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Illnesses: Personal ExperiencesIllnesses are just a part of life for a child with Hydranencephaly. Here are some of the families experiences of caring for their children when ill. There is also advice on what to bring with you should your child need to go to the hospital. Karen, mom to Heather age 4: I try to have an emergency bag packed for when we might have to go to the hospital. (A lot like a woman who’s near her due date, but what do I know about that? LOL). I would have in my bag the obvious: a list of Heather’s meds and her medical history, loose clothes that can be used as PJ’s (at a university hospital, you never know who’s going to be traipsing into your room with their 10 students behind them), clean clothes and underwear, toothbrush, toothpaste, shampoo, soap, Bible, book, puzzle book, etc. Then I also pack some food. Our hospital doesn’t feed the parents unless you pay them. I also bring along extra money (if we have some, somewhere). Then there is the less obvious. You can bring along a project you’re working on...one time I brought my old calendars so that I could compile Heather’s History. Bring a little note book so you can write things down.
Some “good” things about the hydran child in
the hospital is that they aren’t trying to get out of bed all the time. They
aren’t being rude to the nurses. They are so beautiful that they get lots of
compliments. You can educate a lot of people at one time about the condition of
Hydranencephaly. You can see I’m really fishing here...there really is no good
thing about our guys being in the hospital. Lynne, mom to Nikki age 7: I too, have a "everything but the kitchen sink" bag that I keep either in the van or by the door that is ready to go at a moments notice. It has all of Nikki's meds in it for 3 days, a replacement g-tube, diastat, emergency suction, a change of clothes for both of us, plus an extra pair of underwear for me (Ha!, Ha!) and all of the usual shampoo, body wash, etc... I also keep a list of meds, when they need to be refilled, where I get them at (pharmacy name and phone #) a list of phone numbers and a phone card, and our "just in case list" a list of numbers when the inevitable happens :(... Jeanene, foster mom to
many: Anytime I have had a child in
the hospital, I stayed with them around the clock. I never left them unless I
was going to take a shower or get something to eat. When I did leave, I made
sure the nurses knew I was going and how long I expected to be gone. Lisa, mom to Noah age 4: We are treated very well in our local hospital as it is a small hospital and Noah is known very well. If I am concerned about Noah I now just have to ring the children's ward and let them know what is going on. I then take him to the ER and the kids ward have usually rung through and told them we are on the way. That way we get to go straight through. It is good to have this relationship established, but I know that not all families can do this - especially in larger hospitals. We don't have to supply meds or feeds BUT we always take our own meds as it takes them about 2 days to get all the meds up plus we also take a couple of feeds and then use the ones that they get up after that. If there are extra meals on the ward then the nurses will often offer them to us since Noah only has tube feeds. Sometimes they will give us meals all the time - it really depends on which nurses are on and how busy they are at the time. If we don't get meals we are able to get a meal voucher which allows you to buy food from the cafeteria at staff prices. They don't offer this to us though - we usually have to ask for it. I guess if anyone is going to hospital for the first time with their child they could check to see if something like that is available to parents. I always have a list of Noah's meds - including exact doses with me at all times. When I get to hospital I take two lists with me - one for the Dr and one for myself as I always end up being asked for it again. Yesterday the resident came in to ask me if I had a list of meds and I handed him the typed up list, and the ped that was on winked at me and said 'I told him you were organized'! LOL I NEVER leave Noah alone unless it is to have a shower or to quickly go up the hall to have a drink. Even then I will only leave if he is asleep and settled and I know he is not due for any meds or a feed. We do ALL feeds and give meds, but the nurses have to get the meds ready for us. Even though they get them ready I will ALWAYS run through each med with them as they hand them to me e.g. I get them to say '8 mls epilim', '1/2 tablet of baclofen' etc as they hand it to me. I can guarantee that each time we have been in hospital they have stuffed up at least one dose. Today they mucked up two meds this morning alone. I have also learnt to tell them that Noah gets his meds a 1/2 hour earlier than he usually has them. He usually gets them at 7.30 am and 7.30 pm at home but I told them yesterday we give them at 7 and 7 so we at least get them around 7.45. I have also learnt not to rely on them to do anything - I know that sounds terrible, but I just treat hospital as a little 'holiday' where we are staying in the same room together but I STILL do everything - e.g keep track of when his feeds and meds are due, check when his last antibiotic was and make a mental note about when the next one is due, make note of when he needs things like nebs. If I left it to the nurses I know that it could be an hour after something is due and they will come running in to do it. I’m afraid I’m not very trusting and keep onto them but we have a routine with Noah at home and I am not going to change it just because we are in hospital. Another thing I have learnt is to be assertive. For example Noah was up crying last night for 45 mins about 3am. I finally got him settled down and the nurse comes in 10 mins later to take his temp. I knew he would start screaming again so I told her I just settled him and asked if she could do it later on. I knew he was hot and he already had everything they could give him, so taking his temp wasn't going to change anything anyway. She agreed and he then woke 1/2 later crying again so I buzzed her then to come in and take his temp. I try to remember to take something like a book with me to read in the times that are quiet but often don't get a chance to sit down and read. I actually find that just something like a mindless magazine is better though so I can just read an article here and there and don't have to concentrate too much. With everything going on I find I don’t get time to just sit and read. Something I try to do if possible is take Noah out of the ward when I can. If he is stuck on IV I can’t but if he isn't and they have portable oxygen then they are often happy for us to take him for a short walk around the hospital or even outside if it is warm. I find this really helps us all to feel a little less stressed - just to get out in the fresh air. At the moment Noah isn't up to going out at all though. Anyway - that is how we 'survive' our hospital stays I forgot to mention that when we are in hospital we try to get our hands on ANYTHING possible to take home with us-suction catheters, syringes, gauze, whatever they will give us (or leave laying in the room-betting for a new home!!!! LOL). Dani, mom to Pauli (7/26/93-5/14.03): Well after a incident at 4 wks of age ^Pauli^ was never ever left in the hospital alone. My mom and I took shifts. We had a schedule. She'd work the AM and arrive about 12:00; I 'd go to work at 12:30 till 8. That way I was there in the AM when Dr's did rounds. From there we always had a list of meds and time and a medical history we carried with us. A copy was always put in the nurse’s chart so each shift could see it and the millions of residents who come in for questions also saw it. The PICU always had my cell# or pager # to get a hold of me if i left the hospital. We brought our own meds- pharmacy at our hospital rarely had the form of medication we used or brand and they were INCREDIBLY slow at getting it up to us. I would bring formula, as they didn't have what we used. Had to watch the cleaning staff and nurse, as they would throw out mickey extension tubes as they "picked" up and the hospital could never replace them. Our hospital had a parent shower/ bathroom so I could shower there. It was very clean so i didn't go home. They even had a laundry room for those who are there for extended stays. Ronald McDonald house also had a family room where there is a TV, couch, refrigerator and donated food, coffee maker, Internet and hospital phone to make outside calls from.(at the hospital or you could leave and stay down the road at the Ronald McDonald House if you lived far away) Over all our stays were pretty easy and comfortable. I would sleep right next to Paul in one of those reclining chairs- not to comfy but worked and I was right there in the room. In the beginning I took what supplies I could from the hospital till we were set up on home deliveries. We witnessed RN's make some major med mistakes and not know how to tube feed, so Pauli was never left alone. We had a cafeteria to get food from or we would bring in food from outside, as there is a lot of close take out places near. Or if nurses ordered food they usually asked parents if they wanted to order too. Pauli was always treated very well by staff & the Dr's. I really think most of them thought he only had hydro so we didn't get the negative stuff some of you have gotten form the medical professionals. Our hospital is a teaching hospital so they had allot of clinics there, a bank, post office, medical college- it was a very convenient hospital. We learn allot from our hospital as they learned allot from Pauli, in many ways! Barb, mom to Kayda (12/2/88-6/23/00): Our experiences were similar to the other families in many ways. Illnesses for Kayda were usually colds. She’d get really congested sounding, sometimes her O2 level would drop, and she’d get really wheezy. The drs always assumed that she had aspirated but most of the time, it was just a “simple” cold. During her first few years with me she’d be in the hospital as long as she needed oxygen. I’d not be comfortable taking her home until she’d been off oxygen for 24 hrs. But, once we switched pediatricians and had oxygen at home, I kept her home until she needed more than 6 litres of O2. But as she got older and I got more confident I’d keep her home as long as possible. I remember once during her last few months, calling the dr and saying “she’s on 11 litres of O2, can I still keep her home?” I had a care binder with her schedule, care plan sheets and info about all her meds and various conditions that always went with us to the hospital. I also had a 1 sheet list of her meds, emergency info, etc that was in several places (on the back of her chair, in her backpack, etc). The minute I started suspecting that she needed to go to the hospital I’d update it. Like most of the others I rarely left Kayda when she was in the hospital. I always figured that she was feeling lousy enough and in a strange place and didn’t need the upset of having different people care for her. I brought everything with us when I knew it was likely she’d be admitted: diapers, formula, all tube feeding supplies, clothes (nice jammies), stuffed animals and even her tape player and a large selection of music and story tapes. I’d try to pick up whatever I could though from the hospital. I especially tried to come home with as many of the little med cups as possible as I couldn’t get them supplied. Things got more complicated once she was diagnosed with a latex allergy. I had signs everywhere and always carried a bag of latex free supplies. I had to really stay on top of all staff, especially the lab staff to make sure they didn’t use a latex tourniquet. The first thing I’d say when we’d get to the ER triage desk was that she had a latex allergy. But, most of the time I had to clear out latex products that would be sitting on a shelf over her. Even with a medic alert bracelet and signs all over her chart I’d still see the lab techs with their latex supplies. I just about flipped out one time when I came back from the bathroom to see a nurse and lab person with the latex tourniquet around her arm. I yelled for them to stop. “You should have a sign or something” said the nurse; I pointed to Kayda’s medic alert bracelet and the note on her chart saying “latex allergy”. “Oh” said the nurse. I never left her again when it was possible that she might need lab work. If I needed to go out for more than a couple of hours, I hired a respite person. A couple of times when she was in for a really long time, I had a respite person come in and stay overnight. After one hospital stay where a very abrasive med was given into her balloon port of her feeding tube, I tried to always be there when meds were given. Once we’d switched pediatricians and she started going to our small local hospital, the nurses often just let me keep her meds in our room and I gave them; or they’d prepare them and I’d give them. As she got older, I got pickier about her care and did more and more of it on my own. I wouldn’t let anyone else suction her except in case of an emergency. The first hospital we used with her was a teaching hospital and they ALWAYS gave us student nurses, as I was such a “good” teaching parent. I remember one student nurse we had who was all excited about suctioning Kayda. I asked her if she’d ever done nasal suctioning (the only kind that worked for Kayda) and said no but she wanted to practice. “Not on my child” I said. People just weren’t gentle enough. It was the same with the respiratory technicians. Kayda hated getting her respiratory meds by mask and we used a set that was just a hose held in front of her face. But, you had to stay with her and hold it and the RTs never wanted to do that and would just put a mask on her and leave her. So, I tried to make sure I was always around when she needed a breathing treatment. I’m sure some of the staff didn’t like my constant supervision, but tough. I knew what kind of care she needed. The thing I hated most about the hospital was the waiting and scheduling. You had to fit everything into the nurse’s schedule not the one that worked best for your child. I was so used to doing all her care, much of it nursing based, that it was hard to wait for others to get around to doing what needed to be done. I guess I’m a control freak. It was easier at our small local hospital. We always went home at the first possible minute. Another stress while Kayda was in the hospital, especially during the first few years when we had the DNR on her chart (she came to me with it) was that I was always worried that she’d get really sick and I’d have to fight for treatment for her. I stayed very close when she was very ill so that I could fight if I needed to. I remember on one of her first hospitalizations after she came to live with me when the ped looked at her and said, “you realize of course that if she needs intensive care, she won’t get it”. I just about flipped. I remember calling our social worker and then sitting and holding Kayda for an entire afternoon. I wasn’t taking any chances. Once we switched pediatricians and hospitals it was more relaxed as her new ped looked to me for direction for treatment. As long as I said go, they kept going with her. I really trusted Dr. Archer. By the end of some of Kayda’s longer hospital stays she got so she could recognize the sound of my shoes on the floor coming over to her bed. I’d walk over as quietly as I could and always, there’d be a big smile on her face by the time I got to her. When she was really sick she wouldn’t let anyone else care for her. She’d get really mad if others tried to do things with her. I know that my being with her at the hospital saved her life many times both from med errors and just from holding her. Quite a few times she was really sick and near death. But, I’d pick her up and hold her in the position she liked the best (straddling my lap with her head on my shoulder) and she’d suddenly start to get better. Other pages in this section: |
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