Agitation & Blood Pressures

Caelin <3

Mommy & her snuggle bug.

Daddy reading the card Cael got for him.

Big Guy & Little Guy on Father's Day!

Last week felt let it dragged on forever!! Of course it was off to VERY rough start. This week has been better and hopefully it will continue the upward trend.

To recap the end of last week, let’s start with a positive… Caelin is still off the ventilator! They have not been able to wean him down on the settings for various reasons, in fact they had to go back to 7 liters of flow, but he still did not have to be re-intubated, which the doctors thought they might have to do. Overall, he has been much happier off the ventilator. He had lots of smiles on Friday and Saturday for Mommy, Daddy, nurses, and even some specialists. If his voice weren’t so weak, we are pretty sure he would have had a couple giggles.

Caelin’s persistent high blood pressures and bradycardiac episodes are concerning to the doctors. He has been hypertensive with a pressure gradient for weeks now. Pre-surgery, the doctors attributed this to his obstruction of the Aortic arch; however, now two weeks post-op, Cael’s upper extremities are still 20-35 points higher than his lowers, on average. In the minds of the doctors, this should not be happening. With having three echocardiograms in a row, the doctors are positive there is no residual narrowing of the Aorta so they are baffled with his pressures. In fact, Dr. Stapleton and Dr. Wilmot agree Cael’s function looks great and his heart has started to shrink back to a more appropriate size. Caelin had been on a NiPRIDE continuous infusion for a while to help his blood pressures but he was able to come off of it on Saturday because they changed his medications to Enalipril and Amlodipine and his pressures were finally adjusting to the doses. Because of his pressures, Dr. Stapleton, the cardiologist, ordered an abdominal ultrasound and brought in a more accurate blood pressure machine called a Dynamap, to test Cael’s pressures himself. He received numbers pretty consistent with what the nurses had been getting… a 40 point pressure gradient from his left arm to left leg. YIKES! Dr. Stapleton’s response: “This shouldn’t be happening (perplexed look). Caelin, why are you doing this to me?” Yes, my child loves to make the doctors test their skills and knowledge. So despite the high pressures, Saturday into Sunday morning was great. He slept well and was very happy.

Then came Sunday at 8:30 AM… Sean’s first Father’s Day, of course. We were hoping for a nice relaxing day but to no surprise Caelin’s body had other plans. Cael cooperated when Mommy and Devra put his “Little Guy Clingan” shirt on him while Daddy was downstairs getting breakfast. Daddy came back, ate breakfast, and opened his gifts. After he saw his shirt, he pulled Cael’s covers off and saw Cael’s matching shirt. They are so cute (the shirts and the guys)! It was during this time that Caelin really started getting fussy. His heart rate started climbing and he became difficult to console. Mommy held him for a while and he slept in her arms. While he was asleep, his heart rate started climbing into the 180s, then the 190s. He began squirming and his heart rate hit 211. As this was happening, our nurses was getting increasingly concerned so she got advice from other nurses and contacted Dr. Stock, the intensivist. Caelin awoke screaming, his heart rate stayed above 200, his pressures skyrocketed, and he pooped! We were hoping for instant relief from pushing out such a big black, mucousy poop but Cael’s agitation continued. Dr. Stock came in wanting to know what was going on. In addition to everything, we noticed his extremities were purple and had a slow capillary refill. Interpreting all the details, Dr. Stock ordered an EKG to check the electric parts of Cael’s heart to make sure he was not truly experiencing tachycardia, dangerously rapid heartbeat. She also ordered an abdominal X-ray and an echocardiogram. She decided he could be dry because he was on IV Lasix every 6 hours so she gave him Albumin (volume) and changed his Lasix to every 12 hours. She also had respiratory on stand by in case he needed to be re-intubated or go on a different nasal cannula with more support because he was working to breathe. Satisfied that Caelin was in a more stable place, Dr. Stock went to leave Caelin’s room. Before she left she told Caelin “No more misbehaving.” She then looked at us and said, “He is adorable. Really, he really is adorable, but a pain!” With that we couldn’t help but smile because although it is beyond frustrating, it is also so very true. He is the most adorable pain we have ever known. J Dr. Stock’s interventions did seem to help, but only temporarily. Since then his heart rate has spiked several times, he experienced a couple desaturation issues, had a low-grade fever, has woken up crying uncontrollably like he is in pain, is unable to be consoled without sedation, and has had numerous bradycardiac episodes (he will hold his breath, dropping his heart rate to between 70 and 100 then it will climb back to 200 within a few seconds). Not to mention, this morning his labs revealed his white blood cell count went from 12 yesterday to 29 today. The doctors suspect he has an infection but they do not know what kind; therefore, blood and urine cultures were sent to the lab to be tested. They have shown no preliminary growth but he received his first dose of Zosyn this afternoon as a precaution. Zosyn has proven to fight bacterial infections, skin infections, pneumonia, and urinary tract infections. These are all possibilities because of his Foley catheter, central lines (IV), and having been on the ventilator. He did lose his central femoral line Sunday because it was leaking lipids; we suspect this could be the infectious culprit if one of his cultures comes back positive. 

The abdominal ultrasound was not read until Sunday evening and the reading was not concise enough for Dr. Stock. Apparently the reading had a bunch of numbers and measurements but no interpretations from the radiologist as to what the numbers mean diagnostically. Because of this, she did not want to tell us anything because she did not want us to unnecessarily worry. Of course, our minds were going crazy though with possibilities. This morning Dr. Wilmot did say that the numbers indicate some possible stenosis (narrowing) of the renal arteries; however, it was not conclusive so they ordered a follow up ultrasound. After Dr. Wilmot spoke with the radiologist, he told us the follow up ultrasound looked better than the original.  He also told us the radiologist said the ultrasound tech who took the pictures today is more experienced and therefore, better trusted. Despite this fact, they still feel like the ultrasound is not giving them the best pictures so Cael will most likely get a CT scan. They know an MRI would be better than a CT but the MRI is much longer and would require Cael to be re-intubated and none of us want that. Dr. Wilmot also said he is going to get in contact with the Nephrologist (pediatric kidney doctors) to make sure there are no other tests that would be better for Cael. When Dr. Wilmot is on, Mommy and Daddy are a little bit more at ease. He is the greatest advocate Cael has (other than Mommy and Daddy) and this is what we respect most about him. He is brilliant and honest but above all, his compassion, diligence and dedication does not allow him to stop working until he has all the information he can gather, can formulate solutions, and answer all of Mommy and Daddy’s questions to the best of his ability (which is most often accompanied by some sort of analogy- today it was a garden hose to the renal artery). It is apparent that he truly cares about Cael, and for this we cannot thank him enough.

His feeds were restarted on Friday and he got up to 7 mL/hr yesterday; however the feeds were stopped yesterday early afternoon because Caelin was having all of the aforementioned struggles. With hopes of improvement, Dr. Parilla, the intensivist on this week, restarted Caelin’s feeds at 5 mL/hr. Thank goodness! It is really frustrating that every time Caelin has an episode they stop his feeds. We understand that they want the blood flowing to the brain, heart, and kidneys but MAN! we fear his GI track is really going to be out of whack & will take a long time to adjust to feeding. Also, it is possible that part of his agitation is gas and his bowels. One plus is his morphine drip was shut off so this should alleviate some of his constipation.

Thank you for your continued prayers, support, and love. We pray that Caelin’s pressures will come down soon and the gradient will be resolved. We pray he will be less agitated, will start to be consolable, and the Zosyn will, if even just a little, help lower his heart rate and pain and fights the infection if there is one.