We’ve been home not quite a week now. We’ve been busy getting caught up on things around the house, arranging follow-up appointments, making calls to the school, therapists, VON, CCAC etc…to update everyone and to make sure things are all in place and will be in place when they will be needed.
It was a rough week.
The more Patrick is in and the more that is needed to be done with him is getting more difficult. It’s also taking longer for him to come back to baseline with each hospitalization. The Doctor’s are noticing as well.
Last week, in a nutshell is as follows:
EEG was attempted on the Tues, 13th. Got half the leads on his head (with much struggle), the more we got on, the more were falling off. His head has always been sensitive, this being more so with having had surgery less than a week prior to this. I put a stop to it. He curled up in a ball and cried! He cried all the way back to his room, it was awful!
Wednesday, it was decided that we should try to get an IV back again to be able to calm/sedate him long enough to get the leads on his head for the EEG. Once they were on and his head was wrapped, he’d be fine, it’s just getting them on.
Two adavan’s later, he’s still awake and not calming enough at all to get an IV and do some bloodwork. 5 nurse’s plus us trying to get the IV. An hour after we left him alone, he was out for 3 hours, but he still stirred when doing something to him. I don’t ever want to have to give him adavan again!! Coming out of that was awful!! Not fun at all.
Thursday it was decided to try to give him Nebutol to sedate him long enough to get an IV, do bloodwork, take out stitches in his head and put the leads on for the EEG. I didn’t want Nebutol used. Nebutol is a drug given to many kids, especially young ones when shorter sedation time is needed. It lasts 3-4 hours. Coming off the nebutol is not fun though. Children are quite miserable/grumpy, get headaches and such. For one, we’re already dealing with headache issues, why do we want to add to that? It’s what the team wanted to use, so an IV could be gotten asap, and then that way, if more sedation was needed, they could push something through quickly using the IV.
After an hour of being given the Nebutol, Patrick was seeming a little more relaxed but not so much to allow us to try anything. I told the nurse, if she could get his stitches out without any issue, they could likely try for the IV. After removing 2, it was a no go. BUT, at the hour mark, they HAD to try for the IV regardless, so that the team and the EEG times worked out. They had half an hour to get it. By 2 o’clock (the time of the EEG), 5 nurses (including one fom the IV team) and myself, were not able to get an IV! EEG didn’t get done. By supper time, Patrick was out for a couple hours, again not enough to do anything to him.
There was talk of giving him more Nebutol to try it again. I said no! The purpose of the EEG was to monitor him awake and asleep at night, NOT alseep from sedation. If they gave him more, he’d be out till the next day. They had to figure something else out.
Friday morning (16th), waiting to see Neurosurgery and Neurology to see what the plan was going to be. Neurology spoke of 3 different thoughts. The EEG needs to be done. I want verification that there aren’t any types of seizures happening during the night that might be contributing to tiredness Patrick still seems to have alot of. He was going to speak to Anesthesiology and see about getting one of their spots to put him out (using the gas) long enough to get the leads on so he can be monitored 24hrs or more. It might be tricky arranging that. The other two thoughts were: 1 – starting him on an anti-seizure medication and see if there is any change in him (more so if we can’t get the EEG done in a timely manner). 2 – Treat him as they treat their chronic headache/pain patients. Both of those options would have to wait till after the EEG was done, as the medications all contain anti-seizure properties.
Neurosurgery were confident the shunts are working well and that there were no more problems with the ‘plumbing’. Although he was still not 100%, they were comfortable with him going home, knowing that we only live 5min down the road and that if he deteriorated, we would be back very quickly. The other idea they had discussed and brought up to me was to give Patrick a Port. Having a port would make IV and getting bloodwork much easier, less traumatic and safer for Patrick and those having to do it.
I found a link about Ports, how/why they are used, their placement etc. Typically they are usually used for Chemo patients, but are also used for other purposes obviously as with Patrick. Click here to see/read what it is.
Today was the consult for the Port. The referral has already gone in to radiology for it to be done. They will be in touch with me within the next few weeks.
It was also mentioned that if the Port was put in BEFORE the EEG was done, that would make doing the EEG much easier, so that is the plan as well. Have the Port in first, then do the EEG.
Patrick has regular blood work to check his potassium and kidney function primarily, and other things as well. This will certainly help. A prescription for Emla cream, which will be applied an hour before needing access to the Port will numb the skin so he won’t feel anything. He will learn and realize this will be much better and less traumatic and hopefully it won’t be so bad anymore. He will be required to go to clinic once a month to have it flushed to keep it open and to prevent any clotting. A small price to pay for all he goes through, if it makes it better.
Patrick is happy to be home and so am I! Neurosurgery has recommended a gradual return to school as he tolerates it. Half days or alternate days. I’m thinking alternate days so he can get used to what his days will be like and have a day in between to re-coup. I think it will be easier for the school and arranging transportation as well. The plan is to return Oct 3rd I think 
Thank you again everyone for your thoughts, prayers, encouragement, support and hugs. They have been so greatly appreciated!
I’ll keep you ‘posted’ 
Have a good night my friends!
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