According to Ian, one of the first things that he wants to do when we get home is to play engines. This is interesting as he has all of his engines here except for two of them. He plays with them about 4 hours a day. He has such an imagination with them.
Ian has been taking meds like a champ recently again. I am keeping with the mini m&m reward and it seems to be serving us well so far. He does not care for the diflucan at all and it gives him the most trouble. From the start of the meds here at RMH, he has come far and for that I am grateful.
He had a bath last night and we got his hair washed. He didn't fight it too badly as he was able to play with his duckies.
He is still eating string cheese in mass quantities. String cheese, pretzels and chocolate chip cookies--those three things are his main stays right now. He hasn't had yogurt at all since his transplant like he used to which is odd considering he had it for every meal prior to.
We head to clinic tomorrow and Ian knows that his "big bandaid" is getting changed. He keeps asking me if it will hurt and I have tried to be honest about it. Hopefully it will go quickly and he will hold still and that we will have a nurse that he likes....miss jennifer, miss cynthia, or miss satrina are his favorites thus far. He is quite the champ at knowing what to do for triage....blood pressure, tempature, weight, height, pain scale, allergies, etc. We should have lots to report about tomorrow.....
Tuesday, January 27, 2009
Tuesday, January 20, 2009
meds day 34
So meds were a bit of a challenge today. Ian can name each of the meds he has to take and even ID them by syringe. I've stopped doing stickers and moved to giving him a mini m&m after each one. This is working well as he likes to eat them to get the taste of the med out of his mouth. His"favorite" med is actigall and least is diflucan--he will be on this for another 2 months is all.
Baths continue to be a struggle--only since the transplant has this aversion to water. I had Brett bring some rubber ducks from home this weekend to help motivate Ian and it was a bust. I did manage to clip finger and toenails last night. I an didn't like holding still but did it. We used saran wrap for his PICCline again.
He'll get his PICC line dressing changed tomorrow which should be swell.
Baths continue to be a struggle--only since the transplant has this aversion to water. I had Brett bring some rubber ducks from home this weekend to help motivate Ian and it was a bust. I did manage to clip finger and toenails last night. I an didn't like holding still but did it. We used saran wrap for his PICCline again.
He'll get his PICC line dressing changed tomorrow which should be swell.
Sunday, January 18, 2009
More Engines Day 32
Grandpa Herbst and Grandma Jenn are here for the long weekend. Today when they came they had presents for Ian. Several new books--an alligator under my bed--should be a hit given the fact that about a block from our house in SC there is a pond with an alligator in it :) They also gave Ian 4 new Thomas the Train engines!!!!! What a lucky boy! He was so excited. He got Bertie the Bus, Farmer McColl's chicken and egg cars, the aquarium cars, and.....Disel 10. Ian knows that Disel 10 is naughty. You can see the joy in Ian's face in the picture. We also went to the Atlanta Temple and got a haircut documented by pictures. It was a busy day--especially since Ian played with his new engines a ton! Thank you Grandma and Grandpa!!!!
Brett got up with Ian this AM to do prograf and let me sleep a few extra minutes. We don't have to do labs tomorrow which is nice. Ian has asked about his PICC line dressing and we are prepping him for Wendesday and the dressing change that will take place. Should be loads of fun!
Tomorrow Brett will go home and I know Ian will be sad about that. Maybe I should have saved one of the engines for a special suprise tomorrow......hindsight now.
Saturday, January 17, 2009
A month later Day 31
Wow! I can't believe that we have made it a month out from transplant. The first month is a big milestone . The next milestone is 3 months, then a year. So in honor of the month, I thought I would do a brief summary recap.....
We got the call to come to Atlanta on December 16th. I drove with both kids to get here by 4pm leaving around 10am from Charleston. We made it! Ian didn't have his transplant until the 17th and hte surgery lasted about 9 hours. He received a full liver and was fully closed after the transplant with about 30 staples. Brett stayed with Ian the whole time he was in the hospital and I visited between Livia feedings. He was in PICU for 12 days, transplant floor for 7 days and at the Ronald McDonald House for 13 days thus far. He is currently on 9 medications which he takes the majority of them twice a day. He has a PICC line (like a semi-permanant IV site) that he has had for about 3 weeks for lab draws. He is currently on a T/Th lab schedule (but was MWF until this past Friday). We go to clinic (a big doctors visit at the hospital) every Wednesday afternoon. He has had his staples out for about a week now and all of the steri-strips are off now. He has said the best part of the hospital was coming to RMH.
We are so grateful for all those who have made Ian's transplant possible in any way--the doctors and medical staff, friends and family, etc. Ian loves the notes and gifts--thank you so much for the thoughtfulness and generosity in showering him with love. Thank you and may Heavenly Father bless each of you!
We got the call to come to Atlanta on December 16th. I drove with both kids to get here by 4pm leaving around 10am from Charleston. We made it! Ian didn't have his transplant until the 17th and hte surgery lasted about 9 hours. He received a full liver and was fully closed after the transplant with about 30 staples. Brett stayed with Ian the whole time he was in the hospital and I visited between Livia feedings. He was in PICU for 12 days, transplant floor for 7 days and at the Ronald McDonald House for 13 days thus far. He is currently on 9 medications which he takes the majority of them twice a day. He has a PICC line (like a semi-permanant IV site) that he has had for about 3 weeks for lab draws. He is currently on a T/Th lab schedule (but was MWF until this past Friday). We go to clinic (a big doctors visit at the hospital) every Wednesday afternoon. He has had his staples out for about a week now and all of the steri-strips are off now. He has said the best part of the hospital was coming to RMH.
We are so grateful for all those who have made Ian's transplant possible in any way--the doctors and medical staff, friends and family, etc. Ian loves the notes and gifts--thank you so much for the thoughtfulness and generosity in showering him with love. Thank you and may Heavenly Father bless each of you!
Aunt Bean's House Day 30
Ian had labs done by Miss Cynthia today and he was a champ for her. It was our fastest time yet dispite Ian walking extra slow from the parking area to the butterfly floor. On the way back, we got a wagon to expedite things as a trip to Aunt Bean's was pending.
He took meds pretty good as he wanted to hustle to get to Aunt Beans. The first thing he did at Aunt Beans was take off his shoes and socks and walk around barefoot on some carpet. He liked their foosball table and the toys in general. Bathtub paints were a highlight.
He helped me to get his line flushed and nighttime meds were also taken fairly well as he knew that Daddy was coming and wanted to take them like a champ! Right now, we watch Wheel of Fortune "The Letter Show" and Jeopardy as part of our nightly routine after dinner thanks to Grandma Meldrum. His prograf time is 8pm so that helps to pass the time.
Ian went to bed late trying to stay up for Brett but went to sleep before his arrival (at 11pm). He knows that Daddy will be here for breakfast tomorrow which should be a great day......
He took meds pretty good as he wanted to hustle to get to Aunt Beans. The first thing he did at Aunt Beans was take off his shoes and socks and walk around barefoot on some carpet. He liked their foosball table and the toys in general. Bathtub paints were a highlight.
He helped me to get his line flushed and nighttime meds were also taken fairly well as he knew that Daddy was coming and wanted to take them like a champ! Right now, we watch Wheel of Fortune "The Letter Show" and Jeopardy as part of our nightly routine after dinner thanks to Grandma Meldrum. His prograf time is 8pm so that helps to pass the time.
Ian went to bed late trying to stay up for Brett but went to sleep before his arrival (at 11pm). He knows that Daddy will be here for breakfast tomorrow which should be a great day......
Thursday, January 15, 2009
Day 29 So Cold....
Today was really cold so we didn't go anywhere today...not even to Brusters for a half price banana split.
Ian took his meds relatively well today both morning and night. He has more meds to take in the morning than the evening. It seems to be working for me to leave or Grandma to leave the room for him to suprise us with empty syringes. We'll do whatever it takes. The three month post transplant mark will mean less meds for Ian which will be much rejoicing on my part.
Today was also bath day and Ian fussed about that. Somehow he does not like baths now and I'm not sure why. I managed to get him scrubbed as best as possible and even got his hair washed. I used a plastic grocery bag to cover his PICC line this time as it cannot get wet. Last time I used saran wrap.
Ian continues to have a healthy appetite--the steroids are in part the reason behind this. He loves pretzels and string cheese right now eating about 3 string cheeses a day. I have to go to the store tomorrow to buy some more. He is eating about 5 smaller meals a day rather than 3 bigger ones. I continue to push fluid on him.
I did some preschool activities with him today. I need to refresh him on some of the letters. He gets C and G confused sometiemes as well as Y and K and N and M. I'd like to see him be able to ID all the lower case letters by the end of the year without the capital letter next to it. We worked on writing his name as well by "connecting dot one to dot two".
We head into labs tomorrow morning and are hopeful that we don't hear from the transplant team. It shouldn't be much trauma as it is just labs from his PICC line. We're also looking forward to Brett's arrival tomorrow night. On to day 30.....
Ian took his meds relatively well today both morning and night. He has more meds to take in the morning than the evening. It seems to be working for me to leave or Grandma to leave the room for him to suprise us with empty syringes. We'll do whatever it takes. The three month post transplant mark will mean less meds for Ian which will be much rejoicing on my part.
Today was also bath day and Ian fussed about that. Somehow he does not like baths now and I'm not sure why. I managed to get him scrubbed as best as possible and even got his hair washed. I used a plastic grocery bag to cover his PICC line this time as it cannot get wet. Last time I used saran wrap.
Ian continues to have a healthy appetite--the steroids are in part the reason behind this. He loves pretzels and string cheese right now eating about 3 string cheeses a day. I have to go to the store tomorrow to buy some more. He is eating about 5 smaller meals a day rather than 3 bigger ones. I continue to push fluid on him.
I did some preschool activities with him today. I need to refresh him on some of the letters. He gets C and G confused sometiemes as well as Y and K and N and M. I'd like to see him be able to ID all the lower case letters by the end of the year without the capital letter next to it. We worked on writing his name as well by "connecting dot one to dot two".
We head into labs tomorrow morning and are hopeful that we don't hear from the transplant team. It shouldn't be much trauma as it is just labs from his PICC line. We're also looking forward to Brett's arrival tomorrow night. On to day 30.....
Wednesday, January 14, 2009
Four Weeks Later Day 28
Four weeks ago, Ian had his transplant. December 17th will be his liver day and we will celebrate it each year with a cake, doing something special, and giving back to transplants/CHOA in some way. We are so grateful!
Today we had labs in the morning. Ian did well getting "triaged" (which is being weighed, blood pressure, and other vitals taken). Then the nurses asked me when Ian's PICC line dressing had last been changed and I told them that it hadn't. Here is where the trouble ensued.....it needed to be changed weekly to avoid infection and his had been on for two weeks already. EEEK! For those following the blog, you will know that the tape removal process for Ian has not been pleasant. This was particularly bad because 1) I was solo and 2) I had not prepared Ian for this at all not knowing myself htat it would happen. What to do...what could I do but help hold my squirming, screaming, crying, hysterical son and try to calm him and talk to him and help him not focus on this big huge band-aid that was coming off his arm. The nurse was awesome and she did use a uni-solve pad but it was still trauma. He made it through it though. I dread next Wednesday already though.
Clinic was good and super short--always a plus. He was seen by Dr. Pillan, Dr. Romero, Dr. Mee, and Miss Jill (whom he thinks gave him his new liver). He hasn't and won't at this point--need IV fluid as he is taking enough in orally. I keep buying pedilyte and other liquids to keep pushing on his. Transplant kids need extra amounts of fluids and they are definitely being pushed on Ian. His labs are wonderful and his prograf level has not changed at all for almost a week. That is good as it needs to remain under control for us to get the green light to go home evenutally. I am hopeful that we will be able to go home at the end of january but am prepared for longer if needed.
His current lab schedule is on a M-W-F shedule for labs (about 8am each of those days--in his PJs). Based on this Friday's labs, we may or may not get switched to a T/Th schedule next week. After the two day a week schedule it is down to once a week....which then we would start thinking about removal of his PICC line. All the docs from clinic today think he is doing well and that his color is great.
When we get home we may or may not be set up with home health care in terms of future labs and flushing his line--I am flushing and doing the hep lock on it now twice a day. He is improving with his medicine taking with tonight being the BEST ever! He has lost almost all the steri-strips on his incisions now. I have been finding them at random places at our suite at the RMH. Brett will be coming this weekend and staying until Monday afternoon (it is MLK holiday for his work). Having mom has been a huge blessing and help--thank you Grandma (and Grandpa for sharing her!!!)
We plan to go to Brusters ice cream parlor tomorrow for a banana split as a little treat! Should be a nice day tomorrow after today's morning lab experience.
Today we had labs in the morning. Ian did well getting "triaged" (which is being weighed, blood pressure, and other vitals taken). Then the nurses asked me when Ian's PICC line dressing had last been changed and I told them that it hadn't. Here is where the trouble ensued.....it needed to be changed weekly to avoid infection and his had been on for two weeks already. EEEK! For those following the blog, you will know that the tape removal process for Ian has not been pleasant. This was particularly bad because 1) I was solo and 2) I had not prepared Ian for this at all not knowing myself htat it would happen. What to do...what could I do but help hold my squirming, screaming, crying, hysterical son and try to calm him and talk to him and help him not focus on this big huge band-aid that was coming off his arm. The nurse was awesome and she did use a uni-solve pad but it was still trauma. He made it through it though. I dread next Wednesday already though.
Clinic was good and super short--always a plus. He was seen by Dr. Pillan, Dr. Romero, Dr. Mee, and Miss Jill (whom he thinks gave him his new liver). He hasn't and won't at this point--need IV fluid as he is taking enough in orally. I keep buying pedilyte and other liquids to keep pushing on his. Transplant kids need extra amounts of fluids and they are definitely being pushed on Ian. His labs are wonderful and his prograf level has not changed at all for almost a week. That is good as it needs to remain under control for us to get the green light to go home evenutally. I am hopeful that we will be able to go home at the end of january but am prepared for longer if needed.
His current lab schedule is on a M-W-F shedule for labs (about 8am each of those days--in his PJs). Based on this Friday's labs, we may or may not get switched to a T/Th schedule next week. After the two day a week schedule it is down to once a week....which then we would start thinking about removal of his PICC line. All the docs from clinic today think he is doing well and that his color is great.
When we get home we may or may not be set up with home health care in terms of future labs and flushing his line--I am flushing and doing the hep lock on it now twice a day. He is improving with his medicine taking with tonight being the BEST ever! He has lost almost all the steri-strips on his incisions now. I have been finding them at random places at our suite at the RMH. Brett will be coming this weekend and staying until Monday afternoon (it is MLK holiday for his work). Having mom has been a huge blessing and help--thank you Grandma (and Grandpa for sharing her!!!)
We plan to go to Brusters ice cream parlor tomorrow for a banana split as a little treat! Should be a nice day tomorrow after today's morning lab experience.
Tuesday, January 13, 2009
A trip to PDK Airport Day 26
Ian did pretty well at taking meds today--mainly because a trip to the PDK airport to see planes and helicopters was on the line. We saw several small planes land and take off and even 2 helicopters. We couldn't get to the part where the helicopters were really coming and going but we managed to see two which was the highlight for Ian. "Just like Harold" was his quote. He played a little on the playground area. I had gloves on him for the cold and germ barrier purposes. We were planning to eat lunch there too but ended up sitting in the car while Ian ate pretzels as we watched the planes come and go. PDK is a special airport to us as it is where we would have landed four weeks ago today had our angel flight worked out--it was too foggy in Charleston when we got the call so I had to drive. I posted a picture of the outing on my blog.
We had a great outing overall. Something to break up the monotony of staying inside all the time. I am grateful that it is not summer in many ways as it would be hard not to be out and about more. We may try to go to Target tomorrow--complete with gloves again, inside the cart rules, and a breathing mask (it has mickey mouse and other characters on it so I am hopeful it will not be a struggle).
I flushed Ian's line this AM. I'm doing it twice a day and usually it is in the AM and PM unless it is a lab day and then I personally only flush it once. I had Ian help me open the syringes and hand me his the end of his line, etc. which he seems to like being part of the process.
Labs are tomorrow and Grandma and Livia will be coming with us for clinic. I anticipate having some good updates tomorrow--hopefully :)
We had a great outing overall. Something to break up the monotony of staying inside all the time. I am grateful that it is not summer in many ways as it would be hard not to be out and about more. We may try to go to Target tomorrow--complete with gloves again, inside the cart rules, and a breathing mask (it has mickey mouse and other characters on it so I am hopeful it will not be a struggle).
I flushed Ian's line this AM. I'm doing it twice a day and usually it is in the AM and PM unless it is a lab day and then I personally only flush it once. I had Ian help me open the syringes and hand me his the end of his line, etc. which he seems to like being part of the process.
Labs are tomorrow and Grandma and Livia will be coming with us for clinic. I anticipate having some good updates tomorrow--hopefully :)
Monday, January 12, 2009
Labs Day 25
Ian and I made the trip in for labs today. I made instant oatmeal for him to eat in teh waiting area. It was a long wait this AM so I'm glad we had some food to pass the time. I had to wake him up to leave this AM and just let him wear his PJ's instead of fighting on getting dressed. The nurse that took his blood has done it the past couple of times and was really good letting Ian open up the syringes to flush his line, etc. Ian loved that part and I will use it tonight when I need to flush his line again. We are needing to flush it twice a day and I have been trained to do it. I also got new supplies for it today at the hospital as we were running low but I anticipate being "put" on home health for delivery of such supplies for his PICC line. I'm also looking into becoming a CNA to hopefully be able to draw his labs directly instead of trekking to the lab--we'll see if that can actually happen though.
I tried this AM to hide Ian's meds in yogurt and that was NOT a success at all. The yogurt wasn't hte usual creamy goodness of Yoplait but a Lite Kroger brand which I think heavily played into the failure. I ate some too and must admit it was not great stuff. I tasted Ian's and he was right--it was yucky. He said that it burned. So my idea of yogurt wasn't that great. Ian ended up taking a re-dosed round and earned more thomas stickers. The prograf isn't a problem which is nice as that is the one he'll have to take forever.
Some of Ian's steri-strips or special bandaids have come off and I've saved one--why I'm not sure but I did. More will come off tomorrow at bath I'm sure.
We didn't get a call from "Miss Jill" to come back to the hospital for IV fluid or to adjust his prograf level which is huge. Yeah Ian. The pedilyte must be working a bit.
On to day 26.....
I tried this AM to hide Ian's meds in yogurt and that was NOT a success at all. The yogurt wasn't hte usual creamy goodness of Yoplait but a Lite Kroger brand which I think heavily played into the failure. I ate some too and must admit it was not great stuff. I tasted Ian's and he was right--it was yucky. He said that it burned. So my idea of yogurt wasn't that great. Ian ended up taking a re-dosed round and earned more thomas stickers. The prograf isn't a problem which is nice as that is the one he'll have to take forever.
Some of Ian's steri-strips or special bandaids have come off and I've saved one--why I'm not sure but I did. More will come off tomorrow at bath I'm sure.
We didn't get a call from "Miss Jill" to come back to the hospital for IV fluid or to adjust his prograf level which is huge. Yeah Ian. The pedilyte must be working a bit.
On to day 26.....
Sunday, January 11, 2009
Stickers Day 25
Ian is in love with fruity cheerios. We had several self serve containers saved up from the hospital and they are almost gone. Ian thinks they are fruit loops---which I am fine with letting him belive that.
Ian played with Grandma yesterday kicking and throwing a ball. Excellent physical therapy for him.
The sticker chart for meds is so far a moderate success. We'll see if it can offically be called a success in a few days. I may move to mixing meds in yogurt if there isn't big improvement.
Ian had noodles last night at the community dinner here at RMH. He tried to twist them up on his fork and get them in his mouth which was most hilarious. He didn't really eat a lot so he had a string cheese when we came back upstairs. We tried a bath last nigth with his PICC sleeve but the sleeve as too big so I ended up tying a target bag around his arm with the PICC line and holding it the whole time. I got his hair washed last night and nails trimmed too which were huge feats.
His prograf level has changed again so we'll see what his new lab levels are tomorrow. I bought pedilyte yesterday to try to rehyrate Ian so that hopefully we won't have to go in to the hospital for IV fluid.
Ian played with Grandma yesterday kicking and throwing a ball. Excellent physical therapy for him.
The sticker chart for meds is so far a moderate success. We'll see if it can offically be called a success in a few days. I may move to mixing meds in yogurt if there isn't big improvement.
Ian had noodles last night at the community dinner here at RMH. He tried to twist them up on his fork and get them in his mouth which was most hilarious. He didn't really eat a lot so he had a string cheese when we came back upstairs. We tried a bath last nigth with his PICC sleeve but the sleeve as too big so I ended up tying a target bag around his arm with the PICC line and holding it the whole time. I got his hair washed last night and nails trimmed too which were huge feats.
His prograf level has changed again so we'll see what his new lab levels are tomorrow. I bought pedilyte yesterday to try to rehyrate Ian so that hopefully we won't have to go in to the hospital for IV fluid.
Saturday, January 10, 2009
Moon Sand Day 24
Today Ian and Grandma Meldrum played with some Moon Sand here at Ronald's House. It is our first exposure to moon sand and I must say it is pretty neat stuff. Ian said it was like crumbs and I must agree with him.
Ian had to go back to the hosptial on Day 23, Friday for IV fluids. Brett took him while I stayed at the RMH with Livia. The rooms are small for all of us so we did the divide and conquer motif again. Ian's lab values overall are back to where they need to be except for showing some dehydration--hence the need for IV fluid.
Brett is back in Charleston and so I'll be the person to take Ian to labs next week. I am setting my alarm each day as his prograf time cannot be missed--I didn't sleep well last night thinking that I had overslept and missed it. He takes his prograf really well which is nice. He can swallow a tic tac and that is the size of a prograf pill. We are going to continue to work on it to be sure but we are thrilled at his wonderful progress on that side of things.
His PICC line sleeve arrived yesterday and we'll be using it tonight to give him a real bath--hopefully. He needs it badly. The shower head is a movable one here so we've been able to at least "hose him off" while he stands in the tub.
On to day
Ian had to go back to the hosptial on Day 23, Friday for IV fluids. Brett took him while I stayed at the RMH with Livia. The rooms are small for all of us so we did the divide and conquer motif again. Ian's lab values overall are back to where they need to be except for showing some dehydration--hence the need for IV fluid.
Brett is back in Charleston and so I'll be the person to take Ian to labs next week. I am setting my alarm each day as his prograf time cannot be missed--I didn't sleep well last night thinking that I had overslept and missed it. He takes his prograf really well which is nice. He can swallow a tic tac and that is the size of a prograf pill. We are going to continue to work on it to be sure but we are thrilled at his wonderful progress on that side of things.
His PICC line sleeve arrived yesterday and we'll be using it tonight to give him a real bath--hopefully. He needs it badly. The shower head is a movable one here so we've been able to at least "hose him off" while he stands in the tub.
On to day
Thursday, January 8, 2009
Day 22 Still Ill
So Ian isn't himself 100% yet but he is definitely doing better. He was almost readmitted to the hospital yesterday due to low fluids and his liver numbers being off. He had to have labs again today and so far no call to come in for fluids or to be admitted and it is 2pm.
Germs are our enemy now--not like they weren't before but even more so now. In telling Ian about not touching things that are germy, etc I described that germs make us sick and sick can me coughing, a runny nose, spots, a rash, etc. Ian stopped me right there and piped up saying htat "Mr. Puppy has spots". Oh dear! What had I gotten myself into? I had to explain that Mr. Puppy's spots were not because he was sick or germy, etc. Very clever and it made me chuckle at how clever Ian was. We're at half a bottle of germ-x since monday--we use it lots!
The staple removal was trauma as I expected. Having staples removed from my c-section just 2 months ago I knew it wans't entirely pleasant. Ian got a relaxation med to help. He now has steri-stripes or special band-aides on his "letter T".
He continues to fight the meds unless we threaten a call to Santa. We're brainstorming how we can combat that one and ideas or suggestions would be helpful!
Germs are our enemy now--not like they weren't before but even more so now. In telling Ian about not touching things that are germy, etc I described that germs make us sick and sick can me coughing, a runny nose, spots, a rash, etc. Ian stopped me right there and piped up saying htat "Mr. Puppy has spots". Oh dear! What had I gotten myself into? I had to explain that Mr. Puppy's spots were not because he was sick or germy, etc. Very clever and it made me chuckle at how clever Ian was. We're at half a bottle of germ-x since monday--we use it lots!
The staple removal was trauma as I expected. Having staples removed from my c-section just 2 months ago I knew it wans't entirely pleasant. Ian got a relaxation med to help. He now has steri-stripes or special band-aides on his "letter T".
He continues to fight the meds unless we threaten a call to Santa. We're brainstorming how we can combat that one and ideas or suggestions would be helpful!
Wednesday, January 7, 2009
Ill Day 20 and 21
Ian had a rough night last night in terms of vomitting and potty mishaps. He isn't well....saying his tummy hurts and he is cold. We go to clinic today to hopefully get some resolution.
Today is staple removal day....we'll see how that goes. More after our clinic visit at 1pm
Today is staple removal day....we'll see how that goes. More after our clinic visit at 1pm
Tuesday, January 6, 2009
Day 19 at the Ronald McDonald House
We got the news that we were able to be discharged at Doctors rounds this morning (around 10:20am). Ian wasn't even in the room as he was out for a walk with Grandma to see the fish in the aquarium. Ian had physical therapy that morning--a treasure hunt walk to get all the pieces to a pirate Mr. Potato Head. Very clever. It helped him walk, bend, squat, etc. all things to help him strengthen his muscles again.
We made it the Ronald McDonald House or Ronald McDonald's House to Ian (as in the place where Ronald lives). It is brand new as of June 2008 and is wonderful.
Ian was a GREAT eater last night. We had chicken casserole and he ate a decent portion and then was still hungry. He ate chocolate pudding, a granola bar, and cheez-it crackers. Yeah, the steroids are kicking in for him.
It was our first day doing meds solo....and he took them like a champ overall as usual. There is no rail on Ian's bed in the RM house but it is a queen size bed. We placed him in the center hoping that he won't fall out after making a barrier of ever sturdy pillows :)
Ian will return to clinic here in Atlanta on Wednesday for labs and to get those staples out! Very exciting day!
We made it the Ronald McDonald House or Ronald McDonald's House to Ian (as in the place where Ronald lives). It is brand new as of June 2008 and is wonderful.
Ian was a GREAT eater last night. We had chicken casserole and he ate a decent portion and then was still hungry. He ate chocolate pudding, a granola bar, and cheez-it crackers. Yeah, the steroids are kicking in for him.
It was our first day doing meds solo....and he took them like a champ overall as usual. There is no rail on Ian's bed in the RM house but it is a queen size bed. We placed him in the center hoping that he won't fall out after making a barrier of ever sturdy pillows :)
Ian will return to clinic here in Atlanta on Wednesday for labs and to get those staples out! Very exciting day!
Sunday, January 4, 2009
I'm a sunbeam Day 18
Today is Ian's first day of sunbeams--he of course couldn't go and won't for a while but nonetheless is a sunbeam. I created (with Grandma's help) a sunbeam "sticker" for him and took a picture. Our church time changed to 1pm today as well.
Ian did well with his IV bolus last night so he doesn't need another round today. His prograf level is back towards the normal level so it is looking more likely that tomorrow could be our day to leave the "butterfly hospital". (They have taken down all the Christmas decorations now).
Ian fought his meds a bit last night but overall is a champ at taking them. We are helping him to drink lots of water so we can avoid the NG tube needing to come back into the picture.
The steroids are definitely increasing Ian's appetite--he ate a string cheese, half a yogurt container, chocolate milk, 3 apple slices, two handfuls of trail mix, half a bag of cheetos, and half a rice crispie treat today for lunch. The doctors told us it would make him "eat like a horse". We are going to need to watch his weight gain as that could become a problem.
We are going to attempt to take off more tape goo today as well as get his hair washed in the tub--Brett will hold him while I spray him with a movable shower head. He cannot get wet still (cannot do so until the staples come out) and his PICC line sleeve cover isn't here yet so we want to be a bit more cautious of water.
I was silly and didn't pack any short sleeve shirts for Ian other than PJ shirts so I'll be going to none other htan Target to get one or two. The short sleeves will help getting labs drawn from the line easier than hiking up a long sleeve over the line. The line is covered iwth a stretchy gauze "sleeve" to help it from dangling everywhere and getting caught on things.
Right now, Ian's getting his vitals taken and it isn't his favorite thing. He squeaks a bit and I think it is for show more than anything else.
We'll try to work on helping him to make good sunbeam choices :)
Ian did well with his IV bolus last night so he doesn't need another round today. His prograf level is back towards the normal level so it is looking more likely that tomorrow could be our day to leave the "butterfly hospital". (They have taken down all the Christmas decorations now).
Ian fought his meds a bit last night but overall is a champ at taking them. We are helping him to drink lots of water so we can avoid the NG tube needing to come back into the picture.
The steroids are definitely increasing Ian's appetite--he ate a string cheese, half a yogurt container, chocolate milk, 3 apple slices, two handfuls of trail mix, half a bag of cheetos, and half a rice crispie treat today for lunch. The doctors told us it would make him "eat like a horse". We are going to need to watch his weight gain as that could become a problem.
We are going to attempt to take off more tape goo today as well as get his hair washed in the tub--Brett will hold him while I spray him with a movable shower head. He cannot get wet still (cannot do so until the staples come out) and his PICC line sleeve cover isn't here yet so we want to be a bit more cautious of water.
I was silly and didn't pack any short sleeve shirts for Ian other than PJ shirts so I'll be going to none other htan Target to get one or two. The short sleeves will help getting labs drawn from the line easier than hiking up a long sleeve over the line. The line is covered iwth a stretchy gauze "sleeve" to help it from dangling everywhere and getting caught on things.
Right now, Ian's getting his vitals taken and it isn't his favorite thing. He squeaks a bit and I think it is for show more than anything else.
We'll try to work on helping him to make good sunbeam choices :)
Saturday, January 3, 2009
Medicine Change DAy 17
So today we aren't going to be discharged again. It looks like Monday at the earliest. The doctors are trying to get his prograf level to what it needs to be. They've cut it in half at this point.
Ian has a new mesh sleeve on his PICC line and it is longer than the last. It seems to be working better. I'm sure he could wear long sleeves but short sleeves are much less of a hassle with the tubes, etc.
Ian got some IV fluid today to boost his "moisture" content. He needs to drink more.....transplant patients in general need to have more water intake. We are trying to limit the amount of sugar, etc. so I bought a new cup for Ian at Target today--is a flip straw type to avoid spills, etc. We'll be pushing water on him as much as possible. He'll get another round of IV fluid later today. His prograf level is still not back from the lab--I'll ask about it after this post.
Ian has enjoyed holding his sister and likes to determine if she needs a diaper change. I took some cute pictures of the two of them earlier today but am having trouble getting them downloaded from the camera on to this laptop.
Aunt Bean is visiting today and Ian is thrilled. He hasn't seen her in about two weeks at this point. Her girls aren't going to be able to see Ian just because I am being hyper vigilant about germs, etc.
I am going to try to get more of the tape goo off of Ian today--yesterday wasn't fully successful in that endeavor. Ian likes to feel his bumpy staples and we have to tell him not to pick at them--it is ok to touch just not pick them. He should get those out on Wednesday--we hope.
Ian has a new mesh sleeve on his PICC line and it is longer than the last. It seems to be working better. I'm sure he could wear long sleeves but short sleeves are much less of a hassle with the tubes, etc.
Ian got some IV fluid today to boost his "moisture" content. He needs to drink more.....transplant patients in general need to have more water intake. We are trying to limit the amount of sugar, etc. so I bought a new cup for Ian at Target today--is a flip straw type to avoid spills, etc. We'll be pushing water on him as much as possible. He'll get another round of IV fluid later today. His prograf level is still not back from the lab--I'll ask about it after this post.
Ian has enjoyed holding his sister and likes to determine if she needs a diaper change. I took some cute pictures of the two of them earlier today but am having trouble getting them downloaded from the camera on to this laptop.
Aunt Bean is visiting today and Ian is thrilled. He hasn't seen her in about two weeks at this point. Her girls aren't going to be able to see Ian just because I am being hyper vigilant about germs, etc.
I am going to try to get more of the tape goo off of Ian today--yesterday wasn't fully successful in that endeavor. Ian likes to feel his bumpy staples and we have to tell him not to pick at them--it is ok to touch just not pick them. He should get those out on Wednesday--we hope.
Still here day 16
Ian's prograf level hasn't normalized yet so we can't be discharged. His dose was cut in half today hoping it will make a difference. Honestly, I expect to be here over the weekend.
My mom and I were able to get some of the major tape goo off of Ian today but not without a fight from him. It is fierce stuff and he hates it. We need to do it somehow sneaky so if anyone has ideas about this, please pass them on.
We got our discharge meds today--a huge sack of them. He has 9 to take right now. I'm ok with the meds it's keeping Ian germ free that makes me a bit worried. He is a boy afterall who is only three. Brett thinks we should buy stock in purell and I agree with him. A dear friend made a sign for us in our old home that says "Please take off your shoes and stay awhile" I think I need a new one that says "please take off your shoes, use some germ-x and stay awhile". We plan to have germ-x available at all entry points to the house. I personally don't think it is a bad idea to hang holders for it on the walls but that is just me.
Ian has had cheese pizza for about the last 5 meals or so (less breakfast). He amazes me at how frequently he can eat the same thing. I would be sick of it. He had some sticky popcorn last night as well which was a real treat for Ian. Sticky popcorn is a grandpa meldrum speciality.
We are hopeful that tomorrow will be our discharge day....
My mom and I were able to get some of the major tape goo off of Ian today but not without a fight from him. It is fierce stuff and he hates it. We need to do it somehow sneaky so if anyone has ideas about this, please pass them on.
We got our discharge meds today--a huge sack of them. He has 9 to take right now. I'm ok with the meds it's keeping Ian germ free that makes me a bit worried. He is a boy afterall who is only three. Brett thinks we should buy stock in purell and I agree with him. A dear friend made a sign for us in our old home that says "Please take off your shoes and stay awhile" I think I need a new one that says "please take off your shoes, use some germ-x and stay awhile". We plan to have germ-x available at all entry points to the house. I personally don't think it is a bad idea to hang holders for it on the walls but that is just me.
Ian has had cheese pizza for about the last 5 meals or so (less breakfast). He amazes me at how frequently he can eat the same thing. I would be sick of it. He had some sticky popcorn last night as well which was a real treat for Ian. Sticky popcorn is a grandpa meldrum speciality.
We are hopeful that tomorrow will be our discharge day....
Friday, January 2, 2009
Day 15 New Years Day
Ian got his neck IV line out today. The biggest trauma was the tape removal--suprise suprise. It had to be done by a doctor as there were two stitches to remove with it. He did well with it all things considered. Dr. Vos did the removal and in some ways it was good it was not Dr. Romero so he still holds Dr. Romero as his favorite.
Doctors are thinking that Ian can be discharged tomorrow, Friday. We are very excited but know that any little thing can change that--fevers, meds, vomiting, etc. Ian got a bag of meds to prep us for our discharge. Our transplant coordinator told us we would have a training session on them tomorrow before discharge.
Ian got to play in the playroom here on the floor today. It is nice as it is only for the transplant kids so I feel safe in the level of germs, etc. He loved the magnetic sand table. I make him wear slippers to the room which he still fights me on a bit--I don't want him walking around a hospital without anything on his feet.
Ian is still eating well and is sleeping fairly well. He is doing better with some of the potty issues we were having as well. We all watched some football bowl games in his room and he seemed to like that.
So far, it is a great new year!
Doctors are thinking that Ian can be discharged tomorrow, Friday. We are very excited but know that any little thing can change that--fevers, meds, vomiting, etc. Ian got a bag of meds to prep us for our discharge. Our transplant coordinator told us we would have a training session on them tomorrow before discharge.
Ian got to play in the playroom here on the floor today. It is nice as it is only for the transplant kids so I feel safe in the level of germs, etc. He loved the magnetic sand table. I make him wear slippers to the room which he still fights me on a bit--I don't want him walking around a hospital without anything on his feet.
Ian is still eating well and is sleeping fairly well. He is doing better with some of the potty issues we were having as well. We all watched some football bowl games in his room and he seemed to like that.
So far, it is a great new year!
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