Saturday, February 23, 2008

Miserable Matthew

Matthew has been nicknamed Miserable Matthew before, but he sure worked hard this week to make sure that it rightfully suited him. The last couple days have been better (or maybe I've just accepted that I'm going to need to hold him more often), hopefully it will stay that way for I'm not sure how long I'll stay sane otherwis. I don't know how I ever survived through the Rebecca and James colic from sun-up to sun-down, at least Matthew is always in bed by 7pm.

So another week has ticked by and we haven't really made any progress in the Matthew puzzle. I'm not sure if we took a step back or just changed the puzzle pieces around a bit.

Vomitting has been introduced into the puzzle. The first episode being last Saturday night after he cried and was unhappy for a period of time in the evening (very, very, very odd for Matthew to be awake past 7pm). With another episode the next morning we thought he might possbily have developed a flu, but when the next time came we realized the inconsist pattern of the vomits likley meant we were dealing with something else. (If a flu should have been 24-48hrs straight and/or more frequently, not just here and there.) We were also dealing with the occasional low-grade fever (which he doesn't tolerate all that well).

We had a bit of a lull in the vomitting from Tuesday night to Friday morning, but if his attitude those days says anything then I much rather clean up vomit once or so a day and be done with it for if I thought he had been unhappy Sunday to Tuesday, he was absolutely the most miserable child on Wednesday and Thursday .... cry and cry, even when held, and hardly napping (altho being held would offer some short-term quiet/peace before he started again). After his Friday morning small vomit he was more toleratable again.

There's always a bright side to things ... his cough is gone, or mostly gone, he has it sometimes that he starts coughing while drinking his bottle, but I almost think that's a lack of concentration on his part (dozing off while drinking) that it's almost like a gag reflex cough, other then that rarely hear a cough ... yah!!! Resp. Rate is still in the 55-65 bpm ... high, but better then initially. His stools continue to be good. Unfortuntaely the rash is still there. It has improved and was doing pretty good, to the point we thought that this too could be attributed to the formula as it was slowly diminishing with the new formula ... but the last couple days we've seen some brigher, short term flare ups again.

So it was back to the Pediatrician to ask the "now what" question. We were suppose to try put him back on his old formula at the end of this week, but as his baseline on the Alimentum is not good we wouldn't benefit from challenging him right now. So we will need to keep him on the Alimentum a bit longer to see if the vomitting settles. Thankfully she filled out forms to have this covered ... it was getting a bit costly at $7.50 a day for the stuff. We talked about allergies but she really doesn't feel that it is likely an allergy as you should get a more straight tolerates or doesn't tolerate reaction, instead of okay for a bit, then not so good. Others have said that their child had symptoms later on for various allergies, but most of the time these seem to be more mood related or discomfort, but not so much vomitting or diarrhea. So I'm not sure what to think on that. She is sending us to the GI (Gastrointestinal) Doctor first, maybe still an allergist afterwards, depending on what GI thinks.

We talked about what this could be, but all she could say is that our boys are a puzzle ... not all that comforting. We did discuss the possibility that we could be looking at something James also had. James was diagnosed with LPI Colitis. Colitis is really a brood definition that doesn't say anything and simply means he had inflammation in his intestines. Usually they narrow colitis down to a specific cause or disorder but with James they could not find one, so they assumed it was related to his LPI since it's rare for a person to have two rare and unusually things. They went with this diagnosis even though there were no other reported cases of colitis in LPI patients. It wasn't until near the end of his life that we began to question if there was something more of different going on in his stomach ... we never got an answer to these questions as his lungs took precedence over this issue. That being said we will always wonder if James had two seperate issues or not (unless the autopsy reveals something, but we're not expecting it too). Could it be then that Matthew suffers from the same stomach issues that James had, which we thought were LPI but may not have been??

Normally we should be able to take comfort in the fact that in most aspects Matthew appears healthy. He looks healthy, acts healthy (okay, is miserable healthy?), is chubby and doing excellent on the charts. So really there shouldn't be anything wrong with him, and if there is it's not likely to be serious!! We wish we could feel confident in such logic, but we know that James also appear well most of his life, deceiving not only the average person, but also the doctors ... appearance is not everything. It gives us a great sense of deja vu as we mop up vomits again, chart formula intakes and bowel movements, check temperatures and resp. rates .... and pray continuously that this will all disappear as quickly as it appeared.

Until this week we had not said anything to the girls about Matthew, although they had realized that I was taking him to the doctors. A light dawned for Marietta this week, probably in connection with the vomits, but she also realized that we were not feeding Matthew solids anymore and so she asked about it. I sat down with her to explain that we had to wait until Matthew was feeling a bit better and the doctors were trying to figure out what was irritating him. She seemed to accept this fine, but it wasn't until Rebecca informed me later that Marietta had told her Matthew was sick and was going to die that I realized what this all means to her. She doesn't say much, just makes her own conclusions (and thinks she's always right) and this makes it difficult for us to know what is really going through her head. Rebecca on the other hand didn't seem the least bit fizzled by this information which struck me on the fact that this is just acceptable to her, people get sick and die ... although knowing Rebecca it's probably just that she hadn't put any thought into it as she's not too deep of a thinker most times. She has clued in that Matthew's not feeling the best as she asked me the other day at lunch time "Hoooooowwwwww many days has Matthew been crying now" with this exasperated sigh that was basically saying "Is he ever going to stop?"

Well this became must more long-winded then I planned. So ... we continue to chug away at the formula issue and continue to fervently pray that Matthew's appearance is indeed accurate and that we'll look back at this not long from now and be able to breath a big sigh of relief. At the same time we pray realistically and ask the Lord to help us to deal with whatever has been set on our path at this time.


Lisa said...

Praying for you, too.

Anonymous said...

Wishing you much strength and patience at this time, Steph. And we'll pray that Matthew's troubles are temporary and fixable.
Alina Noot

Anonymous said...

We continue to remember all of you in our prayers. May the Lord give you the strength you need and also give you peace of mind, for we know that this must be a struggle for you. We pray for wisdom for the doctors that they may soon be able to diagnose Matthew's problem and calm your fears.

Arend and Willa Dale

Anonymous said...

prayers and more prayers for you all. wishing this to be short and an uneventful hiccup in matthew's life. may the answers come quickly.

Anonymous said...

I hope things are figured out for you soon... prayers.

Deb Alkema

Anonymous said...

Praying for you and your loved ones during this time of uncertainty. We all know that the Lord has a plan for each of His children, and we pray that you will find the answers you need during this time of questions.

Anonymous said...

Oh boy...its one thing to try sort through your own emotions and worries about all of this; its another ball of wax to help the girls sort this out. We wish you much wisdom and understanding as you deal with helping them. We also wish you much patience, strength, and trust as you seek answers to Matthew's issues.

Ike & Heather & kids

Anonymous said...

I hope you receive answers fairly soon - although it seems to be a process of elimination. May the Lord give you the patience you need while working this out. Hopefully you can still enjoy some of his sweet smiles inbetween. If you ever need a break you know where to bring him ;-) It would be done with pleasure!!
Talk to you later,
Henrietta VanderLaan