Day 57 (March 17, 11:00PM)
Aiden is still at Boston Children’s Hospital. He had a rough day as he was in alot of pain. At one point, he had a fever of 103 degrees and it took quite a while to reduce it.
Additionally, he has pulmonary edema which is an abnormal build up of fluid in the air sacs of the lungs, which leads to shortness of breath. This is most likely a result from the surgery, the pain and other associated factors.
Please keep him and Hannah in your prayers. As you can imagine, she is quite tired and it will take him some time to fully recover.
Aiden Update: 3/16 10:30PM
Thank you all for your prayers! Aiden is such a little fighter, he never ceases to amaze us! He is so tough!
He had not one, but two trips to the Operating Room (OR) today. Initially, he came out of the OR earlier this afternoon, following the jejunostomy closure. That procedure went very well, and he has an amazing surgeon and awesome anesthesiologist (handpicked by the surgeon) who did a great job.
He ended up going back to the OR for placement of a PICC line (a type of central line). The second time around was definitely a little harder, but Aiden is such a champ! He eventually made it to the Recovery room and tonight he and Hannah are staying at the hospital. Hopefully, the wound will repair quickly and he will be back to “normal.”
Of course, the long-term remains unknown. Our hope and prayer is that he eventually stops vomiting. Please pray to this end. Thanks!
Aiden Update: 3/15 10:30PM
The surgery will take place tomorrow at 9AM. Please keep him in your prayers!
Aiden Update: 3/13 2:30PM
The surgery date is fast approaching (Tues., 03/16). This procedure will be to remove the j-tube and close up the jejunostomy site in hopes that it will help alleviate some of the pain and perhaps help with the intermittent obstructive events that Aiden continues to experience. The surgeon will also use a flexible scope to look around the intestines to see if he can find any other cause for Aiden’s symptoms.
Of course, the downside to that is the question of how we effectively feed him without the j-tube. Right now, as long as he is consistently on pain meds, he does not throw up. Once we start weaning the pain meds, the vomiting will return and it will be difficult to ensure that he is getting the proper nutrition, and also difficult to protect his lungs from aspiration.
Please continue to pray that the doctors will be able to identify and diagnose the problem before it causes further respiratory and other issues.
On a lighter note, last week Aiden and Hannah enjoyed a day out of the hospital to run some errands and get Aiden’s hair cut, thanks to another Dallas-area family that they have met at Children’s while in Boston. Carter is just a little bit older than Aiden and is a multvisceral organ transplant recipient. Aisen was thrilled to ride in their “truck” (big SUV), and Hannah and Chelle enjoyed the chance to get some fresh air and go to Walmart for diapers and other essentials!
This weekend is rainy and cold in Boston, but no snow. Aiden has been asking to see the sun, but it sounds like it will be some time before we are able to grant that request!
Aiden Update: 3/10 11:30PM
The J-tube surgery is scheduled for next Tuesday…finally! Other than that, there is not much else to report. He has good days and “not as good” days but has been more of his old self lately.
Aiden Update: 3/08 10:30PM
The surgeon informed us that he would rather wait till next week before performing surgery to remove the J-tube. He really wants Aiden to be back at his baseline and is being very cautions (even if it means being overly cautious). Hopefully, it will be early in the week.
Aiden did have a couple of good days and was his old, cheery self! Thanks again for all your prayers!
Aiden Update: 3/07 10:30PM
Hopefully, this coming Tuesday, Aiden will have the surgery to remove and J-tube. In the meantime, he has been enjoying his freedom away from the hospital. This weekend, he even got a haircut!
Aiden Update: 3/05 8:30AM
Discharged! Yesterday afternoon, Aiden was released from the hospital. He was very happy once he realized what was happening and kept saying “go buh-bye…go buh-bye…”
Hopefully, the surgery will take place sometime next week but Aiden (and Hannah) are very happy to leave the hospital (at least for a little while). The pain is still an issue but regardless of whether he is in the hospital or not this is an issue. It is primarily a problem when he is trying to pass something.
Please pray for the pending surgery and that his issues would be sorted out.
Aiden Update: 3/02 11:00PM
It looks like it will be another week before the surgery 🙁 The surgeon is concerned that the skin around the J-tube site is weak and needs some time to heal. Trying to remove the tube and then patch up the flesh would could cause a fistula (an abnormal connection between an organ, vessel, or intestine and another structure). He wants to move very cautiously with Aiden and also wants the lung to have a little more time to heal. They are considering releasing him from the hospital for a few days if they can figure out how to manage the pain.
Today, he was happier than usual. In fact, he even laughed a little (see the video below).
Aiden Update: 3/02 7:30AM
They did not make a decision yesterday (Monday) on whether or not Aiden was ready for the surgery. But, hopefully, they will follow through today and at least review his overall condition and make the assessment accordingly. Yesterday was a better day as he was more comfortable and even smiled a couple of times! Of course, Aiden not smiling is like water not being wet so he must have been absolutely miserable the last few days.
There is a short video clip below that shows his happy moments. Please pray that the medical staff would finally make a decision and that the J-tube surgery would take place this week!
Aiden Update: 2/28 10:30PM
(We will continue to post daily updates of Aiden at the top of the most recent post and the rest of it will be the regular triplets updates.)
Tomorrow is an important day as they will determine if Aiden’s lungs are strong enough for him to be anesthetized. Please pray that this is certainly the case because the J-tube wound is not going to get any better until the surgery. He is a bit of a basket-case as the narcotics make it difficult for him to get much sleep.
Today is the last day of February and what a month it has been! There never seems to be a break when you have 3 two-year olds (one of which has chronic medical issues).
It has been quite a while since we had nice weather. This past weekend, it got up to 60 degrees and the boys were excited to finally get outdoors again.
Besides battling with allergies, they are both doing very well. They miss Hannah and Aiden but get to talk to them on the phone every day. The latest craze is the garbage truck. On Friday morning, their Grammie takes them in the car and follows the garbage truck. They love watching it dump trash; probably because they too like to dump things around the house. Of course, any mess they make is their responsibility (usually).
Grammie and her boys
Time to play outdoors
Evan, blow some bubbles
This would make a great advertisement for TruGreen
Here comes Ethan and he has his ‘wand’
Watching out for the doggies
Loving the wand
They used it to dig at the playground
Evan loves being pushed in the swing
Ethan still likes the baby swing
What do you see?
Daddy and his babies
Another picture with Grammie
Time to roam the neighborhood
As always, looking for things to pick up
A new find: sticks
Ethan, you can’t take the street sign with you
Evan was looking for the perfect acorn…and there it is
Ethan wants to run away
He surveys the damage from the snow storm