VctryLnSprts: Update thread (Caleb's Kidney Transplant)
Feb 13, 2019 10:44:13 GMT -5
coruler2, SAM, and 39 more like this
Post by Terry Grayson on Feb 13, 2019 10:44:13 GMT -5
February 12
A lot of you have asked, and I guess I will be the unofficial official mouthpiece while Eric is away so he can focus on family, but I know for sure he wants to keep his pals here updated
Yesterday around 7:56 Erics son and the Donor both entered the operating room
The procedure of Erics baby boys incisions began around 9:30 am meaning the donors procedure was moving along well
The donor was in recovery around 12:05pm the donor was moved to recovery and the family was being allowed to check on them, Caleb was still in the operating room
At 1:46pm Eric got a call from the Operating room that the kidney was in place and was functioning , another hour or so until they would be finished closing the incision
at 4:24 pm the procedure was done and Caleb was moved to pediatric ICU to being the recovery process. Eric and his family were to get to see him around 5pm
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February 13th 9:00 am
I talked to Eric this morning and he provided this update:
Caleb was pretty restful throughout the night and was able to sleep quite a bit. He is producing urine effectively and they are working on pain management . His lab numbers around
4 am this morning were better than they have been ever in his life. Unsure when they will move him from ICU to a regular recovery room. The donor (ill leave this name out because i haven't asked if I could say)
is doing really well , blood pressure and labs look good for them as well...
Eric appreciates all the thoughts and prayers, and is resting and taking care of his family. He will provide updates when he can and I am sure will pop in when he can to provide more information. I know they are worn out and exhausted
Keep Caleb and the donor and the entire family in your thoughts and prayers as they continue to heal and recover...
Ill update here in intital post when I hear more
1:36 pm Update
Just got word from Eric Caleb is doing well, the doctors are very pleased with the kidney function, but he is in need of a bit more pain management as he is pretty uncomfortable
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February 14th Update 12:40 pm (Happy Valentines Day)
Latest update from Eric
Caleb was a bit restless and uncomfortable all night, but his labs are still good and they took the bandage off his incision for the day to let it have some air. This might be the last day in the ICU before he gets moved to a regular pediatric hospital room. A lot of his care right now is still pain management, the “science project” of making sure his labwork is chemically balanced (basically making sure the kidney is functioning), and getting him moving just a little to make sure there’s no blood clotting or bed sores. His immunosuppressive drugs start today, which is something he’ll take forever to battle rejection of the kidney, but that will be new for his little body so prayers that he doesn’t get sick anytime soon. He’s getting as much rest as possible between all the doctors coming in to check things.
Keep the little man in your thoughts, they appreciate it very much
8:30 pm Update
The doctors are downgrading Caleb's needs from ICU to intermediate care at 7pm tonight. His incision is healing well, kidney still functioning appropriately, and most of his care over the next couple days will be continuing with pain
management, chemical balancing with labwork, and as much rest as he can get.... Thanks for all the thoughts and prayers
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February 16th 10:36 am update
Caleb got moved to the regular pediatric hospital floor on Friday night because he can be under regular post-surgical nursing care now. His pain levels are getting better and they’ve dropped him to just IV Tylenol for pain at this point. The doctors tested his mediport (he’s had that in for two years in his chest) to ensure it was still working well, and since it was they were able to pull the IV access from his hand, and they’ll pull the central line from his neck later today. That should help with some of the discomfort too. His incision is healing well and there’s not currently (and shouldn’t be) any concern about that. His labs still look very good and his urine output is in the expected range. His blood pressure is still high, but that’s normal for a child receiving an adult kidney because the kidney is used to being at an adult BP, so he’s on medication for that but it should improve over time and regulate. Other than that we don’t anticipate too many more daily changes, so he’ll be in the hospital until next week to rest and be monitored, and then he gets released to the house. We’ll have a pretty regimented care at home for the next six weeks and then it tapers off to be slightly more normal. So at this point it has gone as smoothly as possible and we feel incredibly blessed! Emily was released on Thursday night and is now resting at my parent’s house locally until she’s ready to make the trip back to Rochester.
Caleb got moved to the regular pediatric hospital floor on Friday night because he can be under regular post-surgical nursing care now. His pain levels are getting better and they’ve dropped him to just IV Tylenol for pain at this point. The doctors tested his mediport (he’s had that in for two years in his chest) to ensure it was still working well, and since it was they were able to pull the IV access from his hand, and they’ll pull the central line from his neck later today. That should help with some of the discomfort too. His incision is healing well and there’s not currently (and shouldn’t be) any concern about that. His labs still look very good and his urine output is in the expected range. His blood pressure is still high, but that’s normal for a child receiving an adult kidney because the kidney is used to being at an adult BP, so he’s on medication for that but it should improve over time and regulate. Other than that we don’t anticipate too many more daily changes, so he’ll be in the hospital until next week to rest and be monitored, and then he gets released to the house. We’ll have a pretty regimented care at home for the next six weeks and then it tapers off to be slightly more normal. So at this point it has gone as smoothly as possible and we feel incredibly blessed! Emily was released on Thursday night and is now resting at my parent’s house locally until she’s ready to make the trip back to Rochester.
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February 17th 3:16 pm update
Just got word from Eric that reads:
Possible complications today, tests are being run. Not sure what this means gang, but keep Caleb and the family in your thoughts and prayers. Will update when I get more information
Updated 3:20 His abdomen is filling with fluid and they are not sure why or what from. His labs are getting worse and he is in a lot of pain
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February 18th 11:21 am update :
As of this morning, Caleb’s labs have improved, and the ultrasound and CT scan didn’t show any problems. They believe the distention in his abdomen is from too many fluids, so they’ve made adjustments to his regimen. So much of the first couple weeks is finding the balance, so they believe it’ll get reabsorbed and the puffiness will go down. Since the scans were fine the doctors seem to have it limited to somewhat unconcerning reasons that are more easily solved. Part of our new normal is going through the ups and downs of the chemical balance and fluid levels, which we’ve done for 3 1/2 years, but it’s a different set of balances now that he’s got a new kidney. I guess it’s about trusting the process.
Better news this morning Continuing to think about our little buddy
Better news this morning Continuing to think about our little buddy
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February 19th 3:33 pm update
A little while ago (most of you have seen it posted by Reeb) Eric sent out a text asking for urgent prayer request, Caleb was being taken back to the OR reference a problem
I just got this update
His incision herniated below the belly button, and it was open enough that his insides were coming through a little, so he needs to be fixed immediately. He has been uncomfortable all day , possibly that spot was weakening and he could feel that? Hard to say. But then it came open and that really was a problem. It is not a hard surgery but it means anesthesia again , intubation and it is not ideal because he has been eating , so they have to be more careful. Eric's heart is breaking for his little boy as he is in so much discomfort...
Join me in saying a little prayer, or whatever means you post or pass on good thoughts for little Caleb and our buddy Eric.... Will update more when I hear more
Thanks
8:24 pm Update
Caleb was just put into the PACU , getting him settled to move him back to the intermediate care floor.... So far so good with this latest surgery.... Eric appreciates all the thoughts and prayers
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February 22 4:22 pm update
Caleb has been resting a lot in the past two days, pain is getting better managed, and he is healing ok so far from the second surgery on Tuesday. The doctors are working on his chemistry so that his nutrients
are balanced and monitoring his fluids and kidney function Hopefully he can get up soon ahd move around a little. Eric is taking his older children up after school today for a visit..
Thanks for all the thoughts and prayers...
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February 24th 5:05 pm
Putting Caleb on an antibiotic to be safe. There may be some infection starting in the wound but hard to tell just yet. Hopefully if it's an infection, this will stop it before it even gets going.
Summary: The kidney is doing well, the recovery has been a major frustration.
Summary: The kidney is doing well, the recovery has been a major frustration.
Keep Caleb and our buddy Eric in your thoughts and prayers... seems like they take one step foward and then two steps backwards.... we are praying for you and your family buddy
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February 26th 2:45 pm
After lots of ups and downs the last few days, Caleb is (what seems like finally) having a better day today. The doctors have made some pain medicine changes that we were nervous about (moving away from stronger IV style and more toward lower oral kinds), but he seems to be handling them at this point and his demeanor is much more pleasant today. The biggest surprise of the day is that he's eaten more/better today than I have ever seen in 3 years (kids with renal failure typically have no appetite, so he’s been tube fed and bottle fed a formula for his whole life!). He's had several bites of grilled cheese, a saltine cracker, and several bites of pudding all in a few minutes over lunch time. It will be a (probably long) process to get him to a typical 3-year-old’s diet, but what he's doing right here in front of us seems so "normal" that it's really weird to see (they do say appetite gets a lot more normal after a kidney transplant, but honestly, I'm shocked just to see this interest in food. I'm not foolish enough to think we won't still have some "downs," but I'll take this while it lasts! Everyone (nurses, doctors, staff) who comes in the room is surprised to see how different he is today... and he's still eating little bites right now and just asked a nurse for peanut butter. Who is this kid?! He definitely seems more comfortable today and I’m seeing my little superhero in his eyes again! I sure hope we’ve turned a corner today on this recovery..
This is the update from Eric today....The little man is slowly but surely making some progress and I know that makes Momma , Daddy , brother and sister happy.... Sending good thoughts buddy
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March 1st 3:54 pm update
CALEB IS COMING HOME