Last week, our pediatrician noticed Lucas looked pale & his heart rate was elevated. So we ran a hemoglobin test to measure Lucas’s red blood count. The results came back as 7.8 which is very low for a 6 week old baby. On Friday, our pediatrician highly recommended we get a blood transfusion. After much consideration & prayer we decide to accept the recommendation and proceeded to Phoenix Children’s Hospital. The transfusion was a success and his hemoglobin increased to 12.5 which was awesome!
Unfortunately, on Saturday, Lucas started to have more desats during feeds which means his percent of oxygen drops below 88. So the doctors decided to put in a feeding tube until they figured out the issue. Then, Lucas randomly started to desat for no reason at anytime. On Monday evening, he started to get blood in his stool. An x-ray showed the feeding tube, which was suppose to be placed into the stomach by a “specialist” had migrated into his intestine’s because the “specialist” (aka the person who made a major mistake & harmed Lucas) left too much slack in the line. Next, the doctors halted all food for 24 hours and pulled the feeding tube back up into his stomach. At this point, we started to feel like we were living in a nightmare! We could not believe how many steps backwards we were going. As of today, the doctors believe Lucas is allergic to milk/soy and when the feeding tube migrated into the intestine’s it caused an irritation and/or abrasion that caused Lucas to bleed. So we changed to an elemental formula which is thickened and slowly restarted feeds. As of right now, we are up to 40mls every 3 hours and will increase the amount by 10ml every 6 hours until we hit a total of 60mls. We even have a speech therapist helping us learn how to feed Lucas in the safest way to avoid a desat. Please keep us in your prayers that Lucas starts to master the art of sucking, swallowing, and breathing while feeding. Most importantly, we need the blood to cease.
I must admit, this stay at Phoenix Children’s Hospital seems much more worrisome & stressful than our time at St. Joseph’s Hospital. We came in thinking Lucas would be in for a blood transfusion and out within 12 hours. Instead, he snowballed into a complete mess. Many more tears have been shed during this stay. Praying to start to have confidence in PCH.