Jimmie is still struggling. He's been puking and having diarrhea for over 24 hours now. He's not having very many wet diapers and Rachael is concerned. She will take him to see Dr. S at 11:30am. Dr. S. will check him for an ear infection and a tube site infection . . . Rachael does not suspect either. She really feels he's caught the stomach bug that's been going around. Dr. S. will also make sure he's not showing signs of dangerous dehydration.
Pray for Jimmie! I'll update this evening. We are really hoping for NO hospitalization.
Love,
Amber
Wednesday, February 3, 2010
Tuesday, February 2, 2010
Stomach Flu
Jimmie has the stomach flu. )-: He started throwing up last night around 10:30pm and he either threw up or dry heaved every hour until about 3am. Rachael started his 2am feed and after 8mls he started retching so she stopped it. She has been concerned about dehydration so she's been offering him water with an electrolyte powder in it and "lo and behold" our little man has been drinking it! He's been taking it from a soft tipped sippy cup. He's kind of chewing on it more than sucking, but Rachael can tell he is swallowing and he's taken in about 3/4ths of the cup!
Rachael said he has been resting fairly peacefully for a while now so we are hoping the worst is over. Please pray for our little Jimmie Jim Jim . . .
Love,
Amber
Rachael said he has been resting fairly peacefully for a while now so we are hoping the worst is over. Please pray for our little Jimmie Jim Jim . . .
Love,
Amber
Monday, February 1, 2010
Determined
I've had lots of work with pressing deadlines related to the dance studio, Rachael too- we are busy busy busy. Jimmie is doing great! He is teething, his appetite for solids is "up and down" right now and he has had days where he's irritable and not sleeping well.
There is still one inflamed looking red spot at the sight of his g-tube. Pray for that spot to heal.
Jimmie hung out with Ma and Pa yesterday morning while Rachael and Justin were at church. I took my kiddos and we went down to visit. Mom had created a huge play pin in the living room by moving the furniture in a way the completely boxed Jimmie in! He is so busy and he crawls SO FAST. I mean seriously fast. He was obsessed with an RCA chord that was plugged into the tv. We tried "noooo Jimmie", we tried distraction and finally Pa unplugged the chord and hid it. Jimmie was determined. He is one determined little boy. He gets this hilarious look on his face where he purses his lips and knits his eyebrows and then just goes for what he wants. He was intimidating my 2 1/2 year old daughter when she had a toy he was interested in. 0-: He wasn't mean about it just . . . well- "determined!!!" He is pretty amazing. He's like 14 pounds and a serious presence in the room. He will be walking VERY SOON. That is going to look hilarious. I'm sure most of us have not seen such a tiny child walking around.
At one point Jimmie crawled over to me and pushed himself up to standing on one hand let go and just stood there. We all cheered and he looked so pleased with himself. I sat back and held out my hands and tried to coax him into taking a step, but he just leaned forward grabbing at me and fell into my arms. Then I hugged and kissed him, pulled back and looked and he was smiling so big. I asked him if I could have kisses and he leaned right in and gave me a big slobbery kiss on the cheek. Awwwwww he really is the sweetest little thing.
We have had a lot of questions recently about exactly what and how Jimmie is eating so we are planning a post all about that. Coming soon . . . (-:
Love,
Amber
There is still one inflamed looking red spot at the sight of his g-tube. Pray for that spot to heal.
Jimmie hung out with Ma and Pa yesterday morning while Rachael and Justin were at church. I took my kiddos and we went down to visit. Mom had created a huge play pin in the living room by moving the furniture in a way the completely boxed Jimmie in! He is so busy and he crawls SO FAST. I mean seriously fast. He was obsessed with an RCA chord that was plugged into the tv. We tried "noooo Jimmie", we tried distraction and finally Pa unplugged the chord and hid it. Jimmie was determined. He is one determined little boy. He gets this hilarious look on his face where he purses his lips and knits his eyebrows and then just goes for what he wants. He was intimidating my 2 1/2 year old daughter when she had a toy he was interested in. 0-: He wasn't mean about it just . . . well- "determined!!!" He is pretty amazing. He's like 14 pounds and a serious presence in the room. He will be walking VERY SOON. That is going to look hilarious. I'm sure most of us have not seen such a tiny child walking around.
At one point Jimmie crawled over to me and pushed himself up to standing on one hand let go and just stood there. We all cheered and he looked so pleased with himself. I sat back and held out my hands and tried to coax him into taking a step, but he just leaned forward grabbing at me and fell into my arms. Then I hugged and kissed him, pulled back and looked and he was smiling so big. I asked him if I could have kisses and he leaned right in and gave me a big slobbery kiss on the cheek. Awwwwww he really is the sweetest little thing.
We have had a lot of questions recently about exactly what and how Jimmie is eating so we are planning a post all about that. Coming soon . . . (-:
Love,
Amber
Tuesday, January 26, 2010
Follow Up
This morning brought Jimmie waking up with his g-tube site crusty and Rachael very frustrated that she didn't know how to clean it, if she should turn it, if there were stitches needing to come out etc... So she called the surgeon's office again and the nurse and Jimmie's surgeon agreed with Rachael and were fairly frustrated that nobody had gone over all of this with Rachael during Jimmie's post-op care at the hospital. Sure enough there were a couple of stitches in that were due to come out. Surgeon S. worked Jimmie in this afternoon which was awesome.
The visit went well. Jimmie's g-tube site looks great. Rachael was finally taught how to clean it, turn it and what to do if it came out. She was given extra supplies and all of her questions were answered! Yeeeah! (-:
Hopefully now Rachael and Justin can confidently move forward from here . . .
We are thankful for your prayers and support!
Love,
Amber
The visit went well. Jimmie's g-tube site looks great. Rachael was finally taught how to clean it, turn it and what to do if it came out. She was given extra supplies and all of her questions were answered! Yeeeah! (-:
Hopefully now Rachael and Justin can confidently move forward from here . . .
We are thankful for your prayers and support!
Love,
Amber
Monday, January 25, 2010
Shock Therapy- Say What?? (-:
Jimmie's g-tube site is definitely looking better today. Rachael said he still seems to be recovering emotionally though. He is very clingy and having some separation anxiety. The last couple of nights he has awakened crying at least once and Rachael has rocked him back to sleep. She's just being as patient and doting as possible, trying to comfort him and help him feel secure again.
Something pretty funny happened this morning. Jimmie was sitting on the floor playing with her breast pump. He had the tubing and he put it in his mouth and made a really funny face and pulled it out. He did it again and then again with a super funny face and a shake of his head. He seemed very curious and confused. Rachael walked over there and took it from him and tried to figure out why he was reacting so funny to it. She put the end of it in her mouth and it SHOCKED her. She said it felt like when you put your tongue on the end of a 9 volt battery. LOL! So Jimmie was shocking himself every time he put it in his mouth and Rachael said he was clearly undecided on if he liked that feeling or not. Talk about Sensory Integration. Forget the oral brush, we'll call it "shock therapy" right? LOL!
Say what?? Um no . . . Jimmie will not be allowed to mess with the breast pump anymore.
Love,
Amber
Something pretty funny happened this morning. Jimmie was sitting on the floor playing with her breast pump. He had the tubing and he put it in his mouth and made a really funny face and pulled it out. He did it again and then again with a super funny face and a shake of his head. He seemed very curious and confused. Rachael walked over there and took it from him and tried to figure out why he was reacting so funny to it. She put the end of it in her mouth and it SHOCKED her. She said it felt like when you put your tongue on the end of a 9 volt battery. LOL! So Jimmie was shocking himself every time he put it in his mouth and Rachael said he was clearly undecided on if he liked that feeling or not. Talk about Sensory Integration. Forget the oral brush, we'll call it "shock therapy" right? LOL!
Say what?? Um no . . . Jimmie will not be allowed to mess with the breast pump anymore.
Love,
Amber
Saturday, January 23, 2010
Antibitiocs Started
Jimmie's doing well. Yesterday the site of his g-tube became noticeably red. So Rachael pursued the antibiotic question further. She was able to get a hold of Jimmie's surgeon through a nurse. He verified that yes indeed he did feel Jimmie should have been put on a round of antibiotics. So he ordered a prescription in and Rachael gave Jimmie his first dose last night. As of this morning Rachael thought maybe it looked a little less red. Please pray that he heals and that there would be no infection. Why the antibiotic thing did not get communicated and done while Jimmie was in recovery at the hospital-?? We don't know. Rachael did ask about it quite a few times. Actually they never saw a doctor after his surgery. The whole time they were there (post surgery) no Doctor or NP ever came in to look at Jimmie. Jimmie's surgeon also told Rachael through a nurse last night on the phone that Jimmie should be looked at in a couple of weeks. Nobody told her that either. As you might imagine Rachael and Justin are a little frustrated because of the lack of communication surrounding this whole thing.
Almost every bit of important information surrounding Jimmie's g-tube has had to be actively pursued by Rachael and Justin. We are a little dumbfounded about this. When Jimmie was there for his Endoscopy and P.H. Study this was not the case. They saw many Doctors and NP's and everything was managed thoroughly.
Oh- well, just keep praying for Rachael and Justin as Jimmie's advocates. They are doing a phenomenal job!
Jimmie slept all night long in his own bed last night! Rachael was encouraged about that. She has also been encouraged by the lack of puking. Jimmie has coughed an gagged a few times, in a way that almost *always* led to a gusher, but- surprise- no puke. Rachael thinks perhaps it's because the NG is no longer running down the back of his throat exacerbating the gagging...
Rachael and Jimmie got to have a smoothie with some fruit yesterday for the first time in months. Rachael has been on this massive diet for Jimmie's food allergies and for a build up of yeast (candida) in her blood. Consequently she has lost a crazy amount of weight. I don't know the exact amount, but I think at least 20 pounds. She emailed her Naturopath who is managing this part of her and Jimmie's health care to let her know the extent of her weight loss and the Naturopath is fairly horrified. She is starting Rachael on protein smoothies with olive oil and fruit. The duration of the diet is supposed to be over in a couple of weeks anyway. She will help Rachael slowly start adding foods back in and hopefully get Rachael back up to an acceptable weight. Jimmie's weight gain has remained steady so that's great. Now we just need to see his momma put "on" some pounds too. (-:
Rachael and Jimmie *really* enjoyed that smoothie! Jimmie ate it by mouth with his momma.
As always- thank you for your prayers!
Love,
Amber
Almost every bit of important information surrounding Jimmie's g-tube has had to be actively pursued by Rachael and Justin. We are a little dumbfounded about this. When Jimmie was there for his Endoscopy and P.H. Study this was not the case. They saw many Doctors and NP's and everything was managed thoroughly.
Oh- well, just keep praying for Rachael and Justin as Jimmie's advocates. They are doing a phenomenal job!
Jimmie slept all night long in his own bed last night! Rachael was encouraged about that. She has also been encouraged by the lack of puking. Jimmie has coughed an gagged a few times, in a way that almost *always* led to a gusher, but- surprise- no puke. Rachael thinks perhaps it's because the NG is no longer running down the back of his throat exacerbating the gagging...
Rachael and Jimmie got to have a smoothie with some fruit yesterday for the first time in months. Rachael has been on this massive diet for Jimmie's food allergies and for a build up of yeast (candida) in her blood. Consequently she has lost a crazy amount of weight. I don't know the exact amount, but I think at least 20 pounds. She emailed her Naturopath who is managing this part of her and Jimmie's health care to let her know the extent of her weight loss and the Naturopath is fairly horrified. She is starting Rachael on protein smoothies with olive oil and fruit. The duration of the diet is supposed to be over in a couple of weeks anyway. She will help Rachael slowly start adding foods back in and hopefully get Rachael back up to an acceptable weight. Jimmie's weight gain has remained steady so that's great. Now we just need to see his momma put "on" some pounds too. (-:
Rachael and Jimmie *really* enjoyed that smoothie! Jimmie ate it by mouth with his momma.
As always- thank you for your prayers!
Love,
Amber
Thursday, January 21, 2010
Home This Evening
*edited to add pictures at the bottom*
Jimmie has had a much better day today. He has not needed any pain medication and this afternoon he tolerated 100 mls through his g-tube. He also was allowed to eat his solids again and boy was he excited about that! Rachael said he ate A LOT! She makes his baby food so she had made meals for herself and Jimmie ahead of time and packed it up for the hospital stay.
Jimmie has wanted to move around more today. He knocked a connection loose from his i.v. while Rod was holding him and blood started spurting! Aaaaaaa . . . That would have freaked me out, but Rod calmly got it under control and they called a nurse in who just ended up removing the whole thing. Jimmie was happy about that. That was his whole plan of course. (-;
Last night was rough. Jimmie is so much older and aware this time and he is clearly very anxious in the hospital. He is a very secure child when it comes to sleeping by himself in his own bed at home, at grandparents and even at my house. Last night though he was not having it! Rachael tried and tried to get him to sleep in the crib the hospital provided and he would just cry and cry. She held him for 4 hours and then Justin tried, gave up and held him for the next 4 hours. Poor little Jimmie Jim Jim.
So the good news is they were discharged this evening to go home!
Unfortunately there was a lot of "un-communication" as in "NO" communication- from the medical staff today regarding at home care. I'm not sure there is an organized protocol for healthy kids like Jimmie getting *only* a g-tube surgery. He was in a tiny little room in some sort of "follow up- or special care" unit that the doctors and NP's do not obviously place high on their priority list. There were lots of big questions Rachael never got answers to. Like how much should our end goal be in his feed amount and a plan for moving his mls upwards.?? Why Jimmie never received any antibiotics when his surgeon insisted he be on them because it was a surgery involving his "gut".?? Whether or not he did indeed receive stitches (that will need to be removed) in his belly button.?? What to do if his g-tube button comes out.?? Rachael ended up tracking down answers and tools for that last one before they left . . .
Anyway-- we have found Children's to be amazing and incredible in the skill with which they perform procedures on our children (my daughter has had 2 surgical procedures there). But lacking a bit in the organization and communication surrounding these procedures.
It's always easy to criticize though isn't it..? We all remain extremely grateful for Children's and everything they do for the kids here in our city and in the midwest.
So anyway, Rachael is feeling overwhelmed with his wound care and just the changes in the logistics of feeding Jimmie tonight. She knows in her head she'll get used to it. She knows he'll heal and it will be ok, but tonight it "feels" overwhelming regardless. If you know Rachael and many of you do "in real life" and others who have never met her may have an idea- she loves things to be "just so". Loose ends and unanswered questions are a challange for her to live with. Pray for her to relax and have as much peace as possible while remaining vilgilant (as she always is) with Jimmie's care.
Most important- Jimmie is doing great! Praise God!!!
Thank you for praying this through.
Here are some more pictures from Jimmie's time in the hospital . . .
Love,
Amber
Jimmie has had a much better day today. He has not needed any pain medication and this afternoon he tolerated 100 mls through his g-tube. He also was allowed to eat his solids again and boy was he excited about that! Rachael said he ate A LOT! She makes his baby food so she had made meals for herself and Jimmie ahead of time and packed it up for the hospital stay.
Jimmie has wanted to move around more today. He knocked a connection loose from his i.v. while Rod was holding him and blood started spurting! Aaaaaaa . . . That would have freaked me out, but Rod calmly got it under control and they called a nurse in who just ended up removing the whole thing. Jimmie was happy about that. That was his whole plan of course. (-;
Last night was rough. Jimmie is so much older and aware this time and he is clearly very anxious in the hospital. He is a very secure child when it comes to sleeping by himself in his own bed at home, at grandparents and even at my house. Last night though he was not having it! Rachael tried and tried to get him to sleep in the crib the hospital provided and he would just cry and cry. She held him for 4 hours and then Justin tried, gave up and held him for the next 4 hours. Poor little Jimmie Jim Jim.
So the good news is they were discharged this evening to go home!
Unfortunately there was a lot of "un-communication" as in "NO" communication- from the medical staff today regarding at home care. I'm not sure there is an organized protocol for healthy kids like Jimmie getting *only* a g-tube surgery. He was in a tiny little room in some sort of "follow up- or special care" unit that the doctors and NP's do not obviously place high on their priority list. There were lots of big questions Rachael never got answers to. Like how much should our end goal be in his feed amount and a plan for moving his mls upwards.?? Why Jimmie never received any antibiotics when his surgeon insisted he be on them because it was a surgery involving his "gut".?? Whether or not he did indeed receive stitches (that will need to be removed) in his belly button.?? What to do if his g-tube button comes out.?? Rachael ended up tracking down answers and tools for that last one before they left . . .
Anyway-- we have found Children's to be amazing and incredible in the skill with which they perform procedures on our children (my daughter has had 2 surgical procedures there). But lacking a bit in the organization and communication surrounding these procedures.
It's always easy to criticize though isn't it..? We all remain extremely grateful for Children's and everything they do for the kids here in our city and in the midwest.
So anyway, Rachael is feeling overwhelmed with his wound care and just the changes in the logistics of feeding Jimmie tonight. She knows in her head she'll get used to it. She knows he'll heal and it will be ok, but tonight it "feels" overwhelming regardless. If you know Rachael and many of you do "in real life" and others who have never met her may have an idea- she loves things to be "just so". Loose ends and unanswered questions are a challange for her to live with. Pray for her to relax and have as much peace as possible while remaining vilgilant (as she always is) with Jimmie's care.
Most important- Jimmie is doing great! Praise God!!!
Thank you for praying this through.
Here are some more pictures from Jimmie's time in the hospital . . .
Love,
Amber
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