Well, it has been a while since my last update. Last week Logan was in the hospital. On Monday night (4/9) Logan started having trouble breathing and was running a fever. A couple of days prior over the Easter weekend, Logan was vomiting and aspirating his pediasure. For some reason, the food was backing up. He is fed in his J Tube (the port of the tube that goes into the start of the intestines). He should not have had pediasure coming up. By Monday night he was acutely ill. I stayed up with him most of the night monitoring his oxygen and giving him nebulizer treatments. His breathing continued to worsen and he was very lethargic. I took him to the ER at Children's Hospital in Minneapolis.
They immediately started an IV, suctioned him (OMG there was a lot of crud in there!), gave him some fluid, chest & abdominal xray, steroids, and antibiotics. The respiratory therapists came by multiple times to suction him. His oxygen dropped while we were in the ER so they placed him on a mask with oxygen. He was so tuckered out that he didn't move when they put in the IV and he wasn't even bothered by the oxygen mask. Those who know and have seen how much my son moves, know that is not normal at all! My dad calls him Mr. Wiggles if that is clue enough! So he was diagnosed with aspiration pneumonia.
He was admitted to the floor. When we got upstairs the nurses were worried about him. They felt that they would not be able to provide enough close monitoring of his suction and oxygen needs and therefore wanted to move him to the step down ICU. The doctor felt he was appropriate for med/surg. He won the battle and over the course of the next four hours, Logan perked up a ton. I somehow kept my mouth shut about being a nurse to everyone other than the ER nurse. I just wanted to be his mom, nothing else. No one knew the first day that I was a nurse and I was happy to have it that way. I let the doctor and nurses bicker over where to send him knowing that I could speak up at any time if I really needed to. I really appreciated that the nurses were advocating for his care and safety but I did feel comfortable with him staying put.
So we staying in the hospital from Tuesday through Friday. The first 24 hours was focused on his airway and breathing issues. Lots of nebulizers and suctioning. The next day we worked on trying to get him to poop. The poor little guy had been off his stool medications since Monday night and trust me, he needs them to get it going! So by the end of Wednesday night he was upset and in pain. He was thrashing all over the crib and he kept me, Aunt Michele, and the nurse busy to say the least. Finally he got an enema and boy what a relief. On Thursday the goal was to start his feedings via the J tube again and make sure he didn't start vomiting. We stayed an extra night just to make sure the feeding tube was working properly and went home on Friday. His oxygen saturation was 89-91% while sleeping on Thursday night (improved thru the night) and were the same during his nap on Friday. The nurse wanted to put on oxygen but knew this would prevent him from going home. The pulmonologist saw him multiple times during his stay and came Friday morning to check on him. We told him about the low sats. He asked if I would feel better going home with oxygen. I felt this was not a bad idea. It couldn't hurt and Joel and I have had many nights where we wished we had it!
So off we went with a new regimen of medications and therapies. The home health company brought out the oxygen that night and taught Joel and I how to use it. After that we were exhausted. How could we add anything more to what we were already doing? I am an RN at my job and now feel as though I do this at home non stop as well. When we spoke about how overwhelmed we were I decided to call our public health nurse and case manager. Our case manager has since discussed Logan with the nurse that runs the program in Sherburne County that provides nursing care. She is going to come and evaluate Logan and decide if he qualifies. In the meantime we interviewed a PCA (personal care attendant). We have money in our budget to have someone come and care for him at home when we are at work. We are hoping to hire someone soon as well as see where we stand with some nursing care.
Logan has had a pretty good week since then but I have noticed small amounts of pediasure in his G tube (stomach). I was immediately worried that the problem that got us to the hospital in the first place had returned. The GI nurse practitioner ordered an xray to check placement of the tube. It was fine. To be safe we went to Children's this morning and had it replaced. We were hoping to get a longer tube just to make sure it was deep enough but the next size up was too long. So we will continue to watch and see. There is a possibility that he will need to be put on a medication to increase the rate of his digestion to prevent the back up that happened. Hopefully the new feeding tube will be our fix!
Today he is not feeling well again. He has aspirated his secretions more than he normally does, has a low grade temp, is very tired, and has pooped a million times! We think he has a GI bug but I am not taking any chances and am watching him very closely.
In the coming weeks we have an appointment at Gillette Children's to have his seating evaluation. This means we will be able to get him a specialized chair that fits him and his needs. We have a new appointment for his laryngoscopy and bronchoscopy with the ENT doctor. We were supposed to have it last Friday but the ENT doctor said that the anesthesiologist would not want to perform the procedure until he is healthy. I think we are schedule May 19th for it. He will take a look at his airway and lungs during the procedure and find out if there are any appropriate interventions we can make in the future to help with his breathing and aspiration problems.
We will follow up with the pulmonologist in a couple of weeks as well. We have a referral to a genetics physician at Children's. I can't wait to get that going. Maybe another person with a fresh perspective can help us find a diagnosis.
Other than that we are making it day to day. The crisis period is beginning to subside and we have a new routine in place. We haven't had to use the oxygen yet. Lauren thinks that every time Logan gets sick it will mean he has to go to the hospital. When we were heading to Children's today she kept telling me it was the place where Logan and I live. Poor kiddo is so confused. Otherwise she seems to be coping well. She is up to all her normal tricks! Both my children amaze me every day with their ability to cope with all that is going on around us, and somehow Joel and I seem to make it through as well!
Thank you to all our family and friends for their continued support and especially when Logan was in the hospital. A special thanks to Jackie, Skip & Cindy, Michele, Pat, and my husband. I was definitely in momma bear mode and didn't want to leave Logan's side. You all came through to keep me fed, clothed, and sane!
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