It's about time I spill the update of our lives...Wow, that sounded much more exciting then it really is.
Well folks, my sweet urrr... wrong word. My adorable lil guy is back home! Sunday was the day. Jonah had his last dose of steroids and antibiotic, both which had to run through his PICC line, before he was discharged. I have to admit that this was my favorite hospitalization Jonah has ever had to go through. He had great residents (except for that one) a great attending and super wonderful nurses and respiratory therapists! We celebrated Jonah going home by bring cup cakes to the Rn's and Ice cream sandwiches to the RT's. He was there for 11 days, and these wonderful people made it zip by. Jonah turned on the charm like he does so well. He started out by blowing kisses to all the hospital staff, oh and some passer-buyers too. He ended his stay by casting spells on EVERYBODY! He finds so much joy in making others laugh!
Jonah is resuming all of his normal meds that he was already on and we have added the Viagra like I had previously mentioned and Gentian Violet because he got thrush from so much antibiotics.. He is doing so good! While he was at the hospital words just started coming to him. He says about 8-9words. Some of them he can say good and others he is struggling with, but who cares? He is starting to talk! I am so elated, I know how much he has been through, and this is so exciting for him as well.
Tonight we, in Utah are being hit with a blizzard so Isaac dug out the tree and decorations and as a family we decorated, laughed, and laughed some more at Jonah, as he put all his ornament's on the same branch directly on top of the others. Very cute.
Nov 23, 2010
Nov 17, 2010
update
We decided to go with using the Viagra. I'm still unsure about the decision, but the doctors had good reasoning for starting it now while he is under 24 hour care. He will be on a 6 week trial and we will just document the course.
Yesterday was turn around day for Mr.Jonah! He got down to his base line of .25 Lt of oxygen, but only for a moment as his lips turned blue within minutes. He was boosted up to a half liter and there he sat comfy for the rest of the day. At night he was turned back up to a full liter.
It's a good possibility that Jonah will be able to come home soon. Earliest will be Sunday!
Yesterday was turn around day for Mr.Jonah! He got down to his base line of .25 Lt of oxygen, but only for a moment as his lips turned blue within minutes. He was boosted up to a half liter and there he sat comfy for the rest of the day. At night he was turned back up to a full liter.
It's a good possibility that Jonah will be able to come home soon. Earliest will be Sunday!
Nov 15, 2010
Today has been interesting!
Where to start...
Jonah is still in the hospital and will be till some time next week, but the Dr's have assured me that he will not be in here for Thanksgiving. Feww, because my family will be having Thanksgiving with us in Utah! Jonah is up to his old tricks. Today he pulled out his G button (feeding tube) and just looked at me like "wow mom, did you see that?" He didn't even cry, he is strange. I think he likes to keep us all on our toes. So funny!
Jonah has a strange diagnosis, one that I have not posted about and have shared with only a few. I would continue to keep it to myself only, I have tried to do research on it and have found it impossible to find other kiddos with this same diagnosis. I will be the first, in hopes that other parents might come across my blog on google and respond, or perhaps get answers for their child.
Jonah has Priapism. In English this means that Jonah has prolonged erections. This has been going on for the past 6 or 7 months. We have seen two urologists and until today we haven't gotten very far. we have taken him off meds that might be causing it but nothing changed. I went to the Dr's last Monday for this but the breathing freaked everyone out and once again this was put on the back burner. When he was admitted I brought it up and said I wanted to see a urologist in house to have a few procedures done. One being a cap gas.
A cap gas is a blood with drawl that measures the oxygen exchange in the blood. So yes, Jonah had blood withdrawn from his penis. It was sad. He cried, I cried, I cried even more when I saw the bruises on his little pee pee. The test came back at regular numbers. This is good...Kind of. It tells us that he is not having any tissue damage, and will be fine later on in life ;) However this does not give us anymore information, like why this is happening and so on. His longest erection has been 14 hours.
The urologist seems overly excited about this case as he has never seen this is a young child, and he too can find zilch information on the topic. He is now working with an adult urologist from the University hospital. This is what they came up with: Jonah has a diagnosis of stuttering priapism. The options are: let it be and do nothing, which is what we have been doing but this causes many problems with his everyday routine as he can't walk or even pay attention to anything else. OR we can start him on a daily dose of Viagra. Yes, Viagra. I know this sounds strange I too questioned it as it seems Viagra is suppose to start an erection, I guess you can also use it to cure one. If we decide to do this he will need to take it daily. This may or may not work due to the lack of children suffering with no reasoning behind the priapism. I'm not sure what to do as of right now, no decision has been made on our behalf.
Not much has changed for Jonah in regards to his health. All tests have come back negative for viruses or bacteria. This leads his doctor's to believe that it is his lung disease: Non-CF Bronchiectasis. This is not good. It makes me feel sick. I have worked so hard at trying to keep his lungs "good!" He will have a CT on Friday to see what new damage is occurring.
Please keep this handsome fellow in your thoughts and prayer's.
Jonah is still in the hospital and will be till some time next week, but the Dr's have assured me that he will not be in here for Thanksgiving. Feww, because my family will be having Thanksgiving with us in Utah! Jonah is up to his old tricks. Today he pulled out his G button (feeding tube) and just looked at me like "wow mom, did you see that?" He didn't even cry, he is strange. I think he likes to keep us all on our toes. So funny!
Jonah has a strange diagnosis, one that I have not posted about and have shared with only a few. I would continue to keep it to myself only, I have tried to do research on it and have found it impossible to find other kiddos with this same diagnosis. I will be the first, in hopes that other parents might come across my blog on google and respond, or perhaps get answers for their child.
Jonah has Priapism. In English this means that Jonah has prolonged erections. This has been going on for the past 6 or 7 months. We have seen two urologists and until today we haven't gotten very far. we have taken him off meds that might be causing it but nothing changed. I went to the Dr's last Monday for this but the breathing freaked everyone out and once again this was put on the back burner. When he was admitted I brought it up and said I wanted to see a urologist in house to have a few procedures done. One being a cap gas.
A cap gas is a blood with drawl that measures the oxygen exchange in the blood. So yes, Jonah had blood withdrawn from his penis. It was sad. He cried, I cried, I cried even more when I saw the bruises on his little pee pee. The test came back at regular numbers. This is good...Kind of. It tells us that he is not having any tissue damage, and will be fine later on in life ;) However this does not give us anymore information, like why this is happening and so on. His longest erection has been 14 hours.
The urologist seems overly excited about this case as he has never seen this is a young child, and he too can find zilch information on the topic. He is now working with an adult urologist from the University hospital. This is what they came up with: Jonah has a diagnosis of stuttering priapism. The options are: let it be and do nothing, which is what we have been doing but this causes many problems with his everyday routine as he can't walk or even pay attention to anything else. OR we can start him on a daily dose of Viagra. Yes, Viagra. I know this sounds strange I too questioned it as it seems Viagra is suppose to start an erection, I guess you can also use it to cure one. If we decide to do this he will need to take it daily. This may or may not work due to the lack of children suffering with no reasoning behind the priapism. I'm not sure what to do as of right now, no decision has been made on our behalf.
Not much has changed for Jonah in regards to his health. All tests have come back negative for viruses or bacteria. This leads his doctor's to believe that it is his lung disease: Non-CF Bronchiectasis. This is not good. It makes me feel sick. I have worked so hard at trying to keep his lungs "good!" He will have a CT on Friday to see what new damage is occurring.
Please keep this handsome fellow in your thoughts and prayer's.
Nov 13, 2010
Nov 12, 2010
here we go again
Oh my goodness what a day! It ended on a low with Jonah pulling out his 2nd IV.
What a stinker! A cute stinker though!
This morning Jonah went in to have a PICC line placed in his left arm. Like I mentioned in my last post he has already had 5 placed in that arm through the years past. Well, today we learned that his veins are "bad" in the area where the PICC needed to be placed so it was a no go, do over! Tomorrow he will have one placed in his beautiful clean untouched upper right arm. When he pulled his iv out tonight the iv team came in to place another one in his right hand and all those veins were shot too. This is not good. The iv needs to be in the right hand where the PICC will be placed. Next option is PICC in the leg... Ummm, no thank you!
Nothing much has changed today which is a little disappointing. Jonah is still on a high amount of O's for what his norm is. All of his cultures and tests have come back normal, so at this point no one knows what is going on with him... not what I want to hear. Maybe more answers tomorrow. It looks like Jonah will be here for the next 14 days. Thank goodness for these fabulous nurses and respiratory therapists he has been getting!
What a stinker! A cute stinker though!
This morning Jonah went in to have a PICC line placed in his left arm. Like I mentioned in my last post he has already had 5 placed in that arm through the years past. Well, today we learned that his veins are "bad" in the area where the PICC needed to be placed so it was a no go, do over! Tomorrow he will have one placed in his beautiful clean untouched upper right arm. When he pulled his iv out tonight the iv team came in to place another one in his right hand and all those veins were shot too. This is not good. The iv needs to be in the right hand where the PICC will be placed. Next option is PICC in the leg... Ummm, no thank you!
Nothing much has changed today which is a little disappointing. Jonah is still on a high amount of O's for what his norm is. All of his cultures and tests have come back normal, so at this point no one knows what is going on with him... not what I want to hear. Maybe more answers tomorrow. It looks like Jonah will be here for the next 14 days. Thank goodness for these fabulous nurses and respiratory therapists he has been getting!
Nov 11, 2010
Jonah's back in the hospital
Jonah is back in the hospital. I took him up this morning after a really long night at home. Jonah was struggling yesterday and we took him into the pulmo Dr and she had us take him over to the new PCMC building in Riverton to get a chest x-ray. The x-ray showed that Jonah was trapping air with every exhale, but taking in good air. The problem: If he is taking in more air then he is exhaling he starts to build up CO2 levels and that's never good.
I thought I could handle this all by my self at home, but by 6:00pm I was regretting my decision as I could hear grunts and see him retracting in all places you could retract. Not good! So 7 this morning, Morgan, Jonah and I drove up to the hospital to have him admitted.
It is a HUGE inconvenience to have him up here, but this is where I feel he needs to be. I'm not sue how long the stay will be, as nothing has changed from this morning till now. Tomorrow he will have his 5th picc line placed in his upper left arm, this way he will not have to have his hands or feet irritated by the IV's. He has already pulled out one IV! He's trouble I tell you, yet no one ever believes me when I say that!
While he is under sedation for his PICC line they will also perform an Echo cardiogram to check on his heart. He has never had heart problems, nor do I think the doc's think he does now, I think it's just one of those things they want to check just to rule out. Though they are concerned about the amount of oxygen he is on.
I will up date more when more news comes my way. I'm hoping tomorrow will be turn around day!
I thought I could handle this all by my self at home, but by 6:00pm I was regretting my decision as I could hear grunts and see him retracting in all places you could retract. Not good! So 7 this morning, Morgan, Jonah and I drove up to the hospital to have him admitted.
It is a HUGE inconvenience to have him up here, but this is where I feel he needs to be. I'm not sue how long the stay will be, as nothing has changed from this morning till now. Tomorrow he will have his 5th picc line placed in his upper left arm, this way he will not have to have his hands or feet irritated by the IV's. He has already pulled out one IV! He's trouble I tell you, yet no one ever believes me when I say that!
While he is under sedation for his PICC line they will also perform an Echo cardiogram to check on his heart. He has never had heart problems, nor do I think the doc's think he does now, I think it's just one of those things they want to check just to rule out. Though they are concerned about the amount of oxygen he is on.
I will up date more when more news comes my way. I'm hoping tomorrow will be turn around day!
Nov 7, 2010
Jonah's 3!
Happy birthday to my beautiful boy.
Three years ago today I was sick. Really sick. I could not stop coughing! I did go to work though. I worked a normal 10 hr day and then went home to relax and take a hot shower to help relieve some tightness in my chest. I got out but kept coughing. Every time I coughed I would feel my stomach get hard. (braxton hicks) I decided to drive my self up to the hospital and just have them check me out to make sure my coughing wasn't causing any distress on baby. I Isaac stayed home with baby number one; Morgan.
Baby Jonah was having some issues in utero.
I was checked into the woman's pavilion and my midwife was called. I was a bit upset that they wanted me to get into a robe. I then was more irritated when they asked me to stay the night for observation. I was furious when they told me that if the baby was still feeling distress by morning I was going to be induced!
All I wanted was to have this baby with NO DRUGS and strictly HYPNO-BIRTHING! I spent a lot of dough to learn this method and had such a hard labor with Morgan that I got an epidural! I had gone over my birthing plan countless times with my midwife and I was only in the first stages and they were already giving me pitocin!
After a long 11 hours on pitocin and with no other drugs but very painful contractions it was time to face my worst fear ever... A C-Section! I was so scared. I walked into the OR having to stop every few seconds to breath out a contraction and then move another few feet to stop and repeat. I was lifted onto the table and the real fun began.
The anesthesiologist was getting frustrated that I kept moving while he was trying to prep me for the c section. ~ Listen, It is hard to curl your back like a cat when you have been on a high dose of pitocin with no pain drugs and having extreme contractions! When he numbed me I was numb! I could not even cough, even though I had to. I could barely whisper. All I remember is the Dr and my midwife saying out loud that Jonah was a peanut. At that state of mind I was picturing a deformed head and a little tiny curved body...Like a peanut. A friend handed me my baby. I just looked at his perfect body and could feel tears rolling down my cheek as I still could hardly move. I was in love. In that moment I knew I had a special baby.
Jonah Hebrew for Dove.
Nov 5, 2010
poor guy
Yesterday afternoon I got a call from Jonah's teacher. She was worried that he was wheezing so much and had to give him 2 treatments with in the first 2 hours of him being at school. I offered to come and pick him up, but she thought he was sounding a bit better. I know Jonah and I know he can either get sick very fast or just tease us with a cough here and a wheeze there.
When I got him off the bus I took him home and hooked him up to his sat moniter. (he has been doing great this week that I have only been using oxygen on him in the night) He was sating at a low 84-85. Oh my gosh. I feel so guilty!!! Who knows how long his sats had been that low as I didn't even check his sats in the morning because of all the excitment of what yesterday morning brought us. Ugh, I really do just feel sick about neglecting to check before I had him off of his oxygen for so long.
Today he has been running a low grade temp, but the tylenol brings it back down to 99.2, I called his pulmo and she will call in an antibiotic. He has been sleeping most of today, and I am just going to let him be. If we are up all night with a wild child at least we know he's better! I am just bummed because tomorrow is his first real party! Luckily it is only an hour long, as we didnt want to over stimulate him with to much at once. But, this is exactly why we have not ever done a party for Jonah. He is ALWAYS sick!
When I got him off the bus I took him home and hooked him up to his sat moniter. (he has been doing great this week that I have only been using oxygen on him in the night) He was sating at a low 84-85. Oh my gosh. I feel so guilty!!! Who knows how long his sats had been that low as I didn't even check his sats in the morning because of all the excitment of what yesterday morning brought us. Ugh, I really do just feel sick about neglecting to check before I had him off of his oxygen for so long.
Today he has been running a low grade temp, but the tylenol brings it back down to 99.2, I called his pulmo and she will call in an antibiotic. He has been sleeping most of today, and I am just going to let him be. If we are up all night with a wild child at least we know he's better! I am just bummed because tomorrow is his first real party! Luckily it is only an hour long, as we didnt want to over stimulate him with to much at once. But, this is exactly why we have not ever done a party for Jonah. He is ALWAYS sick!
Nov 4, 2010
Ode to Sarah the OT
This is my Ode to "the-wa" as Jonah would say. Today we said good bye to Jonah's Occupational therapist, Sarah. It has been so hard, as I knew this day was approaching, it seems as though I skipped a few days in the week and now the day has come and we have said our good byes.
Good bye's suck! I hate good bye's.
I feel like I just got divorced from Jonah's 3rd parent.
Though we have found a new OT, it difficult to trade one for the other, as Sarah has worked with Jonah for a couple years and knows him well. Sarah is so excepting to his flaws as well as mine. She has taught me so much and has given me much hope pertaining to Jonah's future. She has watched him meet HUGE milestones developmentally, milestones that others may just shrug off as a whoopie, she has cheered and celebrated.
Every morning while dressing Jonah, he peeks out his bed room window looking, asking, The-wa? The-wa? I have finally got him to understand that Sara doesn't come everyday, and now she doesn't come at all. I feel bad that Jonah can't grasp that thought. So he will continue to ask for "The-wa" until one day he just forgets. sad.
Jonah is turning 3 on Sunday and so he looses his early intervention. Early Intervention was where we met Sarah. Although Isaac and I will pay out of pocket for Jonah to continue to do a therapy play group through early intervention, he no longer qualifies for an OT through them.
Because it was our last session with Sarah, we showered her with love and thank yous. Sarah is amazing and any child who gets the opportunity to work with her will fall in love with her, just as Jonah has.
I dislike change so much. I'm trying to not be sad, but it is sad. we are loosing a person who is so important to our son. How can I not shed a few tears?
Good bye's suck! I hate good bye's.
I feel like I just got divorced from Jonah's 3rd parent.
Though we have found a new OT, it difficult to trade one for the other, as Sarah has worked with Jonah for a couple years and knows him well. Sarah is so excepting to his flaws as well as mine. She has taught me so much and has given me much hope pertaining to Jonah's future. She has watched him meet HUGE milestones developmentally, milestones that others may just shrug off as a whoopie, she has cheered and celebrated.
Every morning while dressing Jonah, he peeks out his bed room window looking, asking, The-wa? The-wa? I have finally got him to understand that Sara doesn't come everyday, and now she doesn't come at all. I feel bad that Jonah can't grasp that thought. So he will continue to ask for "The-wa" until one day he just forgets. sad.
Jonah is turning 3 on Sunday and so he looses his early intervention. Early Intervention was where we met Sarah. Although Isaac and I will pay out of pocket for Jonah to continue to do a therapy play group through early intervention, he no longer qualifies for an OT through them.
Because it was our last session with Sarah, we showered her with love and thank yous. Sarah is amazing and any child who gets the opportunity to work with her will fall in love with her, just as Jonah has.
I dislike change so much. I'm trying to not be sad, but it is sad. we are loosing a person who is so important to our son. How can I not shed a few tears?
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