| Mom's Hospital Progress Reports |
These Progress Reports Were All Written On The
IBD Parents Support Message Board
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| Son in Hospital - Fri Sep 18 1998 |
Some of you know, some of you do not. My son (Aaron, age 11) is in the hospital. He's been diagnosed with Ulcerative Colitis for almost six years I believe, and is currently not responding to his medication that is supposed to get and keep it under control. He will be in the hospital for 7-14 days, depending on how he responds to the treatment.
:::snip:::
He does seem to be slowly responding the the IV steroids, in spite of the fact that some mistakes of the staff have caused this to be by far the most traumatizing hospitalization he's ever had. His spirits are lifting, the bleeding is slowing some, and his pain is less.
I hate this disease, but Aaron is truly my hero. My heart aches for the hell that he goes through and more than anything in the world I would wish to take this from him.
You may think I'm about to tell you more than you want to know, but I need to say it, so if this is a problem, please stop reading now.
There is a two-part surgery which would cure him (Ileal Pouch-Anal Anastomosis - removal and replace of his colon) but his doctor says that she would not do the surgery until he's non-responsive to his meds for an entire year. In other words, if I want to hope for him to receive the cure, I have to hope for him NOT to get better first. Meanwhile his risk of cancer rises daily.
I'm frustrated, I'm tired, and my heart is aching.
Thanks for listening.
MiSFiT
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| Update: My Son - Wed Sep 23 1998 |
Today, on day 7 (of the original 7-14 days) we are told Aaron will be in the hospital at *least* 14 more days. His condition is worse than when he was admitted... he is not responding to the treatments.
As of last night his fever is spiking at 105 and he's not eaten in four days.
The doctors are doing all they can, really. They have a couple more meds they want to try yet. If he does not respond they will transfer him to UCLA for the surgery to remove his colon, which in spite of it's drawbacks is the cure for this disease.
A Very Tired MiSFiT
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| Emotional Roller Coasters (Day 17 for Aaron) - Fri Oct 2 1998 |
Not sure where the hell to start, but I guess I should start with the things people tend to want to hear most of all, the good things.
It would appear that Aaron has turned a corner, for the good.
The surgeon here felt surgery was "not warranted yet" when they evaluated him last Friday, and they continue to monitor his progress.
The fever broke last Saturday and has not spiked again since then. This means the four different powerful antibiotics for the secondary infections (Staph and Strep) are doing their job.
As for the flare itself, he's been pain free for several days now, without the morphine. It remains to be seen yet if when he returns to solid food that trend will continue, but it is looking hopeful. He's still passing only blood, although there is less of it - from 2500 cc's a day to 500 cc's a day.
Aaron's state of mind, energy level, and attitude are greatly improved. He is no longer incoherent (for the most part), he's laughing and smiling again, he's noticing and appreciating his visitors. He went an entire week without leaving his room so the fact that he spent the entire day out of his room yesterday is monumental.
Now, having said all this, please know that this mother's attitude and optimism are extremely guarded. There have been so MANY improvements and setbacks that it's not even funny, and the roller coaster ride has been very intense. Don't get me wrong here, I feel very relieved to see my son being my son again. But it is very important for me to keep at the front of my mind that things could go backwards again at any moment, in order that if they do I will still be able to function at the same level in order to be there for Aaron and his brothers.
The colectomy/j pouch surgery is the ONLY cure for this disease, which, even if gotten under "control" again with the medication: IS NOT GOING TO GO AWAY. There are as many people out there reading this that will say "avoid the surgery at all costs" (which is what the doctor's say) as there are people who will say "why are they putting this child through this hell only to *VERY HIGHLY LIKELY* watch him go through it all over again next flare (IF they are successful in getting this one under control) when they could cure his disease and give him back his life" (which is the attitude of this mom, as well as Aaron himself).
Frankly I'm having a very hard time with having to defend my feelings on it with those who think avoiding the surgery is best, as well as having to defend the actions/attitude of his doctors with the ones that agree with me. I do understand where the doctor's are coming from, and I am *extremely* frustrated with the situation. Watching my son going through this hell and the doctors (excellent doctors) pulling one "last ditch effort to avoid surgery" after another out of their proverbial hats has been extremely hard and very exhausting.
Meanwhile I get emails from parents whose children HAVE had the surgery telling me how completely right a decision it was for them and their child and how much it's changed their life BACK to what it was before the onset of this freaking disease.
What Aaron WANTS is important to me, and he WANTS the surgery.
His father and I talked to him about it factually, the pros and the cons, the risks and the expected results. He knows full well all it entails up to and including the ileostomy between the two surgeries, the recovery time after, and all of the risks involved.
Aaron's mind is very analytical and extremely independant. He wants the surgery because he wants to be cured. He wants to be flare-free for life, not just the next week/month/year or whatever amount of time getting this flare under control buys him this time around.
Anyway, for now, we wait. We cherish the good moments, and brace ourselves for the next bad ones... be they today, or next year.
MiSFiT
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| Headed for UCLA - Mon Oct 5 1998 |
Aaron and I will go by ambulance, with his father following in the car, tomorrow by noon. Surgery is scheduled for thursday, the first surgery of two. Aaron and I will be gone for at least two weeks. Anyone down there, please look us up down there if you can. We will be down there by tomorrow night.
MiSFiT
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| Who Says You Can't Come Home? - Mon Oct 19 1998 |
Who Says You Can't Come Home?
Well whoever it was, they lied. I'm home. Aaron's home. :)
Aaron made it through the surgery fine. They removed his colon, made the J Pouch, and put in a temporary ileostomy. Aaron's biggest worry going in was that they might nick his spleen and have to remove that as well. It took two hours longer than the projected four hours, but no complications whatsoever. (The first thing he asked when he woke up was "Do I still have my spleen?") ... He lost 25 pounds the day of the surgery.
We could have gone home 6 days after the surgery, however, within 24 hours after the surgery Aaron's temperature was spiking again, to 107 f. They feared he might have surgical pneumonia, but the chest xrays turned out fine so more and more cultures.
Finally Monday morning (four days after the surgery) they found yeast in his Broviac (central IV line - in his chest) and immediately he went under general to get the line removed. Meanwhile, the results of the cultures started coming in. Yeast and fungal infections absolutely throughout his body, not good at all. The extended period of steroids suppressed his immune system and he was very very ill.
They changed his course of antibiotics and brought out the real heavy hitters, one of which has really extreme side effects. His side effects were bad, but very minor in the big picture of how they could have been. The best news is, he responded immediately to the first treatment. There were four more to follow, of that med.
They sent him home finally Sunday. We've been home for less than 24 hours and GAWD is it nice to be home. He's got one more week of IV antibiotics at home, then two more weeks of oral antibiotics after that, meanwhile he's on a fast taper off the steroids since he no longer has Ulcerative Colitis!!!!!!!!
He's adjusted very well to his temporary ileostomy and although he's very tired and weak yet, he's doing a far sight better than he was before.
He's been through the ringer allright.
He has to go back in 2.5 weeks for a checkup with the surgeon, in 5.5 weeks for a rectal under general anesthesia to check the healing of the J Pouch, and then the first week of January for the final surgery to close his ileostomy and restore him to normal bowel function.
Throughout the entire ordeal, he's never truly doubted the choice to have the surgery. Even in the worst of the infection when I was feeling helpless and I was hugging him and said "I wish I could just make this all go away"... he said to me "That's what we're doing Mommy"... never have I seen such large courage in such a small person in my life.
MiSFiT
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