William was still having some breathing issues, requiring more oxygen, high heart rate and just was not himself. After trying to manage his issues at home since Friday 11-12-10. I started a lung steroid boost on Friday afternoon. On Saturday 11-13 He did well all day, and I was even able to ween him down on his oxygen from 1 LPM to 0.5 LPM. Friday night, overnight, was tough. William wheezed and tried to cough all night. Overnight Saturday night we also had a rough time and I had to go back to 1 LPM on his O2. Sunday AM on 11-14 he had improved and I was able to ween him back down to 0.5 LPM. I just didn't feel like he was improving overall. From our two previous nights, I discovered that William seemed to get into trouble in the evening/night. I was afraid for Sunday overnight at home. I paged William's pulmonologist, Dr. Drewek. Her and I thought it was a good idea to take him to the ED to get checked out by a doctor. When we arrived to the ED, IV team came and started a line for IV fluids and labs. When the labs returned, it showed that William's CO2 levels were high indicating that he is retaining CO2. The ED team thought WIlliam really needed to go to the Pediatric Intensive Care Unit. They explained to me that one way to level out the CO2 is by putting him on the ventilator. He has pulmonary hypertension, among a long medical history. We felt it was best to go to the PICU. PCH PICU has an amazing team. When we got settled into the PICU and the PICU team evaluated William and his history. They explained to me that kiddos on chronic O2, as William is can retain CO2. They had respiratory draw blood gases throughout the night. All of his RSV labs have come back negative so far, so no pin pointed virus. They got William all settled in by 7:30 PM and there was no plan to Ventilate William, just a plan to keep him quiet and calm for observation. SO I was able to go home and I got 8 hours of sleep! I feel like a new woman! When I returned to the PICU early this AM 11-15, William was sill sleeping and doing well. His night burse who I really loved, Joslin, gave him a bath and put some pajamas on him that I had brought along. Joslin cared for William back in June and she said he was so much bigger! William is also quite the ladies man, and with all these pretty ladies working here at PCH, William is really able to work his charm. Each and every one of the staff always tells me what a cutie William is and that he is their absolute favorite. He is always so happy, and never fussy. I am sure it's nice for a change, because most patients are sick, unhappy, miserable, in pain, afraid of the medical staff etc. NUT not William, he loves his entire medical team. There are a few people taht have been involved in William's care that have not been my favorite- But I still respect them all the same, they care for my child and I couldn't ask for better care. SO this morning, William is resting and doing well, but we are waiting for his stool studies to come in and trying to figure out why he is working so hard to breath, therefore requiring more O2 than normal. The doctors are rounding, and should get to us momentarily. I will post an update later!!
ALSO, Richie and I manage our current situation very well, yet it is very much a hardship on us. Dealing with all of William's medical issues, & caring for Isabell while Richie is working in California and providing the very best for all of us is not easy. I know that Richie wishes he could be here more, but I am so proud of him for all the support he offers and all he does for this little family of his. He is really the best father and husband, and is such a great family man. We are so thankful that he has the job he has. He is became a Forman for his company a few months ago, and with that position took on alot more responsibilities at work. We knew this when he accepted the position and we felt it was a great honor that the company offered him this position and took advantage of that.
We have decided that he will only come home if things are not looking real good for William when we are in and out of the hospital. Otherwise he is home almost every weekend-BUT they have been working the past few weekends to meet some deadlines on the LA LiteRail. He will be home over Thanksgiving, and we are so excited to see him. Tomorrow is his birthday, and I want to wish him a Very Happy Happy Birthday, we have so much to be happy about and thankful for.
TTFN! (Ta ta for now!)
Crystal
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