Updates on Garrett

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. 

  Garrett’s about to go into the OR.  He’s in good spirits. Elizabeth from Child Life stopped by and gave him a new LEGO set. His stuffies, Tail and Peligi, are keeping him company.  Garrett’s mainly looking forward to eating.  More to come...

Garrett's surgery is set for today, we just don't know the time yet.  Which is really frustrating Garrett because he's HUNGRY! He hasn't eaten since lunchtime yesterday and is on NPO until the operation. So, when he comes out the other side, he'll be ravenous and probably still unable to eat for 12-24 hours post-op because they'll keep him on fluids and clear foods (jello, which he hates, chicken broth, which he also hates) to watch the stoma output. I haven't told him this last part, since he keeps asking for candy and will probably kill the messenger. I'll let the nurses take that bullet. Unlike other stays, Garrett is in pretty good shape coming in. He's put weight on, his muscles are strong again, and he's happy. So, we're hopeful that the stoma revision secures his small intestine and he stops having prolapses when he runs and plays. More to come...

Update: Garrett was sedated and the surgeon was able to manipulate and reduce his stoma. He’s going to be admitted and they’re moving up his revision surgery to tomorrow. He’s awake now and a little out of it. —— Garrett’s in the emergency department with a severely prolapsed stoma   He was already scheduled for surgery this Thursday to have his stoma revised, as he has been prolapsing whenever he does any running or physical activity. Being six, he’s active a lot, so 1-3 prolapses a day has been his life for the past 5 weeks. Unfortunately, he prolapse today and we were unable to to reduce it. We’re now in the ED, he just had an x-ray, and I’m waiting to talk to the surgical team about what to do next.

I realized it’s been a long while since we posted on Garrett.  Garrett has been doing great, particularly in the last 2 months. It took awhile to get to this point, with mobility being his biggest hurdle. He lost a lot of weight and muscle tone during his hospitalization and convalescence, so walking around the house was painful. He couldn’t make it up and down our stairs on his own.  However, Garrett has been going to PT, swimming and chasing/being chased by Gibson. He’s back to his old strength again.   Garrett was really thin back in July, but since August he has been trying new foods and eating a lot, and has increased his weight by 15% since discharge. And, his skin has really cleared up too! All told, we’re happy. He’s back at school and has started soccer.   The setback now really has to do with his stoma, which has been prolapsing quite a bit. We’re working on core strengthening exercises to help. 

Garrett slept all night last night! He was thrilled that no one came in to check his vitals or examine him and when he woke up today, he said how happy he was to be in his own bed and at home. He also ate more food today than he has any day in months.  As far as Garrett’s heath, he said it best, “I’m not in tip-top shape, but I’ll get there.”  The surgery to remove his colon was successful, but he had quite a few setbacks during his 17 day hospitalization including recurring fevers, psoriasis, a blood clot and a very painful, inflammatory response on his skin that caused rashes and pustules that have made it difficult to walk. The clot will be treated with twice daily injections of a blood thinner and the skin will be treated, for now, with topicals three times a day.  Garrett will start a new biologic medication within the next few weeks to protect the remaining 10% of his colon. The biologic will hopefully prevent a reoccurrence of his uveitis and help with the skin iss...

After 17 days at CHOP, Garrett came home tonight. It was a very long stay with a lot of ups and downs, but he’s back with Mommy, Daddy and Gibson. Happy to be in his own bed again, Garrett quickly fell asleep tonight. More to come...

What is the breakfast of champions? A pancake bigger than your face, a mountain of bacon and some milk. 

It's quiet in Garrett's room tonight There is no pulse-ox meter connected anymore. That means:  No more regular beeps, the system is in standby. No more small alarms if his pulse slows a little No more large alarms if the lead comes loose from his foot. Vitals checking throughout the night by the nurse is reduced. Because Garrett drank the necessary amount of liquid today and is eating some, he's not connected to the TPN and the pump is off tonight. This means: No more regular whirring. No more annoying alarms when a line is occluded  No more annoying alarms when one of the pump cbannel has finished and needs to be changed. It's easy to change his shirt. Vitals and PICC line checks throughout the night by the nurse are reduced. That's all good progress. So, it's quiet. No fevers. Good time for sleep.

Typically at day 8 in a hospitalization, Garrett’s frustration begins. That’s the day he starts to incessantly ask about going home, begs to see friends, and really wants to get back to school. Monday, we doubled that 8 day mark- day 16 at CHOP. These 16 days are compounded by three and a half months of not being settled because of a move, and not seeing friends or being in school because of COVID-19. Garrett, like all kids right now, is looking for a return to normal. But nothing is really normal right now for anyone. The hospital routine, to which Garrett had become accustomed over the years and in which he took some comfort, has changed. The normal flow of the day is completely different. Doctors rounds no longer happen in the hallway, making it eerily quiet. Parents can not use refrigerators, microwaves or washers, but instead must ask a nurse for assistance if they want or need something done. (This extra work must be exhausting for nurses, by the way.) Interacting with children i...

TPN will be weaned by 25% in tonight’s overnight feeding. If Garrett’s numbers continue to improve and he can increase oral calories and hydration, the TPN wean can progress in intervals deemed safe by the nutritionist and GI team. Inching toward a discharge plan??? Garrett spent much of the day reading and watching TV again. Fifteen days into this hospitalization, he’s also made it VERY clear that he no longer wants to be here and has no time for anyone else doing an exam.  Nurse: Can I just see your belly? Garrett: Nope. Nurse: Please, I need to look. Garrett: I can tell you it looks the same as it did 20 minutes ago when the last person looked.  Garrett walked halfway down the hallway and back again. It was the farthest he’s walked in close to three weeks. Progress.  Today, for the first time in more than a month, Garrett really laughed. It was at my expense, but I got to see his smile, so I’ll take it. Basically he acted like “Boss Baby” and fired me and the CHOP staf...