Saturday, June 5, 2010

Our newest addition

Dont get excited, our newest addition is not a baby, toddler or teenager. In fact it's not evening living. So what is it? Fist let me fill you in on the last week.

Malachi was released from the hospital on Monday. We took him back to the ER on Tuesday because he didn't want to eat for us and we were worried he was dehydrated (we are more cautious about this with him as dehydration can contribute to cells becoming sticky. Sticky blood cells and moyamoy don't go well together). The ER doc told us he was fine and sent us home. Wed. morning he was still not acting right and I was getting worried something more serious was going on. In the afternoon I told my husband to take him to the pediatrician.  Like always, she wanted him admitted. So back to the hospital we went. Blood work was done as well as chest x-rays and by bed time that night he was acting more normal. Blood work came back fine and his chest x-ray showed a little wetness in his lung. Nothing to worry about. They started him on breathing treatments every 4 hours. That night he required oxygen while he slept. Didn't think to much of it, little colds hit his weak lungs hard. The next day he was acting more like himself and was out in the hallways flirting with the ladies. Wed. night he needed oxygen while he slept again. This got us all wondering. Thursday the floor doc started looking into a sleep study for Malachi. She knew we had a very big weekend (there were/are 2 benefits for Malachi) and that we needed to get out of there if at all possible. Nothing got set up on thursday so she tried again for friday. Again nothing. So we were discharged with lots of medication (2 antibiotics, a steroid, an inhaler, nebulizer and new reflux meds) and an order to have a sleep study done on monday night. This is where our new addition comes in....we were sent home with a O2 monitor and an oxygen concentrator. Ugh. Malachi is on oxygen while he sleeps. Its a pain in the butt. We were up all night listening to alarms. He doesn't like those prongs in his nose and I cant blame him, but for all of us, PLEASE LEAVE THE BLASTED THING IN YOUR NOSE!!! We are looking forward to getting some answers soon!

Some exciting news....we got our surgical conformation letter in the mail today. It is 100% official. Surgery is going to be in Boston on June 29. We are so looking forward to getting it done and over with.

We had a wonderful day today at the benefit for Malachi. I will write more on it tomorrow!!


Cammie Heflin said...

I can so relate! When Addy first came home at 9 months her alarms went off constantly! She was on O2 all day though so night wasn't such an adjustment. We cut the prongs off of her cannulas because she would pull them out. We used Tender Grips for her face, however, they would stay on a few days, reapplying them during sleep would be so hard on the skin! I hope he feels better soon!

Alan Anderson said...

I was going to say the same thing - Cut the prongs off the cannula. Carter is still on oxygen but we are now trying an oxygen tent at the suggestion of the pulmonologist because he won't keep the oxygen in his nose and we can't use tape as it bothers his skin. I know it is not fun!

Kristin said...

I wish I'd thought of cutting the prongs off. Oxygen is hard enough with infants, but once they're big enough to use their hands, it's a complete nightmare. I never found anything to work well. Max just pulled his off time after time. Good luck. It did help to wait until he was asleep.

Emily said...

Good luck with everything!