I would compare the past few weeks to a roller coaster. Benjamin has had his ups and downs with his left lung, we have had a few awesome family events, and we have had quite a change in nursing. Once again, I was reminded not to worry. 🙂
A little over two weeks ago, Benjamin started to act as though he didn’t feel his best. We are completely accustomed to the occasional lung collapse and can manage it at home, but this time it is a little different. After multiple ups and downs and frequently thinking we had beaten it, I took him in to the doctor Tuesday. Of course, the lung is closed (not surprised), but what to do about it? For now, we are trying an antibiotic, and we return to the doctor Monday. If the lung is not open, then Benjamin will be admitted and he will have another bronchoscope. My biggest fear is that there is nothing more they can do for that lung. When it is down, Benjamin only has brief periods of energy, and he sleeps much more. Between floppy tubes to the lungs and mucus plugs, the left lung is a little challenging. Yesterday, I thought we were once again getting over it, but last night we were up again doing CPT trying to open the lung and lower his heart rate.
Between visits with the pulmonologist, he went ahead and set us up with a cardiologist. Benjamin had an echocardiogram and an EKG between visits with Dr. White. While watching Benjamin get his echo, I yawned a few times. The girl commented on how tired I must be especially after finding out I had a 3 and 4 year old. My mother-in-law talked a little bit about our routines, but I made sure to reassure both of them that we were doing great. We take it a moment at a time and no need to worry. The tech said her mom tells her, “If you pray don’t worry, if you worry don’t pray.” AMEN.
It was good news from the cardiologist…Cardiac output is great, as well as, sinus rhythm. Benjamin still has a small hole between the top two chambers of his heart, but at this time it is not affecting the function of his heart so we will leave it be for now…If you pray don’t worry, if you worry don’t pray.
Benjamin also lost his main nurse last week. She had been with him 40 hours a week since he was discharged from the NICU. We were sad to see her go, but her life took her in a different direction. This week we are starting with new nursing. As you can imagine, leaving Benjamin with someone new is out of the question. I warned them that it will take me a while to leave him, and don’t take it personally. I am so afraid initially that if something happens and I’m not there, that I will hate myself forever. I make sure that I feel as though the nurses are prepared for anything. If you think it is hard to drop your kid off at daycare the first time, try to leave your child who is supported by electricity and requires constant medical care. Sheesh…it gives me anxiety just typing but… if you pray don’t worry, if you worry don’t pray.
Please keep Benjamin and his “wimpy” left lung in your prayers. 🙂