progression

Eve has continued to progress.  She had another vomiting episode on Wednesday.  She had a hospital bed delivered yesterday so we can raise and lower her upper body.  We're changing around her meds and j-tube feeding rate to try to keep her comfortable.  They are also ordering a pain pump, so she is always connected to a source of pain relief at the push of a button (in case I can't leave her side).  Yesterday, the hospice nurse informed me that we may have just days or weeks left with her.  She said that children can hold up for so long, but often have an extremely rapid decline at the end.  I think it's going to be sooner rather than later.  She had extreme pain this morning when I moved her from her bed to her chair.  I couldn't get all of her meds in her g-tube, so we paused the feeds to give her gut a break.  We're going to try again with the meds in a little bit.  The hospice nurse is going to consult with the medical director.  When I got off the phone, I checked on Eve and she had fallen asleep in her chair.  She usually doesn't take naps this early. 

We are so lucky to have such wonderfully supportive family, friends, and neighbors.  I know that you would love to help.  I promise ask for help if we need it.  If you email me and I don't reply, know that I am grateful for your support and that I read it, but I might not have the energy to respond.  I'll do my best to keep updating.  In the meantime, if you are one who prays, please pray for a quick, quiet, and comfortable death.  If you are not one who prays, please send good vibes to help us achieve that goal. 

snuggle time

 And from the other direction....

Another hospital visit

Eve has had a rough couple of days. This is our third day in the hospital. She's had some very bad constipation and we've been trying to fix it with medication and suppositories.  She was making some gaggy faces Thursday night and I touched base with Hospice. We gave extra meds for constipation. At 4am, I woke up to her violently vomiting. It was horrible. She couldn't stop. So, we called hospice and the nurse came over. It's now a bit of a blur, but we tried zofran for nausea and hard core pain meds that were puked up. We tried a medicated suppository. The nurse heard no bowel signs, so she called the ambulance so Eve could be tested for a bowel obstruction.  We arrived at the pediatric ER at Baystate at about 9:30am on Friday. By now she had horrible junky breathing and a fever, so they did a chest X-ray and an abdominal X-ray. They did blood work (not terribly problematic) and a urinanalysis (normal).  The abdominal X-ray showed her packed with poop, so the nurse gave her an enema. Oh. My. God. The biggest poop I've ever seen.  However, she was still feverish and her breathing was rough.  So, they admitted her. She vomited again when she arrived at her room.  At this point she had no meds other than some Motrin, so I'm sure she was hurting bad. They were able to start an IV (she's a hard stick and had foiled at least 4 previous attempts in ER and new room) and gave her Valium and fluids through the IV. Saturday morning they ordered another set of X-rays. The chest X-ray showed no sign of pneumonia which was great. The abdominal X-ray showed she still had lots of poo. Enema #2 was also successful. They also slowly started putting Pedialyte in her j tube, which she tolerated. Then the started her meds through her g tube, which she also tolerated. Then they put formula in the j at the normal rate. That, too, has been tolerated. The GI suggested a mixture of her previous fiber containing formula and a non fiber formula.  Maybe the fiber had been compounding the problem. So, though she had a pain episode last night at 3am, she's doing much better. She looks more alert and relaxed. I think getting bowel relief and getting back on her regular meds has given significant relief. Her breathing sounds better, but she's still wheezy. The doctors are satisfied she's back to baseline and are sending her home. Ambulance is arranged for 1pm.

This was a rough and scary experience.  It's times like this that make me extra upset at the amount of suffering this child has to endure. I don't know how much time we have left with her, but why does it have to be so horrible for her? Why can't we have a quiet and peaceful end?

On a more positive note, we face timed with Jim and Seamus this morning and she smiled and laughed pretty hard. Of course that made her wheeze badly, so I asked Jim and Seamus to stop being silly which made her laugh harder. She was definitely not this responsive in the past two days. So, wish us luck.