Finally Home

We came home from the hospital yesterday. My dad stayed at our house and waited by the front door until the medication came. Once we had the medication in hand they released us from the hospital.

The whole process to get this medication approved by insurance was hell and then the pharmacy dragging their feet on "processing" the medication was enough to make my family go insane. Once again we were left feeling helpless because there wan't anything we could do to get the medication here any faster. We called the pharmacy three dozen times a day and all they would tell us is that it was "processing". We looked up the pharmacy online and the reviews were awful. Poor customer service, long "processing" times and even patients with cancer not getting their medication for days. Accredo pharmacy is a joke. I called every contact person that I knew, both on the insurance end and the ACTH manufacturing end, and both told me that this is the only pharmacy WE could use. I have zero faith in this company and what scares me even more is that we will have to refill this medicine three times before the treatment is complete. I pray that they get us our refills on time.

We are so glad to be home! The hospital was a scary place to be knowing that Marek's immune system was slowly dropping. I watched the news every day and hearing about the measles outbreak and how the flu shot isn't effective this year made me want to cry. Marek was not able to get his 6 month shots because of his compromised immune system so we will have to be very careful, even after this is all over, until we can resume his vaccinations. The hospital was also difficult because he wasn't sleeping all that much since he was constantly being woken up in order for the hospital staff to examine him, check vitals etc.

Marek is receiving his highest dose of ACTH now. He gets injections twice a day until the middle of March. We are now on "lock down" in order to keep Marek safe from germs. As far as side-effects go he is doing great on the medicine. His glucose levels were fine at the hospital along with his blood pressure. Our home healthcare nurse comes today to take his blood pressure here at the house. She will be visiting us three times a week to monitor him. As far as irritability goes, at first he was sleeping more than he was awake and seemed pretty happy but starting Sunday night we saw a change in him. He is becoming more and more fussy. The last few nights he just cries and fusses from midnight until 4am or 5am. Nothing seems to settle him down. We know he is exhausted because he is fussing even with his eyes shut.

We haven't seen a change in his spasms. Yesterday was a rough day because he had three seizures that were all close to 30 minutes in length. I couldn't bring myself to update everyone when all I wanted to do was crawl into a hole and not come out. I keep waiting for a sign that this medicine is working. I plead with God each night, he can take anything from me, do anything to me if he could just let my baby come out of this okay. It's hard at times, especially at night because I am begging him to help Marek but I feel that my prayers are falling on deaf ears. My heart feels like it weighs 1000 tons and the pit in my stomach keeps growing larger every day. I have never been more scared in my life. I try to console Marek when he is having a seizure telling him everything will be okay but then I feel guilty saying that because I can't promise him that. I can't change anything, I can't help him, I can't even be strong for him at times. All I can do is watch him while he has a seizure knowing that so much is going on in his sweet little head that is hurting him. Every day I feel more and more defeated. Every day I hope that he won't have a seizure and when he does the disappointment that washes over me is overwhelming. It's as if the hope I have that the medicine will work lifts me up to the tallest mountain  but then when he has a seizure it's as if someone pushes me off that mountain and I fall all the way into the deepest valley. Picking myself up after each of these falls is getting harder and harder.

So as of now we continue to wait and watch. Marek is still the bright eyed little boy that he always has been. The medicine hasn't taken away his smile or his heartwarming belly laugh. (ACTH is known for making kids go into a sort of shell where they don't interact at all) We are watching his developmental skills closely. When he is in a good mood (after a nap and full belly) he will still reach for toys, babble and play. However, those good moods don't come as often as the used to.

Thank you again for everyone's support, love and prayers. We love our little guy so much and all we want if for him to get better.