Updates on Garrett

Garrett is displeased with the pace of his doctor's discharge planning and feels they are not taking what he says about wanting to leave seriously enough. (I think they are being cautious and considering his overall health, but he just wants to go home.) DOES HE LOOK SERIOUS NOW?  He requested glasses (which he does not require!) to make him look more mature, and therefore be listened to.  He also requested a meeting with his doctor who is the director of CHOP's early onset IBD program which he began with, "Finally! Someone who can make some decisions around here!" If only you could have heard the rest of his conversations today and how he advocates for himself!  The glasses may stay...  

    Garrett’s surgery was successful. His surgeon told us that from his perspective, Garrett’s condition would not have improved without the diverting ileostomy which made us feel sure it was the right decision. The problem the ileostomy is working to resolve was more mechanical than disease related, and now Garrett thinks it’s hilarious that he had what he’s calling a “poop plumbing” problem and can’t wait to tell his friends that.   The day and night following surgery were very difficult and Garrett did not fall asleep until 5am because of the pain he was in. And he only fell asleep because a super star nurse, one he’s had several times before, really advocated for improved pain management for him overnight and he was finally given a medication to help.  I requested the pain team see him on Friday to put a better pain management plan in place. The changes they made allowed for an improved day on Friday and some sleep Friday night.    Today is better for h...

This morning Garrett will have diversion surgery; he'll be living with an ileostomy again. Sadly, the IV antibiotics did not reduce Garrett's inflammation, and he continues to feel sick and is in a lot of pain. It's quite the unfortunate turnaround from the beginning of last week when we thought he was improving and would be discharged. Like before, this is a "temporary" diverting ileostomy, meaning they can reverse it at some point like they did last summer. However, it will take a year or so for us to see how his body responds to medications and what the path forward looks like at that point. In the meantime, we'll focus on making Garrett healthy again and getting him back into the activities he's been missing since January. I won't lie, it's not the outcome we hoped for. But, it's where we are and we'll move forward as a family.

Even though Garrett doesn't feel great, he is still working to feel better. His physical therapist is fantastic. She's using his love of Roblox and art to get him moving to strengthen his body. It's painful, but it perked him up, and I saw his personality shine through again for a bit.

Garrett has been here 15 days now.  Sadly, he's not improving. While it seems that the stricture that landed him here in the first place has abated with the dilation, his mini-colon is still very inflamed. As such, he's in a lot of pain and has stopped eating again. Speaking with the care team, they're unsure of whether an infection or his IBD is driving the inflammation. So, they're going to be aggressive with his treatment today, placing him on IV antibiotics. If he doesn't show improvement in a couple of days on these antibiotics, that will indicate it's most likely his IBD causing this and we'll look at other options then.  

Garrett seems to be having a setback and isn't feeling as good as he was two days ago. His blood panel had some out-of-range components, he's eating less food and is less energetic. Speaking with his care team this morning, Garrett will be staying through the weekend and not heading home like we had hoped.  In the hospital, it's hard to decipher what's going on sometimes. Is he eating less food because something is wrong, or because he just doesn't like the food here? Is he less energetic because something is wrong, because he's eating less, because he's deconditioned after lying in bed for 2 weeks, or is he just bored?  We'll be talking more with them today about possible diagnostics or imaging they want to run. We will update when we know more.

Garrett has been showing definite improvements over the past few days.  The TPN has definitely been helping him get his strength back. He is hungry and eating more each day. As he eats more on his own, the TPN will slowly be paired back. His pain has significantly decreased.  He's been participating in activities here (yoga, art, physical therapy) and playing with Legos. We're working on his schoolwork too. Talking with him, he's acting and sounding more like himself.  The medical team is pleased with his progress, so we're all looking for the improvements to continue. 

  Garrett's been having a tough go recently.  Three weeks ago we went on a great weekend ski trip with one of  Garrett's  best friends and her family, but on the last day we could tell something was off with him. S aying his belly hurt, h e stopped eating that Sunday, portending the fast  downhill  slide to come. After 5 years of Crohn's, Jill and I are better able to read Garrett's "tells", and we quickly organized blood testing and squeezed in a Friday morning MRI. Turns out that Garrett had a stricture in the area where his small intestine had been reconnected to his "mini-colon" (my term, not medical :) ). This was preventing food from passing through and was causing his extreme discomfort. We had already been scheduled to take him to CHOP that following Monday, but wound up going to CHOP Emergency Department over the weekend. Jill and Garrett were in there for 16 hours before being admitted; it was a rough day for them. After an additional x-ra...

Discharge! Garrett's blood work and energy improved and his pain decreased enough to come home!  He will be on several oral antibiotics for an extended period of time and continue on immunosuppressants. In the next few weeks, he will get a repeat MRI to assess how the abscesses are doing and continue to follow up with his outpatient GI team.  He's very tired and will probably spend the next few days resting to get ready for back to school.  But he's happy to be home! And so are we!  Garrett leaving CHOP. No wheelchair needed.  He said, "Watch me perambulate, yo!" Stephen and Garrett surprised us at home. Garrett rang the doorbell and Gibson was sooo excited to see them. I was just happy they got home safely after the heavy rain, flooding and road closures!   

Yesterday, Garrett's blood work showed improvement: all inflammatory markers are down- thank you antibiotics!  They are planning on blood work again tomorrow and a repeat MRI at some point to track whether the abscesses are reducing. His team was going to move Garrett off IV antibiotics to orals in the next day or two, but his IV failed this morning so he's going to oral meds now. (Garrett has been flushing the line himself, as in that picture above!) Garrett has started eating again, but refuses most CHOP food  because, “Why would they serve kids anything this disgusting? I thought they wanted people to get HEALTHY!” But we'll take that as sign. Currently, it's pancakes for breakfast (CHOP does do breakfast well), Gia Pronto (restaurant across the street) pizza for lunch, and CHOP chicken fingers for dinner, with snacks strewn throughout (sun chips, Lays chips, cookies, fruit roll ups, Snickers Ice Cream bars, Rice Crispy treats, strawberries). We are really hoping ...

Garrett's health is never straight forward and his post-surgical recovery has been no different. After his June bowel reconnection, he had a few great weeks, but after contracting a virus, then another virus and having additional IBD related issues, Garrett is now hospitalized.  Garrett had been struggling for a few weeks and on Friday I took him for an outpatient appointment for fluids and iron. We left the appointment, but his doctor called while we were still in the parking lot and told us to come back into the hospital as more of Garrett's blood work had come in and she felt it was unsafe for him to go home.  He was pretty upset to be admitted and get another IV after just having one removed. After (another!) Covid test, he was admitted.  In addition to dehydration and anemia, Garrett has been experiencing pain. An MRI showed abscesses. Due to their size and location, surgery and interventional radiology want to take a wait and see approach. Short term,...

  ...without a stay (or two) at CHOP. Sadly, Garrett was admitted on Friday evening. We saw this coming, as he has really deteriorated over the past two weeks. He’s had a lot of abdominal pain and was going to the bathroom a lot, so he naturally stopped eating and drinking (his defense mechanism when he feels like this).  He’s lost a lot of weight, pretty much all he earned back after the colectomy, and his bloodwork was concerning enough that the Friday afternoon outpatient visit quickly became an inpatient stay. ( Thankfully, we have a nice, spacious single this time. ) We had hoped that he had just caught the stomach virus that Gibson had, and that he would start to bounce back from it, but this has graduated to a larger infection. Last night’s MRI confirmed that he has inflammation around the ileostomy reversal, but more concerning is that there are abscesses. Since the abscesses are small, (≤ 2cm), they moved him from oral to IV antibiotics to see if that reduces them com...

Garrett had a very successful surgery this week- one we hope will improve his long term quality of life.  We were told to expect a 1-2 week hospitalization, but Garrett did so well, he was discharged after 4 days! He’s even back to eating a bit of some of his favorite foods.  He has a lot of healing and some physical challenges ahead of him, but for now he’s home, managing his recovery and pain in stride and as cool a kid as ever. Thank you to the wonderful team at the Children’s Hospital of Philadelphia for taking great care of him!

Garrett has now had three roommates so far post-surgery: Day 1 was a 5 month old who was pretty chill, and Garrett slept the entire time anyway. Yesterday, Garrett had an 8 year old boy who had a lot of the same interests. After Garrett woke up a little, they became quick friends and played Battleship and watched Bluey together. This morning at 2am, we got a new roommate: a 2 year old boy who was not a happy camper. He finally calmed down at 4am and we got some sleep. So, we’re pretty tired this morning! Since we’ll probably be here over the weekend, I’ve been pushing for a single room. Keeping my fingers crossed. However, we had good news from the surgeons at 7am. Garrett is progressing well, so we can move beyond crackers to regular food. He’s still limited on food choices because of his IBD and surgery (so, no bacon), but pancakes with a little syrup are back on the menu. So, I wheeled Garrett down to the cafeteria and he had some pancakes and milk. Now we’ll see how he processes ev...

 Garrett slept through the night pretty well (less so me :) ). His pain is decreasing, though he’s still pretty groggy after the anesthia, pain meds and lack of food (he hasn’t eaten since Monday, as he’s been NPO ). Today the surgical team stopped by for their morning rounds (6am !!!) and said he can now start clear liquids, and if he progresses well, have some crackers tonight.  Also, they suggested Garrett start to move around the room a little bit, from the bed to the sofa, sit up for a bit, etc. to engage his core muscles. So, all good things. Garrett came in very healthy, so his recovery should be better than it has been in the past, when he was weak and sick. We’ll keep you updated, Stephen

 Garrett’s operation is complete; his surgeon is very happy with the results! Garrett is sleeping right now. Over the next few days, he will feel pretty sore, but he’ll start to feel better as he heals.

  Garrett headed into surgery a couple of hours later than planned. So, he was VERY ready to get started.  Garrett said goodbye to his stoma, (“goodbye old friend!”), gave us some hugs and kisses, and was wheeled out of the room. It’s hard to explain just how excited he is for this operation; he was practically bouncing on the gurney. The operation actually started around 12:15pm ET, and it will take roughly 1.5hrs, so we’ll let you know when we hear more. Thanks, Stephen

 Hi Everyone! Well, it’s been a year since Garrett had his colon removed. When he left CHOP last June, he was weighing in at 37 lbs. (way, way underweight, in the 1st percentile), couldn’t walk down the stairs, let alone up them, and had lesions all over his body. What a difference a year makes! Garrett now weighs 58lbs (54th percentile), played baseball this spring, and had his dance recital yesterday.  So, given that Garrett is healthy and strong, tomorrow he’s ready to take the next step in his IBD journey... reconnecting his small intestines to what remains of his colon, taking down his stoma and negating the need for an ostomy. Garrett will have a long few weeks of recovery, and it will require changes to his eating and lifestyle forever. However, Garrett is very excited to be bag-free; he’s been talking about all the things he’s missed doing (brother-bath with Gibson) and what he can do in the future (head-first slide into home plate)! As always, Jill and I really apprec...

 Garrett was discharged tonight and is now back home with everyone! It was a successful surgery that we hope that will stop his stoma from prolapsing and allow him to get back to chasing his brother,  playing soccer  and   enjoying recess with his friends.  

Garrett is out of surgery. The stoma revision was successful and he is sleeping off the sedatives.