The broviac surgery yesterday went really well without complications as far as we could tell. Shortly after having his broviac surgery, Matthew ended up having his eye exam. After having his eye exam, the doctor said that they needed to do more eye surgery again this morning at 7:30. His left eye looked really good and some of the bleeding actually subsided, so the doctor needed to go back in and laser those areas he was unable to do before. If he didn't go back in and do the areas he was unable to get before, then the retina could still detach in those spots and then all the previous work would have been done for nothing. His right eye on the other hand didn't look so good. There is still a lot of blood from before and even more bleeding has occured. Since there are areas where he was not able to laser before, the doctor is now talking about doing a vitrectomy on Matthew possibly next week. This can only be done at Stanford, so they will need to transport him there for the surgery. The vitrectomy is a surgical procedure where they actually cut the eye open and remove the vitreous fluid in the eye to help remove the blood and prevent retinal detachment. Then they will fill the eye with fluid and let the rest of the eye fill with water later on.
After the eye surgery this morning, the doctor thought the outcome of the left eye would be great and he was extremely pleased with the left eye. He was able to add 215 more shots of laser in the left eye. The right eye is still an unknown until they actually do the vitrectomy. However, he did say that the areas where he lasered before did look good and were holding, but he just doesn't know what is going on underneath all the blood. Matthew is resting right now and is back on the CPAP for additional respiratory support.
Yesterday was pretty stressful. I was at the hospital literally all day and then went back last night with Jason. When we saw Matthew last night he seemed to be extremely agitated and was having quite a few episodes of apnea (not breathing). I was afraid that he would "code" on them like before and they would have to reintubate him or something worse would happen. He was already on CPAP because he was having difficulty breathing after all the procedures he had done in the day, so the next step would have been intubation. Needless to say I felt like I couldn't leave him, so Jason and I ended up sleeping at the hospital last night. It kind of worked out because we had to be there early this morning for his eye surgery anyway, but those beds certainly were not comfortable at all.
After talking to the pediatric surgeon who did Matthew's broviac surgery yesterday he said he would like to try feeding Matthew again before doing the intestinal surgery. This is what I was pushing for before but the other doctors said that he needs to have the intestinal surgery to remove the stricture and that the feeding this time won't work. The surgeon who I spoke with yesterday is a doctor that nobody in the NICU has ever dealt with before, and I was so thankful that he was saying what I had been wanting all along. I don't know if the feeding this time will work or not, but I will feel much better knowing that at least we tried the feeding without adding all the other stuff to the milk one last time before the intestinal surgery (if he needs it). He is also scheduled to have an intestinal biopsy either today or tomorrow. Fortunately, this is done at his bedside so they don't need to wheel him down to the operating room for this procedure. The procedure occurs like he is having his temperature taken rectally where they go up through the rectum and slice off tissue samples of the large intestines. They tell me that it is not painful, but there may be some discomfort. They are mainly testing him for a disease called Hirschsprungs. This is a disease where the nerve cells that are normally in the intestines signaling the intestinal muscles to push the stool through are not there. This causes constipation and other problems when things get backed up. If he tests positive for Hirschsprungs, then they will need to go in and operate and remove the part of the intestines that does not have the nerve cells.
Please continue to pray for healing of Matthew's eyes and intestines. Pray that the laser treatment in his left eye today holds and that he'll never need surgery in that eye again and that the right eye does not have retinal detachment under the bleeding. Pray for his recovery and that he has minimal pain and that he is able to get plenty of rest. Pray that the feeding this one last time will work and that the Hirschsprungs disease tests come back negative. Pray for us to have the strength and peace to keep going through this. I am really tired today and feel pretty anxious about all that has happened and is going to continue to happen in the next few weeks.
Jason and Jenn,
I pray that the Lord will keep his loving arms around all of you, that he will ease your fears and calm your spirit. I pray that this calmness will make it possible for you to make all of these important decisions with clear minds.
You have been through so much and I know it's hard to find the strength to persevere and to keep a positive outlook. Matthew has been through so much and done so well. I feel the Lord has blessed him with a strenth we may never understand. Jennifer, I wish I could be there to take turns standing guard over Matthew. Your decisions have been right so far and I know they will continue to be. I pray that all of these trials will strengthen your relationship as husband and wife. I love you all. Linda
Being complete strangers, and lead to your story by a mix of fate and luck, we pray for you both and Matthew daily. Everyday we check the website to make sure that you are all doing better. We wish you both strength and patience through this difficult time. Matthew is a strong soldier, who will touch the hearts of many, even strangers like ourselves. He may require a lot of care and attention right now, but soon enough he will amaze us all by being the proud and healthy son of two courageous and wonderful parents. Jennifer, follow your motherly instinct because as we have been reading we have noticed that many times your opinion was what the doctors end up doing later down the road. Make your concerns and opinions clear to everyone, as you both are the parents and want what is best for your son. We admire both of your support and love to one another, as well as to your baby. God will reward you and your entire family for all your effort and strength. Thank you for introducing us to your new baby boy and making your story a part of our daily life. If there is anything that you may need, please just let it be known and we will all try to help in any way possible. Please give Matthew hugs and kisses from us, as we pray for him and his family everyday. God Bless...
We are confident that God is continuing to hold you both up, and that he is guarding Matthew at all times. Psalm 62 says: "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken." vs 8 "Trust in him at all times, O people; pour out your hearts to him," for God is our refuge."
Lord, we pray that you will continue to guide the doctors hands in all of these procedures that will occur with Matthew; we pray that you will give them wisdom, skill, and compassion. We pray for your hand to be on Matthew as well as on Jennifer, and Jason. Lord, please give Jason and Jennifer strength to get through all of this. We know that with you all things are possible according to your plan for us.
Seth and I are still here for you; we love you and want the very best for all of you.
Love, Seth, Dawn, and Andrew
We love you guys... all three of you! We are looking forward to the days when Matthew is home and we can all meet him! We continue to pray for him per your specific requests, and always for his Mom & Dad, too.
Much love,
Karen, Roger & Leo