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A DAY IN THE LIFE OF SPENCE J. VITALIANO!
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12 NOVEMBER 2008
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Nov 12, 2008 08:01pm (EST)
Well 6 am and the Respiratory Tech informed us the testing was complete. Unofficially he said Spence may benefit from BIPAP rather than CPAP. He said Spence is having Central Apnea spells at night, he was able to get his sats to 100% by increasing his O2 to 1/2 liter of flow through the night. He told us to wait for the doctor to contact us and he expected that the doctor would want another sleep study to determine additional information. So now we're researching something new - seems like a constant thing with Spence. By the time he's a teenager I mine as well have went to med school - LOL!!
He had a uneventful day and isn't as sleepy today as he has been which is positive. The nurse practitioner from the neurology clinic talked to me about Spence's status the other night and about his seizure last week. She's concerned that if he stays sleepy until this weekend (which he isn't now) or if he has more seizures they may need to use another seizure medication. I asked her more about the EEG and how bad it really was and she said he was seizing up on every frame of the EEG test which was a 20 minute test. She said according to the EEG their was no way he could have been developing effectively since his brain was seizing so much. We've seen a significant improvement in his development, head control, trunk control, & attention span since they started him on the medication so I'm very hopeful for him.
Only time will tell - Spence is clearly getting the best possible care any parent could ask for. Thank God we're near CHOP.
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Posted by Spence | Comments: (1) | Permalink
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10 NOVEMBER 2008
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Nov 10, 2008 07:50pm (EST)
Spence's Endocrinologist called me tonight and says the results of the CRH test say he's fine and that he's producing the hormone properly which is really good because that would create more long term problems otherwise.
Also I haven't really mentioned it but we've been slowly weening Spence off his Reglan and he's now down from 4 doses (QID) to once per day and doing great so far.
Today we got an appointment date for the Feeding Clinic at CHOP as well which will help us determine a plan to start his oral feeds. I'm sure they'll want to schedule a swallow study.
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Posted by Spence | Comments: (0) | Permalink
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7 NOVEMBER 2008
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Nov 07, 2008 07:46pm (EST)
Today Spence had his CRH Test and Raquel was accompanied out there by our newest nurse Teresa - she's been great so far. Things went fairly uneventful although the nurse had a challenge getting the IV started on Spence. Funny that Teresa asked if we had considered a port - I have many times but I've been told it's too much of a risk for infection.
With him only needing lab draws every two months it's not as bad as before, he does seem to be getting better too. He was much harder to stick before.
We should get the results in a week or so from his Endocrinologist.
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Posted by Spence | Comments: (0) | Permalink
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4 NOVEMBER 2008
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Nov 04, 2008 07:43pm (EST)
Spence had therapy today with his development therapist which went well. I will start adding more info about his sessions in the near future we've just been so busy with his appointments, my work, and coordination in general.
On a negative side Spence had his first documented seizure today. It wasn't like what we had seen him do before - staring spells. This one he rolled his eyes up and back into his head, arched his head back, and also desat'd on the pulsox. The nurse witnessed the whole thing so it was documented. Kind of scary, I'm glad we're catching all of this early though for him.
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Posted by Spence | Comments: (0) | Permalink
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SPENCE UPDATED DIAGNOSIS LIST
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Nov 04, 2008 08:09am (EST)
Here's is Spence's current list of diagnosis:
Primary:
Spastic Quad Cerebral Palsy
Secondary:
1. 26 week gestational prematurity, 770 grams birth weight
2. Cortical Visual Impairment
3. Grade III Intraventricular Hemorrhage
4. Post-hemorrhagic Hydrocephalus s/p VP shunt placement
5. Hypothyroidism, acquired
6. Central Diabetes Insipidus
7. Hypertension
8. Oteopenia
9. Bilateral Nephrocalcinosis
10. Bronchopulmonary Dysplasia w/ Pulmonary Hemorrhage
11. GERD s/p Nissen fundoplication & gastronomy tube placement
12. Global Developmental Delay
13. Failure to Thrive
14. Aspiration Syndrome
15. Swallow Dysphasia
16. Seizure (PSYMOTR EPIL W/O INT EPI)
17. Retinopathy of Prematurity s/p laser surgery
18. Bilateral inguinal hernia s/p repair
19. History of urinary tract infections
20. Pendular nystagmus
21. Temperature instability
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Posted by Spence | Comments: (4) | Permalink
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3 NOVEMBER 2008
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Nov 03, 2008 07:39pm (EST)
Today was Spence's first appointment with the CHOP GI Clinic and of course - outstanding! The doctor wants to get Spence weened from his Reglan, then eventually from the Prevacid most likely to Zantac, and he also agreed to replace his current button with a Mic-Key which would make things so much easier for us. So a very good appointment. Spence did really great during the switch of buttons which they did on the spot for us. The GI nurse explained everything to us, showed us how to use the new button, and gave us all her contact information. The doctor was surprised because Spence did cry a bit when she yanked the old button out because it's not like a Mic-Key with the ball of water, his old button had a mushroom that uses a special tool to override the vale & compress it but the nurse has to pull it out very firmly. He bled a little but he didn't make a peep. The doctor said everyone in the clinic would normally know it was changed out with the cries. At the end the doc wrote us new orders for our nurses - yep I'm getting smart with the nursing stuff.
Another great experience with CHOP. I really wish I could get involved with the Parent Advisory Board - they are an amazing hospital and they staff is so good.
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Posted by Spence | Comments: (0) | Permalink
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29 OCTOBER 2008
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Oct 29, 2008 07:07pm (EST)
Well today we dressed up Spence in the morning for his first Endocrine & Pulmonary Clinic visits here with CHOP at the Voorhees Specialty Center. Of course the boots didn't stay on past a few minutes so it was great for the pictures.
His appointments went fairly well aside from a few frustrating moments with his nurse.
His Endocrinologist is outstanding and she said he'll only require lab draws every two months at this point. She's confident that based on his recent lab reports his Diabetes Insipidus is being managed well. She was most concerned with his hypothyroidism and the fact that he may not be producing any Corticotropin hormone so she wants him to have a CRH test at the main hospital. She could find anything in his records to show he had been tested previously so she felt it was appropriate. Also we discussed our concerns about his growth and that he may have a growth hormone issue & she agreed. She told us he very likley may have an issue however, at this time it may be best to see how he does developmentally before any further testing or decisions are made. She as very up front in explaining how many parents of mobility disabled children find it easier if their smaller so in Spence's case if he's going to have problems with mobility it might be better to let him be small rather than having to carry around a tall child. On the other hand if we find he starts to excel & do well developmentally then we can address the growth hormone issue and do something about it, she said their wasn't any need to feel rushed.
Of course as I said early we had an awkward moment and it was regarding the nurse who seems to hear one thing contrary to what the doctor stated. She heard lab draws every two month for only the Thyroid and assumed we needed lab draws every other week still for the DI. I debated with the nurse after the doctor left the room for a brief moment and then gave up, left the room, and found the doctor to clarify to the nurse. A bit irritating to say the least; but I think more so it's just having someone who I feel was trying to be intrusive and dictate to us what needed to be done - that's what doctors & parents are for not the home nurse (in my judgment, maybe it's just me). Also we found it much more stressful to have the nurse accompany us than for us to do it ourselves alone - we just have our ways and we have a routine and it's less stressful - stress is huge in our life & anything to reduce it is better. However, when I'm not around I worry about Raquel and would like to see a nurse go with her if possible - I think Raquel doesn't agree though (she doesn't like to feel rushed which has happened with the nurses) so we'll see. I know the insurance company is now a factor so our hands may be tied.
Anyway after the endocrine appointment we went down the hall to the Pulmonary visit and his new doctor was a bit on the quiet side, a great listener, and when we asked him questions he was amazingly easy to understand. I was again impressed with him as well. He had a few concerns about Spence who obviously has had a rough history with his pulmonary status. He felt his dosage of Flovent was too high at this time so he wrote a scrip to take it down from 110 mcg to 44 mcg. His reasoning was that he may have needed it early on after discharge from the NICU and when he was having significant respiratory problems however, now he's been fairly healthy so he needs less steroid treatment. He said the steroid can actually inhibit development of the lungs if it's abused by using a higher dose than is necessary.
His other concern is that Spence may be a candidate for CPAP considering his obstructive apnea, snoring at night, continued desats, and continued need for O2. So he wants him to get a sleep study at the main hospital to see what he requires. He advised us to ask to be placed on the move up list so we can be seen sooner.
So a really very productive day to say the least and the doctors, staff, and everything with CHOP has just been
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Posted by Spence | Comments: (0) | Permalink
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