The Lanksters: Lilly's First Hospital Visit

Well, this is one of the firsts I had hoped we wouldn't have to experience. But that was not to be. So you know from an earlier post that we have been dealing with some constipation with Lilly and she has been on a daily regime of Miralax for about a month. Well unfortunately, the Miralax wasn't enough. She had to be admitted this past weekend to the hospital for DIOS (distal intestinal obstruction syndrome). To make a long story short, Lilly had been vomiting once a day since Monday and her appetite had waned considerably. She really didn't have any other symptoms except for an occasional low grade fever of 99 degrees, so we were very stumped as to what was going on. We went to the pediatrician on Wednesday and everything seemed to check out. But when the vomiting didn't stop, we started to get really worried about the possibility of an obstruction, particularly once we realized that she really had not pooped much since Monday. I started calling Dr. Kanga's office and talking to them and by Friday, I was fed up and called the Clinic to leave a message for the dietician that I was really worried because we just couldn't explain what was going on. That eventually lead to their decision to see Lilly and to have an abdominal x-ray performed. So we quickly left work on Friday and went straight to the hospital for an x-ray. After the x-ray we met with Dr. Danov (another CF doc) and he explained that she was really full of a lot a poop to say it in layman's terms, or in medical terms, she had DIOS. It was in the early stages, so it wasn't terrible yet (terrible = very painful abdominal pains, constant vomiting, etc.), but it had to come out. We had two options - the first was to have Lilly drink a large amount of a substance called golyghtly every 3 hours at home (ever heard the phrase you can bring a horse to water, but you can't make him drink? - this was the very first thing that came to mind when I heard this from Dr. Danov) or we could admit her to the hospital and they would administer this through a feeding tube. At Dr. Danov's advice, we chose the latter. So we were admitted overnight to UK Children's Hospital and I will tell you, I am very glad we chose option B because it was TERRIBLE. I cannot imagine doing this at home. The nurses first hooked Lilly up to an IV (it took two tries in her hand - she has a terrible bruise - before they were finally successful in her foot) so she could get a dose of Zofran, an anti-nausea drug, and then the nurses inserted a feeding tube through her nose that they had to tape to her face so she wouldn't remove it. Lilly screamed and fought so hard that we had to put her arms in little restraints to keep her from pulling her IV and tube out. It was so hard. She was so scared and such a fighter - I admit that I had to leave the room several times because it was just so overwhelming. I am definitely going to have to grow some thicker skin if this is going to happen again in the future. Of course, none of this was inserted until 1 in the morning, so we were EXHAUSTED. From that point on, we slept for about 3 hours before the pooping started. And oh did it start. I lost count of the diapers we changed, but I am sure it was more than 30 in 12 hours. Lilly spent most of the night just laying in her poop - we couldn't change them fast enough and she couldn't stop pooping. She was obviously in pain with the stomach cramps and we were in pain watching her. By morning, Jeremy and I were covered in poop and pee and we all looked pretty rough. Lilly had a second x-ray in the morning to see her progress and things were looking better, but Dr. Anstead (another CF doc) was still concerned about getting everything out, so we kept going with the golyghtly (this is after Lilly finally managed to pull out her feeding tube and we had to insert another one). We went about 3 more hours before he finally decided that it was obvious we had flushed her out. Then we had to stay another 3-4 hours while they monitored Lilly to make sure she could eat and keep it down and that she wasn't dehydrated from the process. Lilly was a strict clear diet, so she hadn't eaten since Friday afternoon for dinner. So we slowly allowed her to have pedialyte and then some applesauce and finally a few tater tots. Thankfully she kept it down and we were allowed to go home around 7 on Saturday night.

Now that we are home, Lilly is doing SO much better. She is a pretty tough little cookie and I think the hardest part on her was being so scared. She would just start crying anytime a doctor or nurse came into the room, but as long as there was no one but me and Jeremy in the room and I was holding her, she seemed to be okay. I wish she could have understood better what was going on - I think that would have eased her fears, but she just couldn't grasp it for obvious reasons. To make matters worse, because of her CF we had restrictions while in the hospital and couldn't even walk the halls without a mask on - which meant not leaving the room. We were only there for 24 hours, but it felt like a week because of that! Since we have been home she has really perked up and played since we walked in the door. She is eating and drinking fine and keeping things down, but obviously worn out from the experience. The only physical signs left are rashes on her face and neck from the tape holding down the feeding tube and a much smaller belly.

As for what caused this, we really aren't sure. DIOS is common in CF children and rarely requires surgery, although the golyghtly process and the second option, an enema inserted by a radiologist, is no picnic. After talking to other CF moms, I have found out that their children have been hospitalized as much to 3-4 times for this condition - usually only 1-2 days. I cannot imagine going through this again but it is a possibility. Dr. Anstead said it is most typically caused by too few enzymes (I assured him that she hasn't quit taking her enzymes and he assured us that he didn't think that was the cause). He also said it has been known to be caused by too many enzymes. We had increased her enzymes the weekend prior, per doctor's orders, but none of us really think that is the cause. Lilly has just been constipated for so long that I think it built up to this. I don't think we really realized the risk. I just assumed if she was pooping and it was soft, we were okay. Not the case. She now has to take 1 capful of Miralax twice a day WITHOUT FAIL. I just don't think we can let up on this. I am hoping this will keep the DIOS from happening again because it was AWFUL. We will just cross our fingers.

Thank you so much for all the thoughts and well wishes from our friends and family! That was so helpful. This first hospitalization was very scary for us - we didn't know what to expect or how hard it would be physically, mentally and emotionally. Those that gave us advice, brought us clothes, or just generally helped us along the way made it so much easier to bear. We cannot convey our appreciation enough!