Wednesday, January 11, 2012
At noon, Elijah was happy and playing normally. One hour later, he began spiking a temp and wanted to rest. Nothing normal about that for him. By the time we made it to the hospital, his temp was 104.5. he was readmitted to the bmt unit. his temp is still 104.9 with Tylenol. They have taken blood cultures, started him on antibiotics, and are consulting with Immunology tomorrow. He was just in the clinic yesterday and things seemed stable. He looked at me about an hour ago and burst into tears. This is only the second or third time I have seen tears during the past 7 months...unless you count mine..He is an amazing little boy..so gentle and sweet. It is so hard to watch him struggle and so easy to love this little boy. He has many friends on the unit and they have been glad to visit with him. I am praying for a restful night fOr Elijah..he needs to gain his strength back. Please pray for him tonight if you could.
at 8:52 PM
|Isaac enjoying a Minnesota Wild game last month!|
Case in point..when to head to the emergency room. Assessing when it's time to head to the Emergency Room for a medically complex child is always a fine art. Too soon and it just exposes the child to a whole new set of germs. And too late is just not what I want to think about...Let's just say, I rather err on the side of too early.
And so, Isaac and I spent 16 hours in the ER. We were actually admitted to the hospital but there was no room in the inn (or any inn in the city.) Not the best night to find ourselves in need of medical care with no reservation. But, Isaac was vomiting up dark, old blood. He had had some drainage like this from his g-tube in the past, but this was different. Not only was it draining, but he was profusely vomiting this stuff up. We had already received orders from the doctor to bring him to the Emergency Room if there was more than 100ml's or if it was bright red drainage. He clearly was within those parameters. I like parameters...I don't need to do much deciding as to the next step... And so at 8pm in the evening, Isaac and I headed to the ER.
It was packed in the ER....really packed. In the midst of Isaac retching and vomiting up blood, he was smiley and happy. His smile and laugh did not put him into priority status by any means. Usually, when we arrive in the ER, we get triaged right back to the unit...but this was not happening tonight. We sat in a waiting that look like a United Nations convention of sick toddlers. RSV has hit the Twin Cities with a vengeance and the infants with awful coughs were right sitting alongside of us. It was germ central but I had a little baby coughing up blood from who knows where...and so I didn't question my judgment to bring him in..yet..
During triage, the nurse (albeit very pregnant and working triage on the one of the busiest nights in the ER) tells me that I need to get on the scale first..they would weigh me and then I would hold Isaac and get his weight that way. What?!!! We were at Minneapolis Children's..the largest children's hospital in Minnesota. Proud of myself for my assertiveness, I said no. He had just been weighed that day by a nurse and he gets weighed weekly. I had a detailed record of his weight with me. She gave me the answer that everyone gets..."We need to take use our own scale. We need it to be accurate." Like weighing me first and then me holding the barfing child is going to more accurate! So, when I refused, she finds another nurse and says in front of other patients, "She won't get on the scale, can you do it?" This situation was becoming even more embarrassing..and so I got on the scale. What a way to start out a crazy ER visit!
So, once we made it back, we were able to see a friendly and helpful ER doctor who decided to admit him. But there were no rooms at the hospital or for that matter, any children's hospital around. So, we were staying in the ER. Several patients were being transferred over to St. Paul Children's and staying in the ER sounded better than a transferring adventure at that point. After an xray, IV insertion, and some blood work drawn, we were settling in for the night. There are no pillows in the ER, no "comfy" sleeping chairs, no way to leave your child if you need to walk around the halls to take a break. We were boarders in the ER. Thankfully, my sister came to help out.
By the morning, with no sleep and a child that had stopped retching and there was no sign of blood, I began to wonder if we should have waited to bring him in. Don't get me wrong, I was thankful to be thinking this...it's always better to have a not so sick kid in the ER, than a really sick one. But, it just seems that coughing up blood is never a good thing...
Once, Aaron was shooting spinal fluid out of the back of his head. Now, wouldn't anyone agree that that is an emergency? It seemed like it to me and I would think any other mother out there. Not, to the neurosurgeon who was out of town. His response to my frantic phone call was..."as long as it isn't more than 8 ounces of fluid shooting out, you don't need to bring him in..." In my world, no amount of spinal fluid shooting out of my child's head is acceptable and so I took him in anyway..to a different facility. And he was okay...but I needed someone to take my concerns seriously, do a CT and glue his head shut for me..thank you Minneapolis Children's!
Our experience in the ER was a positive one overall...the doctors were outstanding and the nurses were great. We certainly understood that they were doing all that they could about not having a bed for us in the hospital. Finally, one of the gastroenterologists came in to discuss what we were going to do. He apparently was having a bad day. He asked me, "I understand he was vomiting dark blood but, why did you bring him in?" and then "Were you expecting us to do an endoscopy by coming to the ER with him?" No...I was expecting you to help figure out why he is vomiting up blood. I didn't come in with an agenda. I wasn't using the ER as a way to avoid scheduling an endoscopy. My son was bleeding internally. It seems like a good time to go to the ER.
After an initially tense discussion with the gastro doctor, he stopped reacting and started listening. He explained to me that it is not uncommon for kids like Isaac to have this kind of bleeding. Isaac can not tolerate anything in his stomach..his feedings and medications are all given into his jejunum. Kids who have retching like he does can develop irritations in their stomach, develop internal granulomas, or have irritations along their throat as well. Isaac had very strong hiccups that preceded the bleeding. The hiccups or the retching could have broken lose a sensitive spot in his tract. He recommended an outpatient endoscopy.
That is all I needed. I just needed an explanation of what was most likely happening. I needed to hear that. I may be familiar with medically fragile children and the issues they have...but I am not, nor ever claimed to be, an expert in any field...except my child. I am a mom. And when my child is sick, I just need someone to listen, to share my concern and to help me understand what is going on. I need to know what I should do if there is a next time. And I need someone to recognize that my concerns deserve to be heard and respected...because my child is worth the time it takes to listen.
So, we are back home and Isaac is doing fine now. It was scary, but he is doing well now. An experience like this reminds me of how fragile Isaac is...and how precious he is to us. We are so thankful. There are a lot of children sick right now..and a lot of dedicated hospital staff that are working tirelessly to care for them. They could all use our prayers...
at 11:29 AM