Back at Baystate

Last night, Eve woke up retching and gagging on mucous. She was doing it every few minutes and I wasn't comfortable leaving her side. It was pretty scary. She just couldn't seem to keep her airway clear. The triage nurse sent us to the ER. I know it would have been better to go to Baystate, but I couldn't drive her there by myself. She would have needed someone by her side to keep her head down to drain excess saliva etc.  So, we went to the local ER. The tested her for flu (negative), did a chest X-ray, checked her oxygen levels (fine). They also tried some suctioning, but it didn't really help and they were afraid to aggravate the airway.  So, they sent us to Baystate via ambulance. We arrived around 3am and settled in to sleep around 4.

Eve has been doing much better since we've arrived. One of the docs witnessed a retching episode and said that while it is scary, she's doing fine. So, the plan is to send us home today after the pulmonary nurses teach me how to suction her. They will order us some suctioning equipment as well.

Eve's neurologist also stopped by (I love that doctor). He said she looks chubby. :) He told me not to worry about her choking to death on the mucous. He said we would worry if she was not able to gag/retch. Aspiration would be much worse. That's comforting because it so scary when she retches. It's nice to frame that as a good thing.

So, now we wait for her to get over this cold. I'm going back to having a hospital bag packed at all times. I got too comfortable and unpacked that bag about a month ago. Can't wait to get home so we can both rest (and I can get clean).

Strong man Seamus

Seamus has been so funny lately.  When I put him in the van, he runs over to the closed ramp and pushes against it while making straining noises.  I've started calling that his "strong man".  He was doing it at dinner last night and I was able to capture it on video.  It's been hard to take video or pictures of him lately because he always wants to see the image I'm capturing.  So I have to convince him to stay in front of the camera. 

Eve has a (sort of) cough

Eve has a cold and it seems to have settled in her chest.  Because she doesn't have the muscle strength, she really can't cough to clear the phlegm. She weakly coughs with what sounds like a fake cough.  Only it sounds really really junky.  It's actually maddening, because you know that a healthy person could just give a quick forceful cough and clear out the junk.  I just want to be able to cough for her. 

Anyhow, I took her to the doctor yesterday morning to have her looked at/listened to.  The Dr said that there is definitely "stuff" in her lungs and that one sounds worse than the other.  She put Eve on Amoxicillin and said she should be feeling better in 2 days.  I was able to get both doses in her yesterday, so hopefully tomorrow will be better.  She has no fever and is pretty good spirits.  She had a couple of laughing fits yesterday (which wasn't such a good idea because it increased the mucous) and gave her the hiccups. Actually the scary part is when she gets a glob of mucous in her throat and can't clear it.  She ends up gagging and retching, but isn't breathing until she clears it.  I know it's only a few seconds, but it feels like an eternity.  This mostly happens first thing in the morning after she has been laying down all night.   I asked the Dr. if we could give her a medication to help the symptoms and she said that the amoxicillin is the best thing (other than the humidifier we are already using) and that other meds may cause more problems. So, we wait and hope she feels better soon.

Trouble with a T

Eve and I were getting Seamus up this morning.  He was standing in his crib.  He hooked his armpit over the corner of the crib and hiked his leg up and actually got his foot over the top rail!  I said, "No, no." and gently removed his foot.  I was afraid of making too big a deal because I didn't want it to be something funny or attractive to him.  He's 18 months!!!  This is defintely something I've never dealt with before. 
I guess we'll wait and see if he does it again.  He shouldn't be able to do it when he is wearing his sleep sack because he won't be able to get his legs far enough apart. 

photos

In September, we had a professional photographer come to take pictures of the kids.  Unfortunately, she had her baby earlier than expected, so we didn't get our photos until November.  So, we had them printed and gave them to our parents as Christmas gifts. 
Here are some highlights: 

small hiccup

A small hiccup in the wonderful holidays was that Eve needed to go to Baystate to have her tube replaced.  It accidentally came out Saturday night (it got caught).  Fortunately, Jim remembered we had a spare mic-key button (her old g-tube) that he inserted to preserve the stoma.  Otherwise, the stoma could begin to close in as little time as an hour.  By inserting the mic-key we avoided surgery to re-open the stoma.  However, the hospital couldn't replace the g-j tube until Monday.  Additionally, it couldn't be done at our local hospital.  So, Jim packed up Eve on Sunday morning and they went to the ER at Baystate for fluids until they replaced the g-j (since without the tube she would get no nutrients or fluids).   They were back home by Monday night.  I'm going to make sure we have another mic-key on hand in case this happens again.  Apparently, Eve was not bothered in the least when it came out (I was still in FL). 

Jim and I were talking last night about Eve and her decline.  She barely says yes or no anymore, but you can still (usually) tell what she wants by her facial expressions, etc.  Jim also mentioned that he thinks she can no longer cry.  I've been saying for a while that I've noticed that she has stopped complaining, but it didn't dawn on me that I can't remember the last time I saw her cry.  Jim said at the hospital, they had to dig around to find a vein for the IV and she didn't cry at all or get upset.  That would have created hysterics a year ago.  Fortunately, she is not without emotion.  She continues to laugh every single day and shows such love for Josie.  She coos at her and at Seamus.  Mostly, she laughs at Seamus.  Especially when he is redirected.  This morning we were laughing at him in his crib.  He was running back and forth and bouncing off the rails.  He looked like a little wrestler in his mini ring. 

holidays are over

Now that the holidays are over, it's time to update the blog.  What a fun time we had!  We had Christmas at our house - just the four of us.  It was quiet, but nice.  Seamus really loved opening presents and would say, "Oooooooo!" as he opened  them.  The weekend after Christmas we loaded up the new van (can I say again how much I love it?) and drove to NJ for a super quick visit to my parents (Friday afternoon to Sunday after breakfast).  The kids did great and I was so proud of them.  They slept like champs at Oma and Pop's house and had lots of fun.  Uncle Scott was also able to come over for dinner Friday night.  Here are some pictures:

After that quick trip we headed back home and got ready for a visit from Grammie and PaPa.  They came New Year's Eve and stayed for a week while I was at a conference in Florida.  The kids had lots of fun and they were a huge help while I was gone.

Update:  Look at the picture below.  I just noticed that Seamus is in mid-fling.  He became quite adept at opening presents (this was his third round) and would quickly throw out anything uninteresting.  Here he is throwing  fleece pajamas.  

This is Seamus sitting in the box his toy came in.

So, a grand time was had by all.