16th Update

Today Samuel is two months old and even though this has been difficult, we thank God that He has given us this little boy. Samuel’s had a rough week and a half with many issues that would take pages to explain. Due to the condition of his brain he has had what they call “posturing” since shortly after his birth. This is something I really haven’t talked much about in my updates, but it became a big issue this past week. Posturing is the brain sending signals to his muscles to contract, but not sending the signal to relax. Sometimes it makes his arms stiff, sometimes it makes his legs stiff and sometimes it makes his back arch. He has been getting regular physical and occupational therapy where they do range of motion exercises to keep him loose. Before Saturday (July 18), he would have times when he would posture throughout the day, but would always relax afterwards. After Saturday’s problems, he began posturing with arms, legs and back all at the same time and it was continuous. After trying several things, they finally gave him a mild muscle relaxer which did stop the constant posturing but it started causing him to take short pauses in his breathing that turned into longer pauses. He is still breathing on his own without the ventilator, although he has a slight amount of oxygen passing thru his trach collar. They have discontinued the current muscle relaxer and will begin a different med tomorrow that should not cause breathing issues.

He is no longer on the antibiotic for the infection he got from surgery, but is now on one for the bladder staff infection from all the catheters. Today they did remove the catheter and he is back to peeing and pooping regularly. He has had a fever from both infections, but as of yesterday that is clearing up and the fever is gone. His blood pressure has been an issue with the meds, fever and posturing but we are hoping this has worked itself out also. They still currently have him on blood pressure meds.

Last Tuesday Samuel’s G-tube was ripped while they were changing his feeding syringe and they had to change it out for a new one. Yesterday the balloon on the inside of his G-tube popped. Don’t ask how this happened, because nobody knows. Right now, he has a “Jerry rigged” G-tube until tomorrow and then they are going to give him a G-button early. He wasn’t scheduled to have a button for a couple more weeks.

We ask for your prayers that things will finally level out from the surgeries and that he will get back on track with his progress. Pray for continued healing, with no infections and no catheters. That all will go well with removing the G-tube and changing to the button; that he will breathe well with no pauses or oxygen. Pray that his blood pressure would correct itself and as always, healing of the brain and gag reflex.

Thank you for continuing with us,
Yancy

15th Update

Samuel had both surgeries last Thursday and everything went great. Friday was a really good day; he was taken off the ventilator and Saturday he was taken off pressure support, so Samuel has been breathing on his own since Saturday morning. He has a trach collar attached which only allows humidified air to blow past his trach and Samuel has to breathe in this air on his own. He has done, and continues to do well with his breathing and we praise God for this improvement. They changed his trach for the first time yesterday and it seems to be healing well.

On Saturday, Samuel started having problems. They gave him pain meds after surgery and one of the side-effects of this medication is that children have problems urinating. This was definitely the effect it had on Samuel. They had to give him extra fluids and a diuretic to make him start going again. That worked for awhile but he is back to having problems again and they have catheterized him. He has had four catheters in the last 24 hours and the last three have become clogged because of sediment in his urine. As of yesterday afternoon they no longer hear bowel sounds and he has not had a stool since yesterday afternoon. At 4:00 on Saturday is when he began having problems. He was moving around a lot; his heart rate, blood pressure and temperature began to rise so they thought he might be in pain; they gave him more pain meds which is probably a big factor in why he is having the above issues. Samuel has had a fever for the last few days and they have him on antibiotics again; they believe he has an infection from the surgery.

Please pray for the above issues,
Yancy

14th Update

At 12:30 today, Samuel had both surgeries and was back in his room by 2:15. Everything went really well. His blood pressure was high afterwards, but that is normal. It is 7:00 pm and the blood pressure has started coming down as suspected. The last thing we are waiting on is for Samuel to start urinating again. If he doesn’t go soon, then they will give him extra fluids to stimulate this response. He has been retaining some excess fluids over the last few days.

Samuel seems to really like the trach option better than the vent tube down his throat, because within 2 hours of coming out of surgery they were able to turn his vent settings to lower than what they were before he went. By 6:00 pm, he was doing good enough for the doctor to say we would try taking him off the vent tomorrow and see how he does. If Samuel makes it 48 hours without the vent, then there’s a great chance we won’t need it when we go home.

Samuel’s face is completely free of any tape or tubes for the first time since he was born, except the one time we did family pictures. His face will have to heal from all the tape stuck to him for seven weeks, but we are glad it is off.

We ask for the following prayers: as always, continued healing of the brain; no reflux issues; that he would breathe consistently without the vent; that he would dump the excess fluids; quick healing from the surgery with no infections and a stable body temperature.

Thank you for your last minute prayers today,
Yancy

13th Update

Sorry this is a last minute update, it has been a crazy week. Samuel is scheduled for surgery around 12:00 tomorrow, Thursday, July 16, 2009. He will undergo three procedures; tracheostomy, G-tube and fundoplication. The trach and G-tube have been discussed for a while now and we are as comfortable as we can be with these procedures. They began discussing a fundoplication as a result of Samuel’s “supposed” reflux. A fundoplication will hopefully prevent him from being able to reflux (no guarantees), thus protecting his airway from future aspirations and pneumonia as a result of reflux. This operation involves taking a small portion of the upper stomach and wrapping it around the esophagus and attaching it with three sutures. This procedure is done laparoscopically (thru five small holes, one of which has a camera). Neither of us have peace about doing this surgery or not doing it, with the exception of knowing that God is in control. Depending on who we talk to, the pros and cons are somewhat the same no matter which way we choose. The biggest difference – if all three are done at the same time, then there is only one time under anesthesia and on the operating table.

In the middle of typing of this update we are still greatly struggling with this decision. After much discussion among ourselves and the doctors, we have changed from what I wrote above and now have decided not to do the fundoplication. It would take me numerous pages to lay out all the discussion over the last few days, but the bottom line is that at this point, we (Mom and Dad) are not convinced that Samuel has a reflux problem. The tracheostomy and G-tube are reversible procedures; however, the fundoplication is not. We are not willing to allow something that will permanently alter his body and has many possible side effects, when we are not sure he needs. At this point he does need the trach and G-tube so there is no problem deciding to allow this. There may come a point that we have to do the fundo, but at that time we will KNOW for sure it needs to be done. What are the risks in not doing the fundo? He has a higher chance of aspirating and getting pneumonia again, but there is no guarantee the same thing won’t happen even with the fundo.

This past weekend, the tape that holds his vent tube in place came loose and the tube came out. I just happened to walk into his room and there were eight hospital staff surrounding his bed. Needless to say that I was a little more than curious as to what was going on. Samuel actually did really well – better than he did when we purposely removed the vent during the trial run and to take pictures. Speaking of pictures, we posted a few of him and the family on his website http://prayforsamuelian.blogspot.com/

On several positive notes - Samuel had his first; absolute, 100%, beyond a shadow of a doubt, “gag reflex” this week. He has had several time when they thought he might have and most of the time he squirms a lot because he doesn’t like it, but this was for sure. I think the doctors have stopped trying to gag him every day. This happened while we were suctioning his mouth. It hasn’t happened since then, but it’s a start. On Monday night he was also moving his tongue around in his mouth, not a lot, but it’s a start. We hope and pray this is the beginning of a permanent gag and swallowing. The last honorable mention – Samuel had his right eye half open and was looking forward. Mom and Dad were at his bedside and he seemed to be looking towards Mom. A few minutes later, Mom walked away from the bed and I noticed that his eye shifted towards me. I thought this might be a coincidence since he has trouble controlling his eyes, so I moved to the other side of the bed and his eye shifted towards me again. I did this four times and each time he moved his eye in my direction. When Mom came back in the room, she saw it one more time before he stopped.

Our prayer requests: that God will continue to heal his brain way beyond what the doctors believe is capable, permanent gag reflex and swallowing, for successful surgeries with no complications and no negative results or progress setbacks (breathing, gag, etc.) from the anesthesia.

Thank you all for your gifts, support and prayers,
Yancy

Pictures

12th Update

I hope everyone had a happy 4th of July. Samuel’s pneumonia is improving; his x-rays definitely show he has pneumonia, but the doctor said Samuel doesn’t know it, because he hasn’t shown any negative symptoms (I thank you for your prayers). He finished his 10 days of antibiotics as of yesterday. Samuel has been having some reflux since we took out the vent tube and reinserted. They did an upper GI yesterday and the results show there are no problems. Last week we had an issue with his feeding tube. The tube is inserted through his nose and ends up in his stomach. They tape the tube to his face to keep it from coming out. Well, last Friday we noticed that Samuel’s bed where he lay was soaked. It took a little while to figure out that somehow his feeding tube had worked its way up into his mouth and his entire feeding poured out the side of his mouth. Thank God that it went out his mouth and not into his lungs. The nurses fixed the tube, changed his bed and clothes. During this time Samuel became very chilled and for several days he has been having problems regulating his temperature. He has been doing better the last two days. This week we should be talking with the surgeon about his tracheotomy and G-tube. After Samuel heals from these surgeries, we will again try to remove him from the ventilator. He has been doing well breathing over the vent and our hope is that when the vent tube is removed, his secretions will no longer cause problems and we can take him home without a ventilator. Right now, our time at the hospital will probably be another 8-10 weeks.

On my last update I said Samuel was opening one of his eyes. Since then, he has been opening both eyes. The most he has opened either of them is half-way. When his eyes are open, there are times when you can see his blue eyes and other times you cannot. Evette noticed there are times when his eyes are closed we can see REM (rapid eye movement) which would indicate sleeping patterns. I believe he can hear because he will be laying perfectly still and I will talk to him close to his ear and he will begin moving. We play music for him and he moves a lot more with the music than without. I have a voice recorder that I can download to my computer and we have started recording our voices for Samuel to hear. We are recording Dad, Mom and Siblings reading from the Bible, prayers, short stories or just talking to him. We will then copy this to a CD and play it for him just like the music. If anyone would like to send a voice recording for Samuel to hear, send it as an attachment to my email (yemery2009@hotmail.com) and I will add it to the CD’s. I don’t think you need a voice recorder, I have been told that most computers have this capability with a microphone.

We continue to ask for your prayers. Pray for healing of the brain; they did another ultrasound of his head and there is still major damage. The doctor said that as his body grows, his head will not grow as fast because the damaged areas will not grow and push out on the skull. God created the heavens and the earth and is perfectly capable of healing Samuel’s brain; we will continue to pray to that end. Pray that both eyes would open fully and he would have sight and his ears will hear. Pray we can have both surgeries scheduled at the same time, so that Samuel only has to go under anesthesia once, not twice. For God to guide the surgeon’s hands and Samuel’s protection under the anesthesia. We are still praying for his gag reflex to develop.

I believe that God has great plans for Samuel’s life and I thank Him for you and your prayers,

Yancy