UPDATE (7/30/13)
So, where to begin? Around midnight last night Beckett’s oxygen monitor began alarming at 59. He needs to be above 60 at least, and preferably above 70. I watched to see if he would come up on his own. He didn’t. So, Iturned up his oxygen and watched some more. He still would not come up above 59. Again I turned up his oxygen. At this point he was on 2 Liters, which is the highest we are to go at home. When he still did not come up I woke Jonathan. After multiple calls to the Cardiologist and my mother coming over for another set of eyes, we decided it was best to come back to Riley to at least have him looked at. Beckett behaved so well in the car and was even satting in the mid 70’s. We became hopeful he might just need some IV Lasix and a short stay in the heart center. Once we arrived things quickly began to spiral out of control. They got an x-ray, had to poke him multiple times for blood and an IV, put him back on vapotherm, all the while Beckett was screaming and desatting. In between each thing I was able to pick him up and calm him down, only to have to put him back in the crib for the next round. It seemed so cruel. Eventually they finished with things in the ED, and we just kind of waited for results. By the end of all that Beckett could hardly even make a sound when he cried he was so worn out. They told us his x-ray looked like it could be just “wet” from fluid, aspiration pneumonia (for which they started him on antibiotics), or a pleural effusion, but they would have to wait for the official read. We had to be admitted to the PICU because he was on Vapotherm, so it wasn’t long before we were taken upstairs. (remember, Jonny and I had not slept at all and this was around 7am!) When we wheeled into the room, there were already numerous people waiting on us to arrive. Almost immediately the doctor came out to explain Beckett’s blood gas was so bad they were going to have to put him on the ventilator (which proved very difficult for some reason and required four attempts), and put in a chest tube because he had a very large pleural effusion. It was so shocking. Before long Beckett was on the vent, on a Lasix drip, had a foley, had a central line, had an arterial line, and was paralyzed and sedated. They were trying to hold off on the chest tube to see if he could just pee out most of the fluid. Jonny and I were so overwhelmed it was all we could do to make it to the pull out chairs in the lounge and try to get some rest.
When we returned to the room, Beckett did have the chest tube, which initially drained 60mls of fluid. He has what is called a chylothorax, which is an effusion that is made up of lymph and fat from milk that couldn’t be digested. So, he will need to be put on special formula as well as no more breast milk. I am taking this opportunity to stop pumping, which I have been doing for the last seven months. They had also added back fentanyl and milrinone, both of which he has already been taken off of this evening. He was on some other sedation and paralytic meds to keep him completely calm.
His oxygen hung in the 50’s for most of the afternoon, and even stayed in the 40’s for a while. I am sure you all understand that is pretty low. They doctor kept reassuring us that despite being so low, his lactates were normal, which means his tissues were still getting enough oxygen. They put him on the cath schedule for Thursday, because they thought most of his problem was directly related to his collateral vessels and they should be plugged. When we came back before shift change, we asked the doctor that since they thought this might fix the problem, why are we waiting until Thursday. He went on to explain, that the collateral vessels developed for a reason, and plugging them might actually do more harm than good and even the procedure could be dangerous for Beckett. They think by allowing time, Beckett will either show he is going to get better, or, he is going to get worse. If the latter, they may have no choice but to proceed with the cath. They also know now that Beckett has a Glenn, he does better off the vent, so it is likely his oxygen would be better if he didn’t need the vent. They said they have been adding things all throughout the day in hopes that they might work, but Beckett has definitely been deteriorating as the day has gone on. Clearly not what any parent wants to hear. It was at this point Jonny and I no longer had any words and we just went into the room, stood beside the crib and broke down. It is so hard to accept that 24 hours earlier I was rocking my son to sleep at home, and now he is so sick, and may not get better. We watched him desat into the 30’s multiple times and have to be bagged back up into range. I cannot even begin to explain what this day has felt like.
But, when the night shift doctor came on, the first thing he changed was to make sure Beckett was no longer on the paralytic (he hadn’t been for a while because breathing on his own actually helps with the pressures in his lungs) and then made sure he was breathing enough to breathe on his own. He then changed the ventilator settings from actual ventilation support, to CPAP. This means Beckett is breathing on his own, and creates negative pressure in the lungs. Immediately Beckett’s oxygen saturations went up into the 70’s. As the night has gone on they have settled in the high 60’s, which is more of a baseline for him, and completely acceptable. Praise the Lord. As always, the sedation meds barely touch him, and they keep having to give more and more. Just before I left the room this evening, he had been thrashing around in the bed, and that is not what we want, so they are even talking about taking the tube out sometime tonight. It is so unreal how in just a few hours things started to look up. We obviously don’t want them to take it out too soon, but we also want to do what’s best. Jonny and I are doing our best to continue to trust that this is all part of the plan, but it was definitely a curveball we didn’t see coming. We weren’t ready to leave home quite yet. But, praise the Lord we realized there might be an issue and made it safely down here to Riley before things really became an emergency, and Beckett is truly getting the quality care he needs. We were hardly here an hour before what seemed like half the hospital new we were back, and nurses were coming to visit and check on the little man Beckett. And thank you Chrissy for the coffee! I may not have made it through today without it! Our son is truly loved here and I could not be more grateful. So, we kind of wait at this point to see which way Beckett decides he wants to go. We are praying he continues to move up and God uses this to teach us more about true trust and blind faith. Beckett is one strong little man, and we are grateful it appears there are problems that can be fixed. Perhaps the best news of all today, was the echo appears unchanged from the one he had directly post op a few weeks ago. So, it doesn’t look like this is an issue of his heart not handling the work. Hallelujah!! In the grand scheme of things, Beckett has been through much worse, but this is definitely serious; we just pray God continues to give him strength to not give up. God has been so faithful, and I know he will continue to be.
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
Heart of Beckett 