is not peeing near as often or as much as he used to.

A bacterial or viral infection would explain his increased need for oxygen support so they cultured his Atrial line and ran a respiratory culture- both are preliminary negative. But since he was cultured for a viral infection, he is on "Special Contact Precaution" which means everyone other than Mommy and Daddy who enters the room must wear a yellow gown, gloves, and a face mask. :/ He received a blood transfusion of 60mLs on Wednesday and his body did not respond to it like normal. Typically he would get much pinker and his saturations would increase for a while. This time around, it had only a couple hour effect. His saturations went up about 2% and by morning he was paler than he had been in a long while.

Dr. Stapleton is going to speak with Dr. Chai tomorrow during their big morning conference about Caelin’s recent developments. Cael’s current weight is 4.493 kilograms. He is about a half of a kilogram away from where Dr. Chai said he would do Caelin’s Glenn. But if he does not improve soon, it is possible this surgery might happen sooner if Dr. Chai is comfortable with it, his cultures stay negative, and everyone else believes it is the right step. We will keep everyone posted.

Thursday we met with the RN Clinical Manager of the CVICU, the director of Risk Management, the head pharmacist, and the pharmacist involved with Caelin’s overdose on Clonidine. In the meeting they presented us with the facts of the situation and the steps they have taken to fix the errors to make the process have fewer flaws. This includes changing the labels on the medication to make the checking process more accurate and consistent, staff development for the nurses to show them how to access and use Lexicomp before calling pharmacy to check the dose of a medication, dosing alerts upon ordering on both the physician and pharmacist’s ends, and other changes. We wanted to make sure they were actively making changes to improve the process to ensure it does not happen to other children in the future and they have done that. So at this point, we want for this event to just remain in the past. We are thankful the overdose was not with a more potent medication and that Sean was there to notice the physical changes in Caelin before he got to the point of no return. Nonetheless, with every new medication he is prescribed, we ask the nurses to double check the dose on Lexicomp and we check it ourselves.

This afternoon he also had a follow up femoral ultrasound to check out the veins and arteries in his groin area that were previously diagnosed as several narrowed/partially occluded. We are still waiting for the radiologist to read the report and dictate his analysis.

Thank you for your continued prayers for our son, Caelin, the powerful warrior. Even when it seems he is doing better, he still needs as many prayers as possible because it is obvious things can change real quick. It really isn’t fair that he can get worse so quickly but it takes so long for him to recover; however, we are thankful for each recovery he has made and we pray he continues to recover through this obstacle and the infinite ones the future holds.  

Home? ... Just kidding!

Back on oxygen 7.10.12

Good Morning, Mom! 7.11.12

Good Morning, Mom, I want to go home! 7.10.12

Look at me play with my head up straight!

Me & Carrie, the DAISY award winner we nominated!

Caelin during his Car Seat Challenge.

Love you!

Cheese!

To put it plainly, the weekend was amazing! Caelin was in the best mood and was so strong! His Methadone and Valium continued to be weaned, we worked on taste with formula with him, he got to full volume and full concentration feeds, and he did not require any additional blood pressure medication. His sodium was a little low so they changed his Lasix (diuretic) from twice daily to once daily on Sunday. This is the first time he Also, he had an echocardiogram on Saturday and we were told his function looked great! With this said, coming into Monday we were a very happy family!

Mommy ran into Dr. Stapleton, cardiologist, in the elevator early Monday morning. This is how the dialogue went:

Mommy: “Good Morning, Dr. Stapleton.”

Dr. S: “Morning. How are you?”

Mommy: “Fine, thank you! Are you on the floor this week?”

Dr. S: “Yes, I sure am. How’s Caelin doing? I heard he has been doing pretty good.”

Mommy: “Yes, he is doing great! He is amazing. We actually have a pretty big question to ask you today.”

Dr. S: “ (laughs) Is that right? I think I might know what that question is and I am inclined to say, ‘Yes’.”

Mommy: (with surprised grin) “Really? Sounds great to me!”

We went on to discuss the things he and the staff will have to look at, monitor, and evaluate before making a decision. But he clearly stated his opinion; he believes that if Caelin is stable, then the best place for Caelin to grow is at home.

Mommy hustled back to Caelin’s room unable to withhold the content of the conversation she had just had with Dr. Stapleton in the elevator. At this instant, Mommy and Daddy were uncontrollably excited

So during rounds the whole team discussed Caelin’s progress, stability, trends, and concerns. Dr. Stapleton mentioned sending Caelin home. Laurie, the nurse practitioner who closely follows Cael and has become quite territorial over him, was hesitant to respond. Dr. Stapleton told her with a semi-serious smile, “I am going to be beating that drum all week.” Sean gladly joined in, “And I will be playing back up.” Ultimately, they came to a consensus that Cael would get a full echocardiogram and his RA line pulled on Wednesday. As long as Cael passed both of these, he would be on schedule for going home Thursday or Friday. His pulse oximeter, feeding pump, scale, and Lovenox shots were all ordered to be ready for Thursday. At this point, it’s fair to say if our son was older, he may have contemplated sending us to an institution for getting so deliriously happy.

Monday afternoon he got to do his car seat challenge... again. Since it had been 9 weeks since the last one, they required Caelin to redo it. But he passed with flying colors & this only increased our excitement! :) Then Monday evening while sitting in his Bumbo, he had a desaturation spell. His oxygen saturation levels were between 69 and 73 for over 20 minutes (he is supposed to be 75-85). After we laid him down, changed his diaper, and bundled him, he fell asleep and his saturations returned to normal. We really didn’t think much of it because Cael had been such a happy boy all day. Daddy went home to start cleaning the house in preparation for Caelin’s arrival and Mommy stayed at the hospital. Cael had a comfortable and restful night.

Tuesday morning Mommy woke up to Cael crying so she brought him over to the couch to cuddle. He slept a little longer then woke up smiling. Around 8:00 AM as we played and laughed on the couch, Caelin’s saturations started dropping. They stayed in the low 70s with the occasional dip to 68 or 69. With this, he had to go back in bed and get some “Blow-By Oxygen.” This is just oxygenated air blowing out of the bag next to Cael’s face for a little boost. It helped his saturations come up and then he fell asleep. As he slept, Mommy ran home to help Daddy finish up preparing for Caelin’s grand arrival and to drop off the Saturn so we would have only the Journey at the hospital. When we came back Caelin was awake and had the blow-by next to him. Almost immediately upon waking, he required the oxygen to be replaced. After another hour or so, the CV team decided he needed to go on the cannula. He started at 1 liter of flow and 25% oxygen but ended up having to go all the way to 3 liters of flow and 37% oxygen in order to maintain a saturation level of 75%. Even then, he dipped down to 73/74 frequently. In addition to adding the cannula, they ran several tests (CBC, Renal, Blood Culture, Capillary Gas). His lactate was high at 2 (prefer it under 1) and his white blood cell count is low which makes them suspect an infection. So far the blood culture is negative; however, his urine is a bit fragrant so they may do a urine sample tomorrow to make sure he does not have an infection there. They also got a chest X-ray which was near flawless and an echocardiogram. The echo showed his function is mildly depressed. They attribute his low saturations to his depressed function and retaining fluid (gained another 300 grams in 3 days after his Lasix was changed). As a result, they restarted him on Milrinone, bumped him back to twice daily Lasix and gave him an extra dose of Lasix.

We had finally come to a point where we accepted that Cael would be in the hospital until his Glenn. But then over the weekend he did remarkable and the subject of “home” came up. Dr. Pettigrew had mentioned getting him on a regimen with his medications that is more appropriate for home (changing the Lasix & discussing Clonidine-the correct dose- as a possible addition to his Amlodipine) and Dr. Crawford said his echo from Saturday looked great and she did not see a reason for him to stay in the hospital just to get fat. From that point forward, we prayed he would be able to make it home safely before his Glenn. Needless to say, our heart has been stabbed and our hopes of him coming home before the Glenn have been suppressed. It was like déjà vu at the hospital yesterday… planning on going home, having a chest X-ray, echo, and getting bad news about his heart. Except this time it hurts worse.

So today we spoke with Laurie and she says she is most comfortable with him remaining in the hospital until his Glenn. She says he seems to be on the fence every day and even when he appears to be at his baseline, he is still fragile. She feels it is best not to rock the boat and may be best for him to stay on Milrinone if the next wean does not go well. The cardiologist, Dr. Stapleton, wants us to go home because he knows how badly we want it and that Cael could be more successful with gaining weight and growing if he is stable. BUT he does not know if Cael will be stable enough. Just as we all know, Caelin’s heart is extremely fragile- even more so than we give credit for… more fragile than a Fuchsia in frost or a butterfly in a rainstorm. If he does not have the proper care and shelter, his chances of blooming and continuing his admired flight are limited. Although we recognize this, it does not make it any easier living in the hospital, waiting for our son to heal.  

Off Milrinone & Enalipril! & Kidney Function Concern

Standing on the bed! Working my legs!

Hugs for Pooh!

Cute Cael face!

Big Yawn!

Happy 4th of July!

Smiley Baby!

Playing with my rings!

Laughing boy!

Holding up his head!

Wrapped up in one of my new blankies from the Schenks! Thank you!!!

Overall, this week has been a good one! He is super happy and getting back to a normal sleep schedule. Although, he is not sleeping much during the day now & saving it all for at night... not complaining because we would much prefer for it to be this way. But we have a feeling that he is going to be one of those toddlers who is too good for naps…

He did give us a big scare with his kidneys. Yesterday, his BUN, Creatinine, and Potassium levels skyrocketed. His BUN was around 40 (desirable around 20), Creatinine around 4.0 (desireable: 0.2-0.8), and Potassium 6.4 (desirable: 4-5.5). His urine output was also diminished. Normally he puts out 80-180 grams with his Lasix and he put out only 20-30 with yesterday’s doses. Immediately they discontinued his Enalipril (blood pressure medication) because it can decrease kidney function. His Vancomysin (antibiotic) was also stopped yesterday and this medication can decrease kidney function, as well. He received Kayexalate to help him get rid of the extra Potassium in his body and also a bolus of Calcium to help balance the electrolytes. With taking these actions, they did not add any additional blood pressure medications. They simply want to wait and see what his pressures do without the Enalipril. In addition to all these changes, they also reduced his Milrinone from 0.5 to 0.25.

This morning (Friday) the nurse drew his labs again. His Potassium was 5.3, Creatinine was 0.2, and BUN was 22. These numbers are much better and the doctors feel confident that Cael’s kidneys should not suffer significant long-term damage. Thank you, God! And thank you to all who joined in prayer for our little powerful warrior!

Overnight without the Enalipril and with the reduced dose of Milrinone, his pressures stayed in the same range they had been in. Because of this, they decided to continue to hold off adding any other blood pressure-reducing medications. The cardiologist, Dr. Nardell, also decided to come off the Milrinone. Caelin will receive an echocardiogram tomorrow morning to check the function of his heart as the leftover Milrinone should be out of his system and his heart will be pumping without any assistance.

Caelin’s feeds are now up to 20mL/hr! J This is HUGE for him!!! He is actually tolerating them pretty well, but not without a few retching episodes, a couple emesis, and frequent G-tube bilious output. The doctors (cardiologist, intensivist, and GI nurse practitioner) are not concerned with these minor responses because it is better for him to get the high volume and concentration, which his body has been lacking for so long. He needs to put on good weight. The weight he gained last weekend was all water weight and he dropped it by Wednesday. He is now averaging around 4.16 grams. So really, he still has a full kilogram (approx. 2 pounds) to gain before he can have the Glenn. The doctors said they would be ecstatic and surprised if he gained 30 grams a day. At this rate, we are looking at least 30 more days (around August 6^th) before Caelin will receive his Glenn.

All week he has been working with Physical Therapy and Mommy and Daddy to increase the strength in his legs, arms, chest, shoulders, and neck. He has made significant improvement with kicking his legs and starting to keep them straight instead of frogged all the time. Also, he is doing an amazing job of holding up his head on his own while being held, sat up, and in his Bumbo. He still is not able to lift it up off the bed while laying down but hopefully once we get his chest a little stronger, he will be more successful with that milestone. We have done a little bit of tummy time with him to help him progress and to relieve pressure in his belly but not too much because we do not want to push him. He has also been doing some taste stem with the speech pathologist, Julie. He took 2mLs straight on Wednesday! J We will most likely start spoon-feeding immediately after Glenn. J Woohoo- Mom is super excited about this!

Despite the downs amidst all the ups, we remain confident and hopeful in our son. He is an amazing little boy and there are big plans for him in his future! We know he is meant to change the world! Thank you for your prayers and support from all over!