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MAX'S JOURNAL
mcunnick |
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FIRST SNOW AND DREADFUL FLU SEASON
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Oct 16, 2009 05:51pm (EST)
It snowed yesterday. I took a picture of our backyard this morning. The dreadful flu season is officially here.
Max has regained his appetite up to 50% level of what it used to be, once we stopped anitbiotic. Knowing how quickly things can go downhill, I am just grateful for whatever amount he takes. Max is still having cough spells, early in the morning and late at night. Once it starts, it lasts for a couple of hours. He squeeze out wet and rough coughs from the bottom of his chest and his face turns bright red. It is really hard to watch as nothing seems to help once the cough starts. It only stops after he coughs out handful of mucous and there is nothing to come out. In a way, I don't blame him for not wanting to eat. His throat must be really sore after days of coughing streak.
All the viral flu test came back negative. So it was not viral pneumonia. Dr suspected that he had a little cold somewhere and his airway just flared up. I asked him whether sending him to daycare would expose him to more germ or make him sick more frequently. Dr said, 'No, you guys might be bring germs from work and the day care has only handful number of kids'. You see, Max never ever got sick or had caught a cold until the middle of August. A week after we sent him to daycare, we saw a snorty nose for the first time. After that every other weeks, he would have a cold. His daycare charge nurse telling me, "none of other kids are sick. Max is the only one gets sick all the time", really really did not help my feelings either. Well, none of them are 25 weeker with chronic lung disease requiring 7 months of hospital stay.
I am torn. Knowing how much Max likes to be with other kids and how well he was doing with all the therapies given at the daycare, it is hard to consider to pull him out during the flu season. Everybody else is saying that it might not be the daycare causing him to catch germs so often. I don't know what to do.
100_2881
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Posted by mcunnick | Comments: (4) | Permalink
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UNNECESSARY TREATMENT
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Oct 12, 2009 02:51pm (EST)
So, I took Max to his ped. It turns out that he does not have much of ear infection and the antibiotic that a NP prescribed on Friday for supposedly ear infection is known to have adverse side effects such as killing taste buds, nausea, appetite suppression. I guess I have the right to be mad at the NP since she f*** up Max's feeding which was not the easiest thing to begin with. In addition, she missed the obvious crackling in his lung.
We took X-ray on Max's lung and his ped said he has mucous build up in his lung. Dr thinks that Max has some sort of viral infection and ordered tests for RSV and other flu causing virus. Max does not act sick right now, but he lost 10 oz over the weekend due to vomiting and refusal to eat. We were sent home with a nebulizer, xopanex, pulmicort and order to "PUSH" liquid intake. If we cannot get enough fluid by tomorrow, we will need to give him IV fluid and be possibly looking at hospital admission. His Dr and I am on the same page that we would avoid hospitalization as much as we can. So we will see.
Thanks for all the kind words. It means a lot.
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Posted by mcunnick | Comments: (4) | Permalink
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SUDDEN REFUSAL OF BOTTLE
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Oct 11, 2009 04:54pm (EST)
Max has been sick with a cold for a couple of weeks now. On Friday, I took him to dr's office and found out that he had an ear infection. We started antibiotics on Friday night. When he woke up on Saturday morning, he decided to close his mouth shut toward any liquid. Cold or warm, in a bottle or in a cup, with mommy or daddy, pediasure or formula..It did not matter. So overnight his intake dropped from over 30 oz per day to 12 oz per day. Even that 12 oz, I could only feed him when he was falling asleep. I am just praying that I could get him to drink enough while he is sleeping so that he would not get dehydrated.
He occasionally did not want his bottle, but nonetheless he opened his mouth and tasted a bit, then stopped. Now, this refusal is something totally different. His mouth is fused shut. He pushes away and bangs away on bottle with all mighty heart.
Is it because we changed his formula to pediasure? Is it the antibiotic that made him nauseous? Or did we do enough of sneaking in bad tasting medicine into his bottle and made him abhor the bottle? I do not understand but am surely getting frustrated.
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Max is pretty sick. I think it hurts for him to suck on things and since his nose is so stuffed he can't breath while he is eating. He would not drink any juice, water, or different formula out of bottle. We gave him little bit of water out of cup and that's about it. We just have to find a way to give him antibiotics so that he can fight off the ear infection. I feel it was immature decision to go back to work and to have him go to daycare to be exposed to all the germs.
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Posted by mcunnick | Comments: (5) | Permalink
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GRAVITY OF THE SITUATION
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Sep 29, 2009 06:45am (EST)
I have been trying forever to get ANY response from Max's pediatrician's office regarding the Synagis and flu shots that I requested long before October rolls over. When I initially asked those shots to be arranged at the beginning of October, His ped was super nice and he promptly requested his nurse to take care of it. Then weeks passed by without hearing anything. I called, called, and called. I have sent numerous messages to the Dr. office via phone or Dr's email account. Still Nothing, none, nada.
It is very typical for medical profession to remain silent ie no response when they don't have what the patient asked for yet or when the problem is too complicated for them to handle. The problem is that they do not understand that "No response" and "waiting" itself is what is even harsher on the patient or their family not the response itself that they have to deliver. If someone just could pick up the phone and tell, "sorry we had a problem here and there" or "sorry we don't have anything yet", then I could prepare for myself for what to do next and all the anxiety that I am having would be gone. Just say something!
The gravity of the situation involving sick childs does not feel the same from the medical profession's end as from the patients end. There is this big chasm between the two and I have to cross it for my child all the time.
Ahhhhhhh. I guess I will have to wait for a couple more days and if not, I will contact Max's pulmonologist or neurologist to find a way to get Synagis, cause they all agreed (including Max's ped) that it is vital for Max to get those shots.
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Posted by mcunnick | Comments: (5) | Permalink
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THIS LOVELY LIFE
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Sep 27, 2009 04:08pm (EST)
I finished reading a memoir of a super-preemie mom, Vicki Forman. It is called, "This lovely life". I don't know why I decided to read it, knowing it would certainly wake up all the ghosts of pain from the last year. But I did. It was utterly tragic and excruciatingly painful yet beautiful. There were so many sentences in the book, literally describing what and how I was dealing with during Max's 7 months NICU stay. Knowing what other people went through and could manage to live after comes as a strange relief.
During this weekend, we have tried to give Pediasure to Max. I don't think he is handling it very well. Our bedroom, car, and my hair all smells like the sickeningly sweet vanilla pediasure from all the projectile vomits Max had with Pediasure. It took a toll on both me and my husband who rarely gets frustrated.
Then, one day, we will put all these oxygen tanks, feeding issues, and developmental delays behind us. Even if we can't cure the issues completely, we will learn how not to be bothered by them and how to live beyond. I will know how to truly live this lovely life with Max and Jess. That much I want to claim that I had learned from the book.
Photo 30
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Posted by mcunnick | Comments: (3) | Permalink
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SEPTEMBER UPDATE
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Sep 24, 2009 05:26pm (EST)
Max is having so much fun at his daycare. I think he likes to hang around with other boys over with mommy at home. He continues to develop gross motor, fine motor skills, but with his own time. We are down to 1/16L of oxygen, which brings the next step of turning the oxygen off completely. We tried to turn off his oxygen for 4 hr last weekend and he did okay. Knowing that he can handle is comforting, yet we are trying to be very conservative about it.
His speech therapist and OT are working on transitioning him to solid food. So far it has been a VERY SLOW process, but he is improving bit by bit. His food intake has increased to 30-33 oz per day, but somehow his weight has been stuck at 17lb 15 oz for two months. I talked to a doctor at the BPD clinic at the Nationwide Childrens Columbus and he suggested to put him on Pediasure. I guess I will have to talk to his pediatrician about that.
I have been very busy getting used to working a full time job. It is hard to juggle the long commute to bring Max down to his day care, the shorter work time, all the dr's appointment, and my career. On top of everything else, the guilt that I am not taking care of him myself during the day and because of that he might not be gaining weight feels very heavy on my chest. My husband keeps commenting how difficult it is to talk to me since Max's birth as I am full of negative thoughts and negative comments. Maybe I do need help, I was thinking. Then, how would anybody overcome the sense of being lost and violated when your child is pulled away from your bloody womb without you realizing what is happening and then placed into the place where he/she almost dies every day for months after months. I am just trying to get by day by day.
Anyway, I did not mean to end this update with heavy note. Max is doing great in every measure (other than his weight gain) and I am truly thankful for that.
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Posted by mcunnick | Comments: (4) | Permalink
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CRANIAL BAND
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Sep 02, 2009 09:57pm (EST)
Max has been wearing a Cranial Band (DOC band) to correct his plagiocephaly (uneven flattening of his head). He needs to wear the band for 23 hr a day with an hour break a day during his bath and the band cleaning. At the beginning, he was sweating quite a bit and would develop red spots here and there. Now at 3rd week of the band wearing, he is not bothered by the band at all.
I guess this all "flattened head" ordeal started when Max extubated himself 4 times trying to move his head while on his tummy. He was banned to be on his tummy for a long time after that and while on an oscillator for 8 weeks his head was forced to his side forever. By the time he was free from a ET tube, he already got so used to sleep on his back, he did not want to be on his tummy any more.
Now I had mentioned something about him being on an oscillator for so long, I don't know how he or we did it. Heavily sedated, forbidden to move around, jiggling entire body with the vibration from the oscillator.... I can't look through movies or photos that were taken while he was on the oscillator as it tears up my heart.
Ah, I did not mean to ramble on the past. What I meant to say was that during 7 months in NICU, lot of things were done to save Max's life and to bring him home and that now we deal with the aftermath, what those long months in NICU stay brought to us, not necessarily his prematurity itself brought to us. I just regret that I did not do a better job at preventing some of those. I simply thought that things would correct themselves overtime once we are out of NICU.
I don't know why I am rambling on and on for just a helmet. After all, it is kinda easy fix compared to all the things that we have to go through to overcome the aftermath of premature birth. I better go and sleep. Thanks for listening.
100_2827_2
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Posted by mcunnick | Comments: (8) | Permalink
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