This post is for all of you either looking to know more about Hirschsprung's Disease, of those of you with kids and babies who have it that have a Pull Through Surgery in your future.
While learning how many people struggle with disease, and how common it is, I'm surprised how little information, books, and stories of people out there with it there are. I try to find out everything I can on it, like you do when you have a sick baby. Even when I type Hirschsprung's on here it tells me it isn't a word. Honestly, the most help I've gotten is on the Baby Center forum they have for it.
Before I had Micah, I had never hard of Hirschsprung's Disease. When I had it, and we were transferred to Primary Children's Medical Center, I had never seen the word before looking at the admit papers. It's terrifying to look at a piece of paper with a diagnosis on it and have absolutely no idea what it means. You don't know what questions to ask, or how to help your baby. And that's a lot of why I made this blog. Things like this is what helped me most, even more than doctors and nurses. They'll give you the cold analysis, things like this will give you tips the doctors never even thought of. Because, in the end, it's the parents that are sent home with these babies, and the parents who learn how to work with them.
So here we go, here's what's helped us during our Pull Through Operation hospital stay.
1. Hot Packs
Your baby is admitted, and when you walk into the hospital with them, they are no longer allowed to drink formula or eat baby food. You will likely be allowed clear fluids, depending on your child's surgeon, up until six hours before. After his surgery it will be days until you child eats again. My son had his operation on the 8th, it is now the 13th and they still have no idea when he'll be able to eat. Hot packs have been saving us. Begin to swaddle your baby, do one side and then before you do the other put a hot pack over where his belly is. Don't let it touch his skin, but he'll feel the heat through the blanket. Finish swaddling him to hold it in place. This will fool him into feeling like he's eaten, and likely get them just comfortable enough to fall asleep or calm down. It's worked wonders for Micah, and even though it's a very temporary fix it helps. We have them keep us stocked with the hot packs, and I don't know how we'd get through without them. We have to do this multiple times a day, but it almost always calms him down. Remember that some of the crying your baby might be doing could be from hunger, not always pain.
2. Try Not To Give Morphine, As Much As Possible
It's tempting to want to take away your baby's pain as soon as they start feeling it. Nobody wants their baby to scream in pain and be miserable. Morphine will slow down your child's GI system from waking up, and it builds up in their little bodies and slows their breathing down drastically. Given too much, and no it isn't uncommon, your child will code. They will stop breathing. It almost happened to my son, and it's shocking to hear from as many parents as I have that it's happened to their child. Your baby will not only keep breathing, but will be able to pass stool much quicker and eat quicker when you don't give morphine all of the time. In my experience the 2nd and 3rd day are the worst after surgery, then it starts to get better rather quickly. Hold your baby in the ways they like, distract them, sing to them. It helps them heal quicker and feel more loved than morphine will.
3. Keep Up On The Tylenol
Micah is being given Tylenol, and from what I've heard it's pretty common for them to receive. Where you want to get off of the morphine as quickly as possible, you're going to want to stay on top of the Tylenol. It will help them through the pain, and it wont relax them enough to stop breathing. The nurses wont always stay on top of it like they should, they'll ask you if you 'really want it right now' because 'after all, your baby isn't crying at the moment'. But here's the thing, your baby will start crying and the longer you go between the doses the harder it is to get back under control. It seems like an obvious thing, but I guess it isn't to all of the nurses. Whenever we get a new nurse I've started informing them, politely of course, that we want to keep up with the Tylenol and give it right when he's due for it. Some of the nurses act like it's obvious, others give blank stares and then agree to it.
4. Have The Hospital Bring In Mobiles And Toys
Keeping Micah playing and distracted has helped. He gets bored just laying in the crib all day and night, and he doesn't want or need to sleep 24 hours a day. He personally can't leave his room because of infections he's had, but there are things that we can bring to him. The hospital has their own toys that they have brought to the room such as a toy arch, or whatever they're really called, and a musical mobile. I can't say he laughs and plays as energetically as he does at home, and he isn't always in the mood to play at all, but it helps him keep moving and sometimes he does get into and has fun. It keeps his mind stimulated and helps him not get clots because he's moving so much. From home we brought him a couple of toys, such as his set of keys and a stuffed Eeyore that he's been liking to sleep with for about a month. I think it's helped, and at the very least it hasn't hurt.
5. Stay With Them As Much As Possible
A lot of children's hospitals have many arrangements set up for parents who want to stay with their kids. Micah's room has a couch that turns into a bed, and although it isn't comfortable it works. They also have a Ronald McDonald Family Room down the hall where you can nap on a bed, a real treat when you're here, cook meals in their kitchens, do laundry, take showers, and just relax and read or watch t.v.. They also have computers with internet in there, and the food in the kitchen has been donated and is free to families staying at the hospital. It's made our stay considerably cheaper and more comfortable. I don't like leaving Micah for long, but the cafeteria downstairs adds up and, where it's a novelty to eat their food at first, it gets old really quick. These type things are so appreciated by the families that need them, and it's so important to have them. I am extremely grateful that our hospital has this. I know that since it's down the hall, if my baby or the nurses need my they'll come get me. It's something that wouldn't happen if I were to go downstairs to eat. It also basically eliminates the need to leave the hospital. If you're like me you're not going to want to leave, and that's why they have these things.
Thank You to the people who fund these things and donate. It's made a rough time much easier.
Also, many calls are often needed to be made rather quickly. I'm much more comfortable agreeing to things if I'm there when they decide it's what they want to do and if I talk face to face with the surgeons.
ANOTHER reason you should stay: your baby needs you. They need you to be there to advocate for them. For a lot of things they aren't going to call you to ask you about, even if you ask them to. They wont call to give him morphine, for example. Some nurses don't try many things before they resort to the morphine, even though many many other things often work better than the morphine. I've found that if I'm not here to hold him and play with him and soothe him, I can't always count on the nurses to do it. I was told by a receptionist (I think that's what she is at least) that she felt so bad for Micah because he was screaming and screaming and they gave him morphine and he just continued to scream and nobody tried anything other than medications. Most days we have amazing nurses who will work with him, but sometimes we don't. I can tell you from being experienced in Micah's cries that he was probably hungry. I can tell you a hot pack probably would have soothed him, and I can also tell you that nobody tried the hot pack or holding him. I know because I asked. The one time I leave the hospital is the time we get a lazy nurse. It was bound to happen, and I wont be leaving now that I know I can shower and wash my clothes here.
6. If Baby Likes Something At Home, They'll Probably Like It Here
Something that's helped us is bringing things that he enjoys to the hospital and doing things with him that he enjoys at home. I don't know why I didn't think he'd want to be held up to my shoulder, it's the most calming thing for him when we're at home. He loves his Eeyore, he loves the smell of lavander, and he loves classical music. If your baby loves something at home, try it here. They might not be ready for everything right after surgery, but you know your baby best.
Thanks for reading! I hope that if you're another mom out there looking for information like this, that this helped a little.
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