It Has Been One Week

It was one week ago today that Andrew had surgery. He has come so far in one week. He is walking around the unit, riding in a wagon, eating and starting to play. Andrew’s personality is beginning to show through again and he is talking up a storm. Much better than the first several days when he would just cry or ignore everyone.
However, he is “all done with hospital”. Andrew is so tired of being messed with that he cries when anyone wants to do anything more than a basic assessment. At least he tolerates being assessed, but if they have a syringe or anything else in hand, he starts to cry. It definitely is difficult at this age for him to understand what is going on, but he is doing his best to cooperate.
One of the big things is medicine. Andrew has been on medicine since he was born. It is a fact of life for him… he takes medicine in the morning and before bed. However, he was on one prescription med (Enalapril) twice a day and one baby aspirin per day. We are now on 6 liquid meds (Enalapril, Digoxin, Amiodarone, Sildenafil, Lasix and Aldactone). At 9am we take all of them. At 3pm he takes Sildenafil and Lasix since they are taken 3 times per day and at 9pm we take all of them but Digoxin (only once per day). In addition, he takes a baby aspirin and another blood thinner (see below for that story). He also is on Ibuprofen every 6 hours and Loritab as needed. Our little boy who never fussed about taking meds now cries when he sees the syringes. Hopefully as we wean off of some of these over the next few months, it will get better.
Our current plan is to continue to heal and hopefully stop draining fluid through the chest tubes. We have been watching his drainage carefully for signs of Chylothorax. When this happens, they put patients on an extremely low fat diet. This weekend we have been borderline. He is leaking fats, but his drainage is tapering off, so the doctors are just watching and waiting. They suggested that we voluntarily modify his diet to not be so high fat. The difficulty with a low fat diet is that Andrew depends on fats for calories and has always been on a high fat diet. He has never really been exposed to low fat foods because every bite he took had to contain as many calories as possible. His surgeon remarked last night that they may have created a monster! The nutritionist is supposed to come and help us today with a new high calorie diet without lots of fat.
The other big issue is the addition of a blood thinner. The surgeon likes Fontan kids to be on Coumadin for 3-6 months. Because Coumadin is such a sensitive drug, they draw blood to check an INR level. The therapeutic range for Andrew is between 2 and 3. Andrew received 1 dose of Coumadin (0.5 mg) late Wednesday afternoon. Thursday his INR was 2.9, so they did not give him his Thursday dose. On Friday, his INR was over 8 on the first test and just under 8 on the second. Needless to say, Andrew did not get another dose. No one is sure why Andrew reacts to Coumadin like that. One thought is that the Amiodarone that he is taking for his rhythm issues makes the Coumadin more effective. It was Sunday before his level came down enough that they need to give him more.
Before they give Coumadin again, they want to pull his last central line. His RA line goes directly into his heart. They do not want to pull this line while his INR is high, so the plan was to pull it and then give Andrew the Coumadin. They were getting ready to pull it yesterday when it was discovered that this was the only IV line that Andrew has. All his others have been pulled which would leave them no way to give him IV meds if needed or to draw blood without sticking him. So today, they will put in a picc line which will allow them IV access and also to draw blood. Once this is in, then they will pull the RA line. At least this was the plan yesterday. Rounds have not yet started today so we will have a better idea of what will happen after rounds.
Sorry for the long post… wireless access has been spotty at best on the 5th floor (still working out bugs in the new hospital!). I can post to Facebook and Twitter from my phone, but blog posts are more difficult. It seems that they are fixing the problem, so hopefully I will be able to post more often and with pics! Thanks for all of the support!

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