Thursday, March 25, 2010
Yesterday as I was leaving DHMC with Kayla (she had another flare up with her JRA) I got a phone call from the PICU. They were calling to tell me that Ben's latest cultures drawn Sunday after he spiked a fever came back growing MRSA in his lungs and Psuedomonas in his urine. They wanted him started on IV and oral antibiotics for both. I spent the whole 90 minute drive home trying to organize and get things moving. It was a long day made even longer. Nothing was able to happen that day because of the timing. That was a little frustrating. Today the meds showed up at 2pm and the nurse came soon after. She showed me how to use the pump - which I already knew - and when I went to flush his lines...nothing. She tried. Nothing. I called Dr. Filiano in the PICU and he said to give him ANP through his line. So I then called the doctor's office to have them order it for me and the nurse flat out said she wasn't comfortable dealing with me and needed to find someone who was. Really?!? That was wierd. 30 minutes later a resident dr. called me back and told me the ANP had been ordered. We eventually got one of the lines to flush, although it was really hard and then started the antibiotic through that line. The second one needs the ANP. The IV company nurse called me a few hours later to tell me that she was coming around 10pm. THEN the ANP has to stay in Ben's line for atleast two hours. That means I'll be up until after midnight. WAY past my bedtime. (sigh) I am supposed to be leaving tomorrow for Virginia for a girl's weekend. It's hard to leave when things aren't going the way they need to. I like order and right now I'm feeling chaos. Hopefully tomorrow things will run much smoother and I can leave knowing that things will be okay.
Monday, March 22, 2010
I wanted to post some of the pictures I got with my camera phone. Most of these were taken the day he went for his PICC. Today he spiked another fever. The nurse collected all kinds of cultures again. He's still on his Vancomycin until we find out all the sensitivities to the strep pneumo bug he's growing. Tonight he had a huge coughing fit and became down on his left side which resulted in some oxygen need for awhile but he's back on room air. I'm heading to bed anticipating a departure time sometime tomorrow. Please continue to pray for sweet Gabe, he's still so very critical and somewhat unstable. Another frequent PICU friend was admitted today with pneumonia. Please pray that Riley Roo can fight this pneumonia quickly so that she can return home to her family as well. If you ever need a dose of perspective...spend a day with some of these kids. Helps you to not sweat the small stuff because it's BIG stuff going on up here. Remember that life is good.
Saturday, March 20, 2010
I love Ben's baby legs. The nurses get a kick out of them too. Look how skinny those legs are. Cute Ben. Today they added a second antibiotic for double coverage until his sensitivities come back. His x-ray from yesterday looked just a smidge better than the first day so the rate on the vent seems to help keep his lung a little more open. Because he has his PICC line in and he's stable, we are thinking Monday might be the day to go home. :) This would make our shortest PICU stay in over two years. Hurray for that. Makes me so thankful to walk out of this place once again as I know some are not as fortunate. Two doors down lies a little 1yr. old down syndrom boy named Gabe. He was just diagnosed with Leukemia. He already has pulmonary hypotension and is vent dependent. After his third round of chemo he became really, really sick. Wednesday I visited him as he played with a little toy. Even as sick as he was...he was his happy, amazing self. He was working so hard to breathe despite the pneumonia growing in his body. The vent wasn't enough to support his efforts and so they now have him sedated, on an oscillator vent, he's got 13 pumps surrounding his little bed for sedation, antibiotics, TPN, blood pressure meds and fluid. Because he has no immune system his body's temp continues to hover around 105. They now have him on a cooling blanket because his body isn't absorbing the tyelnol anymore. Please pray that his little body will start to make the white blood cells that he so desperately needs and that his body can start to fight the infection raging within. Life is so fragile.
Thursday, March 18, 2010
Ben had a quiet night aside from some apnea. They gave him a rate to fix that problem. (meaning they set the vent to give him so many breaths per minute) The doctor's feel that by giving him a rate day and night it will not only help the apnea but also help to keep his lungs more expanded. They will get a repeat x-ray in the morning to see if it worked. His blood culture came back positive and so he was started on Vancomycin. His nurse Amy put in a more stable IV so that it will last until he gets his PICC line tomorrow. This PICC will stay in for as long as it lasts, they have decided not to pull it when he goes home. He did have a reaction to the Vancomycin...turned him into a tomato. (a cute tomato) They will increase his benedryl dose before hand and slow the rate of the Vancomycin down. He's been fever free since his initial 103 and has had a relatively low key day.
Wednesday, March 17, 2010
Saturday, March 13, 2010
So yesterday I took my sidekick to Dartmouth to see his PCP. We went down to get an x-ray first so that we could see how his left lung is doing. Those radiologists know us well. We're on a first name basis down there. Now that Ben is on his vent all the time, it takes a little longer to get things done. When we rolled into x-ray...they had to wait for me to take him off the vent, unhook his pulse oximeter, take his jacket off, unbuckle his seat strap and over the head restraint and then finally lift him onto the table. The three of them just stand there and watch, always offering to help, but knowing that I have my system down and it's just easier for me to do it all. When he's all set on the table, I throw on my protection and hold him still for the x-ray. After we're all done, I load him back into his chair, put his jacket on, buckle him up, hook him back up to his vent, turn his pulse oximeter back on and out the door we go. As I was walking down the hall, one of the tech's leaned over and quietly said..."He's lucky to have you". I just smiled while in my head I thought..."No, I am lucky to have HIM". And then off we went. His left lung is still significantly collapsed. That was discouraging, but not surprising considering his numbers at home and the fact that he hardly has any breath sounds on his left side. Ben's PCP will consult AGAIN with the pulmonologist to see what they can come up with to try and pop that lung open and KEEP it open. Right now with it being so collapsed, it's a pneumonia waiting to happen. While we were at Dartmouth we attended a memorial service for a little girl that died in the PICU a few weeks back. Made for a long, emotionally tough day. Another reminder that life is fragile.
Wednesday, March 10, 2010
Tuesday, March 9, 2010
Ben's been on my mind...a LOT. He usually is. In less than a month, he'll be turning 8. That's a HUGE milestone. I also saw that his birthday falls on Easter this year. It makes it that much more special. I'm really excited to celebrate his special day. I would LOVE to throw him a big party but Ben's kind of a party pooper. (so we'll keep it small and cozy) He's really doing well with his vent settings. I've been slowly weaning him back down from his latest hospital stay. That doesn't mean he'll be coming off the vent, it just means that hopefully he'll be back down to some low vent settings. I still take him off to hold him every day. I love to snuggle his cute (but growing) body. I was holding him in the kitchen the other day and Steve took a picture to show just how large he is getting. I can't stand for more than a few minutes with him anymore because he's just too heavy for my back but I'm grateful that I can still lift and carry him.
Monday, March 1, 2010
Still trying to figure out the whole sleep issue with Ben. He seems to be doing much better since coming home from the hospital on Terazadone WITH Melatonin. The combination seems to work. We still have days where he will sleep for almost 24 hours and then NOT sleep for another 24 hour period. But mostly things are good. Ben had blood work drawn every couple of days to check his sodium and potassium levels since they were both running low while inpatient. After 4 draws and all normal results, they are putting an end to finger sticks. Hooray for that. I'm still worried that his pneumonia isn't quite clearing up. He still has some really thick and colored secretions and his saturations have been running low. He's still needing quite a bit of vent support as well. I take him off for one small period every day just so I can hold him without all of his tubes and wires. I noticed last night when I did this that his nose was flaring with each breath. That tells me that he struggles now without his vent. Makes me sad. I miss having my boy unconnected all the time. I miss the freedom to pick him up and go. But I'm so grateful that he's still here with us, tubes...wires...and all.
(I'm not very quick on my feet when it comes to capturing Ben's smile. This was a lame attempt because the best part of his smile was already gone. You can kind of see a glimpse of the fading smile here though. I was moving him from his bed to downstairs...I'm thinking he was happy to be in my arms and off the vent for a few minutes.)