PTSD

I know it's been too long since we posted anything to the blog. I am not sure where the days have gone, honestly. The days have seemed so slow yet go by so quickly.

Post-traumatic stress disorder. Keane certainly has PTSD. How do we know? First, he had stranger danger - with Grammy and Poppy! He has now made it past his stranger danger. Second, until yesterday, he really could not be put down - at all, at any time of the day or night. Who knew the kid could cry so intensely? Third, he doesn't like to have his chest exposed, as noted by his terrified screams, although this too is improving. Lastly, my lovely man who slept as well as Avery, seems to have night terrors or at least night anxiety leading to lack of sleep and an inability to be put flat in his crib. Luckily, Grammy bought Keane some sort of sleeping contraption made for kiddos with acid reflux, which has improved the interim sleep between waking episodes.

We are headed back to Eugene today - yeah! Keane is having his stitches out at Dr. Bob's. Great - we were just getting beyond the PTSD related to his chest! Hopefully it wont be too traumatic. Looking forward to having him in his crib at home, as Mom is not sure she can survive less sleep at this point. Maybe his own crib will reset his sleep patterns a little. On a positive note, Keane took his first good nap yesterday and was a very happy boy as a result. He seems in quite good spirits during daylight hours!

Decompressing - sort of

We had our first night's sleep at Grammy's and Poppy's last night. Keane is not a big fan of his medicine, however, we are quickly weaning off meds. He hasn't had any narcotics for pain relief since last night at 11p. He seems to have great pain control on Tylenol. He will take Viagra for the next few months, but likely be off of Tylenol and Lasix within the next five days. Hooray!

The whole family is decompressing a little from the last six days of high stress and anxiety...

Yes, discharge today

We will be discharged today. We are in the waiting period for discharge orders and instructions. Keane is doing well today, although he is a little over tired from all of the interrupted sleep!

Wednesday morning status

Yesterday lent itself to all sorts of positive outcomes on our heart surgery journey. However, one not so positive outcome also presented: Keane does, in fact, have pulmonary hypertension. His right ventricle is not used to doing the work required to pump blood non-oxygenated blood through his lungs to be oxygenated. When he had only one chamber, the left ventricle was much more active in the pumping process. We have come to understand that about 75% or greater of kids with DS have pulmonary hypertension. The treatment is essential and potentially life saving, but simple: three doses of Viagra every day.

The plan as of this morning is to "'likely" be discharged today. We will head to Grammy's and Poppy's house then return to the Children's Hospital on Friday for a wound check, stay in Portland through the beginning of next week, then head to Eugene for a check in with Dr. Bob one week after discharge. We will need to come back to Portland the first week of September for a follow-up with Dr. Kelly.

Meanwhile, back at the ranch, Avery Grace is getting ready to go to big kid school at O'Hara Catholic after Labor Day. Aunt Mal and Grammy picked up a few more uniform items yesterday, so she's all ready to get through the first couple weeks.... looking quite fashionable.

Out and about (yesterday afternoon)

Practically live... echo still in progress

Keane is currently getting his post-op echo. He's still pretty drugged from his morphine bolus prior to chest tube removal. We were playing Pandora in the background, completely randomly, and listen to the song that came on the radio....! Hmmm, after further review, the radio seems inaudible, so I will just tell you that it was his theme song :)

No tubes, home tomorrow maybe, is this a joke?

Apparently, if all goes well tonight, we may go home tomorrow - to Grammy's and Poppy's house in Portland. Yes, we were wondering if this was a joke.... echo this afternoon to confirm repair is holding and no leaks are present. All tubes are out. He's not even wearing a heart monitor, only a blood oxygen saturation monitor (pulse - ox). Here he is drugged up on morphine for his tube and pacemaker wire removal...!

See....

Couple steps back - one giant leap forward

Last night was a little challenging. Keane ate a little too much breastfeeding then gagged on his oral Tylenol, resulting in projectile vomiting. I am pretty sure he will never take oral Tylenol again. After two back to back episodes of illness, we did some smaller feeds overnight. He also was sweating profusely, soaking through sheets and clothes. The sweat was most likely a result of his increased doses of diuretics.

Keane slept pretty well overnight, no whimpering or fussing. I wouldn't say he woke up happy, but he didn't wake up sad. He wasn't offering any typical morning smiles; however, he did play with some of his toys and grad Dad's face a bunch.

He is currently on ROOM air! I know, what a crazy improvement in such a short period of time. His oxygen was weaned off last night and he went on to room air this morning at about 800a. He was initially reading about 95% on room air and now is at 99%. If he maintains, he will be able to have his nasal cannula removed today, which will make a big difference in his nursing. Finally, his chest tube output was really low last night, so crossing our fingers he can have his chest tube removed also....

FYI - since we are on the floor, we now have cell service....

Very busy day

It has been very busy since our last post - no time to be on the computer today! Last night was pretty rough. Mom was up with Keane until 330a, then slept from 330a until 445a, then called Dad in from Grammy's and Poppy's house for relief. Keane's vital signs were mostly strong and stable, but he was having some pain control issues and reacting to being overall more aware of his situation. However, great things happened mid-morning:

• Central line removed from his neck
• Left chest tube removed (only right side left)
• Breast-fed with Mom
• Finally went "#2" 
• More alert overall AND
• .... left the ICU! 

We are now on the floor - 9 South. Moments ago, he had his feeding tube removed. He is on a limited flow of oxygen, hoping to transition to room air tomorrow-ish. If this keeps up, we could be discharged by the end of the week!

Last chest tube may come out tomorrow...