Sunday, March 15, 2009

updates on simon

Ok it's been a very long couple of days, but I need to take the time to write it all out--and it seems like I finally have that time.

Simon inherited a gene from me, that carries an infant seizure disorder. They presented themselves on his 3rd day--which is typical for this disorder. They last about 30-45 seconds, which I have found out, is relatively short as seizures go, although I'll tell you it's the longest 45 seconds I've yet to experience. He has had one that lasted almost 3 minutes, but that was really a blessing, because it allowed a nurse, charge nurse, and several of the staff in the nursery to observe what they look like, and how he responds afterward. Infant seizures, such as these, can be extremely difficult to diagnose, because they are so short, that many times, the doctors and staff do not get to observe them. My mom said that only one of my seizures was ever seen by a nurse, and she only caught the very last couple of seconds. My brother-Ben, and his family went to the ER several times with Joshua, and spent much time in the NICU at Primary Childrens before any staff could observe his seizures. We are very blessed that Simon has had them while in the care of the McKay Dee staff. The first day--they did an EEG and other tests. His labs came back perfect, and his ultrasound of the brain showed no bleeding or other scary signs. His EEG, however, did show seizing, although no physical seizing had occured during the test. This was another blessing. EEGs can be really quite useless, because they only record current activity. So if you aren't having a seizure during the EEG test, then it will come back as normal. The fact that they happened to run the test while he had an episode is an incredible blessing. He is the first in our family's history to have one during the EEG--and this disorder goes back to my Great-Great Uncle.
He has received several beautiful blessings from Chris and his gandfathers. Many people have knelt in prayer on his behalf, and he has been placed on several temple prayer rolls--for this, I cannot express my gratitude enough.
They began giving him phenol barb to help control the seizures. I have been told this will not take them away, but it does keep them from being dangerous, and from causing strokes, and other scary issues. He seems to be responding incredibly well.
During a seizure yesterday, his O2 stats dropped to the low 80s, so we were told that they would keep him an additional 24 hours on monitors, to ensure that he is responding to the meds well and that if he drops again, they are aware and can get him O2 if necessary. He has been seizure free since 4pm 3-14-09. It is now almost 10 am 3-15-09. This is truely remarkable!!! What an amazing blessing!!!
The hospital has allowed me to stay in my room-as a border, so that I could continue to nurse him as needed, and have bonding time with him. I cannot express my gratitude enough for the wonderful charitable nursing staff here that have loved my son, and my family. They have each taken the time to sit with us and truly talk to us, give hugs, and wipe away my tears. They have sat with my little boy and rocked him, when I could not. They have kept such a close eye on him, and are right there when he needs them.
The pediatrician that came to check on him this morning, has invited me to take a lesson on infant CPR, so that I have the confidence and skills to act, if he needed me to. She also called the Neonatologist at the NICU here, to set up a consult today so that he can pass him off as ok to come home. We have an appt set up with a guy at Primary Childrens, but couldn't get on his schedule until the 9th, so for the oppertunity for a specialist to see him today, this too, is a great blessing.
Ava is being amazing. She has had a week without me, and yet has not acted out--as I was told she may. She is still full of joy, silliness and love. She adores her baby brother-and is so very gentle with him. When I came home yesterday, she greeted me with hugs and so many kisses that I lost count. She came to the hospital last night with me, and we had some one-on-one time together watching veggie tales, and playing. I am grateful for the assistance of family and friends who have made this transition time for her easier. That have loved her and gone out of their way to make sure she has had a fun time while I have been away.
I want to thank everyone for the prayers, thoughts, acts of charity on my family's behalf. We have felt peace, and love during what is a very strenuous time. I know that our Heavenly Father is aware of our family, and can feel his Spirit with us, guiding us, and helping us to grow together as a family. I know that our prayers are heard, and have been answered in numerous ways. The Lord has blessed us immensely through this trial, and I know that he will continue to do so. I have a testimony of the priesthood; it truely is the greatest gift to have a husband and fathers in our lives that honor this great gift and exercise its power to bless us.
I just received a call that Simon's heart rate climbed to 200 this morning after his most recent feeding. This causes some concern, as that is very high, especially for a sleeping infant. They are going to monitor him more closely and do some further tests to find out what is causing his rate to race. They will at this time admit him to the NICU. Again, a blessing, that this happened while he was still here on the monitors, and not while in the car on the way home. I am going to go check on him myself now.


Phil and Cami said...

Oh, Deb. My heart goes out to you and your family. You are all in my prayers. I pray that the Lord will be with you and each of your family members while going through all of this. I pray for little Simon, that he will be strong. And I pray for the Doctors, that they will know what to do for your little boy. If I was in Salt Lake I would come running to your side and cry with you. Be strong, the Lord is at your side.
I will also call our temple and put Simon on the prayer list in the morning.

Mary said...

Im sorry to hear what is going on. You are in our prayers. I hope everything goes ok for you. good luck and if you neee me to watch ava just give me a call.

Stephanie said...

I am so sorry! Poor little guy, and poor parents! We will keep you guys in our prayers. Also, the pediatric neurology department at Primary Children's is GREAT. We've been working with them with Ben. Dr. Benedict is AWESOME! You guys will be in good hands.

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