A Recap of the Last Five Days

So much has happened since I last wrote a blog, though I've been updating people via my facebook and my support group. So now I don't even know where to start with it all. So really, I'm going to make a Herculean effort to keep it all to a minimum as I give a brief recap.

Joel was discharged from the hospital at 5:30 on Thursday.

The next morning he developed poops that appeared to be made up of blood. Not bright red blood. Digested, dark blackish blood. I also found blood in his tummy via his gastrostomy tube later in the day.

So I rushed with him to emerg. Steve joined us later. We were admitted late that night.

He had no further poops as they discontinued his food. So on Saturday afternoon they started up feeds again.

Later that night (11pm) Steve and I got a call to say that Joel had another bloody stool. We agreed with the Doc on call that a transfusion might be a good idea, even though Joel was in stable condition, as his hemoglobin was getting a bit low.

At 3am on Sunday morning we got a call saying that Joel's blood pressure had dropped, even with the transfusion, and they had ended up also giving him a couple bags of saline to bring it up to an acceptable level. He was now stable, though his blood pressure was still on the low side.

So Steve and I left Caeden with a wonderful friend, and rushed to the hospital. Joel remained stable, but with a low bp until later in the morning when I convinced the head doc to give him some hydro cortisol. An hour later his blood pressure was really good, square in the middle of ok.

Then later in the day the endocrinologist came to speak with me to tell me that Joel's ACTH from Sept 25th was indeed high enough to indicate adrenal insufficiency and to warrant treatment with hydro cortisol. So permanent treatment with hc was started.

Joel seemed stable, so I went home for the night. And the phone rang again at 3am to say that now Joel's heart rate was very low. Friends, let me just interject for the first time something more that strictly the facts. Let me say that I was now petrified, after a second middle of the night call in a row.

I had a little chat with God, then phoned the hospital back for a further chat with the doctor. They decided that since Joel looked great in every other way (pink skin, good O2 sats, regular breathing, good blood pressure, etc) that the low heart rate was likely due to the hydro cortisol relieving his body of so much stress that for the first time in a while he could really relax and rest, thus his heart rate dipped much, much lower, but his vitals were all still great. He assured me that I didn't need to come in, and Joel was fine.

Today I went in and found Joel to be much, much improved over how he has been for the past few weeks. By which I mean that he was much more playful and a lot less irritable. He didn't' even fuss for his Meckle scan, though he had to lie wrapped up on his back for 45 minutes. I could be wrong, but it seemed to me that the hydro cort had really done something great for him. And though his heart rate had gone up when he woke up, it still was on average about 20 beats lower than I was used to seeing it, but he looked GREAT! And today for the first time in a long time, I felt WONDERFUL. It is such a relief of stress to me, not when Joel is healthy, because he never is, but when Joel is HAPPY!

We still have to clear up the blood in his GI tract. And that might not be something easy to fix. But I can not tell you my relief when we started Joel on the hydro cort. Odd, hey? I'm SO happy and grateful to find out my son has an adrenal insufficiency.

Well, sometimes I do worry about things needlessly. But for awhile now I have really felt like things were not well with Joel. That little mommy spidey sense. And when we brought Joel in two and half weeks ago, I really thought perhaps an adrenal insufficiency was the culprit for some of the things I was seeing.

And even though they kept telling me his cortisol was fine, and even though they told me his ACTH was fine, I just didn't feel reassured. I realize now how much that was stressing me out all this time, the niggling feeling that Joel had an undiagnosed adrenal insufficiency. I am so glad the endocrinologist did not hassle me about checking it one more time to make sure the Dex had not interfered with the results. Because I'd rather be told there is an easily manageable adrenal insufficiency than worry constantly that there is an undiagnosed one that is not being treated.

It's been tough. All these problems, especially when they involved 3am phone calls, sort of force you to glance down into the abyss that is the loss of your child. And it is hard when you feel so much how you don't want your last memories of your child to be him uncomfortable and inconsolable. That he is in so much discomfort that he just wants you to put him down and leave him alone. That you barely saw the ghost of a smile for days and days, or even weeks. That is not how I want my baby to leave this world. But I don't get to choose. And for almost every one of these kids with a PBD, that is the reality. Sickness eventually takes over the good stuff.

If only I could choose, Joel's last day would be spent being held and cuddled and played with, with lots of smiles and laughs. I can not choose. I can only pray that God in His mercy gives Joel as many good days as possible, and that He takes over and takes Joel home without too much suffering.

I'm hoping that one day soon, I feel less tired and stressed out. Because I want to be able to write some things, other than just constant hospital updates. I'm really tired of hospital updates! I'm not sure if it is too much to ask, but I'm still hoping that Joel can come home for Thanksgiving, though when I mentally count up possible hospital days, it looks a bit dicey. One or two more days for a scan. Maybe they can fix the leak then, maybe it will need another day for surgery. (if the leak can't be fixed by surgery, then we get an day to figure out how to cope) I'm guessing after surgery they'll want to monitor him for at least 48 hours, and I don't know how long it would take to get back on a feeding schedule. By my best calculations, it's gotta all take at least 4 days. And let's not get into "worst case scenarios." A friend from the support group was once in hospital for FIVE weeks while they tried to fix a GI bleed.

So, please, everyone - PRAY! I'd really, really, really be so THANKFUL to have Thanksgiving home with my boy!