After our pro-life benefit dinner, the following day he got progressively worse about taking in his formula. By 1pm on that Friday before Thanksgiving, he had only drank 4 oz. I called the cardiologist's office and they recommended that I go into the ER with him.
Brian met me there after we were in a room. Roman was a little dehydrated at this point and so they were trying to get an IV started. He is notoriously difficult to get blood from because his tiny little veins collapse once they poke them. They did this twice before they decided to get a nurse with an ultrasound machine to go for a deeper vein. That finally worked, however they were not able to get blood from that ID after the initial massacre of putting the IV in. So from that point on they had to do heel sticks every hour to check his glucose level. They put him on oxygen because his saturation levels for between 87 and 91. They called for his pediatrician to assess whether or not they could admit him at this hospital or have to send him to a children's hospital. His pediatrician's resident came down and after assessing your decided that he should go to a children's hospital where there is a cardio-thoracic surgeon available. His blood work came back and his BNP number was 8,000 which means that his heart was being stretched and stressed, cogestive heart failure. His X-ray of his chest also showed a small amount of general fluid in his lungs. It was almost midnight before we got in the ambulance to go to the local children's hospital. It was my first time riding in an ambulance, and they told me it was like a limo version because someone had donated it. It was no typical ambulance like you see on TV. Only the best for Roman!
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| Just the beginning of all the wires and tubes hanging off of him. |
After we arrived at the Children's Hospital, everything the doctors at the ER had told me was being changed by the PICU doctors. Of course they wanted to draw their own labs at 12:30 at night. I told them that he was a hard stick but they said they'd get their the "best poke," a story that I no longer give any credit. Three pokes later, the three nurses looked at each other and said let's just do this in the morning. Roman and I finally got some sleep around 2:00 in the morning until they came in at 4:00 in the morning to try to get those labs again. After three more attempts they finally got it. They needed a straight stick so they could grow a blood culture from it. When the culture came back 24 hours later they thought he had gram positive cocci bacteria however after streaking that out on a plate they found it to be a skin contamination. Praise God!
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| The ER time seemed endless! |
The ER doctor had rushed to put him on oxygen when she walked in and his oxygen was 87%. However, once they called ahead to the Children's Hospital and spoke with the intensivist doctor they were told to give him room air only through his nasal cannula. When we arrived at the Children's Hospital they took out the nasal cannula immediately. They explained that for his heart condition he should not have oxygen saturation from 95 to 100%. Because it causes vasodilation which puts extra strain on his heart.
Well, then Roman had a tiny bit of blood in his diaper so they had to do a straight catheter to get a urine sample. At this point he's a fairly dehydrated little guy and had very little urine to give. He was however a very good patient for the procedure. Most of the time when they messed with him to give blood or anything remotely painful or where they had to hold him down he typically got highly agitated, his heart rate went above 200, his oxygen dropped just a little and occasionally he spiked a fever.
On Saturday morning we had an EKG again and an echo cardiogram that lasted an hour. We waited most of the day to see the cardiologist. When he came he told us that Roman was in congestive heart failure but they were giving him a diuretic called Lasix which would help remove the extra fluid in his lungs and hopefully put off heart surgery if it worked. They had not let me feed him until they were sure there was no eminent surgery. However, they only let me feed him 1 oz and then they decided that the risk for aspiration was too high and they would wait until Monday to let me feed him again after he had a swallow study. In order for him to continue to gain weight they ordered an ng tube put in. This was a big fear of mine and why I have been so stressed about getting food in him. However, I was feeling fairly confident that it would be coming out soon as long as the swallow study went well.
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| Feeding Tube |
A friend of mine from college has a daughter with a feeding tube and she had come up to visit me. She was there with me when they put in the feeding tube. I will be forever grateful for that. I know that it brings back bad memories for her when her daughter was a baby and having to go through all of this. I support and love that she showed me during this Hospital stay was seriously more than I could ever have hoped for and truly sanity saving. She kept me company, she let me take a shower, she brought me food, and she even let me have a little nap. All that on top of supporting me through the NG tube going in and helping me make a room change when they moved him to intermediate Care. I will be forever grateful!
So once the NG tube was put in I had to worry about Roman pulling it out. Luckily it was on the side of his IV arm that was all taped up to a board. But somehow even when I was right there he was able to get a hold of that too and pull it out a little bit. I immediately push the call button and set them up. Even proceeded to smack himself in the face with the same arm and push the tube right back into place. Wonder of wonders! I tried to keep him swaddled as much as possible but he definitely needed a break from that from time to time especially as he started feeling better.
Sunday night Brian came to take my place so that I could go home and get a good night's rest. I'd only had about 6 hours of sleep in 48 hours. Roman's godparents and their family had arrived at our house on Saturday at noon for their week-long visit. We were going to have Roman baptized the following Friday. I was glad to go home about 7:00 p.m. and hug on my kiddos and visit with my good friend.
While I was at home Brian said Roman was looking better and better. He did not spike a fever, pull out his tube, and he slept pretty well considering the circumstances. However, of course, Brian didn't sleep well because of dealing with all the interruptions of nurses coming in. Monday morning they did an artery stick since he had no more veins to draw blood from in order to get another blood panel. By the time I arrived at 1:00 p.m., it was time for his swallow study.
Brian stayed for that. He passed with a solid b+. He didn't get an A because he did have some reflux, but they saw no aspiration which was the main concern. They have decided to thicken his formula like we had already intended to do beforehand. He drank the barium for the swallow study quite well and then drink two more ounces of thickened formula when we came back to the room. The plan was then to move from a continuous to feed to a bolus tube feed overnight where he would receive increasing amounts of formula every 2 to 3 hours instead of non-stop. This was to prepare him for Tuesday morning starting on some bottle feeds.
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| A makeshift cover for his IV boarded up arm was just the sleeve cut off of one of the shirt with hand covers. |
At this point the doctors all begun talking about discharge, and we got home Tuesday night before Thanksgiving. The kids at home were dying to see him!
Over the course of this Hospital stay, Roman had a tremendous amount of prayer and support from our friends and family. I got tears in my eyes every time I would read a note from somebody telling me that they are praying for him or that their whole family is praying for him or even the perfect strangers were now praying for him. It is been so wonderful to witness how much joy Roman brings to the people in our lives and how he is always pointing them to our Savior.
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| Going home!!! |
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