Saturday, January 27, 2007

Tooting his own horn

Eli has starting passing gas again. I know he will hate me later for sharing this with the world, but gas is good! His belly is a lot softer and he's back to looking like my skinny boy again (compared to my little grape).
I pestered the nurse to keep paging the surgeon when he forgot to come back this afternoon. I had to wait until 4 pm this afternoon until he could come and talk to us about the x-ray. The good news is that the x-ray looked a lot better. Not normal, but a child w/ short gut never has normal x-rays of their gut. The air pockets have decreased and his small bowel no longer appears obstructed on x-ray.
Eli decided the he wanted his NG tube out this afternoon, so he "helped" in its removal. I still had to get the official "ok" from the surgeon to not put it back in. Eli is still pretty mad at the world, but at least we can now walk around the room w/o being attached to the suctioning machine.
I also worked my negotiating skills and got the surgeon to agree to restart Eli's feeds tonight. It's hard to tell how he is doing so far, but we restarted him at 20 cal formula running at 10 ml/hr (his normal formula is 24 cal w/ 3% pectin @ 24 ml/hr). They also restarted his reflux meds and changed him over to oral pain relivers iso rectal Tylenol- Eli is very happy about that one. No poop so far, but I just heard a few toots from Eli in his swing. Please pray that things start moving through and we won't need to stop his feeds & continue bowel rest.
No word as to whether we will actually be able to go home tomorrow. My gut tells me it won't happen. I just know how hospitals work and so far I have only had one health professional (surgeon) say that is a possibility. Eli's GI doc and ped aren't available this weekend, so we have to work through partners from their practice. It is very difficult to convince other medical workers about what "normal" is for Eli. We may end up staying until Monday or later, depending on what Eli needs to accomplish before he leaves. I guess I will know more in the morning.
Eli continues to prove he is one resilient little guy. Please continue to pray for our little fighter.

No new zippers

I just saw the surgeon this morning and as of right now it looks like Eli will not be having surgery. His belly is much softer and the distention way down. We are waiting for the conformation from his x-ray that his obstruction has cleared.
I haven't met with his GI doc or ped today, but the surgeon said he wanted to give Eli one more day of bowel rest. If the x-ray looks good, they will restart his feeds tomorrow morning and he can go home! I am still waiting on a few more docs & x-rays, but I am just ecstatic that Eli will probably get through this without another surgery.
Eli is not quite so chipper this morning. He is PISSED about the huge tube going down his throat and continues to gag every few minutes. The surgeon wanted to leave the NG suction on for 24-hrs, just to be cautious, as Eli did have some major distention issues yesterday. Hopefully it won't be another full day & night of Eli doing 15-minutes rest, gag, wake up & scream for 2 hours until he can get his pain meds.
I want to thank everyone who has continued to pray for Eli. The Lord truly answers our prayers and I know he is watching over our little Eli. Keep growing strong little E.

Friday, January 26, 2007

A familiar face (surgery update)

The pediatric surgeon stopped by, a man I know all too well. He was the same surgeon who worked miracles on both Eli's NEC surgery and reanastomosis. So, at least I am comforted by a man who is very familiar w/ little Eli's bowels.
The surgeon explained the obstruction as basically your bowels are a set of tubing, and for Eli a very short set of tubing. Eli has a lot of scar tissue and strictures that create "cobwebs" in his bowels. So, it's not uncommon for kids who have had multiple trauma to their bowel for it to get tangled in the "web" and become obstructed. It was upsetting to know this could easily happen again and there isn't anything we can do to prevent it. The surgeon did say that after ~2 yrs the likelihood of further obstructions decreases. Still, I hate the thought of Eli having more ongoing complications, but I guess this is the deck he was dealt when he had his NEC surgery.
So, back to our plan for his current obstruction. We are waiting for 3 possible scenarios:
1) The NG relieves pressure in Eli's bowels and they unravel themselves
2) Eli goes to surgery and they are able to just untwist the intestines
3) Eli goes to surgery and they remove the portion of bowel that become obstructed
The surgeon said the likelihood of Eli not needing surgery is definitely not as good as a kid w/o any prior bowel surgeries. He is giving him until tomorrow morning before he re-evaluates him for surgery. Eli will have repeat x-rays in the morning and if they show little progress or his condition worsening he will go to surgery. We won't know the extent of the surgery until after they are done.
The one good thing, if having your baby in the hospital w/ a high possibility surgery tomorrow could have a good thing, is the recovery time after surgery is nothing like when Eli was in the NICU. The first surgery scenario (no bowel removed) recovery time was est 2-4 days and the second 5-7 days.
With Eli's short gut, he really can't loose any more bowel length. Please pray Eli's little body can heal itself and he will not need further surgery. I'll update when I know more in the morning. We still have no poop and a very cranky little Eli.


Elijah and I are back at Children's. I took him into the ER early this morning after Eli spend an entire night of constant pain. His poor belly was bright right & modeled and he hadn't pooped in 13 hours. I know we prayed for his stooling to slow down, but I knew something was very wrong.
It is a pretty sad thing when a tiny baby screaming like he is in agonizing pain does not constitute a priority in the ER. We had to wait for 2 1/2 hours before we even got back to an exam room. I was so PO'ed, as I told the triage nurse Eli was high risk for infection and she insisted we wait in the waiting area w/ all the other sick kids.
The admittance wasn't any easier despite the fact we've now been to the same ER 3 times in the past 10 days. It took 3 tries to get an IV in Eli's scalp and they drew 8 viles this time in order to run every possible lab (nutrition, electrolytes, CBC, CRP, full liver function panel, the works). We made our grand journey down to x-ray and they took lots of pictures of Eli's swollen belly. Almost 5 hours after we first entered the ER the attending doc made her diagnosis, bowel obstruction.
I haven't actually seen Eli's GI doc yet, but I heard through the medical-telephone that his x-ray showed a complete fluid & air blockage. We got the "do not pass go" pass this time and they tucked us away in a teeny-tiny corner room. Seriously, you think you would be more accommodating to a mother w/ three young children. This room has enough space to walk-in, turn around- in the same spot, and walk out. It should be interesting when the girls get here. While I am on my rant about family accomidations, I have been now sitting in the hospital for 9 hours w/o anyone offering anything to drink or eat. I know, it's not about me.
So, we sit and wait. I hope to know more of a game plan when I actually talk to Eli's GI doc. Normal treatment for obstructions is NPO (nothing by mouth, we stopped Eli's GT feeds) and maintenance IV fluids. They will continue to monitor Eli's obstruction w/ x-rays and we just pray it will be able to repair itself w/o any intervention. Eli will probably need a NJ tube (tube from his nose to his jejunum) to help relieve the pressure in his belly. Hopefully something will work and Eli can be more comfortable. I don't know how long it will take to heal, but I have heard 24 hours to several days.
I will hold up camp at Children's until Eli can come home. I can't bear the thought of leaving my baby boy all alone. Grandma should be coming to our rescue soon w/ Eli's personal swing, so hopefully I can get our little guy to rest. I lucked out and got a laptop from the Family Resource Center, so I should be able to update the blog and keep all Eli's loved ones informed.
If everyone who reads Eli blog could please say a prayer for our little guy. He has had such a rough road and it just breaks my heart to see my baby boy in pain. Pray Eli's bowel heals and we can return home very soon.
ETA- I just got a call from Eli's GI doc. Apparently he sent a referral for the pediatric surgeons to come and talk to me. Please, please pray Eli doesn't need another bowel surgery. Eli is such a little fighter, but I just wish things didn't have to be this way for him.

Thursday, January 25, 2007

Yet another two steps back

Not feeling so hot

Eli was having such a great last week; gaining weight like a champ, smiling up a storm and just being an adorable, content little guy. Eli was up to 7 lbs 5 oz last Saturday and then the fever hit.
I don't think I realized how sick Eli was getting until Monday morning. Sunday he was acting lethargic, but I assumed it was because he had a busy day visiting his Uncle on Saturday. Eli fell asleep on my bed while I was making dinner on Sunday, so I just let him sleep. Well, he didn't wake-up. I went to check on him 2 hours later and he was so hot. I took his temp on the stupid Celsius thermometer and it was 40 C. I couldn't do the conversion in my head (I later learned he had a temp of 104), but I figured he was warm b/c we have the space heater kicking out 85 degrees of heat, he was in a fleece blanket sleeper and swaddled in a fleece blanket. I unwrapped him, changed his diaper, and Eli fell back asleep w/ his little legs still sticking out of his sleeper. I assumed he would wake up soon & be pissed off that he wasn't swaddled. Well, he slept on my bed for another hour and a half until I woke him again. Eli's temp had dropped to 39 C w/o his eskimo dressings, so I knew he had a true fever. I gave him some Tylenol and he fell asleep in his swing and didn't wake up once during the night.
I woke Eli as soon as I woke up Monday morning and realized he had actually slept through the night. He still felt warm and didn't really wake up even when I undressed him. I could tell just by looking at him that something was very wrong. I went to weigh Eli and found that he had dropped 10 oz overnight! Eli was back to 6 lbs 11 oz and looking very, very frail. So, I packed up my sick little guy and headed back to the dreaded ER at Children's.
When we got to the ER at 1 pm I couldn't believe how crazy things were. There wasn't a spot to sit in the waiting room, there must have been over 30+ coughing, sneezing, and puking kids waiting. I begged the triage nurse to let us back into an ER room and luckily there was a room that they normally don't use for patients, but the nurse said it would be ok to let Eli wait there.
I told the triage nurse that Eli needed IV fluids ASAP and she said someone would be in shortly. So, we waited, and waited, and waited. 3 hours later I finally got to see a nurse. They hooked Eli up to an IV (not fun on a very dehydrated baby), but this time it only took two attempts. They also drew some labs and told us to wait until the labs came back to determine a game plan.
Another hour and a 1/2 later we finally saw a doctor for the first time. Eli's labs showed that he was dehydrated again. His BUN (measure of hydration) was up to 33 (last Sun when we were in the ER for dehydration it was 25). The good news was that his CBC (WBC count- indicator of an infection) and electrolytes were normal. The ER doctor wanted to admit Eli, but I really didn't think it was in his best interest to be around a ton of sick kids if he wasn't in fact sick. The doc said that she would give Eli two more hours of IV fluid and re-check his BUN. Well, 2 1/2 hours later the lab guy comes, takes three pokes to get his labs and we sit and wait again.
By this time we had been in the ER for 8 hours, long enough for the ER doctors to change shifts. The new ER doc came back and said that his BUN had only dropped to 31 and they wanted to admit him. I asked for them to call his ped or GI doc, hoping they would let us just go home. Well, 10-min later the new ER doc came back and said we were ok to go. I didn't hesitate to take our "get out of jail free" card. We made it out of the ER relatively quickly (45-min) and the only drama was the stupid d/c nurse hastily ripping out Eli's IV taking a good chunk of hair and eyebrow with it.
Eli and I made it home by 9 pm (we left for the ER at 11 am). Eli's temp had gone away and he was very happy to be home in his swing. I thought all was well until I got a panicked phone call at 7 am Tuesday morning. The original ER doc that saw us called and said I needed to bring Eli back into the ER right away. I called the ER and spoke w/ her and she demanded to know why we just left. Uhm, hello, Eli's ped gave us the ok to go home. Apparently one of his blood cultures showed had growth overnight and she wanted to have Eli admitted. I asked if we could just go the clinic to get a script for some antibiotics and she said "I don't think you understand, you have one sick little boy." I am of course in a huge panic now, so I asked if I would just go into the hospital and bring Eli through admitting. No, the ER doc said he had to be admitted through the ER. I asked how long it would be before we got up to the floor, and the ER doc said she couldn't tell me a time but they were very busy.
Well, it was going to be a cold day in you know where before I took Eli back into the ER for 8 hours around several dozen kids w/ flu, RSV, you name the bug. So, I called his ped's office instead. I got a hold of his ped and she agreed that it wasn't in Eli's best interest to be in the hospital if he didn't need to be. By the way the ER doc made it sound was that Eli definitely needed to be in the hospital for several days for IV antibiotics, but his ped said she was ok w/ him coming into clinic for them. So, his ped said she would call the ER doc back and tell her we weren't coming and I packed up Eli to bring him to the clinic.
Eli had repeat blood cultures done at the clinic and he got a shot of antibiotics. He wasn't a happy camper about either, but at least we didn't have to spend days in the hospital. Eli had gained weight since being in the ER, so it was a good sign that he hadn't depleted all the IV fluids he had just got. His fever was down and other then being cranky from everyone bugging him, Eli looked fairly good. His ped felt he was healthy enough to go home and gave me her direct line in case something changed.
It was quite funny actually talking to his ped about the ER doc. I definitely got the sense that she did not like the ER doc at all. Eli's ped said she was very upset that we weren't taking his "medical condition" seriously. Uhm, he has short bowel, he poops, alot. We already know those things. Eli's GI doc called his ped back Tues morning and said, a BUN of 31, heck that's great for Eli! The ER doc made it sound like he was turning into a baby prune or something. Well, Eli's ped and I agreed that we would not be bringing Eli through the ER at Children's anytime soon. The best thing about going into his ped vs. the ER is we got a plan worked out for when Eli get dehydrated. His ped gave me her direct line and pager and told me to call an hour before we go to Children's. She said either her or a partner would meet us in the ER, so Eli doesn't have to be seen by any doctors that don't know him. Hopefully this should decrease all the drama of medical prof. freaking out b/c he's a little guy who just poops a lot.
Tuesday and Wednesday were really no fun w/ Eli being super cranky. I got a good call back on Wednesday afternoon and his ped said the lab draw at Children's was a contaminate and Eli was not in fact septic. His draw at Children's grew Steptococcus, but his lab draw Tues at the clinic was negative (before any antibiotics). So, someone at Children's lab messed up and didn't get a clean draw. Just makes me even more glad that I followed my gut instinct and didn't haul my fragile little guy into the hospital again.
It hasn't been much fun the past few days taking care of crabby Eli. He is in a lot of pain from whatever bug he was and he isn't shy about letting me know it. The ped gave us the ok to add Motrin every 6 hours in addition to Tylenol every 4 hrs. It helped a little, but Eli still screams in dire pain every 1-1.5 hrs. It's as if he knows I have his drugs and just won't give them to him. Hmm, wonder where he got that from (for those family members that remember me after my c/s with Eli). I am going to bring Eli in to the ped on Friday for another follow-up, and if he is still inconsolable, his ped said she would prescribe some prescription pain meds to help make Eli a little happier and more comfortable.
A very long drawn out story to describe Eli's terrible, horrible, no good, very bad week, AGAIN. I really hope that Eli is starting to turn the corner on this latest illness. His weight today was much better, 3260 grams (7 lbs 3 oz). He still hasn't truly gained any weight since the middle of December, but my poor little guy keeps getting sick :(
Please pray that Elijah can get healthy and get back to growing more baby. Also, pray his pain can be managed, Eli can maintain his fluid levels, and he can stay out of the ER/hospital.
Keeping busy

Can't a little guy ever get a break?