Yesterday we had a very long day at the hospital. Elias began the morning with IVIG infusion. It looks like we may get to spread these infusions out now as his IGG levels are beginning to fall in an acceptable range. A trough level will be done prior to the next infusion to determine how well he held up with the extension of time between infusions. If they stay within an acceptable level we could on have to go once a month rather than every 2 weeks. That would be great as the entire process takes about 4-5 hours. Afterward we had a few hours to kill before our post surgical follow-up with Dr. Pena. Our appointment was at 2:30p, for which we arrived 20 minutes early. We were taken back to a room about 2:20p and we were given the dilatation protocol, told to study it and informed there would be a quiz on it demonstrating our knowledge and understanding before we could leave and if we did not give the right answers the doctor would just walk out and come back later. I looked at the nurse and pointed to his trach and told her he was also on a ventilator. After all the hoops we had to jump through for those to train, we were not intimidated by the fact that we were being threatened with the thought of the doctor walking out of the room because we did not know the answers. We actually already had this information down anyway as we had some questions about the process. So then we waited and waited and waited some more. By the time all was said and done it was 4:55p before the doctors finally came into the exam room. Apparently the reason for the delay was the family whose appointment was before ours had a “overanxious and concerned mother” that was having difficulty with the entire process. During these appointments are when you “learn to perform” the twice daily dilations of the newly created opening, to put it nicely. We could certainly appreciate the anxiety but honestly for the doctors to just keep us waiting because another mom freaked out is certainly out of line. This would have been a great time for the social worker or nurse to step in while the doctors caught up on other patients circling back to that family. This brought up the opportunity to explain that this is why it would be better overall to go over this stuff during the pre-op consult or possibly even while inpatient during the 48 hours recovery rather than during the surgical process. While the dilatations themselves can’t be done on the patient until after 2 weeks, they do make training mannequins for trach, central line, and other care, why not for imperforate anus. Our appointment lasted literally 3-4 minutes, we were quizzed, asked our questions, shown the technique, demonstrated the technique and out we went shortly after 5p. The main reason we were so irritated is that this process has to be done before feeding so we had to hold off Elias feeds which ended at 10a and he was unable to have any other fluids until after the appointment which if had been on time only been an hour later than we would normally restart, but it ended up being close to 4 hours later. To further add insult to injury both Dr. Pena and the fellow came in together. All Dr Pena did was quiz us and leave the fellow did the rest. Couldn’t one have excused themselves rather than keep us waiting 2 1/2 hours? Anyhow, the procedure is simple, very uncomfortable for Elias though and it doesn’t help that his legs have to be held to his chest. Elias doesn’t like to have any part of his body held down so that adds to the process. We will be doing this for the next 9-12 months gradually going up in size twice a day, 2 times each dilation. It is a little more tolerable than we imagined based on the description they provided on pain and within a few minutes Elias seems happy again. It is apparent that this is going to become very tedious and monotonous over the next year. But I suppose like we have done with everything else we will adjust to this.
We were also informed yesterday by our medical supply company that we would need to pay for Elias ostomy supplies upfront and wait for reimbursement from Medicaid which would be less than what we would be significantly less than what we will be paying. Apparently, this should have been happening all along, but someone there missed that. So now it seems we may have to start shelling out anywhere from $120 - $180 per month for this, something we are really not in a position to be able to do at the moment. It was suggested that we attempt to find another supplier as the reason for this is Elias is the only patient that uses ostomy supplies in the entire companies client database. So because it is a special order this is why it must be done this way. Seems like while one battle is going another is always brewing. Of course we find this information out late Friday afternoon of a holiday weekend. So we are hoping some places are open on Monday to answer some questions.
This week has several meetings and assessments along with some adding of appointments. It should be a busy one, but aren’t they all. Elias continues to improve each day getting back to his pre-surgery form. He is starting to use a push toy to learn walking now, with our help. He is moving his feet pretty well as we push. Of course his “grip” on the handle is not really the best because of his hands, but he is adapting as usual. Within a few months we anticipate Elias will be taking his solo first steps. That is when the real fun will begin! We hope everyone enjoys their 4th of July Holiday.