Friday, June 12, 2009

We went to the Pediatrician's office this afternoon for a weight check. Ryan had lost 5 ounces in 24 hours. Hmmm... not good. But, he seems to be doing better this afternoon.

Thursday, June 11, 2009

Ryan and I made a trip to the Pediatrician's office today. He is really just so great to us. Did I tell you that he called us last night at 9.30 and at 10 pm just to check on Ryan? He was obviously worried, as I am as well.

The vomiting continued today. Not as frequently as on Sunday, and it doesn't seem to distress his body as much. He continues to stay awake after vomiting and seems to be alert. He had only vomited once today when we met with the Pediatrician. The plan then was to nurse as frequently as Ryan wanted followed by as much Pedialyte as he'd take. Assuming he didn't vomit more than once in 24 hours, we were then going to introduce Neocate, which is a formula void of any cow's milk ingredients. It is made from amino acids, and provides all the nutritional support he might need. We had planned that if he vomited more than once, we'd simply back up a step.

So, since he has continued to vomit, it looks like we're back to square one. The big challenge is to be sure he doesn't become dehydrated again.

Maybe some day Ryan will be running around the house creating absolute chaos, and perhaps I'll think back to this day and wonder why I didn't enjoy the quiet times more.


Main Entry:
1tri·al           Listen to the pronunciation of 1trial
1 a: the action or process of trying or putting to the proof : test
: a preliminary contest (as in a sport)
: the formal examination before a competent tribunal of the matter in issue in a civil or criminal cause in order to determine such issue
: a test of faith, patience, or stamina through subjection to suffering or temptation ; broadly : a source of vexation or annoyance
4 a
: a tryout or experiment to test quality, value, or usefulness — compare clinical trial
: one of a number of repetitions of an experiment

Remember when the GI Specialist recommended "a 3 week trial." I thought at the time that he was using the word "trial" to mean definition #1a or definition #4a. I didn't think it was going to be #3.

Perhaps I was wrong. This "3 week trial" is beginning to feel like a real trial.

Ryan started vomiting again yesterday morning, and has continued to vomit every few hours for 24 hours now. He is still doing significantly better than last weekend, but he is obviously not feeling well. We have an appointment this afternoon with our wonderful Pediatrician. Again, I cannot say enough wonderful things about our Pediatrician. He called me 7 times yesterday to follow up on Ryan. He even gave me his home and cell phone numbers. Isn't that amazing?

Hopefully this trial will be over soon.

PS I see the blessings. I know Heavenly Father loves us and is watching over us. Please do not think that because I express some feelings of frustration that I do not see all the amazing things happening in our lives. I really do.

Wednesday, June 10, 2009

Starting Again?

This morning I bathed Ryan, dressed him and nursed him. I then carried him downstairs to answer the door. As we walked into the living room, Ryan vomited. That was around 10.45 am And, it's now 2.38p and he has been asleep since.

We've been on the phone with our Pediatrician several times. (Have I mentioned how much I love and appreciate Dr. Rhame?) He has looked at all the tests results from the hospital, talked to the hospital's attending Pediatrician, and to his GI Specialist. We've decided to stop the formula, nurse as much as Ryan will, and offer Pedialyte in between feedings. We'll go in and see Dr. Rhame tomorrow afternoon. If Ryan seems to be dehydrating, or having a tough time breathing, or looking pale, then I'll take him back to the ER again. Hopefully, the next 24 hours will just go smoothly and we won't have to do that.

7.55 pm update: Ryan continues to vomit every couple of hours. Dr Rhame has been keeping in touch with us & we're going into his office tomorrow. Hopefully, we'll get through the night. At least he has the energy to be a little grumpy tonight.

Tuesday, June 9, 2009

Ryan's Hospital Visit

Well, we made our 2nd trip to the Emergency Room on Sunday. It seems the problems probably started on Thursday. You probably remember from previous posts that Ryan's GI specialist had recommended adding a calorie- and protein-dense formula to supplement Ryan's nursing diet with the hopes of putting a little weight on Ryan.

You might also remember that I had some concerns about doing formula since all 5 of the other children have been lactose intolerant, and 2 have had milk protein allergies. I expressed that concern to the Dietitian and the Nutritionist last Thursday. They assured me that this "new" formula, Peptamen Jr 1.5, is great for all children and shouldn't be a problem since it's pre-digested. So, I started the formula Thursday evening.

He took it without any problems and I was even quite pleased when he finished off a full can in less than 12 hours. He seemed to like it. Friday went fine. We continued with the new supplement schedule and nursing. All seemed good.

Then Saturday morning rolled around and Ryan didn't want to wake up to eat. He didn't want to be touched and would do all that he could to avoid any kind of interaction. He mostly slept all day. Sometimes Ryan has not so good days and I figured we were just having one of those. At 2 pm I realized that he had refused food all day and so he had eaten nothing. Nothing in 14 hours.

I started to push to get him to eat. By bedtime, I managed a brief 3 minute nursing session and 1 1/2 ounces of the new wonder formula. He just lacked interest and was really tired. Around midnight he woke up with the saddest cry and was not comforted when I picked him up. That was odd. He doesn't usually wake up crying. In fact, he seldom ever cries but when he does I just hold him or nurse him and the world is good again.

He also had a slightly poopy diaper, but it stunk so bad that I decided to give him a bath. (Yes, in middle of the night.) I bathed him, tried to nurse him, but he wasn't very interested. So I gave him about 2 ounces of the new formula and put him back to bed.

On Sunday morning, I woke up early to get me and everyone else ready for church. The night before I had put a cute little Ralph Lauren blue sleeper on Ryan thinking that he could just wear it to church. So, when he woke up, I changed his diaper, and put him in the carseat feeling pleased that he was all ready for church. I noticed that his diaper was barely wet and thought to myself, "These new diapers are really impressive. You can't even tell it's wet." Then rushed out the door to get to church on time so that Jacob could pass the Sacrament.

Dwight carried Ryan into church in his carseat, sat down next to me, and told me that Ryan had just thrown up on the way into church, but didn't seem to be seizing. (He usually throws up right after a seizure.) So, I gave Dwight an extra set of clothes and diapers for Ryan, and the 2 went to the restroom to clean Ryan up. When they didn't return for a while, I sent David to check on them. David returned and told me that Ryan had thrown up again and that Dad needed my help. So following the Sacrament, I went out to help Dwight. At this point, Ryan had thrown up 3 times. While talking to Dwight, he mentioned that Ryan's diaper was dry, and I realized that what I had attributed to awesome diapers was really probably a diaper that was dry. That meant Ryan hadn't had a wet diaper in almost 12 hours. Not good.

So, Dwight and our good friend, Matt gave Ryan a Priesthood blessing and we headed off to the Emergency Room. Ryan continued throwing up, another 5 or 6 times. They finally gave him an IV (after 3 attempts ... should have listened to me about where to place it ... another story), and started him on some meds for the nausea and IV fluids.

He tested positive for blood in the stoole, and so they did an air enema. Yes, it was as awful looking as it sounds. The radiologist told me how lucky I was that I'd be able to seem my child's intestines. "Most parents don't get to do that." Really? Lucky? I'm not sure I've ever thought ... "Wow, I sure wish I could see my child's intestines!" How about you? Anyway ...

They thought it was possible that his intestines had become twisted or blocked. But, the test turned out to be normal, which was a relief.

This is getting too long ... so, let's just skip to the end. We spent 2 nights in the hospital, had LOTS more tests done, and the result ... "We don't know what happened." He had a few signs of infection (elevated white blood cell count), but no fever. He had signs of an allergic reaction (vomiting), but they wouldn't expect the extreme altered state/lethargy with an allergic reaction. They are still not sure what caused the problem, but since he is more alert, eating and peeing again, they sent us home.

We are thankful Ryan is home. I wish we had more answers. I am grateful for kind nurses and 2 very kind attending pediatricians. I really just wish we had more answers. I feel like we do a lot of tests but never get answers. I understand that sometimes an "answer" is nothing more than a lable and it doesn't really change anything. But, sometimes an "answer" or a "label" tells one what they can expect or how to treat something to make it better. Sometimes it simply offers a way to study and learn about stuff so that you can feel comforted by knowledge. Anyway ... thanks for everyone's prayers and support. I'm so thankful for all of our amazing friends and that you all share this journey with me. I appreciate your love, hugs, and support!

Oh, they told us to slowly resume his normal diet. So I started nursing him in addition to the Pedialyte on Monday evening. This evening I gave him 2 ounces (1 ounce and then 2 hours later another ounce) of the formula. The attending Pediatrician thought maybe the formula is just too dense and it dehydrated Ryan.