Two weeks in China plus 6 weeks at home equals Adoption Leave over...sigh. This 8th week of leave has been pretty good. The beginning of the week started off a bit rough, but ended on a high note. After being home 6 weeks Judah and Jake have finally started playing together in what seems like friendly play and not taking toys and whining about the other play (don't get me wrong, that still happens, but we are seeing more playful play out of the two). The beginning of this week was very difficult for me as a momma. Having a 4 almost 5 year old, a 3, and a 2 year old has its challenges to say the least, but after consulting with some mommy friends and lots of prayer we have all seemed to have survived until Friday.
Judah health update: We have been told that there are a spectrum of cases dealing with children born with an imperforated anus, but Judah is on the latter end of the spectrum (more complicated). Seeing that he does not have a sacrum nor bladder control with blockage seems to have complicated his upcoming surgical procedures. Fortunately, Children's Hospital here in Columbus has impressed us on a number of occasions and yesterday's conversation with Dr. Groner was no different. Our surgeon went out of his way to contact his mentor and top surgeon in our country, Dr. Levitt in Cincinnati, to discuss Judah's case and ask for his help/advice. Can I just say right now how impressive it is to experience this example of humility on this surgeon's behalf? Amazing! Jason wanted to ask Dr. Groner on the phone "If this was your child.." and he didn't have to! We knew right away that this surgeon was treating our child with the best possible care. Kudos!
Dr. Levitt believes that the "pull through" surgery should probably be performed first instead of the appendicectomy(?) and has been fully briefed on Judah's conditions. Also because he is a licensed surgeon in Ohio the paperwork has already been put in the works for him to be present and assist with Judah's upcoming surgery. During his surgery Dr. Alpert from urology will also have to be present in order to work on the bladder blockage that Judah is experiencing as well as fixing a testicle issue (tmi, I know). Trying to arrange a time for surgery with 3 different surgeons has proven to be quite difficult, but it WILL happen and our Judah will be in the best care. Of this I am certain.
As a mom I never dreamed I'd be involved in something as complicated as this. When I was carrying our older 2 children I prayed and prayed for healthy, cute, fun kids, which the good Lord granted. We prayed so hard for healthy children and then we voluntarily sign up for a child with physical ailments?! How does that make any sense? It doesn't. Call us "crazy", or call us "called". I know...it's both. I know that the Lord has his hand in all of this and I am continually amazed at how each day unfolds. I don't know why Jason and I were the ones the Lord chose to be Judah's parents, but I think as time goes by we will be blessed by this little one more and more and his life will be continue to be a testimony to all of us how faithful God is to each of us. I know that He has a plan for my Judah and I now pray that I can live up to the momma that he deserves. I hope he knows that I'm trying. I love you, Judah.
Saturday, September 21, 2013
Tuesday, September 10, 2013
Surgery is Pending
We have learned a few new things about Judah's anatomy since my last post. Yesterday we were at Children's Hospital and Judah had something called a VSUG where a catheter was placed in order to send fluid up into his bladder to see how well his bladder empties and if there is reflux.
Problem #1 The top radiologist in the area could not get the catheter into Judah's bladder because of a blockage. He told me 99% of the time this does not happen.
Problem #2 The doctor was able to fill up Judah's bladder, but there was some reflux and leakage. I believe his words were "Well, this is not normal." When a child has an imperforated anus at birth a lot of times the ureter and the colon are attached and need detached. When the detaching was completed during Judah's surgery it appears as though the scarring on the ureter was extensive and has left a very tiny opening for the urine to be released from his bladder.
After the procedure we visited with the Urologist and he suggested that he and the GI surgeon have a meeting to discuss what to do with Judah. It sounds like he will need to have anesthesia so that both surgeons can take a look at everything in order to have a better idea as to what to actually do with him. And while he's under the urologist will correct the testicle infection problem that he keeps having.
While at the appointment I asked the surgeon if Judah's issues can be "fixed" and if he will be "normal". Judah will always have to go to the restroom differently than the rest of us. He may have to empty himself via tubes, BUT will he be a "normal" growing kid that plays and runs and laughs and loves? Yes! We just need to get him to the point where he is no longer getting infections and is able to relieve himself without pain. The rest of the world won't know that he has "bottom" issues...just regular issues like the rest of us. Well, maybe "regular" is the wrong choice of word....And if you ask him in a few years "How is it going?" you may get a strange answer, but other than that I think he's going to be okay.
Please continue to pray for my little Judah. We still have a long road ahead with surgeries and doctor visits and pain, but eventually everything will get figured out and he'll be golden.
Thanks.
Problem #1 The top radiologist in the area could not get the catheter into Judah's bladder because of a blockage. He told me 99% of the time this does not happen.
Problem #2 The doctor was able to fill up Judah's bladder, but there was some reflux and leakage. I believe his words were "Well, this is not normal." When a child has an imperforated anus at birth a lot of times the ureter and the colon are attached and need detached. When the detaching was completed during Judah's surgery it appears as though the scarring on the ureter was extensive and has left a very tiny opening for the urine to be released from his bladder.
After the procedure we visited with the Urologist and he suggested that he and the GI surgeon have a meeting to discuss what to do with Judah. It sounds like he will need to have anesthesia so that both surgeons can take a look at everything in order to have a better idea as to what to actually do with him. And while he's under the urologist will correct the testicle infection problem that he keeps having.
While at the appointment I asked the surgeon if Judah's issues can be "fixed" and if he will be "normal". Judah will always have to go to the restroom differently than the rest of us. He may have to empty himself via tubes, BUT will he be a "normal" growing kid that plays and runs and laughs and loves? Yes! We just need to get him to the point where he is no longer getting infections and is able to relieve himself without pain. The rest of the world won't know that he has "bottom" issues...just regular issues like the rest of us. Well, maybe "regular" is the wrong choice of word....And if you ask him in a few years "How is it going?" you may get a strange answer, but other than that I think he's going to be okay.
Please continue to pray for my little Judah. We still have a long road ahead with surgeries and doctor visits and pain, but eventually everything will get figured out and he'll be golden.
Thanks.
Tuesday, September 3, 2013
Surgery is Scheduled
"It's fixed" they said. "If anything he might need another minor surgery." "An imperforated anus? Oh, that's not too bad." (Comments made PRIOR to bringing Judah home.)
New comments: "We just have to take it slow." "You'll become friends with the staff at Children's [hospital]." "This is worse than we thought." "It's not hopeless..." "Well, we didn't expect that."
Psalm 46-47 "God is our refuge and strength, an ever present help in trouble. Therefore we will not fear."
We have spent much time with the staff a Children's Hospital in Columbus these past 2 weeks. We are all trying to put together the puzzling past and anatomy of our Judah. Every test reveals something new and, shall I say, not so encouraging.
Last Thursday Judah had to endure a Barium Enema which showed us that his colon is all there, not twisted, and working properly (Yay!), BUT we also learned that he doesn't have a tailbone, or sacrum. At today's appointment (where 3 doctors/surgeons were present) we learned that "no sacrum" means "no sacral nerves or underdeveloped nerves", which means (pardon this) Judah has nothing telling him that he needs to go or NOT go, so he just "goes" all of the time, hence the 8-14 dirty diapers we are changing a day.
Unfortunately, the same seems to be the case for peeing..he just goes without trying. It just happens. We have more testing and a follow-up with the urinary department next week.
BUT (pun intended) for now we are learning about the absence of those sacral nerves. The surgeons are not sure that the nerves are ever going to be responsive. This means that if they redo the imperforated anus surgery (original plan) it could only mean that we go from 10 dirty diapers a day to maybe 8 dirty diapers a day. Without those nerves to help develop the necessary muscles the "holding it in" doesn't occur.
So what do we do, you ask (I asked too!)? Right now the main doctor wants to bring the tip of Judah's appendix to the surface and create a tube of sort. Then every morning we would put a saline solution into his appendix to clear out his colon which would help him stay "clean" for about 8 hours. This will help him get through a day at school someday without accidents. (You read that correctly-a day at school. Please note that Judah is only 2 and a day at school is a few years away.) This is our solution?! Down the road they said that he might be able to have some electrolysis work on the sacral nerves and perhaps we can get those working, but right now the cases are still being done on this new practice and Judah is too young.
His appendix plug surgery is scheduled for late October.
This is a bit more complex than we had originally thought we were getting ourselves into when we yelled "Yes!" to a child with this "special" special need. I am reminded of a day in China when Judah had gotten sick and I was on my 10 or 11th diaper change and clearly losing my mind in the sea of poo, when Jason grabbed Judah up, gave him a hug and said "Little guy you were meant to be my son and we're going to get through this together." Those words still ring true.
This time when my little man goes into surgery he'll have a momma and daddy to sit right there beside him, holding his hand and loving him no matter what happens, or what he/we will have to endure. He is meant to be ours and for some reason God thinks we are able to withstand this trial. I'm so thankful. I'm so thankful that in the scheme of illnesses that Judah's is not cancer, not a terminal illness, not something worse! I feel honored that the Lord has called me to help this child. I know that with friends, family, prayers, helpers, doctors, nurses, and most of all our Father in heaven, it will all be okay. Maybe when we get heaven God will pull Jason and I aside and we'll watch all of this unfold and the Lord will say "See what I did there? You needed to grow in faith and that little one needed ... you."
I know it'll be okay. We won't be shaken.
"We're going to get through this...together."
New comments: "We just have to take it slow." "You'll become friends with the staff at Children's [hospital]." "This is worse than we thought." "It's not hopeless..." "Well, we didn't expect that."
Psalm 46-47 "God is our refuge and strength, an ever present help in trouble. Therefore we will not fear."
We have spent much time with the staff a Children's Hospital in Columbus these past 2 weeks. We are all trying to put together the puzzling past and anatomy of our Judah. Every test reveals something new and, shall I say, not so encouraging.
Last Thursday Judah had to endure a Barium Enema which showed us that his colon is all there, not twisted, and working properly (Yay!), BUT we also learned that he doesn't have a tailbone, or sacrum. At today's appointment (where 3 doctors/surgeons were present) we learned that "no sacrum" means "no sacral nerves or underdeveloped nerves", which means (pardon this) Judah has nothing telling him that he needs to go or NOT go, so he just "goes" all of the time, hence the 8-14 dirty diapers we are changing a day.
Unfortunately, the same seems to be the case for peeing..he just goes without trying. It just happens. We have more testing and a follow-up with the urinary department next week.
BUT (pun intended) for now we are learning about the absence of those sacral nerves. The surgeons are not sure that the nerves are ever going to be responsive. This means that if they redo the imperforated anus surgery (original plan) it could only mean that we go from 10 dirty diapers a day to maybe 8 dirty diapers a day. Without those nerves to help develop the necessary muscles the "holding it in" doesn't occur.
So what do we do, you ask (I asked too!)? Right now the main doctor wants to bring the tip of Judah's appendix to the surface and create a tube of sort. Then every morning we would put a saline solution into his appendix to clear out his colon which would help him stay "clean" for about 8 hours. This will help him get through a day at school someday without accidents. (You read that correctly-a day at school. Please note that Judah is only 2 and a day at school is a few years away.) This is our solution?! Down the road they said that he might be able to have some electrolysis work on the sacral nerves and perhaps we can get those working, but right now the cases are still being done on this new practice and Judah is too young.
His appendix plug surgery is scheduled for late October.
This is a bit more complex than we had originally thought we were getting ourselves into when we yelled "Yes!" to a child with this "special" special need. I am reminded of a day in China when Judah had gotten sick and I was on my 10 or 11th diaper change and clearly losing my mind in the sea of poo, when Jason grabbed Judah up, gave him a hug and said "Little guy you were meant to be my son and we're going to get through this together." Those words still ring true.
This time when my little man goes into surgery he'll have a momma and daddy to sit right there beside him, holding his hand and loving him no matter what happens, or what he/we will have to endure. He is meant to be ours and for some reason God thinks we are able to withstand this trial. I'm so thankful. I'm so thankful that in the scheme of illnesses that Judah's is not cancer, not a terminal illness, not something worse! I feel honored that the Lord has called me to help this child. I know that with friends, family, prayers, helpers, doctors, nurses, and most of all our Father in heaven, it will all be okay. Maybe when we get heaven God will pull Jason and I aside and we'll watch all of this unfold and the Lord will say "See what I did there? You needed to grow in faith and that little one needed ... you."
I know it'll be okay. We won't be shaken.
"We're going to get through this...together."
Subscribe to:
Posts (Atom)