4-28-10 One week anniversary

I am relieved that it has already been a week since Dean's surgery. Praise the Lord! Dean is doing well, but he has been very high-maintenance. I know he is still in a good deal of pain. He winces every time I lay him down. He also doesn't like to turn his head much when lying down. He still has some swelling, but it has been amazing to see his head change a little everyday as the swelling goes down. He still has some mushy spots in the back of his head where there is a lot of fluid. I am sure that is causing some of his pain. I am very pleased, however, with how nice his head is shaped. I didn't think my little guy could get any cuter, but his head is so nice and round! He is very clingy to me right now. It seems to be get better, but Monday I don't think I put him down for more than a hour or so all put together. I guess I can understand why he might be having separation anxiety after everything he has been through. He is happy, but he just wants mommy to hold him constantly. I am very thankful that my grandmother has been staying with us to help with the girls. It has been noisy here lately. If Dean and I were sleeping better I don't think I would mind as much, but by the end of the day I feel pretty frazzled! When I look at his little head stitched up like a baseball, I still can't believe I let anyone do that to my baby. Please continue to pray for his recovery. I am hoping that as the pain lessens he will fall back into his regular sleep and play routine. I am happy for the extra cuddle time, but I need to be able to get him to nap in his crib again. Dean's follow-up appointment with his surgeons is Tuesday. I will be sure to tell you all how that goes. Thank you for your prayers!

4-25-10 Home!

I will make this brief because we have had a lot of long days, and I am ready to crawl into my own bed again. We are home! Just as I said in my post yesterday, everything I ask prayer for has been answered right away. Dean's hemoglobin level had risen by morning, his vitals were all good, and he has been up and active all day. He is turning right back into his regular self- lots of smiles and cooing! We aren't really supposed to cover his incision so you can imagine the looks we got as we left the hospital. He looks a bit like a baby Frankenstein with his zigzagged stitches. Kara and Evy were a bit shocked when they saw him too. Evy cried, and Kara is really concerned about him not having hair. She seems to think that getting his hair back with heal him. They are both pretty used to it already though. Kara asked a lot of questions. I think ultimately she was worried that she might need a surgery too, but she seemed content when I told her that only Dean needed that surgery and he was already getting better. We will have an appointment at Johns Hopkins at the end of the week with Dr. Simmons and Dr. Ahn. I will update when there is significant news or requests to report now that we are home. I think I will have my hands full because Dean is still in a considerable amount of pain and requires a lot of extra care. We are so thankful to be at home and in recovery stretch. Thank you all so much for your incredible support. Please keep praying for a fast recovery. My little guy still has a lot of pain and swelling. I trust God that a good sleep at home and a new day will bring him added comfort.

4-24-10 Improving

I will just have to keep posting all of my prayer concerns right away because as soon as I go back to see Dean after posting an update, I find that God has already answered my prayer! This morning I walked into his room and he smiled! It was such a relief. His smiles were few and far in between today, but I was just so glad to see that little glimmer of his happy personality coming back. He made some great headway (no pun intended) today. Dr. Simmons took his drain tube out, and that meant that he really didn't need any more IV pain killers so they took those too. His hemoglobin levels are low which is due to the blood that drained for two days from his incision. With the drain removed, that should hold and eventually start to go back up. If it drops any more they may give him a transfusion; so we are praying that that won't be necessary. His head is still very sore. He does not like to turn his head at all. However, he has been sitting up (we hold him of course,) and that seems very comfortable for him. I think that the back of his head is especially sensitive because he cries for a moment each time you lay him down. It looks like we will be able to go home tomorrow if things continue to progress well. Ben and I have been very pleased with all of the wonderful nurses tending to Dean. They are really caring for him well. God's guidance and provision for him has been made so clear. We don't regret our choice in hospital, doctors, or treatments. Of course that is because God chose them and has coordinated everything so perfectly for us. I really don't think this could have gone much smoother. Please pray that Dean's pain will continue to diminish, that his blood levels will remain steady, and that his intake and output levels (drinks and diapers) will be high enough for him to be released! We appreciate all of the prayer support so much.

4-23-10 Slow and steady

It seems like we have been here for a week already. Everyday has been so long that it is hard to believe we are only two days out of surgery. It is great to be on this side, but I am anxious to see Dean smile again. Medically he is progressing well. His incision is draining less, he needs less medication, he is awake more often, and he is eating a little more frequently. I have only held him twice because it is too painful for him to be moved. You can tell he is very uncomfortable and that is very painful for him. He lies very still and does not smile, even when he is looking at his toys. If you know Dean, you know that he is usually always smiling. His expression makes me think he might be a little mad at me. I will be happy when he is better and forgets all of this. His swelling is going down and his eyes never swelled shut, and that is a wonderful answer to prayer for me as much as him. I am now praying for his pain to get better so that I can hold and nurse him without him crying out. We also need his draining to stop before we can come home. I want to include some photos this time. Some are not very pretty, but I think it will help people to know what to expect when we get home. When I have access to my computer again, I will make more available. He is so brave.

Ben and I are doing well. The hospital and Children's House have made us very comfortable. We are meeting many other families. It is humbling to be in a children's hospital. We feel so blessed. Even with everything Dean is going through, we definitely are thankful for the situation God has given us to deal with. Many have it so much worse. Our list of precious children who need our prayers grows everyday!

4-22-10 Recovering

Dean is doing very well today. When we got to the PICU, he was waking up a little and drinking from a bottle. They were able to remove most of his tubes by noon and take him to the pediatric recovery ward. He still has a tube to drain his incision, an IV line in his ankle, and various monitors. They just removed his catheter this afternoon. He is taking pain medication orally and getting fentnyl through push button IV when needed. He is definitely very uncomfortable. We have not held him yet because we can tell he is much happier to lie still. He is very groggy and drifts in and out. He is opening his eyes and alert in between which is nice, but mostly he is resting. Tomorrow will probably be very different. We expect him to be more alert, but possibly more fussy. We have also been told that he may have more swelling from all of the IV fluids. I am looking forward to being able to hold and nurse him again soon. We are told that he will probably be released on Saturday, but that is not certain yet. It seems like we have a long way to go yet for that, but I think he will be making progress in leaps and bounds in the next 24 hours. We are very thankful for how well he is doing. The doctors all seem to think he right where he should be and in same ways better. God is good. On a lighter note... I found out that Dean didn't need much blood for his surgery, but he did use part of the unit I donated. The fainting was all worth it! The doctors said we were the first parents they ever had to direct donate, and they were amused when we told them about our experience with the red cross.

4-21-10 Praise the Lord!

Minutes after my last update, I received a call saying that Dr. Ahn was finished cutting the scull and was handing things over to Dr. Simmons for the reconstruction and closing. Ben and I headed back to the waiting room and figured we would have a few hours to wait for Dean to be finished. Instead when we arrived, we were told that everything went well and he was being prepared to be moved to the PICU. It was over! Dr. Ahn told us that things went very quickly because after they got all of the lines for anesthesia in place everything else went perfectly. There wasn't a single problem removing the scull- not a scratch! Dr. Simmons told us that the reconstruction went perfectly too. His scull was thin which made it easier to manipulate. They were both very pleased with how he was doing. They may not know that God was guiding their hands, but I do! We just spent the last few hours with him. They have already taken his breathing tube out and he is conscious but has kept his eyes closed. He is not very swollen at all, which is a relief to me. They said he might be a little more swollen by morning due to laying down, but he still looks like my baby and that is comforting. He has a line draining fluid from the incision site, and his head is wrapped up in a little cloth helmet, but he is aware of our presence and moving his arms and legs. It feels so good to be finished with the surgery. We know Dean was in God's loving and perfect care all day. I am so grateful for all of the answered prayer! Since I am not able to feed or hold him tonight, I will be sleeping at the Children's House. I trust that I will sleep well tonight, and I need to because I will be sleeping bedside tomorrow night. Thank you to everyone who contacted us today. The calls of encouragement started at 6am, and emails, calls, and even a surprise visit (from my aunt and cousin) continued throughout the day. We can not tell everyone how much this means to us. I am especially thankful for the strength and support from Ben today. We look forward to tomorrow, and pray for Dean to recover quickly and completely. I am confident that God will bring Dean home strong and safe!

4-21-10 Waiting and Praying

It is almost 4pm, and I wish that I was writing to say that Dean's surgery is over, but it actually has just started. Everything went beautifully this morning. Dean nursed at 2am (the latest possible time before surgery) and slept well. We got to the hospital at 6am as planned. We put him in his little hospital gown and actually went with him into the operating room to be with him until he fell asleep. They used a little gas mask and he drifted off with hardly any fussing at all. We were told that it would take about two hours for anesthesia and preparing him for the incision. The anesthesiologists wanted to put a line in at his neck, a breathing tube, and another line in a main artery. Unfortunately, about three hours later we were called up to the waiting room (which was packed, so we were roaming around waiting for them to call our cell phone.) We were told they had tried getting access to his artery in his arm, leg, and groin but were not able to get to one. We signed a consent for a mini surgery that would allow them to do a cut-in for direct access to the artery. They, of course, have to tell you all of the risks involved, the worst case being loss-of-limb. So, you can imagine that we were concerned and praying hard for our little guy! At 3pm, they told us they had everything ready, he was stable, and they were going to begin the surgery. I just received a call from Dr. Simmons (the plastic surgeon) saying that the incision has been made. We expect to talk with Dr. Ahn (neurosurgeon) around 4:30 when he has completed removing his scull. Please keep praying; we still have quite a few more hours to go. We are thankful things are finally moving along and that he is doing well. I was told that I should expect his eyes to be swollen shut for 48 hours or more due to the length of time he is spending face down; so, I am trying to prepare myself for that. I am so thankful for the Children's House! We checked in at 2pm and I have computers available to post my updates. When things are finished and we return tonight I will post again. Thank you all for your continued praying! PS: Please forgive any errors in my postings, I don't have time to proof read!