Tuesday, June 29, 2010
What about Samuel, you ask? Well, he is growing every day too... but right now I'm going to brag about his ability to recover! Yep, had a little blip this past weekend... I'm not willing to call it a step back because it was kind of user error rather than Samuel wearing out. Long story short, once on the HME/thermovent he was getting way too much oxygen... after four days of that, he let us know. Quick to act, and with the support of his pulmonologist, we let him rest on the ventilator almost all weekend... at that point we didn't know why he was acting up. On Monday, with the help of his home nurse and our home respiratory therapist, we put the clues together, analyzed his O2 when on the HME, and it all worked out! Samuel isn't quite himself yet, but he is well on the way :)
What's crazy is, now that I know why he was acting up, I'm so glad we were able to fix it... for Samuel, too much O2 means CO2 retention, which is what put him back in the hospital the last two times. I'm sure his CO2 was high on Friday, but due to good advice he was able to rest and blow it off during the weekend... and then great troubleshooting on Monday resulted in a blip, rather then a step backward. Onward!
Look familiar?! It's the crack table... with only two of its four legs :)
Apparently just playing with the tupperware available wasn't good enough... either George wanted to make sure there wasn't anything extra special hiding in the back of the cabinet, or Olivia talked him into climbing in and was about to shut the door behind him. Ha ha!
What better to do after painting with food... then head back to the tupperware cabinet! Woo Hoo! George, the yogurt in your hair looks just fabulous :)
Friday, June 25, 2010
These days we have added the big swimming pool, the sprinkler, and the beach to our list of water fun, and we are loving that too! George and Olivia have finally taken the 1-2-3 dip under the water... a little coughing, but no tears. Yea! They seem to get better every time!
We went swimming with our friends Josh and Kristen a few weeks ago, and Josh took some great pictures. Here are just a handful...
George splashing mama is fun!
Mama splashing George is even better!
Um... how exactly do you un-teach this one?!
George and Kristin :)
Samuel gets in on the swimming action too
The small pool seems to be a hit.
In case you were wondering, the difference between a bath and taking a swim is the intent of the activity. Above, no intention of cleaning... just of having fun :)
The bigger pool seems just as great!
Wednesday, June 23, 2010
Samuel's machines make quite a bit of noise... here are the players involved:
- The concentrator is what provides Samuel his higher level of oxygen. We breath 21% oxygen, Samuel needs about 30% oxygen. For traveling we hook up to an oxygen tank, which is silent but not realistic to use for day-to-day needs. So generally we hook up to the concentrator. It hooks up to the vent, the trach collar, and the HME.
- The ventilator is the machine that provides the pressure support, humidified air, and at night actually provides rhythmic breathing. We hook up to the concentrator for a higher level of oxygen.
- The trach collar is what allows Samuel to be off of the ventilator, so no pressure support, but still provides humidified air and hooks up to the concentrator to provide a higher oxygen level. We watch him carefully to be sure his oxygen saturation stays up and his work of breathing stays down :)
- The thermovent, or HME (heat moisture exchange), is similar to the trache coller but so much better! It looks like a little barrel and has little filters that provide the heat/moisture exchange. It attaches directly to the end of the trache and has a little place to plug in the oxygen concentrator. Like the trache collar, it provides humidified air, but not as much... our noses humidify the air we breathe, but because he breathes through his neck, he would get extremely dry air.
When Samuel first came home, he was on the ventilator and an oxygen concentrator 24/7. The concentrator was heavy duty, with the ability to go up to 10 liters of oxygen. Samuel generally needs anywhere from 2 - 4 liters, but they wanted us to have the ability to get higher numbers, just in case. (I hate "just in case," but I am so thankful to feel prepared :) ) About two months ago, we got a new concentrator... ours was having issues, and when the new one came they felt we could go down a notch to a concentrator that tops out at 5 liters. Yea! The added benefit was also a reduction in the noise - BIG TIME! We thought we had hit the jackpot! I can't even describe the difference!
Here's an example... when we had the heavy duty concentrator, we had to turn the volume on the radio up to at least 20-25 in order to sing with our kids. With the new concentrator, we can have a dance party at a volume of 12-15! Although we still turn in up to 20 for Kookaburra :)
Then came the trache coller... so excited to start coming off of the ventilator for a few hours per day! Then we turned on the trache collar... I love it for my baby, but oh my goodness, it's louder then the ventilator! Back up to at least 18-20 on the radio volume.
We worked our way up to eight hours on trache collar per day! WOO HOO! Then, it got better :) At our last pulmonology visit, we were prescribed the thermovent/HME and told to attempt turning off the concentrator (no extra oxygen) for a few hours per day. AGH!!!! I almost fell on the floor... instead I just got teary. We are making progress!
Last week we started turning off the concentrator for up to four hours throughout the day. So far, so good! His O2 saturation's are great, and he doesn't seem to mind at all. It is CRAZY!
This week, we started using the thermovent/HME, and it is AMAZING! No ventilator AND no trache collar while we are using it! We could probably turn the radio down to 5 and still hear it :) Plus, Samuel seems to love it... he has been so happy the last two days! He generally starts to tire out around 6:30pm and we do everything in our power to keep him awake until his bedtime... since the thermovent/HME, he is a rock star even at 7:30pm.
I feel like there is a calm feeling in our house that hasn't been there before. I still worry, I am still thankful for every day that Samuel is home and our family is together, and even though I don't have too much time to over analyze, I am terrified of Samuel going back to the hospital. BUT, the good news of pushing ahead with Samuel's breathing, combined with the new low volumes at our house, changes the atmosphere in our home.
Didn't mean to write so much, but got going and couldn't stop :) Here are a few visuals...
Saturday, June 19, 2010
I know that sounds bizarre, but before the last few weeks our concerns for Samuel were almost entirely on him breathing... on him living. Now, while we certainly have quite a road ahead, we are more confident in his medical state and have started to focus on some relatively normal baby concerns like learning to eat, developing protective responses in order to sit independently, and getting more tummy time! I suppose they're not normal concerns for an almost 17-month old, but what does "normal" mean anyway :)
I do spend moments every now and then wondering if we are progressing, and at an acceptable rate. My conversations, and reassurances this week were so perfectly timed :) From people who have played with Samuel, worked with him, even simply visited with him, I hear how amazed they are at the progress he is making. The examples are the proof in the pudding... from tiring out after 15-minutes of assisted sitting to weeks later sitting for 3 and 4 times that long and with only a safety net for tipping over... from mimicking smiles to mimicking just about everything... from vent 24/7 to trache collar stints and no extra oxygen trials... the list goes on, and I LOVE IT!
Our cutie-patooties :)
Yes George, I see you and I see how cute you are...
Pretty sure those dimples are getting cuter by the day!
Monday, June 14, 2010
Some days there are things we've been waiting for, like turning the pages of a book, going under water for the first time, or taking multiple steps without falling. And some days there are things that we never knew to look for, like learning to fake laugh when you feel it's socially appropriate to laugh, trying new dance moves, or learning volume control... wait, we're still working on that one. We love trying to keep up with all the craziness!
I really need to figure out to post video... this photo just doesn't do it justice.
One of our newest toys... an old school car garage... we love it! (Thank you Cathryn!) And so do the babies! George is still trying to figure out exactly how the ramp springs back into place after each car goes down it.
Ah ha! George is caught standing all by himself :) Too funny, he will only stand on his own if he's too busy to realize he's doing it.
Holding on again... this time to figure out exactly how the car works, or maybe how the person stays in the car even when upside down :)