We’re Home!

I guess I should catch you up from the Transfer to us being home! [fair warning... your retinas may become detached after this post]

Mon 3/1 - transferred to OLOL - first time riding in ambulance and we got the bells and whistles sirens and lights - it was quite the bumpy ride and thankfully, my little man slept the entire ride. We arrived at OLOL and the nurses made their initial assessment. They attempted to push a Heparin Lock through his IV and it began leaking (I think the girl used a bit too much force because his IV worked the entire ride to OLOL while his antibiotic [rocephin] dripped into his teeny vein, but I digress). They brought us into our room that we would call home for the next several days... room 3112. We were placed under "droplet precaution" because of the pneumonia diagnosis - basically any one that entered the room was supposed to wear a mask and any time Pierce left the room, he had to wear a mask; and we were only let out for tests/procedures. Three nurses brought us into a procedure room and started a new IV in the top of his right hand and then used a butterfly needle to draw blood from the top of his left hand [where his previous IV was]. I calmed my sweet baby boy down and we were brought back into our room. I asked if they would give me one of the bottles I had prepared and his Nexium and they said I couldn't feed him nor could they administer any meds until we met with the hospitalist [strike #1] mmmm-k...

Enter the hospitalist... Dr. N [a bit pompass {huge dislike of mine}, offers no explanation for his interpretations, and has the nerve to answer his phone at the end of our conversation but before he asks if I had any questions he definitely tried to rebound from that error by saying to whomever he was speaking to "I am leaving the room of a beautiful little baby boy" and then he put his call on hold and asked if I had any questions... possibly but certainly not for you]... moving onto our actual conversation - he informs me that he looked at the xray's and he was not convinced that P had right upper lobe pneumonia. He thought it looked like viral bronchiolitis. He decided to start P on standard bronchiolitis protocol (suction the nose, stay hydrated and that's about it) and he was discontinuing the Xopenex breathing treatments because "evidence doesn't support breathing treatment usage for bronchiolitis or pneumonia." The nurse brought in one of his bottles and I asked about his Nexium and she stated that fabulous Dr. N ordered Nexium once per day via IV... IV administration was fine by me, but once per day and only 7mg?! P's prescription for Nexium is 10mg BID (twice daily).[strike #2]

I think I was fuming by the time our nurse came back in. I told her that I was really upset and second-guessing my decision in transferring his care. She apologized. I asked if we could get a new hospitalist assigned to P's case and she said that every day we would probably see some one new. I told her that under no circumstance was Dr. N allowed on P's case. You have to understand that I have hit a breaking point with medical professionals... I used to never question doctors [heck, I am not the one who went to school for a bazillion years to put two extra letters behind my name - although I have days where I wish I would have {too tangential?}] but after receiving the MOST AMAZING care from Dr. Robichaux, my perinatologist [I could write an entire post on him... every doctor should strive to be like Dr. Robichaux], I have some pretty high standards. Plus, I am P and B's advocate, their voice.

Tu 3/2 - Things began to go more smoothly in terms of health care received, but for poor P, his health began to go down hill pretty rapidly. I fed him 2-ounces around 7-7:30am. When our day shift nurse came in to take his vitals, I pointed out that P was retracting at the base of his ribs [diaphragmatic]. She counted his respiratory rate and it was 58-60. Our new hospitalist, Dr. K, came in to evaluate him. She stated that she was concerned with how fast he was breathing and because his respiration rate was over 60, he could no longer have anything by mouth [NPO orders]. I sat next to him and counted his respiratory rate for a couple hours and the nurse suctioned his nose often - he showed no improvement and was beginning to wheeze. Finally around noon, respiratory therapy came in and did an assessment, he scored a 4 - just enough to receive a breathing treatment with racemic epinephine (and she set him up on a breathing treatment plan). I sat and watched my sweet baby getting worse by the hour... his respiratory rate was steadily 64 and it peaked out at 68; he continued having diaphragmatic retractions and began retracting sub-sternally as well. He slept away the afternoon and by early evening, he was one irritable little man [if you remember, the last time he had anything by mouth was 7ish am]. It's a bit terrifying to sit there and watch your baby working so hard to breathe. P was exhausted and starving (I would imagine from all the calories he was burning in an effort to just breathe). He was steps away from being placed in the PICU because when a baby works that hard to breathe, they eventually poop out. I was on my knees begging praying that God would help my baby boy. Around 6pm, his GI doctor came in to discuss his thoughts and the findings of the pharngogram (videofluoroscopic swallow study) - more to come on that Monday (March 8) after our follow-up appointment. I told him that P was going on 10.5 hours without having eaten and he agreed that it was too long but P's respiratory rate was still in the mid-60s. He said he would recommend an NG-tube (feeding tube). My friends came to visit - I enjoyed their company as they were my only visitors that day and they brought me a delicious birthday cake and a margarita daiquiri [oh the simple things in life]. While they were visiting, the nurses came in and placed Pierce's NG-tube (around 7pm). It was rather interesting to watch except for the fact that they were doing it to my sweet boy. Radiology came to our room, took a quick xray which confirmed that the feeding tube was just outside of his stomach - they inserted it further, re-took the xray and taped the tube to his face. They brought in the pump from which he receive a continuous drip of milk into his tiny belly and at 8pm they hung his first bag of food (11 hours of NPO... poor baby). From 8-10pm, he received 20cc per hour (approximately 2/3 ounce); from 10pm-12am, he received 25cc per hour; and from 12am on, he received 30cc (1 ounce) per hour. Between the continuous feeding drip and the IV fluid drip, P was saturating diapers and his pj's in two hours. I was up all night changing his diaper and clothing.

Wed 3/3 - my 27th birthday. P turned the corner in the wee morning hours. God heard all of the prayers (mine and our family & friends). Dr. K came in for morning rounds and she was seriously impressed with how quickly P turned the corner. His respiratory rate was in the steady 50s; she ordered the IV drip to be stopped (but they left the IV in his hand just in case) and the NG-tube to be removed! A short while later, the door opened and in walked my very sweet husband and B. He baked me a cake and took off of work to come visit for the morning [if you know Daddy, then you know that baking a cake and doing a surprise visit is not like him at all... he melted my heart and made me remember why I love him so much]. The nurse came in and removed his NG-tube. I took B down to the gift shop and bought him a new ball. They stayed a little longer but B wasn't feeling well (on Monday he had a 104.8 fever) so they left early than anticipated. I enjoyed being able to feed P again and he tolerated it very well. When Dr. K came for rounds again, after lunch, she kept remarking about how happy of a baby he was - of course, he was smiling and talking to her! She said that seeing his true personality made her realize exactly how poorly he was doing the day before; in addition, we would be there until Thursday morning because he had to be weaned off of the racemic epinephrine. This was the greatest birthday gift ever. The rest of the day was pretty uneventful in terms of P. Four of the nurses came into our room and sang me "Happy Birthday," brought me a pink and green balloon (my fav colors) and enjoyed the cake from Ambrosia with me. My mom came up later that night to visit. She brought me a lovely gift... a gold brooch with pearls that belonged to my sweet grammie. Overall, turning 27 wasn't too bad but it was definitely one of my more memorable birthdays!

Th 3/4 - Dr. K came in during morning rounds and said that we were being discharged!! We are to follow-up with his GI doctor and pediatrician. He is on Albuterol (neb) for the next five days and then as needed. We patiently waited on our chariot (my mom and B) and told our nurses good-bye [they were sad that we were leaving... us, not so much]. It felt wonderful to be outside of his room and the walls of a hospital (we were on droplet precaution and then contact isolation the entire time). I came home to a VERY clean house thanks to my mom and aunts! I had two very tired, sick little boys on my hands, but it didn't matter because we were at home. together. as a family.

happy to be home!

A very special thank you to the nurses, supporting staff and doctors at North Oaks Hospital and Our Lady of the Lake. And more importantly, to everyone that prayed for my sweet baby. thank you. from the bottom of my heart. thank you.