Somewhere Over the Rainbow, Skies are Blue.

The rainbow outside of Cael's room. 6.20.12

All comfy in his bouncy with his binky!

Looking right at Momma!

Falling asleep while Dr. Wilmot is doing his 4 point blood pressures.

Caelin was not feeling well the past few days. His white blood cell count had spiked, as did his agitation! He was put on antibiotics and these seem to have helped. He is also battling some constipation while his body adjusts to getting more formula (7 mL/hr woo hoo!) and flushing out the narcotics he receives. Mommy received a couple smiles this morning- the first ones since Saturday! Cael did have a desaturating spell overnight, which caused him to get more oxygen support (35%) on Vapotherm and go up from 4 liters of flow to 4.5. He was doing better and resting then he had another episode of being constipated. This required Cael to be put back on 4.5 liters of flow and on 45% oxygen- this is where he is at currently. He will receive a blood transfusion because his keeps getting drawn for labs, PTTs, and blood gasses.

We spoke with Dr. Wilmot, cardiologist, yesterday and he said that he is pleased with Caelin's progress thus far but we are still weeks away from even talking about the possibility of Cael coming home before his 4th open-heart surgery. :/ We appreciate Dr. Wilmot's honesty, nonetheless, it is not the news we want to hear. But as long as Cael continues to make small steps of forward progress, we will continue to be happy and thankful!

Dr. Wilmot came into Cael’s room yesterday to test Cael’s blood pressures himself. The results were as follows: Left arm= 105/55 means of 66 Right arm= 96/49 means of 60 Left leg= 100/49 means of 60 Right leg = VERY DIFFERENT; Dr. Wilmot spent a lot of time trying to get Caelin’s blood pressure in his right leg. His leg and foot are warm with pulses but the blood pressure flowing through is much lower. The first time it was 60/33 means of 38; second time it was 60/33 means of 38; third time 58/48 means of 50; and the fourth time read 66/39 with means of 47. Dr. Wimot explains this significant pressure difference in his right leg from having been catheterized in his right femoral artery three times (Cath lab on 4.3.12, Cath lab 5.14.12 for procedure and again for code). He just got the arterial line out of his femoral artery (groin) Tuesday. Dr. Wilmot assures us it is temporary and should return to normal.

Mommy and Daddy met the Nephrologist, Dr. Perlman, on Tuesday. She told us that the two abdominal ultrasounds Cael received were contradicting and inconclusive. Apparently the renal artery has a large part (which, although it may be incorrect, we will refer to as the Segmental artery) and smaller parts (which we will call the Lobar arteries). So Saturday the Lobar arteries measured as being abnormal, indicating possible Renal Arterial Stenosis (narrowing of the kidney arteries) while the Segmental artery measured as normal. Monday’s ultrasound said the opposite; the Segmental was abnormal and the Lobar arteries were normal. With this, the Nephrologist concluded Caelin is just too small to get an accurate measurement so they do not have any further interventions planned and will monitor his Kidney numbers (BUN, Creatinine, Urine output) and progress.

Cael’s BNP numbers have been trending downward- which is good. The BNP is used to measure heart failure and where Cael is trending typically means heart failure is present (does not mean his heart is dying but failing to pump as effectively as it needs to in order to supply all the organs in the body with proper blood flow). This is to be expected because of everything his heart has been through; however, since his BNP numbers are trending lower, the trend could indicate his heart is recovering.

As mentioned previously, Cael is now up to 7mL/hr on continuous J feeds. They are going incredibly slow because of Cael’s history of feeding intolerance and they do not want to stress his heart and body too much. He has been experiencing some major constipation and gas pains from the restarted and increased feeds and narcotics. He did get Maalox on Tuesday through Wednesday but the volume was too much. His dose was 5 mL to be put through his G tube with 3 mL of flush- this was just too much for him to handle at one time so it caused him to vomit. He received 6 doses of Maalox and he puked every time. So needless to say, the Maalox was stopped. We allowed his body to rest and recover all day yesterday and he was back to gas pains and constipation this morning but with diarrhea. Despite his bowl movements being thin, he is straining severely when pushing it out, so he will now receive a twice-daily dose of Colace to help get things moving.

Caelin will be getting an echocardiogram tomorrow to check the function of his heart now that he has been on feeds for a few days. As long as his heart’s function still looks good and his Tricuspid valve regurgitation is still trivial to mild Dr. Wilmot plans to start the wean off Milrinone (IV medication that helps his heart squeeze). Dr. Wilmot says he is going to wean very slowly, only a little bit at a time, and do follow-up echocardiograms to check the function. Praying that Caelin stops having these desatting issues and that his heart function is still “normal” so we can work on him coming off this medicine!