When It Rains, It Pours February 27, 2009
Adam continued to do poorly yesterday. He was still vomiting some and could do nothing but sleep. I called the nurse at Adam’s doctor’s office yesterday morning. She talked to Adam’s ped who said to take him to the ER, so we headed off to the Children’s Hospital around noon. We, of course, had to wait forever, but we finally got into a room. That’s when things went from bad to worse.
I started feeling really faint and knew that I was close to passing out. I avoiding actually passing out by laying down on the bed with Adam, but a little bit later I threw up everywhere. I felt horrible.
That’s when I had a nurse call Dan who high tailed it to the hospital. By the time he got there I was doing even worse, so I was sent to the neighboring hospital’s ER while Dan stayed with Adam.
I got bloodwork done, and was given IV fluids, Zofran, and a GI cocktail. Adam had bloodwork done, too, which showed his electrolyte levels were really low. They didn’t give him an IV since he wasn’t super dehydrated (plus, they had a hard enough time just getting blood from a vein with him.) They tried to give him some pedialyte even though the chance of him reacting to it were pretty good, but he wouldn’t really drink it.
So, Dan and Adam came and met me, and then we all went home. I think we got back around 9:15. It was a long day, to say the least.
There’s an even more difficult part to all of this. Because of the meds I was given as well as both Adam’s and my conditions, I am now pumping and dumping while we give Adam unflavored Elecare, the one elemental formula we hadn’t tried with him. My supply is virtually non existant anyway due to how bad this virus is.
Last night was really hard. Dan got up with Adam each time, because there’s no way I could do it. Adam got very upset that he couldn’t nurse. Dan did manage to get him to drink a little bit of Elecare overnight and did get him back to sleep each time.
Adam’s done pretty well getting some more Elecare down this morning. Now we just have to cross our fingers and pray he doesn’t react to it. It’s heartbreaking to have it all play out this way, but there’s no way I can stay on my diet right now, and I don’t have the energy or supply to breastfeed him anyway. I had a good long cry about the whole situation this morning. It really wasn’t suppose to happen this way.
I’m sure Dan will come down with it soon, so I’m hoping I’ll feel better enough by that point to be able to take care of Adam. Adam’s doing a little better this morning, but he’s definitely still feeling the effects of it. He just fell asleep laying up against me on the couch a few minutes ago.
So, we’re supposed to fly out on Monday. I think Adam and I will be well enough by then to make the trip, but there’s no telling about Dan. It all depends on when he comes down with it. He may end up having to fly out a day or two later. We’ll just have to see.
I guess saying, “this sucks” is a vast understatement at this point. We’ve definitely had better days. I just hope we all make it to the other side in one piece.
If It’s Not One Thing, It’s Another February 26, 2009
So, you would think that with all we’re dealing with right now that the universe would cut us a little slack. Not so much. Adam is sick. He woke up Tuesday night at 11:15 throwing up. He pretty much hasn’t stopped since. I think we’re up to 24 vomiting sessions thus far. He just can’t keep anything down.
We really didn’t need this right now. I’m hoping so much that he starts to feel better today. I’m so not up for an ER visit.
A Little Less Whine This Time February 21, 2009
We’re hanging in there. It helped so much to read all of the comments on my last post. You guys helped remind me that I can make it through this crap. Thank you for that.
We did get some good news on Friday. Adam’s endoscopy and colonoscopy at the Children’s Hospital were originally scheduled for 3/10, a full week after we start at National Jewish. After some pleading via email on my part, however, we now have a procedure date of Friday, 3/6. It will mean that Adam will have to spend a little more time without food and drink before the procedure since it will be in the afternoon instead of morning, but it will be worth it to have it done during the first week of our stay there. That will allow us time to get the results and start in on whatever plan the doctors have for us before we head home.
Things are definitely challenging right now to say the least, but I’m trying not to focus completely on the hard stuff. There’s a huge part of me that’s worried about what we’re going to find out in Denver (or what we’re not going to find out) and what that will mean for our future. I’m worried about having to wean Adam before either of us is ready. Heck, I’m worried about just making it until we get there at this point.
At the same time, though, I’m trying to take in each second of every hug, every kiss, every smile, and every giggle, and hold onto them because those moments are what’s going to get us through this.
Where’s the Fast Forward Button When You Need It? February 18, 2009
I don’t normally want to wish away time, but things are definitely not normal right now. We got our dates for Denver, March 3-16, and while I’m thankful that we won’t have to wait any longer than that, I’m honestly not sure how to make it until then.
Adam is just a big ball of reaction these days. And my diet? Yeah, I’m down to salmon, cucumbers, my canola oil salad dressing, and applesauce. We just can’t seem to find another grain that he will tolerate. I’m losing weight that I don’t have to lose and generally feeling like crap. So, we’re both messes. Big messes.
I found out today that the endoscopy and colonoscopy that Adam will be having while we’re in Denver isn’t scheduled until we’ve been there for a full week. That’s another week we have to make it through.
We’re at the point where I’m going to have to wean him if we can find something to wean him to. That’s a challenge in and of itself since he’s reacted even to the elemental formulas we’ve tried before. I really hate the thought of weaning him, but things are so bad right now. The thing is, though, that we can’t attempt that until after his endoscopy/colonoscopy are done, since we need to get accurate results.
Ugh, I know this is a big whiny post, but I just don’t know what else to do right now. I hate that it’s come to this. All I’ve ever wanted when dealing with this crap is for him to get better. We’ve gone so far in the opposite direction that it’s hard to even imagine that possibility right now.
I really, really hope the folks in Denver can help us. I’m putting so much hope into that trip. I just don’t know what else to do at this point.
I Should Have Gone to Medical School February 7, 2009
I know, I know. I have neglected my blog to the point where it is just plain embarrassing.
I’m starting to think a medical background might have served me well. Heck, at this point I think I’ve earned an honorary MD. We’ve definitely had our fair share of all things medical related these days.
Adam’s speech is delayed, so we had to take him to get his hearing tested. Of course we couldn’t just get an “everything looks good here.” His pressure test showed that he had fluid in his left ear, and there was no cochlear activity on that side. His right ear checked out fine, but that was enough for a referral to an ENT. The last thing we needed was another specialist, but off we went.
The pediatric ENT confirmed the fluid and said that if it hasn’t resolved itself in 3 months then Adam will need tubes. So, we wait and see.
Then we had an Early Intervention evaluation done. Adam tested at above age level for most things, and he even tested at age level for communication because his receptive language is so above age level that it balanced out his delay in expressive language. Normally they wouldn’t qualify someone with those results, but since Adam is so behind with his speech (only 17 words as of the evaluation, about 25 or so now) they went ahead and qualified him for services. A speech pathologist will come to our house twice a month to work with Adam for an hour each time. That will start next week.
Our other medical update comes in the food allergy department. We have decided to take Adam to Denver where he will be seeing the doctors at National Jewish, one of the top allergy hospitals in the country, and at The Children’s Hospital of Denver, one of the top hospitals for GI issues. Adam’s issues have been getting worse instead of better, so we feel like it’s time to break out the big guns.
I cannot begin to describe how impressed I am with the people at these two hospitals. I’ve been working with one of the coordinators in the GI department at the Children’s Hospital of Denver, and she’s been wonderful. She asked me to email her a detailed version of Adam’s history, and Adam’s case was actually discussed during a department meeting of all of the doctors. He’s not even a patient there yet! We would never be able to get that done here. The head GI there even asked for my phone number so he could call me to discuss Adam’s case.
They recommended that Adam be enrolled in National Jewish’s Pediatric Day Program. It’s a two week program where Adam will be seen by both an allergist at NJ and a GI at the Children’s Hospital, have a bunch of testing done, and we will attend educational classes, sessions with a dietician, and more.
The GI coordinator asked that I have all, and I do mean all, of Adam’s medical records sent to her so that they can be reviewed by the doctors there. Adam has seen 11 doctors/specialists, so this has been a full time job in and of itself. I’ve had to request so many records that my head is spinning. She also asked that we have the actual biopsy slides from Adam’s two endoscopies sent to them so that they can be reread by their pathologists. They are in Denver now.
I spoke to the financial coordinator at National Jewish yesterday. This trip is going to cost a fortune, but it doesn’t even matter at this point. I put down my large deposit, so we should be getting dates soon.
I think it would take up my whole front page to explain the food allergy stuff in detail. The bottom line is that we haven’t made any positive progress in almost a year, Adam has been having one reaction after another, I can count the number of foods I’m eating on one hand, and I’m currently grainless. You know things aren’t good when you wind up eating straight cane sugar to keep your blood sugar levels up.
So, Denver it is. And I’m hoping sooner rather than later.