We finally left UW at about 5pm Friday. We had agreed to stay to meet with a lung dr. about Hayden’s breathing issues. He suspects Hayden’s breathing could be leading to asthma related issues steming back from either premature birth or resulting from the Chemo or Morphine. Nothing is really proven, but either way, we will be addressing it with two different inhalers. One is very similar to his Albuteral Neb treatments but takes 3 seconds to give, start to finish. The second one keeps his airway open, reduces the inflamation. It seems to be working well.

We are going to have to stay yet another night to make sure all viral results come back negative. So far we had 2 of the tests come back negative. Other parts of the test aren’t done yet.

Hayden has responded well to the 4 hour neb treatments and continuous drip fluid. We still are hearing crackling in his breathes and a lot of mucus stuck in his little nose.

We have a nice view and Hayden is doing well and loving the “nurse” attention, so I handle another night!

Hayden is going on about 7 weeks with this cold that isn’t getting better. Tuesday’s Day Treatment evaluation showed him working hard to breath. Dr. DeSantes had Hayden admitted  right away and ordered chest x-rays and a virul swab test to be done asap. We were upstairs without receiving IVIG an hour later. They didn’t want to give him a $18,000 treatment if it wouldn’t be effective if he has Pnemonia. We later found the chest x-rays to show no Phenomia and he got the IVIG later that night.

Rick brought clothes for Hayden and I for the night, since we couldn’t leave. Every 4 hours Hayden receives a Nebulizer treatment, on going fluids and continuous pulse-ox to monitor his oxygen intake. He is doing really well and has shown improvement in his breathing since the repeated nebs.

I had his walker with me for day treatment so he has the ability to tool around just as long as his lines follow after him. He gets a kick out of throwing things behind the couch and watches for the helicopter to pass our room through the window. We should be released from the hospital by Thursday if all keeps going well. As usual the swab test results won’t be back until prob. Friday so he continues to be in isolation for virus and BMT issues.

wbc 8.8
ANC 6600
platelets 182k
BUN 21 (was at 28)

Hayden is your tipical 1 year old busting into cupboards, crashing my pots and pans, helping unload the dishwasher and exploring new areas of the house each day.
Dr. DeSantes continues to be happy with his progress. His red rashing has decreased some to allow us to reduce the predisolone to 1ml! This is great news, with his cold still lingering the steroids aren’t helping it. Tuesday, the nurse explained that the steroid is suppressing his immune system, and the IVIG is trying to boost his immune system so the faster we get rid of the steriod and let the IVIG do its job, the faster Hayden will fight the cold.

So we continue to do nebulizer treatments twice a day (he really sits well cause we read to him, Abby picks out the books each time), 6 medications by mouth, and 250 ml of fluid each day, which means 4 hours of being hooked up to a line attached to a pole which we carry around the house as he crawls or rolls around in his walker. We do notice that Hayden sleeps better with the fluids and nebs and his breathing is more normal.

wbc 10.
rbc 3.8
neutrophyl 7580
platelets 183k
creatinine **.5
BUN 28

Hayden is doing well, still fighting with his cold. BMT doctor is still concerned about his cold. He is hearing a bit of a crackle as he breathes but an albuderal treatment on the nebulizer seems to take it away. Orders are to neb him twice a day, plus his BUN level came back abnormal which is his kidneys not being happy with the amount of fluid passing through them. He is now to have 4 hours a day of fluids pumped into him. We have lucked out cause lots of kids are sent home from the BMT transplant being on fluids and even meds. We have had none of it till now. Home Health nurse came today to set up the gravity drip bag and pole. Now to just keep him in one place for a long period of time. Grandma tried giving it to him while he napped and he rolled over on his line which must have waked him up. So he ended up jumping in his Johny Jumper for a long time connected to his line.

So after eating almost a whole hotdog, mac and cheese and 6oz of formula (still can’t be on milk) the kids took a bath, Hayden got his neb, meds, another 6 oz and went to bed at 7:45. Last night he slept real sound from the neb treatment, hopefully tonight is a good one too.