Spring is here! What a winter, but we survived. Looking forward to more sun and healthier lives.

August continues to do well. He’s been happy and laughing, arms flapping.  It is Spring Break here and Janet is dealing with two kids all this week. Porter has had some play dates which helps to break up the day.

I’m going to try and post some recent photos today.

-Johnny

August came home Friday night, three weeks after we took him to the ER.  They wanted to keep him one more night, but I was able to make a case for bringing him home.  He is still not feeling well–still withdrawing from meds and is on a pretty strong antibiotic that causes nausea, etc.  We are so happy to have him home and we are all in the same place again.  He goes back on Monday to see his pediatrician and on Tuesday for physical therapy and we see the OT at home on Thursday.  A swallow study is scheduled for Wednesday, but that is just too much for his first week out of the hospital.

I think he will feel better once he is off the antibiotics and a few more days working on getting all the drugs out of his system.  We are giving him something at night to sleep, though it is not working that well.  He doesn’t sleep much, whines or cries most of the time, is drooling like crazy and is easily startled and upset.  If we sneeze or cough when we are holding him, he looks at us, sticks out that bottom lip and just starts wailing.  Hopefully these sensory issues and hyper sensitivity to stimulation will ease as the days go by.

Thank you all for your thoughts, prayers, meals, playdates and sleep-overs with Porter.  Thanks for your phone calls, visits, chocolate cakes, balloons, get well cards.  And a huge thanks to the docs and nurses and child life staff at Emanuel Hospital.  You did it again.

love, Love, LOVE to you all.

August continues to recover in the hospital. We have been here for 20 days. Unfortunately, he has contracted some bacteria and we are giving him an antibiotic. This sets us back a couple of days but we are hoping to go home this weekend.

He probably got the e-coli bacteria through his main intravenous site, which has since been taken out. This probably could have been prevented if it had been out sooner. We are NOT considering suing the hospital but Janet vented her anger at the attending resident physician.

August was just transferred from ICU to the regular peds floor–room 3636 for any local visitors.  He has been saturating well and tolerating his feeds as well as the methadone and adnovan for his withdrawal.  He is coughing well on his own and is very, very squirmy.  Just like at home, he rolls off the pad or has his feet sticking out of the side of the crib.  His favorite thing to play with and chew on?  Stuffed animals?  No.  The baby mobile from the hospital?  No.  The singing glowworm?  Nada.  He spends alot of time pulling, chewing and licking his lines that monitor his heartrate, oxygen saturation, respiration and his IV and feed tubes.  he spent most of the morning loving on his blood pressure cuff.  He is totally into it.  Need some gift ideas for August?  Just send out some cords and medical supplies.

I believe we will try oral feeds through his bottle tomorrow.  He will also receive his therapies (OT, PT, speech and feeding clinic) in-patient.

Things are looking up.  We even have a bed in his new room, and a window with a view of a brick wall.

Be well, y’all.

August had his breathing tube removed yesterday and is doing well. He is breathing room air without aid and we are able to hold him. Yeh!

It was a little stressful after they took the tube out. His breathing was very labored and he had a lot of secretions out of his mouth and nose. The doctors did a lot a things to get him stabilized so they wouldn’t have to put the tube back in. His CO2 levels were also a bit high, which would have meant going back on the respirator is it didn’t improve.

He went through a lot to get him stabilized. They sucked lots of stuff out of his nose and the back of his throat, he threw up lots of bile, was given stimulants to wake him up, and withdrawal medicine to stop his body from reacting to the pain killers. It was a little hard to watch the instant withdrawal which caused him to shake and fidget.

It is great to see him now without the tubes and not as fidgety. No smiles yet but maybe when he is moved to the main floor of the hospital, which could be today or tomorrow.

-Johnny

Today is a better day and a harder day.  They are weaning his settings down and letting him breathe on his own a bit.  They are weaning him off his sedatives, which makes him awake and agitated and teary.  He is sad and mad and hurting and we can’t hold him until they take his breathing tube out.  That could be TODAY though I don’t want to get my hopes up again and be disappointed.  It could be tomorrow.  Like a drug addict, they wean him off narcotics by using methadone.  He is squirming around in his bed like crazy.  Once the tube comes out we can also remove his wrist restraints and he will be able to bring his hands up to his mouth and face. 

For now we must keep watching and waiting.

I miss holding my little Smooch.  I am helping the nurse and tech staff as much as possible so I am getting to touch him more and I help lift him up to move and change him.  When he is not so heavily sedated he is opening his eyes and noticing me and staying calm when he sees me.  He likes to be sung to.  When I came in this morning.  Johnny and the nurse had a blanket over his face just the way he likes it. 

Had a surprise visit from my brother-in-law Bill this morning.  It was so nice to see family come walking in.  He was in town for a few hours for work and stopped by the hospital before he had to catch his plane back to Denver. 

So things are just kind of the same again today.  Same ventilator.  Same settings.  Same course of action–we wait for him to cough and then suction out the goo.  Wait for him to settle down again and then wait some more.  He is in good hands.  The staff is attentive and nurturing and they listen to us as parents.  It feels really good to be heard and listened to as the experts on August right now.  So many things feel out of our control, but it is nice to be asked questions and our opinion and if we feel okay giving him certain medicines.  They even let us bring in his probiotics to give him after the round of potent antibiotics he was on. 

His lungs just aren’t clearing up as quickly as we hoped or assumed they would.  They may increase his diuretic med today to help move out the fluid.  CO2 and hematocrit (or ‘crit as we say in “the unit”) levels are better. 

Thank you all for continuing to pray for August and hold him in your hearts and thoughts. 

August had a blood tranfusion last night with Janet’s blood. That seems to have helped him. They tried to move him to a different ventilator yesterday but he was not able to adequately breath on his own so they moved him back. The current ventilator is also able to remove particulates (goop) from his lungs.

 -Johnny

The nurse and respitory technician are changing August’s venitillator right now.  I hope it works. Today is just a crappy day.  It’s raining outside and things have been progressing slowing inside room two.  I know this.  I know August is pokey to do anything, but I got stuck on the plan to switch him over to this ventillator today and extubate tomorrow.  When I arrived this morning, the first thing I learned was that they were going to wait to switch ventillators until tomorrow or Monday and then extubate in the middle of next week.  I am feeling antsy, and angry and I just want to get him home.

Today is day nine.  They are still able to hold off on his blood transfusion, though the blood I donated on Monday is ready any time he needs it.  His hematocrit level is holding at 27 and they are pulling less blood less frequently.  I am glad our types are compatible though.  He is struggling.  He squirms and wiggles and coughs and his face turns red.  I comfort him as much as I can.  Though it breaks my heart when he fights it so much and grimaces and little tears trickle down his face.  Ugh. 

August’s roommate Kristina will be going home today or tomorrow. Happy for them, but it just feels like one more stab in my heart.   

Johnny’s brother Danny arrived in Portland last night from Baltimore.  He and Johnny are out in the real world buying lumber to build some raised beds for the vegetable garden. 

-Janet