G'son is now in ICU after 1st Humira injections

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WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/29/2009 10:52 AM (GMT -7)   
Well, my g'son is now in ICU (Intensive Care Unit) with a tube in his vein going to his heart.  His BP bottomed out but is slowly on the rise again.   He is blacking out, losing his vision at times, sweaty, clammy and feverish, very high heart rate .....   not doing well today, but no worse than last night...  so that's incouraging.  Back on IV, antibiotics, hydrocortisone 50mg, oxycodone 15mg.  Don't know what they are putting into his heart?
 
He has gotten progressively worse since admitted to hospital Apr. 9/09.   It seems the medications are making him sicker, not better.  He's still bleeding, diahrrea, abdominal pain, weight loss - on top of all the new problems. 
 
Xrays, CATscan, MRI, colonoscopies, blood tests, stool/urine tests....  ???  What next?
 
Is this a normal episode of a CD flare up for some Crohnies?


 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 4/29/2009 11:01 AM (GMT -7)   
How scary...I hope he'll be feeling much better very quickly.

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/29/2009 11:15 AM (GMT -7)   
Hi Granny

Please do not worry. We are all praying for speedy recovery of your grandson. I am sure with good wishes and prayers from so many of us, and the love and affection from you, your grandson would be fine very soon. There are ups and downs in the UC and Crohns. God willing he would be out of the ICU, healthy and fit, very soon.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 4/29/2009 11:19 AM (GMT -7)   
Nana, I will keep your grandson in my prayers!

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/29/2009 11:21 AM (GMT -7)   
Hi Nana sorry to here that bad news about your grandson this morning that must have scared you half to death and him for that matter the tube that you described that is going into his heart in a vein sounds to me that it is a central line is there 3 little lines coming out of the main line they can give him his Iv meds through that cause most antibiotics are really hard on the veins,this way he won't have to keep getting a new IV put in so often if that is what he got sounds like it?Nana feel free to ask the doctors or the nurses about his care the tubes,tests,blood work E.T.C that's what there for?I'm not going to tell you this normal be all means but must newly diagnosed patients with crohn's disease have a real hard time at first trying to find that right cocktail of MEDS that works for him and some times that takes a long time,hopefully with him being the Humira it will turn a stone for him i hope so?Did the doctors figure it was a good idea to stop the Humira for now till he got stronger or are they still going to continue it.Sorry you and your grandson are going through all of this please tell him that as bad as it is right now things will always get better it just takes time he likely won't believe me now being so sick but there is always light at the end of a dark hall wall. Best of luck my prayers and thoughts are with you both at this difficult time. Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/29/2009 11:27 AM (GMT -7)   
(((Hugs))). I am so sorry that your grandson is not getting better yet. I hope he'll be on the road to recovery soon. I've heard of allergic reactions to Humira that can put a person in anaphylactic shock, but I've not heard of any of the anti-tnf agents causing heart issues. My husband was very sick last year with crohn's and a c-diff infection, and one of his symptoms, was tachycardia (fast heart rate), and feeling very very weak (fatigue, he didn't faint, but was close a few times, chills, clammy, sweaty, feverish). He only got better after being given lots of IV fluids, and they put him on IV nutrition as well.

They did an EKG for my husband's heart to rule out heart conditions - they did notice that his heart rate was very elevated (like 140-150 beats per minute) while resting, peaking at around 170 when he moved around. He couldn't fall asleep because his heart was pounding so hard. For him, they said that this was because he was dehydrated, and very malnourished, and had so much inflammation, and was losing a lot of blood because of the crohn's. They also gave him IV pottasium. Please make sure your grandson is being well hydrated, and is getting at least 2000-2500 calories daily through IV nutrition. Also, check his hemoglobin levels, perhaps he now needs a transfusion - low hemoglobin levels can cause extreme fatigue and I know my husband was very very tired, and I needed to go stand in the bathroom with him, because he was afraid he'd faint. Also, another thing they mentioned is that laying down in bed all the time can also result in elevated heart rate anytime the person does move, because your heart gets used to your body not doing anything. They recommended he move around as much as possible, but as weak as he was, it was very hard. But once the remicade started working, he started slowly moving around, and as the inflammation in his guts reduced, so did his heart rate.

It was a scary time for us, and I'm sure it's a very scary and difficult time for you. Hang in there, it usually does get better, once they find the right meds for him. For my husband, they said that as long as his heart rate didn't frequently go above 150, he's going to be ok, and it's not going to hurt his heart. And keeping him hydrated, giving him some nutrition, the remicade working, and getting him to slowly move around were the keys to getting his heart rate down. For my husband, it took about 6 months after he was released from the hospital for his resting heart rate to come down to the low 70s where it used to be before he got sick.

Based on my experience, it's probably the crohn's with the inflammation, low iron, dehydration, low pottasium and malnutrition, and general stress on the body that is causing your grandson's heart issues. I think that once the crohn's symptoms come under control, his heart stuff will also go away - at least that's how it was with my husband. It took about 1 week from when my husband got his first remicade infusion to when he got some relief, and from there, he was on the road to recovery, albeit with a few bumps along the way. I hope the Humira that he got yesterday will heal his insides, and put him on the road to recovery as well.

My thoughts are with you and your grandson. Hang in there, with any luck at all, he'll get better soon.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/29/2009 11:44 AM (GMT -7)   
Hi Nana, Wishing you grandson a speedy recovery and hope he is soon out of ICU  Bev x

WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/29/2009 1:11 PM (GMT -7)   
Thankyou so much for all the hugs & prayers - orngie, PSI.Delhi, EMom, Crohnielass!

Onthecan Jenn, I'll find out later today exactly what that tube to his heart is doing. I feel badly that you have so much on your plate right now - yet there you are, consoling a worrywart like me! I hope today is a better day for you, dear! Hugs!

PV, the info you gave me is fabulous! Thank you from the bottom of my heart. Finally, I am armed with some questions to ask the doctor.... I've been so upset I couldn't think what I might ask that would shed light on what is happening. You are a dear. Your husband's 45 day hospital stay sounds very similar to what is going on with my grandson. I'm so glad you husband is in remission. That helps me realize that despite the present dilema, my g'son CAN and WILL get better.

There are so many of you on this forum who's CD is much worse than my grandson's. Hugs & prayers to all of you.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/29/2009 1:27 PM (GMT -7)   
(((Nana))) I too will continue to keep your grandson in my prayers. Please do continue to keep us posted on how he is doing. I agree with Jenn, it sounds like they put a PICC line in him. This is better for him because they can give his meds there and draw blood too, saves from being stuck so much.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/29/2009 2:10 PM (GMT -7)   
Hi I am hoping things will improve soon and be thinking of you both.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/29/2009 2:16 PM (GMT -7)   
Thanks Nanners!

These are the questions I've come up with to ask his doctor. Any suggestions?


QUESTIONS:
What is the purpose of the tube going through his vein to the heart?

Was this anaphalactic shock?

Was it caused by his run down condition (dehydration, malnutrition, colon inflammation,loss of blood)
or the Humira injections?

Is his heart rate still elevated? Is it going over 150?

He has been hospitalized 3 weeks & his condition has continued to deteriorate. His body is extremely run down. Is that not putting stress on ALL his organs?

Why don't you give his bowels a rest - stop feeding him by mouth?

If you put him on IV nutrition directly into the blood stream, (bypassing the inflammed intestines) would that not help him to absorb the nutrients and get his overall body feeling better? 2000 to 2500 calories daily?

Can you tell if he has a C-diff infection?

Have you ruled out any infections in his bowels (fissures, fistulas)?

What antibiotics do you have him on?

Are his potasium levels back to normal? Or will you be putting him back on potasium?

If his hemoglobin is still low why are you not considering a blood transfusion to give his body a chance to "perk up"?

What is your next plan of action?

Do you plan to go ahead with another injection of Humira?

If so, and he goes back into anaphalactic shock, I've read that it could have far worse complications the second time 'round? Is that true?

Are you conferring his case with other specialists?




I'm off to the hospital in a half hour. Any suggestions before than would be appreciated.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/29/2009 2:19 PM (GMT -7)   
Nana, I'm glad our experience can be of some help to you. It was a terrible time for us, as I am sure it is for you. Just hang in there, and take each day at a time. It can and usually does get better. My husband is now living a very normal life - eats a normal diet (just stays away from sugars), has lots of energy, is working full time, has put back all the weight he lost, and is exercising to put on the muscle mass he lost when he was sick. It's almost like the nightmare of last year didn't happen - so life does get to normal, and manageable once you find a drug combination that works. I hope that now we know what he has, the next time he has a flare up, we can control it better - but that's a worry for when it happens. I've learned to really embrace carpe diem, and make the best decisions you can for the future, but not to dwell on all the things that can go wrong in the future.

Nana, is your grandson on IV solumedrol? Your sig says he's on 50mgs of hydrocortisone. Once my husband's GI realized after a colonoscopy how bad the inflammation in my husband's colon was, he put my husband on 120mgs of IV solumedrol, and they slowly tapered him off of it after the remicade started working. They only put my husband back on oral steroids once he showed some improvement in his stool. Is there a reason why they are not trying something like that? One of the reasons they put my husband on IV solumedrol is becasue they suspected that he wasn't even absorbing the oral steroids.

For my husband, even those high doses of steroids, couldn't stop the crohn's flare, and his GI said starting at the transverse colon my husband's colon was like hamburger meat and he couldn't finish the colonoscopy for fear of perforation. So, he recommended we try remicade as a last ditch effort before surgery to remove the affected part of the colon, and referred a colo-rectal surgeon to monitor our case, and answer our questions. If you haven't already, it may be prudent to find out if your grandson can be helped by surgery, especially if the loading doses of humira don't make him better.

My husband's GI took the time to talk to us about a plan of action for my husband after the colonoscopy showed how severe his inflammation (due to Crohn's, and not c-diff) was:
1.) Increase to high doses of IV Solumedrol
2.) Give it one week - if that doesn't do the trick, go to remicade, and get a surgical consult
3.) If after the loading doses of remicade are done, no or very little improvement is seen, proceed with surgery

He didn't recommend waiting to try adding methotrexate, or 6-mp etc to the mix, because those meds typically took about 3 months to work, and he didn't feel that my husband would survive 3 months in the condition he was in. So, he skipped those meds altogether and went directly to remicade. Also, he put my husband on IV nutrition to give his bowels a rest - for about a 2 week period, all he ate was chicken broth. Once he started feeling a little better, he started with ensure, and then soft foods, etc.

If the remicade got my husband well enough to leave home, but if he had trouble getting off the steroids, or getting into complete remission, then, he said he would consider adding another med like 6-mp or imuran into the mix. He didn't want to do it right away, because taking both remicade and 6-mp/imuran/methotrexate increases the chances of some lymphomas.

I thought we got good advice from his GI. Perhaps having a plan of action, and preparing for what maybe the next step (like surgery) will help in the treatment of your grandson. Please keep let us posted on how he's doing. I have a fair idea of the agony and despair you're feeling, and my thoughts are with you.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/29/2009 2:49 PM (GMT -7)   
Thanks PV. I'm off to the hospital now. Talk to you all later.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 4/29/2009 6:33 PM (GMT -7)   
Hi Nana, I hope you let us know the answers to all the questions you were going to ask the doctors. That terrifies me, as I think I may have to be on Humira after I finish with Entocort (or a similar drug.. I had a bad reaction to Pentasa so I'm sure that they will have to put me on something stronger). It's awful some of the reactions people seem to have to these medications, and I really hope they can find something that improves his condition, rather than landing him in the ICU. I will keep my fingers crossed for you and your grandson - I can't even imagine what you two must be going through right now!

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 4/29/2009 7:17 PM (GMT -7)   
hey nana, the central IV is more than likely for any need for blood products, certain antibiotics that would eat up small arm veins, any TPN they may decide to give him etc.. its just easier to have it in already than to do it in a hurry. its not "doing' anything for or to his heart, it is just the location just ABOVE the heart that the end of the line goes, that makes it sound scary.. also it probably has more than one lumen or line conection so that more than one thing can be given at the same time. each lumen has its own tube inside the main tube and its own outlet on the end. some medicines cannnot be run through the same line at the same time. and anaphylactic shcock woul have been rapid onset after exposure to the new drug or substance . it may be more of a infection of the blood stream that is what they are treating. good luck
randynoguts 



     http://www.geocities.com/randynogutsweb/


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/29/2009 8:35 PM (GMT -7)   
Hi Nana i wish you lived down the road from me so i could at least sit with you and talk and comfort you in your time of need,i just read your list of questions and there great and the part about did he consult any other doctors to be brought in for your grandsons care if not recommend that you would like a second opinion it wouldn't hurt his feelings and besides this is your grandson and you are his eyes and ears now so do what ever you can for this little boy,by the way how is grandson#2 doing he must be terrified with his brother in ICU tell him I'm thinking about him and if he is on facebook tell him to look me up or send me an E-Mail my address is listed.The angels are watching over your grandson nana when your not there so don't you go and run yourself down cause than you won't be any good fro you or the children take it easy nana get some rest take a walk what ever you have to do so you don't worry so much and i bet your not eat ting go home make up a nice beef stew or a casserole for you and grandson#2 and have a nice dessert and maybe stay home a bite watch a funny movie with #2 feel better Nana your still in my prayers the both of you. Nana i go to the hospital on Friday to get my new picc put in but i will be talking to you after that but tomorrow i have to get a cat-scan and pick up my stuff for my scope and there is a huge sale 50% of at a local furniture store i really don't need any thing but my niece gets all the old stuff from here i furnished her whole place so I'm gonna go and take a look around anyway depending on how i feel that is. God Bless You Nana And Your Boy Lots Of Love Jenn smilewinkgrin smilewinkgrin smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/29/2009 9:35 PM (GMT -7)   
randynoguts, Valerie3, gachrons.. Thanks you for caring! I'm back from the hospital... here's the latest update.

Jenn, you & randynoguts were right.... it is a central line with 3 little tubes attached & is there for the reasons you both stated.

PV: suprisingly, my grandson's doctor answered just about all my questions before I had an opportunity to ask them.

- Doc doesn't think this latest development was a result of the Humira but has not totally ruled it out.
- Might have been triggered by withdrawing the steroids all at once - doc admits that it was possible for my grandson to have become dependant to the steroids in 3 week & as such, should have weaned him off it. So, he's back on 50mg, simply to stop any withdrawl problems.
- Says "steroids" are not helping his CD at all.
- Heart rate still elevated but better than last night (was 140 but now 116)
- As to solumedrol.... she says "no, it's just another steroid.... won't work" ???
- She won't consider IV nutrition... says he is not, in the "clinical" sense, malnutritioned YET so will continue to have him eating normally. Told me to bring him home made soup!
- Did another MRI this aft of lower abdomen/rectal area looking for evidence of infection. She won't have results back until tomorrow.
- He's back on Cipro, Flaggyl & doc added Vincomycin (I'm glad about that).
- Potasium levels are still a little low so she has him on liquid potasium x1 a day.
- Hemoglobin is still low, but holding betw 88 - 90 & will blood transfusion him if they drop further.
- Her plan of action is to deal with this bump & get him over it. Will discuss further plans after that.
- Humira is still being considered, possibly in 2 weeks, unless this episode proves to be connected to it.
- he is bleeding internally, somewhere. Says she just hasn't found where yet.
- Changed his pain med from oxycodone to Demerol.

My grandson is taking this very well. His perception and emotional strength amazes me. He says its just a "blip", nothing to get excited about Nana! I'll be seeing him again tomorrow aft. Thank you to all of you for caring. Hope this post makes sense! Goodnight & God bless!
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


fimk
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 4/30/2009 5:41 AM (GMT -7)   
I've been following your stiuation with interest. At 24, I spent 5 days in ICU then 21 days in hospital. My situation was/is different from your grandson...but it has been hitting home. His toughness will help pull him through. As others have said make sure you take care of yourself. As onthecan said I wish I could give you a hug and sit with you awhile. You, your grandson, and those around you are in my thoughts and prayers.
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been very low doses of prednisone. Refuse to take anymore immune suppressants.


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/30/2009 1:44 PM (GMT -7)   
fimk: Thank you for your kind words.

By my age you know you have to take care of yourself before you can be of any help to others. That's life. It's just so frustrating, being a bystander, watching a grandson hurt, not being able to stop the pain ..... My g'son will come through this with flying colors, I know that.... I just want to hurry things along! Patience is not one of my virtues.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/30/2009 5:50 PM (GMT -7)   
Hi Sounds like there are some positive things there and will be thinking of you both ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/30/2009 6:08 PM (GMT -7)   
Nana, it's one of the worse things watching a loved one in ICU.... I just wanted to add my thoughts and hopes
for a speedy recovery...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/30/2009 6:41 PM (GMT -7)   
Nana,
The most important thing is to know that someone loves and cares about you. And you definately do that for him!
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 4/30/2009 6:59 PM (GMT -7)   
Nana, I really must say after reading your posts that your grandson is extremely lucky to have such a wonderful grandmother who cares about him so much and is putting so much effort into learning about his condition and being there to support him. Really makes me wish that my grandparents were still around! I hope he gets out of there soon, I know it can be hard on everyone going through these things, but this experience will make him a stronger person!

WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/30/2009 9:58 PM (GMT -7)   
I am touched by the tremendous support this forum offers! You are all such beautiful people.... To say thank you, hardly seem enough.... you bring tears to my eyes. I can't think of a better place to learn more about what my g'son is going through than by talking with others in the same boat who have years of experience in all the things that are happening to him.

My g'son is still having a rough go of it. His hemoglobin has dropped farther.... now at 85. I don't understand why his GI doc has not given him a blood transfusion, although this morning she did tell him if his blood count went any lower she would consider one tomorrow.... It's just that tomorrow seems a long way off right now.

He is a little emotional tonight, shaky and weepy - very unusual for him. I remember how I felt several times when I needed blood transfusions & I could always tell when my hemoglobin was low - I too, became weepy.

Humira is going to take a long time (right now, to me, 1 - 3 months is a LONG time) before it starts to help him. I worry if permanent damage is happening to his colon because the inflammation & bleeding are still raging in his body. He has flu like symptoms. Not sure if that is the result of switching from 100mg Hydrocortisone down to 50mg, perhaps that was too big a drop? Or it could be the side effect of the Humira. He was so "drugged" when I left him tonight.... but still in pain; I know, it doesn't make sense. The antibiotics are making him feel, as he says "yukie & nauseated". Tomorrow is another day, a brand new day.....

Anyone know why the doc hasn't blood transfused him yet?
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/1/2009 5:20 AM (GMT -7)   
Because they do not transfuse unless you drop below an 8 hemoglobin, at least for me because you can only have about 80 blood transfusions in your life. I think with 85 you might be refering to his hemocrit?

Anyways I wonder if they have done a pill cam before? I mean I do not think it can be done for him right now because he is too sick, but you wonder if they are missing something...

Do they have him on zofran for the nausua? It sounds like he could use a bit of pain management as well.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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