Today was the Spaghetti Dinner benefit for Ava, and despite some slick roads the turn out was unbelievable. Though we were not there (we were in spirit), the feed back was that everything was well organized and in the end, was a great success.
Instead of posting here the many "Thank Yous" Teresa and I owe everyone who organized this event, assisted with this event, or participated in this event - - we would like to for now just share the letter we wrote that was read during the event. Truth be told, Teresa and I are still in a state of shock as to how successful the event was and the fact that there are this many people in Ava's corner.
[ As drafted Saturday 01/17/09 by Teresa and I ]
Good afternoon,
Though we cannot personally be there today to thank each and every one of you for coming out in support of Ava, we would like to share some brief words about her and our gratitude to everyone who has supported us through everything she has faced thus far.
Ava has truly been a blessing to us in so many ways. Though we haven’t had what many would deem a “normal” life with her because of the many challenges that have presented themselves along her short life’s journey, we feel that everything is happening in accordance with God’s plan for her and we wouldn’t have it any other way.
Ava has battled congestive heart failure, two open-heart surgeries, and a serious form a staph infection - - all within the past few months. She currently is working through some digestion issues stemming from everything she’s been through, and with time she is expected to be a healthy and normal little girl.
Ava has revealed to us what’s truly important in life - - faith, love, family, and friends. She has shown us true bravery and strength throughout her trials and has taught us how to take nothing for granted in life; because like Ava, life is just too precious. When times were at there worst, Ava even reminded us to somehow keep positive and patient.
Through everything, there has been an overwhelming flow of support for us and Ava. Everything, from cards, to text messages, emails, phone calls - - hospital visits and home cooked meals- - prayers, warm thoughts, and encouraging words, to events like today’s… Everything has truly made us feel humbled, loved, and most importantly allowed us to remain at Ava’s side in the hospital. We are truly grateful for everyone and everything and personally feel indebted to you all. There are many who are not as fortunate to receive the same and for that we are certainly blessed.
With the time table not being explicitly defined, we will continue to take Ava’s recovery one day at a time. For any and all we will try to keep her progress updated on the blog (www.avashines.com) and look forward to the day we can finally leave the hospital and share this amazing little girl with the world.
With deepest love and gratitude,
Bryan, Teresa, and Ava Smith
1/19/09
Sat 01/17/09 - - Anxiety and Healing
Though Ava's heart rate has been a little elevated the cardiologists were not too concerned at this point.
Teresa inquired about possibly starting Ava on a bottle as Ava is beginning to tell us she is ready - - bowel movements, gas, stomach growling, etc. The staff decided to wait for now, looking to the next round of GI testing tentatively scheduled for later in the week to reveal if in fact her stomach is resuming normal emptying function or not.
Infectious Disease examined the irritation in Ava's groin and told us to leave it exposed right now, as that it is probably a contact reaction to the bandage and airing it out will help heal it faster. They also reiterated that until Ava has her feeding issues licked and the IV antibiotics course has been completed, there is no reason for Ava to leave the Children's Hospital.
By day's end, the irritation that was left to air dry was healing very nicely.
Tomorrow is spaghetti dinner benefit at St. Agnes in Elyria. Though we cannot be there, we are anxious to see how the turn out is going to be and how everything is to unfold. Teresa and I worked on a letter that will be read during the dinner and will be posted to the blog following the event. We are very blessed to have such great friends and family who would go out of their way to do this for us/Ava.
Teresa inquired about possibly starting Ava on a bottle as Ava is beginning to tell us she is ready - - bowel movements, gas, stomach growling, etc. The staff decided to wait for now, looking to the next round of GI testing tentatively scheduled for later in the week to reveal if in fact her stomach is resuming normal emptying function or not.
Infectious Disease examined the irritation in Ava's groin and told us to leave it exposed right now, as that it is probably a contact reaction to the bandage and airing it out will help heal it faster. They also reiterated that until Ava has her feeding issues licked and the IV antibiotics course has been completed, there is no reason for Ava to leave the Children's Hospital.
By day's end, the irritation that was left to air dry was healing very nicely.
Tomorrow is spaghetti dinner benefit at St. Agnes in Elyria. Though we cannot be there, we are anxious to see how the turn out is going to be and how everything is to unfold. Teresa and I worked on a letter that will be read during the dinner and will be posted to the blog following the event. We are very blessed to have such great friends and family who would go out of their way to do this for us/Ava.
Fri 01/16/09 - - Bad "Band-Aid" Burn
Ava's chest dressing was changed today and the good news is that next week, there may no longer be a need for a dressing at all.
Teresa spoke with surgeon about the the road that lies ahead as there are still is some uncertainty as to what the path looks like. The surgeon weighed in, exclaiming that he would not begin to feel comfortable with Ava's progress until she makes it a few months after the IV antibiotics without any relapses with MRSA and won't feel 100% satisfied until she makes it a year.
It's a little overwhelming for Teresa and I to think that after everything Ava has been through that there is such a long road to complete recovery. However, the more we put two-and-two together we realize that getting out of the hospital is just one milestone of many we will have to meet before we can rest easy.
There were some stitches in Ava's groin near the Broviac site that were going to be removed, however a really nasty irritation covered the area. According to one of the staff, it looked like a bad "Band-Aid Burn". Ava does have sensitive skin and the outline of the bandage that covered the stitches was preeminent.
For now, we are changing Ava's diapers frequently and putting Bacitracin on the irritation while keeping it covered by a 2x2 gauze.
Teresa spoke with surgeon about the the road that lies ahead as there are still is some uncertainty as to what the path looks like. The surgeon weighed in, exclaiming that he would not begin to feel comfortable with Ava's progress until she makes it a few months after the IV antibiotics without any relapses with MRSA and won't feel 100% satisfied until she makes it a year.
It's a little overwhelming for Teresa and I to think that after everything Ava has been through that there is such a long road to complete recovery. However, the more we put two-and-two together we realize that getting out of the hospital is just one milestone of many we will have to meet before we can rest easy.
There were some stitches in Ava's groin near the Broviac site that were going to be removed, however a really nasty irritation covered the area. According to one of the staff, it looked like a bad "Band-Aid Burn". Ava does have sensitive skin and the outline of the bandage that covered the stitches was preeminent.
For now, we are changing Ava's diapers frequently and putting Bacitracin on the irritation while keeping it covered by a 2x2 gauze.
Thurs 01/15/09 - - Short and Sweet
Ava's feeds were upped to a 30-calorie formula.
She remains at 22cc per hour through the CorPak at this point, but there is hope that Ava's stomach will begin functioning normally soon.
She remains at 22cc per hour through the CorPak at this point, but there is hope that Ava's stomach will begin functioning normally soon.
Wed 01/14/09 - - Jack Frost 2, Bryan 0
Upon further review by the surgeon, the clot they are watching in the echo tests is stable. He stated that there is some evidence to suggest that it might have decrease a little bit in size, but for now they are going to wait until the results of the next echo (scheduled for Monday 01/19) before making any further conclusions.
Ava's feeds were increased to 27-calorie formula at a rate of 22cc per hour. Because of this, all IV maintenance fluids were discontinued - - a sign that Ava is starting tolerate the feeding regimen and will be ready for when her stomach kicks back into gear.
Further supporting Ava's progress was her weight - - 3.87 kilograms (8.51 pounds).
The day's highlight though was the weather. After a grueling day at the office, the Winter Blast which brought rain, sleet, snow, and sub-zero temperatures prevented me from making it back to hospital as I usually do. Papa picked up the extra shift and substituted in my absence . On a trivial note, I slept in our bed for the first time since December 16th (other times I have been home during Ava's stay I have made it only to the couch....).
Ava's feeds were increased to 27-calorie formula at a rate of 22cc per hour. Because of this, all IV maintenance fluids were discontinued - - a sign that Ava is starting tolerate the feeding regimen and will be ready for when her stomach kicks back into gear.
Further supporting Ava's progress was her weight - - 3.87 kilograms (8.51 pounds).
The day's highlight though was the weather. After a grueling day at the office, the Winter Blast which brought rain, sleet, snow, and sub-zero temperatures prevented me from making it back to hospital as I usually do. Papa picked up the extra shift and substituted in my absence . On a trivial note, I slept in our bed for the first time since December 16th (other times I have been home during Ava's stay I have made it only to the couch....).
Tues 01/13/09 - - Some Meds Stop... Some Start
Overall, today was a pretty blah day.
The Gentamicin IV antibiotic was stopped. The main purpose for it was to help boost the efforts of the Vancomycin antibiotic in fighting the MRSA infection. Due to Ava's progress and the overall concentration level of Gentamicin in her blood, it was no longer necessary.
The renal ultrasound was performed and an echo was scheduled. Ava was started on a quarter of baby aspirin daily to thin her blood to keep the clot they are watching in check. The IV Heparin drip was lowered from 1.2 to 0.77.
Ava's weight this morning was 3.845 kilograms, roughly 8.46 pounds - - She is starting to show signs of fattening. By day's end she was at 19cc per hour on her CorPak feeds.
The Broviac dressing and chest dressing were changed and the echo was performed.
The renal ultrasound and the echo both came back as normal.
The Gentamicin IV antibiotic was stopped. The main purpose for it was to help boost the efforts of the Vancomycin antibiotic in fighting the MRSA infection. Due to Ava's progress and the overall concentration level of Gentamicin in her blood, it was no longer necessary.
The renal ultrasound was performed and an echo was scheduled. Ava was started on a quarter of baby aspirin daily to thin her blood to keep the clot they are watching in check. The IV Heparin drip was lowered from 1.2 to 0.77.
Ava's weight this morning was 3.845 kilograms, roughly 8.46 pounds - - She is starting to show signs of fattening. By day's end she was at 19cc per hour on her CorPak feeds.
The Broviac dressing and chest dressing were changed and the echo was performed.
The renal ultrasound and the echo both came back as normal.
Mon 01/12/09 - - Team Ava Welcomes Sophia
The irritation that we were concerned about on Ava's leg had vanished. Infectious Disease believed it was a type of contact rash.
Before Ava could begin on Captopril a renal ultrasound was scheduled for Tuesday to ensure there was nothing to worry about in regards to Ava's fluctuating blood pressure.
One of the residents expressed a concern about further increasing Ava's feeds without a good bowel movement (there was no rhyme or reason to when and if Ava had one), so for now, the plan was to increase up to 17cc per our and remain on the IV maintenance fluids, but only at a low amount. Glycerin suppositories were to be used if Ava still could not produce a quality bowel movement or became uncomfortable.
Another discussion, this time with the cardiologist centered with Ava possibly going to a half-way location in Shaker Heights. The belief is that it was not necessary for Ava to remain at the Cleveland Clinic Children's Hospital, but would still be in a place that is close and where she could be monitored.
Team Ava was not really comfortable with this suggestion as a possible course of action in her recovery. What really stood out in our minds is that at a place like Shaker, Ava would be mixed in with other children recovering from various illnesses and the risk for her immune system coming in contact with a foreign body would be too high. Our stance - - Ava stays until she is ready to go home (if only clicking our heels would get us there....). The Infectious Disease team shares the same belief, so we are confident that it is the best course of action for Ava.
The results from the contents of Ava's stomach from the previous day came back positive for blood which was a little puzzling since subsequent stomach aspirations have been okay. We are going to continue to monitor any aspirations at this point.
The highlight of the day was that Team Ava gained another supporter, and Ava gained a friend. Sophia Anne Collins was born today, weighing in at 8 lbs, 6.4 ounces with a length of 20 inches. We would like to extend our congratulations to Sarah and Sean and to let everyone know that Sophia can be followed at her blog : http://sophiacollins.blogspot.com.
Before Ava could begin on Captopril a renal ultrasound was scheduled for Tuesday to ensure there was nothing to worry about in regards to Ava's fluctuating blood pressure.
One of the residents expressed a concern about further increasing Ava's feeds without a good bowel movement (there was no rhyme or reason to when and if Ava had one), so for now, the plan was to increase up to 17cc per our and remain on the IV maintenance fluids, but only at a low amount. Glycerin suppositories were to be used if Ava still could not produce a quality bowel movement or became uncomfortable.
Another discussion, this time with the cardiologist centered with Ava possibly going to a half-way location in Shaker Heights. The belief is that it was not necessary for Ava to remain at the Cleveland Clinic Children's Hospital, but would still be in a place that is close and where she could be monitored.
Team Ava was not really comfortable with this suggestion as a possible course of action in her recovery. What really stood out in our minds is that at a place like Shaker, Ava would be mixed in with other children recovering from various illnesses and the risk for her immune system coming in contact with a foreign body would be too high. Our stance - - Ava stays until she is ready to go home (if only clicking our heels would get us there....). The Infectious Disease team shares the same belief, so we are confident that it is the best course of action for Ava.
The results from the contents of Ava's stomach from the previous day came back positive for blood which was a little puzzling since subsequent stomach aspirations have been okay. We are going to continue to monitor any aspirations at this point.
The highlight of the day was that Team Ava gained another supporter, and Ava gained a friend. Sophia Anne Collins was born today, weighing in at 8 lbs, 6.4 ounces with a length of 20 inches. We would like to extend our congratulations to Sarah and Sean and to let everyone know that Sophia can be followed at her blog : http://sophiacollins.blogspot.com.
1/18/09
Sun 01/11/09 - - Four More (Weeks That Is)
Overnight there Teresa and I became concerned with an area on the right leg near the Broviac. We were not sure whether it was a simple skin irritation, or something more problematic so we made the staff aware.
During the morning rounds, there was some growing concern because Ava's respirations and blood pressure increased a little. An x-ray was ordered to see if there was any fluid build up in Ava's lungs or around her heart (and to verify placement of the NG and CorPak).
The Infectious Disease doctor explained to Teresa and I that it will probably be about four more weeks at the Children's Hospital while Ava finishes out the current course of IV antibiotics. Oral antibiotics will probably follow (even at home) to ensure that there are no further complications from the initial MRSA infection.
The x-ray came back "beautiful". The Lasix diuretic that Ava was on was discontinued as her fluid intake and output is under control.
There was some discussion about adding Captopril to Ava's medication regimine. This would aide with the fluctuating blood pressure. Supplemental Iron was also introduced to help stabilize Ava's blood counts (to avoid the need for any future transfusions).
There was some more good news on the feeding front as Ava's feeds were increased to 13cc per hour with 24-calorie formula. Previously Ava was at 22-calorie formula, and because both the volume and the caloric intake are now being increased Teresa and I are excited that Ava will start to fatten up and grow (she needs some meat on those bones!).
The one low note for the day is that during one of the aspirations of Ava's stomach (to check for any residual saliva/formula/air) that a tea-colored solution came out. We notified the staff, and it was sent over to the labs for further analysis.
During the morning rounds, there was some growing concern because Ava's respirations and blood pressure increased a little. An x-ray was ordered to see if there was any fluid build up in Ava's lungs or around her heart (and to verify placement of the NG and CorPak).
The Infectious Disease doctor explained to Teresa and I that it will probably be about four more weeks at the Children's Hospital while Ava finishes out the current course of IV antibiotics. Oral antibiotics will probably follow (even at home) to ensure that there are no further complications from the initial MRSA infection.
The x-ray came back "beautiful". The Lasix diuretic that Ava was on was discontinued as her fluid intake and output is under control.
There was some discussion about adding Captopril to Ava's medication regimine. This would aide with the fluctuating blood pressure. Supplemental Iron was also introduced to help stabilize Ava's blood counts (to avoid the need for any future transfusions).
There was some more good news on the feeding front as Ava's feeds were increased to 13cc per hour with 24-calorie formula. Previously Ava was at 22-calorie formula, and because both the volume and the caloric intake are now being increased Teresa and I are excited that Ava will start to fatten up and grow (she needs some meat on those bones!).
The one low note for the day is that during one of the aspirations of Ava's stomach (to check for any residual saliva/formula/air) that a tea-colored solution came out. We notified the staff, and it was sent over to the labs for further analysis.
The Disclaimer...
From 01/11/09 post going forward, you will notice that the blog posts are becoming more and more brief.
No, it's not because I am hurriedly trying to update this blog (though it is convenient in that regard). Truth is, the total number of major daily events is decreasing (which is always a good thing). Most of Ava's day is spent playing, eating, sleeping, and the occasional television show or too (Ava likes American Idol, Sports Center, and SpongeBob).
I will continue to post each day's highlights until we finally make it home, and at that time Teresa and I will decide at what the update frequency will be (weekly/monthly/periodically based off events).
No, it's not because I am hurriedly trying to update this blog (though it is convenient in that regard). Truth is, the total number of major daily events is decreasing (which is always a good thing). Most of Ava's day is spent playing, eating, sleeping, and the occasional television show or too (Ava likes American Idol, Sports Center, and SpongeBob).
I will continue to post each day's highlights until we finally make it home, and at that time Teresa and I will decide at what the update frequency will be (weekly/monthly/periodically based off events).
Sat 01/10/09 - - A Day to Cheer About
Ava slept most of the night again with only a brief period of night-time fuss.
Ava's morning weight came in at 3.6 kilograms.
The morning labs revealed that Ava's blood counts drastically improved from the previous day due to the transfusion which took place the evening before. All other markers like electrolytes and white blood cell count were within normal levels as well. Still Ava has not come back positive for MRSA.
The surgeon who performed the first surgery stopped by and actually applauded by how well Ava looked and how everything was progressing now. He was further pleased by how Ava was tolerating her feeds with the CorPak and ordered a systematic increase in the amount of feeds given to her each hour, with the goal being to get to 13cc per hour.
If Ava can keep tolerating her feeds as the staff increases the volume, the intravenous fluids (TPN) can be stopped.
Ava was still receiving Heparin for the clot therapy, but there were some preliminary discussions about switching her over to baby aspirin or some other medication that she can go home with. The echo scheduled for Monday will further guide what action they take.
For majority of the day, Ava rested. Overall, the day was pretty uneventful until in the evening when we were moved to a standard hospital room again.
The hope is that by having a room verses the openness of the pod that she can rest easier while us getting some much needed privacy.
Once we settled into our new homestead, we all went to sleep.
Though today was pretty uneventful, we were pleased because we have had enough excitement to last the next 18 years.
Ava's morning weight came in at 3.6 kilograms.
The morning labs revealed that Ava's blood counts drastically improved from the previous day due to the transfusion which took place the evening before. All other markers like electrolytes and white blood cell count were within normal levels as well. Still Ava has not come back positive for MRSA.
The surgeon who performed the first surgery stopped by and actually applauded by how well Ava looked and how everything was progressing now. He was further pleased by how Ava was tolerating her feeds with the CorPak and ordered a systematic increase in the amount of feeds given to her each hour, with the goal being to get to 13cc per hour.
If Ava can keep tolerating her feeds as the staff increases the volume, the intravenous fluids (TPN) can be stopped.
Ava was still receiving Heparin for the clot therapy, but there were some preliminary discussions about switching her over to baby aspirin or some other medication that she can go home with. The echo scheduled for Monday will further guide what action they take.
For majority of the day, Ava rested. Overall, the day was pretty uneventful until in the evening when we were moved to a standard hospital room again.
The hope is that by having a room verses the openness of the pod that she can rest easier while us getting some much needed privacy.
Once we settled into our new homestead, we all went to sleep.
Though today was pretty uneventful, we were pleased because we have had enough excitement to last the next 18 years.
Fri 01/09/09 - - A Lateral Move
The first night in the cardiac unit was not too bad.
Ava was fussy for only a little bit and slept through most of the night.
Though we were told on Thursday that the CorPak was correctly placed in the intestines, the morning x-ray showed that it was coiled at the base of Ava's stomach.
It was decided that when the upper GI test was to be performed later that morning that they would use fluroscopy to help advance it.
Ava's weight as of this morning was 3.5 kilograms. On 12/12/08 during the pre-surgery consultation Ava weighed 3.3 kilograms.
Morning rounds revealed that Ava's blood counts were low and that she would need a transfusion. The sound of a transfusion gave Teresa and I an uneasy feeling, however, we knew it was a necessary part of the recovery process. We consented.
One concern that Teresa had and brought up to the cardiac therapy nurse was that the unbandaged portion of Ava's wound appeared to start opening again. Both of us were concerned because any open entry into the body could be a source of infection and her immune system has been through enough already.
The cardiac therapy nurse cleaned her wound and replaced the bandage. Overall, the wound is healing nicely and it was decided that the dressing should be changed every three days.
Today was also another moving day as we were moved from a standard two-patient hospital room to a section in a pod in the same unit. This was done because it was discovered that Ava's roomie had an upper respiratory infection prior to being admitted to the unit and was still exhibiting some of the symptoms. In the pods, there is a stricter emphasis on germ-free. We were promised a standard room as soon as one freed up as the plan is to be in the hospital for about another month according to the Infectious Disease doctor.
In the afternoon, Ava was taken down to radiology for the upper GI test, which still showed that Ava was still not emptying her stomach at an efficient level. While discussing the previous tests Teresa pointed out that Reglan, which is used to speed up the emptying of the stomach, was administered immediately prior to the first GI test - - which is why it probably emptied so fast compared to the gastric emptying examination where she only emptied her stomach at a 2% rate.
The radiologist decided to manually maneuver the CorPak into Ava's intestines. With much patience (Ava was not happy and made it difficult), they were successful. Placement was verified again and Ava was cleared to resume formula feeds.
Ava was exhausted from all of the tests, so she slept most of the evening. The blood transfusion was carried out and she was started on a low amount of continuous feeds.
Ava was fussy for only a little bit and slept through most of the night.
Though we were told on Thursday that the CorPak was correctly placed in the intestines, the morning x-ray showed that it was coiled at the base of Ava's stomach.
It was decided that when the upper GI test was to be performed later that morning that they would use fluroscopy to help advance it.
Ava's weight as of this morning was 3.5 kilograms. On 12/12/08 during the pre-surgery consultation Ava weighed 3.3 kilograms.
Morning rounds revealed that Ava's blood counts were low and that she would need a transfusion. The sound of a transfusion gave Teresa and I an uneasy feeling, however, we knew it was a necessary part of the recovery process. We consented.
One concern that Teresa had and brought up to the cardiac therapy nurse was that the unbandaged portion of Ava's wound appeared to start opening again. Both of us were concerned because any open entry into the body could be a source of infection and her immune system has been through enough already.
The cardiac therapy nurse cleaned her wound and replaced the bandage. Overall, the wound is healing nicely and it was decided that the dressing should be changed every three days.
Today was also another moving day as we were moved from a standard two-patient hospital room to a section in a pod in the same unit. This was done because it was discovered that Ava's roomie had an upper respiratory infection prior to being admitted to the unit and was still exhibiting some of the symptoms. In the pods, there is a stricter emphasis on germ-free. We were promised a standard room as soon as one freed up as the plan is to be in the hospital for about another month according to the Infectious Disease doctor.
In the afternoon, Ava was taken down to radiology for the upper GI test, which still showed that Ava was still not emptying her stomach at an efficient level. While discussing the previous tests Teresa pointed out that Reglan, which is used to speed up the emptying of the stomach, was administered immediately prior to the first GI test - - which is why it probably emptied so fast compared to the gastric emptying examination where she only emptied her stomach at a 2% rate.
The radiologist decided to manually maneuver the CorPak into Ava's intestines. With much patience (Ava was not happy and made it difficult), they were successful. Placement was verified again and Ava was cleared to resume formula feeds.
Ava was exhausted from all of the tests, so she slept most of the evening. The blood transfusion was carried out and she was started on a low amount of continuous feeds.
Still Catching Up !
Still trying to update the blog between Teresa and Ava's sleep schedule and my work schedule.
The good news is that Teresa has been keeping really good daily notes, that I will type out and post to the blog - - I am going to see how much I can update this afternoon.
Today was the day of the spaghetti dinner, and though Teresa and I remained at the hospital with Ava (watching SpongeBob SquarePants of course) we have heard that it was a huge success.
It was great to hear about all of those who braved the elements and slick roads to support Ava -- I cannot express enough the gratitude that Teresa and I feel having such great family and friends as we do. Ava is very lucky and blessed.
That's all for now... I have some catching up to do.
The good news is that Teresa has been keeping really good daily notes, that I will type out and post to the blog - - I am going to see how much I can update this afternoon.
Today was the day of the spaghetti dinner, and though Teresa and I remained at the hospital with Ava (watching SpongeBob SquarePants of course) we have heard that it was a huge success.
It was great to hear about all of those who braved the elements and slick roads to support Ava -- I cannot express enough the gratitude that Teresa and I feel having such great family and friends as we do. Ava is very lucky and blessed.
That's all for now... I have some catching up to do.
1/15/09
New Pictures Added
Picture of Ava smiling on 01/12 uploaded on 01/13.
Picture of Ava before "Flashes of Hope" photo shoot uploaded on 01/14.
For those who are following this blog, just keeping you informed.
Note: If you want to follow this blog and be notified of updates, click on the link that states 'Follow this blog' underneath the Quotation of the Day.
Picture of Ava before "Flashes of Hope" photo shoot uploaded on 01/14.
For those who are following this blog, just keeping you informed.
Note: If you want to follow this blog and be notified of updates, click on the link that states 'Follow this blog' underneath the Quotation of the Day.
Thurs 01/08/09 - - Moving On Up...
The day started out with a couple doses of good news:
An x-ray was taken and revealed that there was still some residual contrast solution from the previous day's test - - so there would be no repeating of the barium GI x-ray today. The hope was that the solution will further progress in her intestines and it could be performed later today or tomorrow.
Also because of the residual the corpak placement could not be verified. There was still some belief that the corpak needed to go in a little further so they manually advanced it forward and administered erythromycin (another antibiotic, but can also be used to increase gastric motility to aide with the advancement). Following the advancement they had Ava lay on her right side for three hours.
Another attempt at an x-ray was carried out and the corpak placement was successfully verified. They are going to increase the Pedialyte to combat dehydration which has set in and slowly start offsetting the IV fluids with continuous formula feeds.
In the afternoon, Teresa and Papa packed up our "PICU home" and migrated to the step-down unit. The staff were all there to welcome Ava as she spent much of her time prior to the surgery there.
Though we were one step closer to home, there was one caveat - - Ava had to give up her "big bed" for a standard-issue hospital crib (looks like a steel cage, but that's me). I will try to get a picture of Ava in her big bed from the digital camera and upload it to this blog.
- 1] Ava was stable enough to leave the PICU and go to the cardiac step-down unit
- 2] There was no need to test her blood for MRSA as the cultures remain negative
An x-ray was taken and revealed that there was still some residual contrast solution from the previous day's test - - so there would be no repeating of the barium GI x-ray today. The hope was that the solution will further progress in her intestines and it could be performed later today or tomorrow.
Also because of the residual the corpak placement could not be verified. There was still some belief that the corpak needed to go in a little further so they manually advanced it forward and administered erythromycin (another antibiotic, but can also be used to increase gastric motility to aide with the advancement). Following the advancement they had Ava lay on her right side for three hours.
Another attempt at an x-ray was carried out and the corpak placement was successfully verified. They are going to increase the Pedialyte to combat dehydration which has set in and slowly start offsetting the IV fluids with continuous formula feeds.
In the afternoon, Teresa and Papa packed up our "PICU home" and migrated to the step-down unit. The staff were all there to welcome Ava as she spent much of her time prior to the surgery there.
Though we were one step closer to home, there was one caveat - - Ava had to give up her "big bed" for a standard-issue hospital crib (looks like a steel cage, but that's me). I will try to get a picture of Ava in her big bed from the digital camera and upload it to this blog.
1/14/09
Wed 01/07/09 - - Ava Shines! (for the camera)
There were no major happenings through the night which is always a good thing.
In the morning, it was suggested by the resident that they insert another type of feeding tube called a corpak down into Ava's intestines. Like the NG, this tube is fed through the nose. The reasoning behind this is to perform continuous feeds of formula which is better nutritional-wise than the TPN/lipid IV feeds that Ava has been receiving through the NG. She needs to gain weight to continue growing and aide with the recovery process.
After discussing the corpak with the PICU doctor, we consented and the tube was inserted bedside. An x-ray was taken shortly after to verify placement, however, there was some concern that it did not settle exactly how they would like in the intestines.
Around 8:00, Ava was escorted by Teresa and Papa to Nuclear Medicine for the gastric emptying test. Though she tried very hard she didn't do so well with the test. The result was that Ava's stomach was found to empty at a rate of 2% (very, very slow).
While concern started to settle in with the results, we were informed that this sometimes happens to children who go through open heart surgery - - not to mention that Ava went through it twice. It was also noted that this complication is hard to predict prior to surgery, but is treatable. The good news is that everything else appears to be okay, so the prognosis is that her stomach function will return with time.
Following the test, Ava had a photo shoot with "Flashes of Hope" (www.flashesofhope.org). FoH is a non-profit that takes portraits of children that have been faced with life-threatening illnesses. The social worker assigned to Ava at the Cleveland Clinic believed Ava was a great candidate and organized the photo shoot with them.
The shoot involved many pictures of Ava. We dressed her up in her Christmas dress for the very first time (see the pictures to the right). From the test, Ava was very tired and the shoot was carried out while she slept. We can't wait to see how they turned outl because there is no better way to capture a child's innocense than observing them peacefully asleep.
FoH will compile all of the photos and put them on a CD-ROM for us. Our hope is to make them available on this blog as soon as they are received (best guess is March/April).
It was determined that Ava would not have an echo until the 12th because they want to see how the clot will change over a larger time span.
In the evening, the vacuum dressing was replaced with the hydro gel bandage. The surgeon is really pleased with how her wounds are healing which is assuring for us.
Ava was started on a low dose of Pedialyte to help the corpak get through the pyloric sphincter and settle into the intestines.
I spent the night at home by my lonesome while Papa pulled an extra Ava-Watch shift at the hospital with Teresa due to the nasty road conditions.
Besides the issues with feeds and Ava's stomach everything remains status quo - - blood cultures are still negative for MRSA and she remains in good spirits.
In the morning, it was suggested by the resident that they insert another type of feeding tube called a corpak down into Ava's intestines. Like the NG, this tube is fed through the nose. The reasoning behind this is to perform continuous feeds of formula which is better nutritional-wise than the TPN/lipid IV feeds that Ava has been receiving through the NG. She needs to gain weight to continue growing and aide with the recovery process.
After discussing the corpak with the PICU doctor, we consented and the tube was inserted bedside. An x-ray was taken shortly after to verify placement, however, there was some concern that it did not settle exactly how they would like in the intestines.
Around 8:00, Ava was escorted by Teresa and Papa to Nuclear Medicine for the gastric emptying test. Though she tried very hard she didn't do so well with the test. The result was that Ava's stomach was found to empty at a rate of 2% (very, very slow).
While concern started to settle in with the results, we were informed that this sometimes happens to children who go through open heart surgery - - not to mention that Ava went through it twice. It was also noted that this complication is hard to predict prior to surgery, but is treatable. The good news is that everything else appears to be okay, so the prognosis is that her stomach function will return with time.
Following the test, Ava had a photo shoot with "Flashes of Hope" (www.flashesofhope.org). FoH is a non-profit that takes portraits of children that have been faced with life-threatening illnesses. The social worker assigned to Ava at the Cleveland Clinic believed Ava was a great candidate and organized the photo shoot with them.
The shoot involved many pictures of Ava. We dressed her up in her Christmas dress for the very first time (see the pictures to the right). From the test, Ava was very tired and the shoot was carried out while she slept. We can't wait to see how they turned outl because there is no better way to capture a child's innocense than observing them peacefully asleep.
FoH will compile all of the photos and put them on a CD-ROM for us. Our hope is to make them available on this blog as soon as they are received (best guess is March/April).
It was determined that Ava would not have an echo until the 12th because they want to see how the clot will change over a larger time span.
In the evening, the vacuum dressing was replaced with the hydro gel bandage. The surgeon is really pleased with how her wounds are healing which is assuring for us.
Ava was started on a low dose of Pedialyte to help the corpak get through the pyloric sphincter and settle into the intestines.
I spent the night at home by my lonesome while Papa pulled an extra Ava-Watch shift at the hospital with Teresa due to the nasty road conditions.
Besides the issues with feeds and Ava's stomach everything remains status quo - - blood cultures are still negative for MRSA and she remains in good spirits.
1/12/09
Tues 01/06/09 - - GI (NOT for "Government Issue")
Other than a brief discussion on Ava's blood pressure (it was a little higher than normal), morning rounds were pretty congruent with the previous ones. All labs fell within normal values, the MRSA blood cultures were still negative, and overall Ava was stable. The staff decided to just monitor Ava's blood pressure for now and treat if it becomes necessary.
Today's day was centered around the first GI study - - the upper GI x-ray. Teresa and Papa took Ava down to radiology where she was given a contrast solution in her NG tube. Under an x-ray machine, the radiologist tried to follow the solution through the stomach into the intestines, however, her stomach emptied faster than anticipated and the opportunity to capture the emptying on film came and went before the radiologist could react.
Though it was good news that Ava's stomach did empty, the test was invalid and was to be rescheduled for Thursday. Tomorrow, Ava would visit Nuclear Medicine and go through a gastric emptying procedure to determine the rate in which her stomach empties into the intestines.
Following a long morning at Radiology, Ava slept. There were many visits by the various teams that are responsible for Ava's recovery, and everyone was commenting on how well Ava has progressed despite all of these set backs.
In the evening the vacuum dressing which was changed just yesterday was found to have a small leak. The surgeon was paged and it was determined that in the morning that the dressing is to be changed over from the vacuum seal to the hydro gel bandage.
Today's day was centered around the first GI study - - the upper GI x-ray. Teresa and Papa took Ava down to radiology where she was given a contrast solution in her NG tube. Under an x-ray machine, the radiologist tried to follow the solution through the stomach into the intestines, however, her stomach emptied faster than anticipated and the opportunity to capture the emptying on film came and went before the radiologist could react.
Though it was good news that Ava's stomach did empty, the test was invalid and was to be rescheduled for Thursday. Tomorrow, Ava would visit Nuclear Medicine and go through a gastric emptying procedure to determine the rate in which her stomach empties into the intestines.
Following a long morning at Radiology, Ava slept. There were many visits by the various teams that are responsible for Ava's recovery, and everyone was commenting on how well Ava has progressed despite all of these set backs.
In the evening the vacuum dressing which was changed just yesterday was found to have a small leak. The surgeon was paged and it was determined that in the morning that the dressing is to be changed over from the vacuum seal to the hydro gel bandage.
Mon 01/05/09 - - What's Up With Ava's Stomach?
Overnight, about 40cc of formula was drawn out of Ava's stomach using the NG tube. The problem is that Ava had not had any formula for about 24 hours, so this is a clear indication that the next major obstacle in her recovery would be to figure out what was up with her digestive system and overcoming it.
At 08:00 Ava was prepped, sedated, and underwent a vacuum dressing change under the supervision of the surgeon and his staff. Per the surgeon, Ava's wound was looking and the hope is that following the next dressing change they can get away from the vacuum dressing and switch over to a hydro gel bandage.
During morning rounds, it was decided that the GI team should come in and evaluate Ava, trying to figure out why she is not tolerating her feeds. Also, all labs came back normal and the blood cultures remained negative for MRSA. Because of Ava's intolerance to digestion - all oral meds were switched over to intravenous.An echo was performed and the clot they are watching was still stable and unchanged at this point. The belief is that the heparin therapy is working and that Ava could possibly be switched over to coumadin or other med which ultimately they could send her home with.
The GI team performed the evaluation and decided that they would like to perform a barium GI x-ray study and a gastric emptying study. They would be looking for the stomach's ability to empty into the intestines while searching for any blockages or abnormal twists in the intestines. The first test (barium x-ray) is scheduled for tomorrow.
At this point the root cause of Ava's digestive problems are not really known. There is some suspicion that the misplaced NG tube is the culprit as well as nerve disruption from the second surgery (vagus nerve).
Frustration is starting to set in for Teresa and I at this point. It seems like anytime we get complacent with Ava's progress or start to really have a positive outlook on things some event happens and we find ourselves behind once more.
The Catch Up...
OK, so only a dinner update since 01/04 and the masses have made your point - - "Bryan please update the blog already!!!"
Honestly, I haven't forgotten about the blog or am intentionally depriving the masses of the details surrounding Ava's recovery.
Truth be told, Ava has been doing great overall. Her days and nights have been a lil' confused so Teresa and I are still trying to fine-tune sleep around my work schedule and the occassional blizzard.
Please continue to check back as I will post the daily updates from 01/04 to the present.
Honestly, I haven't forgotten about the blog or am intentionally depriving the masses of the details surrounding Ava's recovery.
Truth be told, Ava has been doing great overall. Her days and nights have been a lil' confused so Teresa and I are still trying to fine-tune sleep around my work schedule and the occassional blizzard.
Please continue to check back as I will post the daily updates from 01/04 to the present.
1/9/09
Spaghetti Dinner Update...
What: Spaghetti Dinner Benefit for Ava
When: Sunday, January 18th 2009
Where: St. Agnes Catholic Church - Elyria, OH
Time: 12:00 - 02:30pm
Price: $5.00 adults / $3.00 children
Address: 611 Lake Ave / Elyria, OH 44035
When: Sunday, January 18th 2009
Where: St. Agnes Catholic Church - Elyria, OH
Time: 12:00 - 02:30pm
Price: $5.00 adults / $3.00 children
Address: 611 Lake Ave / Elyria, OH 44035
1/4/09
Sun 01/04/09 - - Feeding Fuss Day #3
Overnight, Ava became sick and threw up majority of her 01:30 feed.
The resident decided to hold all feeds until the morning x-ray.
The morning x-ray again showed that her stomach was again distended. The belief was that it was air, however, upon trying to expel it there was a large amount of undigested formula which was found. The nurses continued to expel air and residual formula. Following the relief effort, Ava became very comfortable and began to sleep.
During morning rounds there were many ideas kicked around by the staff, including inserting an additional oral tube to help expel the air, however, we pushed for them to exhaust all options with the existing NG tube.
They decided to remain a little patient with the situation, increasing the dosage of reglan while just supplementing Ava with IV fluids to circumvent dehydration. They don't want to push feeds yet because of how much residual formula they keep finding in her stomach (as late as 18:00 today there were traces of undigested formula), and, because she is going to have the vacuum dressing changed on her chest incision tomorrow morning (which means they would have to cut her feeds due to this is a surgical procedure).
Ava was able to rest pretty much most of the day, sometimes in her big bed and sometimes in mommy's arms. Every once in awhile, she would shoot us to smile to let us know that everything is going to be alright (Teresa really likes it when she does this).
Teresa and I wanted to take another time out to say thank you to everyone who has provided us with food or snacks for us during our hospital stay. We don't believe that we have eaten this well ever, and it sure beats what they have to offer here in the hospital. We are very grateful for your generosity.
The resident decided to hold all feeds until the morning x-ray.
The morning x-ray again showed that her stomach was again distended. The belief was that it was air, however, upon trying to expel it there was a large amount of undigested formula which was found. The nurses continued to expel air and residual formula. Following the relief effort, Ava became very comfortable and began to sleep.
During morning rounds there were many ideas kicked around by the staff, including inserting an additional oral tube to help expel the air, however, we pushed for them to exhaust all options with the existing NG tube.
They decided to remain a little patient with the situation, increasing the dosage of reglan while just supplementing Ava with IV fluids to circumvent dehydration. They don't want to push feeds yet because of how much residual formula they keep finding in her stomach (as late as 18:00 today there were traces of undigested formula), and, because she is going to have the vacuum dressing changed on her chest incision tomorrow morning (which means they would have to cut her feeds due to this is a surgical procedure).
Ava was able to rest pretty much most of the day, sometimes in her big bed and sometimes in mommy's arms. Every once in awhile, she would shoot us to smile to let us know that everything is going to be alright (Teresa really likes it when she does this).
Teresa and I wanted to take another time out to say thank you to everyone who has provided us with food or snacks for us during our hospital stay. We don't believe that we have eaten this well ever, and it sure beats what they have to offer here in the hospital. We are very grateful for your generosity.
Sat 01/03/09 - - Feeding Fuss Day #2
Ava slept pretty much all night and made bottle feeding impossible.
The morning x-ray showed that Ava's stomach was distended with air, even without the NG tube.
During the morning rounds, the doctors weighed the pros and cons for re-inserting the NG tube.
Pros
Because the pros outweighed the cons, the NG tube was reinserted and again another 100-plus cc's of air was expelled from her stomach.
She was started on a new medication called reglan to help speed up the gastrointestinal functions and help Ava digest her feeds.
Teresa and I are keeping our spirits high that Ava will resume normal GI function and start tolerating her feeds.
There was no echo performed today (or tomorrow) due to the weekend.
Blood cultures remain negative since 12/27, so the staff continues to maintain the current levels of antibiotics (vancomycin and gentamicin) through IV.
There was a discussion with the infectious disease doctor and it looks like we have around four or so more weeks of IV antibiotic treatments left. Because of Ava's size and the aggressive nature of the infection it also is looking like the remainder of the treatment will be carried out at the Cleveland Clinic. While this is frustrating to Teresa and I (we have been at the Clinic with Ava since 12/16), we are keeping positive and taking things one day at a time.
On a light note - - on the morning x-ray we can see Ava's teeth coming in.
The morning x-ray showed that Ava's stomach was distended with air, even without the NG tube.
During the morning rounds, the doctors weighed the pros and cons for re-inserting the NG tube.
Pros
- Ava's stomach can be manually decompressed, mitigating the risk of aspiration or increased pressure on her heart
- Assurance that Ava is getting all the nutrients necessary to grow and fight the infection
- Misplacement of the NG tube can cause discomfort
- Ava just came off of the NG tube and it was nice to bottle feed her again
Because the pros outweighed the cons, the NG tube was reinserted and again another 100-plus cc's of air was expelled from her stomach.
She was started on a new medication called reglan to help speed up the gastrointestinal functions and help Ava digest her feeds.
Teresa and I are keeping our spirits high that Ava will resume normal GI function and start tolerating her feeds.
There was no echo performed today (or tomorrow) due to the weekend.
Blood cultures remain negative since 12/27, so the staff continues to maintain the current levels of antibiotics (vancomycin and gentamicin) through IV.
There was a discussion with the infectious disease doctor and it looks like we have around four or so more weeks of IV antibiotic treatments left. Because of Ava's size and the aggressive nature of the infection it also is looking like the remainder of the treatment will be carried out at the Cleveland Clinic. While this is frustrating to Teresa and I (we have been at the Clinic with Ava since 12/16), we are keeping positive and taking things one day at a time.
On a light note - - on the morning x-ray we can see Ava's teeth coming in.
Fri 01/02/09 - - Feeding Fuss
Overnight, Ava was really irritable.
She kept Teresa and I on our toes with coughing and spit up and though we were not sure what was going on at the time, we were positive that something wasn't right.
What wasn't right was revealed on the morning x-ray. There were two potential problems revealed:
Eventually, they removed the NG tube (Teresa and I were very happy) and they gave us the green light to bottle feed.
Around noon, Teresa was finally able to bottle feed and hold Ava. They also snuggled together afterwords and Ava took a short nap in mommy's arms.
All blood cultures since 12/27 remain negative for the MRSA infection.
The morning echo did not reveal any growth or change in the clot on her atrium.
As the day wore on, Ava was again irritable and fussy with her feeds, but managed to take a full bottle before day's end.
Our hopes are high that the feedings will get better and we are getting close to finally leaving the PICU.
She kept Teresa and I on our toes with coughing and spit up and though we were not sure what was going on at the time, we were positive that something wasn't right.
What wasn't right was revealed on the morning x-ray. There were two potential problems revealed:
- Ava's stomach was really enlarged, full of air
- The NG tube actually went past the stomach and into the small intestines
Eventually, they removed the NG tube (Teresa and I were very happy) and they gave us the green light to bottle feed.
Around noon, Teresa was finally able to bottle feed and hold Ava. They also snuggled together afterwords and Ava took a short nap in mommy's arms.
All blood cultures since 12/27 remain negative for the MRSA infection.
The morning echo did not reveal any growth or change in the clot on her atrium.
As the day wore on, Ava was again irritable and fussy with her feeds, but managed to take a full bottle before day's end.
Our hopes are high that the feedings will get better and we are getting close to finally leaving the PICU.
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