If you have been reading my blog, then you know that my husband has been dealing with a neurological disorder for a number of years. He had chosen to receive IVIG treatments to help with his condition. On June 5, 6 and 7, he was given the medication infusions for 6 hours each day. He started getting a sore throat the day after that, and his throat and mouth were peppered with sores (well over 100). He was also having difficulty swallowing. Thinking this was a viral infection, he was given some medications for that by his family physician. He then started breaking out in a severe rash covering his upper body a week after that, along with cold chills, a temp of about 102 degrees, digestive problems, achy muscles and his lips swelled up. We were definitely scared. He knew that some of these symptoms occurred after the treatment, as he read extensively on case files, what others going through this treatment on message boards talked about, etc. But, this seemed worse than what he had read. In the back of our minds was – what is very serious – Stevens-Johnson syndrome. This thought was VERY scary. Look it up and check it out for yourself. Terrible!
The hard part about my husband’s situation and condition – which is CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) – is that it is not a common problem. It is very rare, and not one of the doctors or nurses we talked to had even heard of it. My husband was hospitalized on Saturday, June 17th and released on Monday, June 19th – over Father’s Day weekend.
Below are 6 lessons that I learned from my husband’s hospital stay. Maybe this will help you, if you are ever in this situation.
1. Be persistent
My husband went to the ER at the hospital closest to our house 2 straight days in a row because his symptoms were getting worse and the medications prescribed were not helping. During the first ER visit, the doctor on call did not think it was Stevens-Johnson syndrome, and we breathed a little sigh of relief. The doctor that was on call on the second ER visit, thought he would need medications and let it take its course. On the third day, he was so miserable that we went to another hospital and found out that he was very dehydrated and needed further evaluation and was admitted to the hospital. Very happy that we were persistent and didn’t give up.
Between more than 5 doctors, they were going back and forth between two different diagnoses and finally an infectious disease doctor took charge and gave him the corticosteroids needed to help with the severe rash. This was either a viral infection or a reaction to his IVIG treatment. They took a biopsy of the infected area, and we are still waiting for the results to come back.
2. Don’t assume
You will have to describe what, why and how you got to the point of going to the ER. Don’t assume that every nurse and doctor has read the medical notes. They are taking in so much information, and you need to be thorough with the information you give them about your situation. It is not fun to keep reiterating the problems, but we had multiple times during his care that doctors and nurses were surprised to find out things about his health. For instance, if we didn’t bring up the fact that he suffers with Gastroparesis, they would have prescribed a medication that would have caused this to be worse.
3. Be aware
You should not assume that every doctor and nurse will do the right thing while your loved one is being treated in the hospital. You HAVE to be aware of the overall care. I stayed every minute with my husband during his stay, and there were still goof-ups! UGH! Even things that seem minor can lead to more complications. My husband had a high fever, as I mentioned, the nurse seeing to him on Sunday never once checked his temperature. We didn’t realize it until the next day when the nurse taking over for her, checked it!! Wow! Also, my husband was receiving fluids, and when we mentioned to three different doctors and nurses that he was puffing up and not urinating properly, they finally gave him a diuretic. The nurses were not measuring his urine that he was collecting for them in a urinal for a full day! Let’s just say he was in the restroom for about an hour straight after that. If you have seen The Santa Clause, remember how Tim Allen looked as Santa Claus? His skin was so tight and puffy – that is what Clayton looked like. Plus, he was having pain in his knees and other muscles. This is very hard on your organs, and a bad oversight on their part. Very frustrating!!
4. Know medications and allergies to meds
Your loved one may not be able to communicate about what medications they are currently taking, and you need to know what they are. I think that the best way of keeping track is to have them written down and be able to access it. Same goes for medications that they are allergic too. It is so important so that your loved one isn’t given a medication that gives them a bad reaction or worse.
5. Gas up
This really should be at the top of the list. Be sure that you keep enough gas in your vehicle in case of an emergency!!! It seems silly to even say it, but so many times we put off getting gas because we don’t feel like stopping.
6. Take care of yourself
It is very important to make sure that if you are staying with your hospitalized loved one, you stay hydrated and eat! I was so concerned about my husband that I didn’t eat a lot the first day at the hospital. I needed to keep up my strength and not get sick too. Also, sleep when you can. It is so hard to get enough sleep when staying in the hospital. Doctors and nurses check on the patient so often during the night. So, if you need to catch up during the day, do that! I touched on this topic of taking care of yourself a little in my article about being a good caregiver, read about that here.
In conclusion, Clayton’s body has gone through so much, and he is pretty wiped out! We are not out of the woods, as the IVIG will stay in his system for about 3-4 weeks. I am so glad that I can say that his rash is going away now and his mouth is doing better too. I pray that he continues to improve and just plan on giving him all the love I have to make him feel better. 🙂 Thanks for reading!