Monday, March 15, 2010

March 15

I have decided that I hate March 15th. I am going to try to explain what is going on with Ally, but I am exhausted after being up again...for the fourth night in a row. At about 4am last night, Ally was in so much pain that she was begging us to take her to the hospital. She had several violent vomiting episodes, yet again, and we were very scared...even considered calling for an ambulance for the first time, but didn't. After six hours in the ER, they determined that she was suffering from acute pancreatitis...her pancreatic enzymes are supposed to be somewhere around 200 and her's were 1800. The pancreas is inflammed and this also affects her blood sugars/insulin...the pancreas helps in digestion and explains why everything she ate was coming right back up. I couldn't figure out why it was also worse at night, but it was determined that part of it was because she was getting too much glucose through her TPN nutrition which ran at night..and aggravated the situation. In the ER her blood sugars were also super high (almost 500, should be 200) so they are figuring she is now in some sort of diabetic situation also. We are going to determine tomorrow if she needs insulin to regulate her for a while. She was also dehydrated, although had been drinking incessantly, this also being a sign of the diabetic state. She drank and drank and drank because of the situation. Luckily, all the pieces came together now and they can finally start trying to get her better....but it is going to take some time. Although I am upset that she has this, I am actually feeling better that we know what is going on. I had been very scared and this has actually been coming on for some time now. Her enzymes were elevated even last week. She has been suffering for a long time now.

The culprit behind all this: her PEG asparaginase shots. Those awful leg shots. This is one of the more uncommon side effects that it can cause, but it has done it with our girl. They are indicating she may have to go off the protocol and not get these shots again. She only had two more times to get them.

How do they fix it: only time can heal this really. They also must give her gut complete rest. That means nothing by mouth. NOTHING. Not even water. This is very hard for her to understand and she cried for a long while today just wanting a drink. I can't let her have it...a few ice chips. They are managing her pain with morphine and toporol. I have heard from several people that this is extremely painful..one nurse even telling us it is worse than childbirth in her opinion. Her pain seems under control now, but I am scared as we enter the night again.

They have to watch her pancreatic enzymes and hope they come back down, although they told us they could go up too. They don't know where she is at in the process. They are also scheduling an ultrasound of the pancreas tomorrrow. She will also need a blood transfusion and a change in needle in her port. Not too fun. They have discussed the possibility of having to switch to a NJ feeding system...where they insert a tube down her nose, bypass the pancreas and stomach completely, and feed her straight into her intestine. They would sedate her some for this process. I am really hoping she does not have to go this route. I am really hoping that she recovers soon. They are saying to plan on a "good week" of being here. It's gonna be hard, but we will manage with a little help from our Army.

I am glad she is here and getting the care she needs. She has seen most of her favorite nurses today and it makes it a little bit better. Amanda and Lincoln from our hospital family are right here with us and they helped me get through the day. Today being a very sad day for me as I lost my Mom last year on March 15. She is resting comfortably in heaven now. I am finishing this blog the same way that I started it: I hate March 15th.

PS I think visitors would be a nice distraction for Ally....trying to get her past thinking about the fact that she can not drink. Her ANC is high, so healthy visitors are welcome.

6 comments:

  1. So many extra prayers for you tonight Janel. I'm praying that God will comfort your mourning heart and strengthen your mother heart. Much love.

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  2. Beware the ides of March... It's not just a bad day for Julius Ceasar.

    I am sorry that Ally has pancreatitis, but I know you are relieved that you have a diagnosis you can get your mind around. I will keep you in heart and mind, Janel. I know that this is a tough time in many ways.

    Emily Mangual

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  3. So sorry to hear about this dreadful March 15...My heart aches for you, Janel. But let's hope that Ally is on the upswing and now that they've figured out what's wrong, they can help her and she'll be back out on that bike again in some beautiful spring weather. Love you.

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  4. Said so many prayers for you Sunday and yesterday. I hope that she has turned the corner and is outside at the hospital playground catching some rays! Love you!

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  5. So sorry to hear that you are all on such a rough road again with Ally's treatment. My daughter, Mady, is 7 and she's contrary with a simple cold, I can only imagine the strength and courage that it is taking for Ally to get through her treatment, and the strength it takes you as parents to help her through it. I hope she's feeling better soon, and glad you found the cause of the pain so that it can start being treated. God Bless!

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  6. I thought about and prayed for you a lot this weekend, Janel. I knew it was going to be a tough one, with the memory of your mom. Who would have thought it could get any worse! I am so sorry poor Ally is having such a difficult time. Like you said, though, at least they know what it is and what to do with it. Hang in there. The ARMY is here to pray for you, support you and help you! Don't hesitate to ask. Give Ally a hug from the Baldwins. :)

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