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.