Updates on Garrett

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 staff. (Think he w

Weekends at CHOP are all about waiting. Waiting for the next medication, the next blood pressure check, the next injection. Waiting for the cafeteria to open for lunch. Waiting for the next, unoccupied, elevator. But, mostly, weekends are about waiting for Monday. Nothing really happens on the weekends. While Garrett is getting good care, we always feel like weekends at CHOP are a time when there is no one here who can really make a decision that can move Garrett’s treatment forward. We are waiting for Monday to come. We were told yesterday Garrett could start weaning TPN (the IV feeds he receives through his PICC line) today. However, the doctors who are treating Garrett over the weekend were not comfortable enough with his numbers to start a wean. Weekend teams, at least the ones we have encountered after being admitted to the hospital in the past, are often more cautious and have a tendency to not want to “rock the boat” in terms of changes to patient treatments. I understand this w

The pathology of the colon of the came back and based on the level of inflammation shown, there were no medical therapies left that could have worked to repair the damage to the colon. This did reassure us that we did make the right decision in removal of the majority of his colon.    Garrett continues to make small improvements. He  played with Legos and was sitting up most of  today. Garrett did get another 103 fever today but it subsided with Tylenol.   A physical therapist worked with Garrett today. He was VERY resistant, but later on he walked across the hallway to the playroom to pi ck out a toy. It was the farthest he’s walked in two weeks- literal and  figurative baby steps. Garrett ate a few bites o f pizza from Gia Pronto, the restaurant across the street today- thanks Haddonfield Friends parents for the gift card from a previous hospitalization! He also ate a little bit of a pancake, the best tasting food from the CHOP cafeteria. The majority of his calories are still suppli

We are now six days post surgery, and Garrett is showing some signs of improvement. His skin is beginning to clear up and his fevers are occuring less frequently. Importantly, his belly pain is from the surgery alone, not IBD and an inflamed colon. Garrett's personality is slowly starting to coming back out, and he's building LEGO and playing with his iPad too. He's also been much more amenable to dealing with shots, meds and applying creams. However, having been sick and pretty immobile for the past few months, Garrett tires really easy and is extremely thin. It will take awhile for him to regain the energy and muscle tone he had before. We're not sure when he'll come home yet, but I feel a lot better about his health than I did three days ago. The things his team will be looking at closely in order to determine when he's ready for release are, his desire to eat foods again, whether he keeps himself hydrated, and if he is starting to be more mobile.  We are hop

Our goals today include getting Garrett out of bed and into a chair to help get some of the gunk moving in his lungs. We are still working on getting Garrett to eat. He says he is hungry, but abdominal pain and some really terrible mouth sores are getting in his way. Hospital food isn’t much of an incentive either! Stephen will bring some goodies from home later today that will hopefully interest him.  Garrett’s skin continues to improve and heal. His color looks better overall after last night’s transfusion.  The GI attending doctor we saw today (who knows Garrett very well) feels his fever curve is getting better and the issue will continue to subside.  We are nine days into this hospitalization and Garrett just wants to go home. It’s hard to say how much longer he will be inpatient, but I think he is making incremental progress.  Tomorrow afternoon, at least three (perhaps more) specialties will meet to discuss short term and long term plans for Garrett. We hope to have a better ind

Recognize that handsome face???  Today we moved to a new room (with a window!!!) and guess who's smiling mug was there to greet us from across the alley??? A CHOP Walk for Hope poster featuring Garrett just happened to be there to greet us. Garrett is still not feeling very well and a meeting among specialties will occur early this week.  On Saturday, Garrett’s fevers returned. He started spiking fevers up to 103 that could not be controlled with IV Tylenol. A one time dose of Motrin was given, however now that Garrett is on a blood thinner, Motrin is not part of his protocol moving forward. The Motrin broke the fever for four hours, but after it wore off, the fever returned.  Today, Garrett’s fevers, up to 103, have been almost non-stop. A one time dose of toradol was administered and it did break his fever. Tylenol and toradol may temporarily reduce a fever, but my main question to the doctors today is what is driving the fever? If the contention was the colon was the source of s

On Friday, hematology, surgery and GI agreed that an anticoagulant was needed for Garrett. Keeping the central line was essential for nutrition and the benefits of administering  anticoagulants to a post-op IBD kid outweighed the risks.  He received his first subcutaneous injection of Lovenox this afternoon and will get two injections daily. At some point, he may be switched to oral warfarin, but either way he will stay on an anticoagulant for six to twelve weeks. He will continue to be monitored and have a repeat ultrasound at some point in the future. When I asked the hematologist about precautions for kids on blood thinners, he told me Garrett should avoid X-treme sports, ATVs, skydiving and trampolines and should wear a bike helmet when he rides. I told him first I’ll worry about getting him out of bed and walking and then I’ll worry about the X-Games... ;)  We hope to see improvement in the edema of the right arm and hand over the next few days. He really wants to use his hand aga

Yesterday, Garrett’s right arm and hand began to swell below his central line and there is a significant difference in size between the right and left side. I asked for an ultrasound.  The ultrasound was very painful for Garrett. The sores on his body hurt to touch and he has quite a lot of large ones where the ultrasound probe had to be pressed. He screamed through most of the ultrasound prolonging the process.  Garrett does have a small clot, but it is not fully occluded. Typically, an anticoagulant would be started, but in a post-op IBD patient, the protocol is not as straightforward. Hematology and surgery are meeting this morning to determine next steps.  They want to save the central line in order to provide nutrition for Garrett, but need to determine the best course of action.  In the interim, he is on pain medicine for his arm (in addition to his abdomen and skin) as the swelling in his hand has now become significant and very painful. He can’t close his hand without crying. 

Dermatology just let us know they received preliminary  findings from yesterday's biopsy. In additional to IBD, uveitis, and psoriasis , they believe  Garrett has  Bowel-associated dermatosis–arthritis syndrome  ( BADAS ), an uncommon dermatological   condition  that those with IBD and other medical   conditions  can get. It can cause fatigue, joint pain, fever and painful pustule  eruptions on the skin, all of which he has right now.  He will be treated with topical steroids  over the weekend to try to keep him comfortable and a group meeting with several specialties, including dermatology, GI, rheu matology  and neuro- ophthalmology  will occur early next week to chart the best treatment course for all his underlying conditions. We hope that removing the colon will remove the main source of the inflammation  and get him on a better path overall.  Garrett has fevers and abdominal pain, not uncommon after surgery, but we hope he will feel better as the days progress. 

Garrett just had an x-ray of his lungs to see whether there was anything causing his cough. The doctor did not see anything bad on the x-ray, so they are chalking it up to intubation. They're going to give him an incentive spirometer to exercise his lungs. For now, he's just sleeping.

Garrett slept through most of the day yesterday and last night.  He's experiencing a lot of discomfort this morning from the operation, so they've given him pain management medication. He also spiked a fever, but after tylenol and ibuprofin, it has gone away. His surgeon stopped by and doesn't think the fever is something to be concerned about. Garrett developed a raspy cough overnight and sore throat, due to the intubation. However, that seems to be abating. The full body rash is very inflamed. The dermatology team thinks the colon was the cause of this massive systemic inflammation, not an infection. So, we're hoping the rashes start to lessen now that his colon has been removed. He let me apply cream to most of it this morning, but it's really bothering him. Garrett is currently on a light diet today, he's drinking milk and water. He's working on a new Batman Lego that Child Life gave him, and is watching TV.

Garrett had 90% of his colon removed today.  The surgery went well and he is recovering. At some point in the future, we may be able to reconnect his ileum and the remaining part of his colon, but for now he will continue to have an ostomy. Regardless, we are hopeful that this operation will greatly improve Garrett's quality of life, allowing him to be free of his IBD pain.