Sunday, June 5, 2011

Saturday (and Sunday).

If you're on facebook with me then you may have noticed that yesterday was a bit stressful in our room of the hospital. It started with a minor little bleeding nose and turned into a scary day. Wyatt's blood counts have been lower than low. Typically all of his blood counts trend low (white count, plateletts, hemoglobin, red blood cells, etc.) but his body is now working overtime while fighting the infection, his organs aren't functioning properly and need a little help.

Yesterday we woke up to Wyatt's g-tube drainage (stomach) draining brown...old blood. We were unsure where it was coming from and suspected his clotting factors were off, as we've seen this in the past. Though, this was a lot more blood than we're used to seeing. He then asked to be carried to the potty (he can sit on it, but not able to walk just yet.) As he was in the bathroom his nose began flowing freely of blood. I truly have not seen anything like it. It was soaking numerous wash cloths, we were pinching his nose with a cloth and blood kept flowing around our attempt of blocking it. He then began vomitting large amounts of thick, red blood. Screaming in between the retching that his belly hurt so bad. And this nose bleed turned into an event unlike anything we've ever witnessed before...his heart rate soared sky high, his blood pressure low, his eyes rolling upward. Doctors and nurses surrounding him trying to figure out what to do. A lot of the emergency supplies that they needed were not carried on the floor that we are on, they aren't equipped for such a situation, but they had running the ER and PICU. To add to the pressure of the situation the resident doctors that were in our room trying to help our son and working for the weekend shift have never met Wyatt and didn't know his history at all. They were talking over ideas and trying to make plans and I would interject and tell them the answer before they could look it up on their computerized charts (what meds they were not to use due to adverse reactions, what antibiotics he was on, history, etc). At one point in time one of the residents asked if he had an IV. I quickly butted in again because I could see the unknowing look on the other residents face who she was asking the question to, "He has a central line. He's here for a line infection." Her response "Oh."

Bryan and I were ushered out of the way (but I was certainly not leaving the room) as the doctors and nurses gowned each other up, our son covered and a nurse holding a large basin under his chin nearly completely full of the blood from his GI tract, his nose being pinched with a blood soaked rag, he was screaming in pain and fear. They began ordering more Morphine and Versed. In his drug induced state they wrapped him in a blanket tightly and began pushing 'packing' supplies up his nose in an attempt to control the bleeding in that area. A nurse straddling our boys body on top of the bed, two doctors on one side of the bed, a nurse paging doctors for assistance, another administering meds and the two most experienced nurses on the floor on the other side of the bed assisting the doctors. He continued to cough and vomit mouth fulls of blood. As the bleeding began to slow from his nose, blood continued to flow quickly from both his G and J tubes, filling the 500ml bags collecting the fluids. As the doctors left the room to check his labs that were drawn just before the chaos began (and I imagine take a deep breath), the nurse helped me to clean up our floppy, druggy boy. Before the doctors left the room they instructed that he try to stay in a sitting position to avoid the blood going the wrong way and ending up in his lungs. Trying to keep a floppy, half sedated child upright is a bit tricky. He had pillows stuffed all around him and a neck pillow holding his head up off his chest. He then muttered in his groggy state "this is the worst day ever." Indeed, it was a pretty bad start to our day.

They ordered platelets and red blood cells to be infused as soon as possible and we were then to watch the blood continue to drain out of his body via his GI tract. Hoping that what we were seeing was just a result from the intense nose bleed that caused our boy such a critical state, but not confident. The blood drained out consistently through the day and come evening he once again vomited another very large volume of blood. Though this time it was also containing large clots, signaling that his body was kicking into gear a bit and we were hopefully nearing an end to the bleeding. Throughout the evening we began seeing less blood coming from the J-tube and by this morning brown old blood flowing through the G-tube once again. We came full circle. The bleeding has seemed to stop in the nose (they just removed the packing) and if there was a GI bleed (a good possibility) it has also ceased. His blood counts are "ok", not too great but better than yesterday.

There was talk of portal hypertension (spleen is enlarged, along with everything else in his abdomen), bone marrow problems and more talk about trying to get the approval to start Omegaven. I'm still trying to process all that has happened and has been said. Today he will be getting the video EEG that was talked of (and postponed yesterday due to his more critical matters that took priority) and if he begins to bleed he will head to the OR to find and "fix it", as the doctor said. He continues to require morphine for pain and his cultures are still positive for infection. His temperature has been up and down, responding to medication to lower it. TPN has been re-configured and tweaked. J-tube meds have been decreased to avoid vomiting for the time being. His heart rate has come lower since receiving the blood and plateletts (which is good), it's not his normal but it's a step closer.

Today he's looking a bit better, interacting and even giggling at the TV shows that he's watching (when the morphine is in his system). We're viewing that as a step in the right direction. He promised the doctor that there would be no funny business today...time will tell.
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  1. I have just started following your blog recently and I wanted to let you know that I am praying for Wyatt.
    Just a regular nose bleed is scary enough for a young child. He is a very brave young man! I hope to get to know each other more through blogging!

  2. Sending so many prayers to y''re in my thoughts and prayers!

  3. Praying for your family! I am so sorry he is so sick right now. I hope they can get this infection under control soon and he will start feeling better.

  4. Wow, I can picture such a horribly scary scene. We just got over an awful septic event and just reading about your sweet strong boy, it brings tears to my eyes. I am so sorry and really hope today and tomorrow bring about a lot of healing. Im sure that day will haunt your thoughts and I will be praying that they will be erased from your memory as much as possible. Also I will be praying for a speedy and full recovery!!!