Monday, November 16, 2009
Here are the pictures we promised a week ago, with comments from Ellis.
Getting ready to leave:
"We're going where?!?!"
"Oh, you're serious about this home thing."
"Hold on! You mean I have to leave all my lady friends?"
"I suppose I could give it a try."
"This home place is kinda boring."
"But this bed isn't too bad."
"I love this guy."
"She lives here, too?"
"What do I have to do to go back to my ladies - stop breathing?"
"So this is the sun, eh?"
"Playing is hard work..."
"Please, please, I need my ladies!"
Monday, November 9, 2009
Thursday, November 5, 2009
That’s right! Ellis is scheduled to be discharged on Monday, November 9th. We are so full of emotion - thrilled to finally have him home, relieved that the rollercoaster is coming to an end, sad to leave our new friends behind, and a bit nervous to care for Ellis without help from the fabulous staff at Children’s.
The amazing part: Ellis is coming home without any medical support. No oxygen, no feeding tubes! Nothing!!!!
Here’s a close look at Ellis, cannula free!
Weeks ago I asked Lilah to draw a picture for Ellis. To my surprise, she drew what looks a lot like our family, with Ellis and his "wires" at the end. Of course, when asked what she drew, she responded with "circles". Yes, Lilah, those are circles.
Monday, November 2, 2009
Today was a very special day for Ben and his parents. He was moved to a big boy bed, AND his mommy held him for the first time! It has been a long 48 days for this family. We are so proud of you, Ben!
Check out more of Ben’s story here: http://benjaminhubble.blogspot.com/
Sunday, November 1, 2009
His feeding tube was removed yesterday and he continues to feed on demand – when he wants and how much. He is either nursing or taking a bottle, and so far, is gaining the appropriate amount of weight. Also, Ellis is down to .1 liter of oxygen, which is low enough to bring him home. That is just a small whiff, where we plan to wean him over the following weeks. So the criteria for coming home are: 1) takes all feedings by mouth; 2) wakes when hungry; and 3) passes a standard car seat tolerance test. The latter insures that Ellis is able to maintain his breathing for 2 hours while in the car seat.
We are so fortunate for Ellis' continued progress and milestones.
Here is Ellis’ inspirational Halloween costume – enjoy!
You can view here below or click on this YouTube link: http://www.youtube.com/watch?v=knbTrOqZr5M
for a clearer and larger version. Thank you again to everyone for your comments, support, and thoughts directed toward our son. We are so grateful to all that has been done for Ellis.
Take care; James, Christine, and Lilah.
Monday, October 26, 2009
Ellis' most recent accomplishment is how well he is eating. He took to both the bottle and nursing like he has been doing it since day one. And he is able to transition between bottle and nursing with ease. Currently, he is receiving 90ml (3oz) of breast milk every 3 hours. He is taking between 40 to 65ml from the bottle and the remainder is then given through the feeding tube. When I nurse, he gets an additional 45ml bolus feeding. It may take a bit for him to get to 90ml by mouth since his stomach has never had to handle large volumes over a short period of time.
Some of Ellis' new moves...
Wednesday, October 21, 2009
We are thinking of this little guy and his family all the time. CDH is a very serious condition and involves a long journey to recovery. Continue to fight hard, Ben. We have seen your surprises, and have no doubt you have many more!
Monday, October 19, 2009
Ellis is doing very well! He was taken off the convention ventilator last week and briefly put on the CPAP. He did not dig the CPAP at all and was moved to high-humidity about 4 hours later. Each breath he takes now is his own, while still being supplied a little oxygen through the nasal cannula. His blood gas numbers have remained at good levels for over a week, so his team has stopped the daily blood test. No more pricks on those little feet!!!
Doctors were able to remove is IV line after weaning the few remaining medications. He is now given Morphine for pain and Clonidine to help with withdrawal from Versed and Fentanyl. And now that he is off those powerful drugs, we are seeing more movement in his limbs everyday - very encouraging!
Ellis is on a continuous feed of breast milk through a feeding tube. This week, his team will transition him to bolus feedings to mimic a regular feeding schedule. Yesterday, we introduced the bottle! He sucked down about 8ml. Everyone has warned us that feedings are typically the last hurdle to overcome and it can take some time for a NICU baby to master suck, swallow, and breathe. It is all up to you, Ellis!
Lilah and Ellis demonstrate their silent film skills as I try to direct a tender moment!
Wednesday, October 14, 2009
The team believes that the right eye will compensate for any left eye impairment. The damage to the thalamus is different. It is on both sides, the right being worse than the left. The thalamus is responsible for "relaying" messages from the brain to other parts of the body and visa versa. And while other areas of the brain do a good job of "rewiring" after an injury, the thalamus does not.
The damage to Ellis' brain can be described as mild to moderate. The team was very vague as to what this means for Ellis. They expect some motor, sensory, and learning disabilities. They said that he will probably be able to walk, but will likely need assistance with some skills. What those skills are, and what assistance will be required, will only be revealed as Ellis develops. Some disabilities might be small, some might be big; there is just no way of knowing right now.
A couple weeks ago a doctor on Ellis' team handed us a copy of an essay written by a mother of a special needs child, here's a link to the essay: http://www.our-kids.org/Archives/Holland.html
Italy is no longer on our itinerary. Holland, we are on our way!
Saturday, October 10, 2009
Ellis is able to move his hands and feet, and initiating movements in his shoulders, trunk, elbows and knees. While these movements are small, they are very, very good signs that he may be able to regain motor function. His muscles are still very weak after not moving for 4 weeks.
Ellis is acting more and more like a baby who is not so sick. He cries when he has a dirty diaper, spits up, smiles, and even took to a pacifier pretty well. And he was moved to a big boy bed…a crib!
I'm back to working part-time to save remaining FMLA for when Ellis comes home. Thank you all for your continued support.
Love - Christine, James, Lilah, and Ellis
Sunday, October 4, 2009
Friday, October 2, 2009
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Monday, September 28, 2009
It looks like Ellis’ 24 hours was last Wednesday/Thursday, between the two ECMO clamp tests. Ellis is doing well. He continues to show improvement everyday. Today, he started taking some of his own breaths, which you can see recorded by the ventilator. His team continues to turn down the ventilator settings and oxygen he is receiving – he was at 100% oxygen and is now down to about 70%. When he is agitated and his stats start to rise, we are able to calm him with our voices. Amazing!!!
Today was a great day. Today, we talked about Ellis coming home.
That’s right! If he continues to progress at the same rate and has no setbacks, Ellis might be able to come home in a month! Just last Wednesday, James and I were saying our goodbyes to Ellis and that night spoke with our parents about funeral arrangements. And now we might bring him home.
Thank you all for your prayers, positive thoughts and energy. We are so grateful!
Christine, James, Lilah, and Ellis
Sunday, September 27, 2009
Today, Ellis' stats have remained strong. His blood gas numbers and chest x-ray continue to get better, and the team has started weaning him off the ventilation support.
Happy 1 month birthday, Ellis! So happy that you are the one giving gifts!
Friday, September 25, 2009
Here are some pictures from Wednesday, before Ellis went off ECMO.
An early one month birthday party
Thursday, September 24, 2009
Here's a link to what was going on... http://www.ucsfhealth.org/childrens/health_professionals/manuals/29_PulmHemorrhage.pdf
After this episode, his check x-ray was almost completely whited out...not good.
The best news, though...
After 24 days of being chemically paralyzed, we finally looked into his eye (the one that is not swollen) , felt his grasp, and watched his bottom lip move.
We really did not think we would be here today. Last night, we started planning his funeral.
Let me be clear that Ellis is not out of the woods. Once of ECMO, he will require a lot of support, which may not work. But today is another day with Ellis and we are so happy, happy, happy!
Thank you all for your prayers, thoughts, and support!!!
Wednesday, September 23, 2009
Other than the CO2 level, his other stats look good.
Tuesday, September 22, 2009
Christine, James, Lilah, and Ellis
Normally, the use of ECMO, oscillator, and nitric together are applied in emergency situation when a patient has to be “kicked off” ECMO because of serious bleeds on the brain; it is a transition that spans hours not days. This is a last ditch effort to buy Ellis more time in hopes that he will turn that corner by doing something his team has never done – use the 3 treatments in tandem over a couple days! A counselor told me today that during this morning’s rounds a team member said of Ellis' case, “We are just not ready to let go.” His team is amazing! We are forever grateful for all the time they have given Ellis and our family.
Ellis has shown amazing strength, and we are grateful for each day. This week we are focusing on just enjoying our time with our son and no longer concerned so much with what is the next step.
He has been chemically paralyzed since his first day of life because he moved so much...just like in the womb! Today, his team has started a drug to "wake" him up from the paralysis to see how he responds. We are looking forward to seeing some tongue movement and maybe some fingers and toes!
He will be one month old on Thursday, and we are planning a birthday party for him!
Monday, September 21, 2009
If the weening does not got so well, he will stay on ECMO and they will likely switch out the machine...which has its own complications and usually does not have a positive result.
Thank you for all your prayers and positive thoughts. Today has not been a very good day. The little guy next to Ellis is being put on ECMO as I type this post. James and I offered what we could to his parents. And they were able to see Ellis and how the ECMO machine is hooked up. Our prayers are with this family.
Sunday, September 20, 2009
While on the machine, Ellis has had to overcoming many set backs. He has had bouts of bleeding (thankfully, not on his brain), which required heparin to be stopped for sometime. Heparin is used to keep the blood from clotting while on ECMO and stopping its use rarely happens. Some parts of the machine had to be replaced because of the presence of blood clots. When this happened, the machine was stopped and Ellis was kept alive by hand bagging air into his lungs. The surgeon told us a few days after this event that, “Generally, sick lungs, bleeding and ECMO is a lethal combination. His nurses did a good job of getting him through that situation.” My heart sank! We are very lucky to have Ellis with us today.
After over two weeks of ECMO treatment, Ellis has started to show some signs of improvement. This is good news, but the ECMO machine is showing some signs of wear. So much that it has been recommended to either move him off of ECMO or replace the machine. The surgeon will make his decision on Monday or Tuesday.